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INDIAN JOURNAL OF
MEDIC AL ETHICS
Vol IX No 3 July-September 2012
(incorporating Issues in Medical Ethics, cumulative Vol XX No 3)
www.ijme.in

THEME ISSUE: MEDICAL HUMANITIES FOR INDIA


Healthcare workers in conflict zones
CDSCO report: the drug industry is king
Effects of sanctions on public health in Syria
Book review: When doctors become patients

INDIAN JOURNAL OF MEDICAL ETHICS


VOL IX NO 3 JULY-SEPTEMBER 2012

(incorporating Issues in Medical Ethics, cumulative Vol XX No 3)

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Nurturing empathy
The recent focus in the media has been on doctors involved in varieties of
wrongdoing: sex determination tests and illegal abortions, illegal clinical trials
on innocent patients, allowing untrained attendants to do their work criminal
negligence in the disposal of medical waste, and the list goes on. Can healthcare
professionals argue that they are no different from others in an increasingly
corrupt society? No, they are expected to be dedicated, caring, and trustworthy,
no matter what social environment they live in. It is an occupational hazard,
based on the simple fact that medicine is a matter of life and death.
The guilty must be punished. However, the challenge is to nurture ethical
values in members of the profession. One approach is to introduce the medical
humanities into medical education, to open up the mind to imagination and
empathy, to enable one to enter the skin of the other, the patient, and feel
as she or he feels. This issue of IJME has medical humanities as its theme and
its vital importance is explored from the viewpoints of students, clinicians and
teachers, and coordinated by our guest editor, Radha Ramaswamy.
Other articles in this issue cover a range of subjects. Public health professionals
report on the devastation caused by sanctions in Syria. An editorial tackles the
deaths of healthcare workers caught in the cross fire between opposing forces
in war zones. Two studies look at the critical question of informed consent, one
among patients in a service-oriented hospital and the other among nurses
participating in a study, and finds lacunae in both settings. Another study
explores the inclination of nurses to support their patients, even from neglect
by other care givers, and asserts that institutions must support nurses who
advocate for their patients. A comment refutes the charges against a doctor
as false, challenging the tarnishing of a reputation based on insufficient
investigation. Others analyse the inevitable compromises made while framing
mental health laws, or when letting go at the end of life.

The Indian Journal of Medical Ethics (formerly Issues in Medical Ethics) is a


platform for discussion on healthcare ethics, with special reference to the
problems of developing countries such as India. It hopes to involve all
cadres of, and beneficiaries from, this system, and strengthen the hands of
those with ethical values and concern for the underprivileged.
The Journal is owned and published by the Forum for Medical Ethics Society,
a not-for-profit, voluntary organisation. The FMES was born out of an effort
by a group of concerned doctors to focus attention on the need for ethical
norms and practices in health care.
Contributions to the journal, in the form of original papers, research findings,
experiences in the field, case studies, debates, news and views on medical
ethics, are welcome. All submissions must be in English and are subject to
editorial review.
Contributors are requested to refer to the detailed guidelines for
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Published at FMES, 0-18, Bhavna, Veer Savarkar Marg
Prabhadevi, Mumbai 400 025 Editor: Amar Jesani

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Contents

Indian Journal of Medical Ethics


Vol IX No 3, July-September 2012
(incorporating Issues in Medical Ethics, cumulative Vol XX No 3)

EDITORIALS





Healthcare workers in conflict zones fright or flight? .........................................................................................................................142


Samrat Sinha, Nobhojit Roy
Medical humanities for India................................................................................................................................................................144
Radha Ramaswamy
Standing committee report on CDSCO: hard facts confirm an open secret.........................................................................................148
Sandhya Srinivasan, Amar Jesani

REPORT

Syria: Public health achievements and the effect of sanctions............................................................................................................151


Waleed Al Faisal, Kasturi Sen, Yaser Al Saleh

DISCUSSION: MEDICAL HUMANITIES





















The patient - doctor relationship.............................................................................................................................................................156


Usha Rajaram
My recent experiences as a patient.........................................................................................................................................................158
Sunil K Pandya
One flu over the doctors nest .................................................................................................................................................................161
Kapil Rangan, Bhargavi Pawar
An undergraduate students view of the medical humanities..............................................................................................................161
Jayesh Vira
Medical humanities: a resident doctors perspective............................................................................................................................162
Anvita Pauranik
Medical humanities ... almost..................................................................................................................................................................164
Neha Dangayach
Whither medical humanities?..................................................................................................................................................................166
Navjeevan Singh
Integrating medical education with societal needs ..............................................................................................................................169
R Krishna Kumar
Embracing the unknown: introducing medical humanities into the undergraduate medical curriculum in India..........................174
Radha Ramaswamy
Healthcare the Ayurvedic way ................................................................................................................................................................177
Rama Jayasundar

ARTICLES





How informed is informed consent? Findings from a study in South India.......................................................................................180


Shuba Kumar, Rani Mohanraj, Anuradha Rose, MJ Paul, George Thomas
Informed consent among nursing students participating in biomedical research.............................................................................186
Anupama Nambiar, D J Christopher , Joy Mammen, Thambu David, Gagandeep Kang, Shirley David
Patient advocacy practice among Iranian nurses..................................................................................................................................190
Reza Negarandeh, Nahid Dehghan Nayeri

COMMENTS





Some ethical tradeoffs in mental health legislation and practice........................................................................................................196


Nikhil Govind
Tarnishing reputations: the downside of medical activism..................................................................................................................200
Sunil K Pandya
Concepts and debates in end-of-life care...............................................................................................................................................202
Abhijit Chakravarty, Pawan Kapoor

ETHICS OF ETHICS COMMITTEES



ICMRs Ethical guidelines for biomedical research on human participants: need for clarification..................................................207
N Ananthakrishnan, Shanthi AK

BOOK REVIEWS





Exposing the thin line...............................................................................................................................................................................210


M R Maithreyi
Organ transplantation: bridging the technology-ethics gap................................................................................................................211
Sreekumar Nellickappilly
A model for holistic rural health..............................................................................................................................................................212
Manu Kothari
FROM THE PRESS................................................................................................................................................................................................................................. 154
FROM OTHER JOURNALS.................................................................................................................................................................................................................. 214
LETTERS................................................................................................................................................................................................................................................. 216
ANNOUNCEMENT: NBC 4.................................................................................................................................................................................................................. 221

Cover: Original painting Clinic by kind courtesy of the artist, Sudhir Patwardhan
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

EditorialS

Healthcare workers in conflict zones fright or flight?


Samrat Sinha1, Nobhojit Roy2
1
Assistant Professor and Assistant Director, Centre for Study of Political Violence, Jindal School of International Affairs, OP Jindal Global University, Haryana 131 002
INDIA e-mail: samrat8097@gmail.com 2 Visiting Professor, Jamsetji Tata Centre for Disaster Management, Tata Institute of Social Sciences, VN PuravMarg, Mumbai
400 088 INDIA e-mail: n.roy@tiss.edu

The noble intention of helping fellow human beings can have consequences that are both risky and life-threatening. Increasingly,
humanitarian health workers and the healthcare system in conflict zones are themselves becoming targets of assault. On January
5, 2012, Dr Khalil Rashid Dale, an International Committee of the Red Cross (ICRC) delegate working as health programme
manager, was abducted by unknown armed men while returning to his residence in Quetta, the capital of Baluchistan province
in Pakistan. While the perpetrators of the abduction maintained intermittent contact with various authorities, the beheaded body
of the kidnapped official was found in an apple orchard on April 29, 2012. It is now being revealed that the motivation for the
abduction and killing could be the ICRCs refusal to pay a ransom. Declining to pay a ransom for abducted staff is consistent with
the ICRCs security policy. Of special significance is the fact that the perpetrators of the crime were aware of the credentials of the
doctor, as he was travelling in a clearly marked ICRC vehicle (1).
Attacks on humanitarian healthcare providers are a less understood aspect of conflict, primarily because they constitute a smaller
proportion of the overall number of violent events. The consequences of these attacks are extremely drastic and disproportionate
in their impact. For instance, in January 2012, Medicins Sans Frontieres (MSF) closed down two major medical centres in the
Hodan district of Mogadishu, the capital of Somalia, following the killing of two staff members. The two 120-bed medical facilities
were the largest of MSFs 13 projects in Somalia. Their closure reduces the organisations presence in Mogadishu by half. Moreover,
according to MSF the facilities served an area with a population of 200,000 and had, since August 2011, treated close to 12,000
malnourished children, and provided measles vaccination or treatment to another 68,000 patients(2).
In the Sudan, MSF ran a primary healthcare centre in the town of Pibor in Jonglei state, and from there established two smaller
outreach clinics in the more remote areas of Lekwongole and Gumuruk, which are only accessible by plane or boat during the
rainy season. In July 2010, an armed group entered the Gumuruk clinic and stole boxes of the ready-to-use therapeutic food with
which MSF treats severely malnourished children. Three days later, more ready-to-use therapeutic food was stolen along with
medical equipment. Then, later in the month, four MSF staff members travelling by boat from Pibor to Gumuruk were robbed by
armed men. Following these three separate security incidents the organisation suspended all activities in Gumuruk and Jonglei
state. Apart from a smallministryof health facility in Pibor town, MSF was the only primary healthcare provider in this part of
Jonglei state, which is home to around 150,000 people (3). Already, a major consequence of the killing of Dr Khalil Rashid Dale
has been the suspension of the ICRCs health projects in Balochistan and the closure of a rehabilitation centre for the physically
challenged, functioning out of the Christian Hospital in Quetta (1).
However, non-state actors are not the only perpetrators of violence against healthcare providers. States themselves have engaged
in numerous acts that obstruct the provision of healthcare. In May 2009, the Sri Lankan army attacked the Mullaivaikal hospital
three times in the space of a week, killing more than 91 persons, including an ICRC worker (4). In June 2011, a police official in
Chhattisgarh accused the MSF and ICRC of facilitating the medical treatment of Maoist insurgents (5).

The limits of protection for healthcare provision


The current state of knowledge in the field of conflict studies is not able to discern the motivations of armed actors in conflict
zones. Increasingly, it is being found that the intentional targeting of civilians and civilian institutions is becoming more pervasive.
The shifting burden of conflict onto civilians and civilian institutions is an area of concern, especially when we seek to understand
the constraints on healthcare service delivery in conflict zones and fragile states.
Given the diversity of security challenges facing healthcare provision, there is an absence of any cohesive body of international
law that exclusively provides legal protection for healthcare provision in situations of conflict. The formal protections for
healthcare provision arise from the four Geneva Conventions of 1949, the two Additional Protocols of 1977 and the third
Additional Protocol of 2005. This body of international humanitarian law (IHL) essentially provides a template of conduct but does
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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

not outlaw the act of war. Rather, it provides a set of norms or a protection framework to be adhered to by the parties involved in
the conflict. Firstly, medical assistance is viewed as a neutral activity, which should be universally accessible to the wounded, sick
and prisoners of war. Second, these standards impose the duty on warring parties to not interfere with medical care for wounded
or sick combatants and civilians, and not attack, threaten, or impede medical functions (6). Moreover, warring parties must also
permit medical functions to have access to the sick and wounded, refrain from using medical facilities for military purposes, and
spare patients from violence, intimidation, or harassment (6). Lastly, the parties [must] respect principles of medical ethics; they
(the norms) forbid the punishment of medical personnel for adherence to ethical standards of the profession, and outlaw use of
compulsion against health providers to engage in acts that are inconsistent with medical ethics(6).
However, despite the existence of a normative framework enshrined in the Geneva Conventions, healthcare is under threat,
because of the limits to which the norm is internalised by the perpetrators of violent acts. There are certain fundamental
normative assumptions of IHL that are being challenged by the actual conduct of contemporary warfare. As a body of law,
international humanitarian law essentially evolved at a time when states were seen as the primary stakeholders in the conduct
of war. Even though the Addition Protocol II (1977) is applicable to Non-International Armed Conflict (NIAC), it still envisages
this type of conflict as military action which takes place in the territory of a High Contracting Party between its armed forces
and dissident armed forces or other organised armed groups which, under responsible command, exercise such control over a
part of its territory as to enable them to carry out sustained and concerted military operations (7). The last part of the clause
assumes, for instance, that once these conditions are met, the organised armed group will also be in a position to implement
the Protocol. However, in situations of state failure, the conditions of NIAC rarely fit such categorisation. It is extremely difficult
to determine, especially in the case of organised armed groups the degree of responsible command, the extent to which they
exercise control over territory and their ability to carry out sustained and concerted military operations. In many cases armed
actors, whether state or non-state, do not necessarily have fixed hierarchical organisational structures; nor do they actually control
discernible swathes of territory.
This leads us to the issue of implementation of IHL in conflict zones. In most instances, conflicts lead to breakdowns in existing
legal structures and ethical principles. Adherence to international law by armed actors is extremely difficult to enforce in the
absence of any centralised governing authority, this being a hallmark of contemporary conflict processes. For instance in 2010, the
internationally recognised transitional government of Somalia officially controlled a territory of eight square miles in the country,
which was limited to a part of the city of Mogadishu (8). The rest of the city and the country were considered disputed territory,
governed by warlords, militias and rebel groups. Another aspect of protection is that IHL only provides standards of conduct for
warring parties. There is no formal enforcement mechanism by which members of armed groups or state armed forces can be
held criminally accountable for their actions. While IHL can provide the basis of classifying certain acts as war crimes for future
criminal trials, the process of actually trying individuals for war crimes is a distinct political process which requires the creation of
international tribunals, the formulation of stringent rules of evidence and, above all, international commitment to the sustenance
of specific war trials.

Existing gaps in knowledge


It would not be correct to place the onus of protection exclusively on the warring parties. While the focus of this editorial has
been on international humanitarian healthcare provision, there is virtually an absence of any knowledge on the intimidation
faced by local healthcare providers (including local staff of international organisations) who actually account for a larger share of
casualties compared to expatriates (9). The fact that local health workers are at the forefront of collapsing health systems requires
serious consideration. Moreover, little is known about the resilience of local health providers in sustaining the integrity of medical
care provision in the face of intimidation, polarised political contexts and acute psychological stresses. In most cases, local health
workers do not have the option of exiting their posts, despite the deaths of or injury to their colleagues. This lack of awareness
arises primarily from a distorted focus on the large international humanitarian health service providers.
The dearth of knowledge of national health systems in conflict zones is also complemented by an absence of understanding of
the conduct of humanitarian health providers themselves. In situations where there are no overarching governance structures,
there is a need to understand the forms of regulation that ensure that expatriate medical practitioners maintain ethical standards
of practice. Emanating from this is also the question of the ethical aspect of international humanitarian health agencies closing
down entire programmes due to security threats. Again, very little is known about the manner in which populations can become
dependent on external medical assistance and the impact on local societal structures of withdrawal of medical aid. Further, it is
not known whether local health systems become resilient or whether they tend to regress after such withdrawals. Discussions on
medical humanitarian assistance thus require a debate on the nature of accountability in the field of humanitarian healthcare.
Who will provide these life-saving services to the civilian populations once the agencies leave, is an open question.
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Conclusion
The increasing use of force against healthcare facilities and medical personnel is an issue that requires systematic research.
The inescapable aspect of armed conflict is that there is a clear spillover of the political dimension into such a fundamentally
critical and non-aligned arena as health provision. The fact that modern day armed groups and state actors do not conform to
the standards and ethics enshrined in IHL with regard to protection of healthcare provision is echoed in the findings of an ICRC
report titled Healthcare in danger. The report concludes that the means to address this problem do not lie within the healthcare community; they lie first and foremost in the domain of law and politics, in humanitarian dialogue, and in the adoption
of proper procedures by State armed forces (10). However, attributing the solution to the political domain is not enough, as
it dissociates the issue of humanitarian healthcare from its own ethical responsibilities in conflict zones. Seen from the lens of
civilian protection, the onus of the protection of healthcare facilities must not be limited to state and non-state actors. Rather,
serious ethical reflection on the provision of humanitarian healthcare is required, which also takes into account the responsibility
of aid agencies towards vulnerable populations.
References
1. Shahid S. Body of kidnapped ICRC official found. Dawn [Internet]. 2012 Apr 30[cited 2012 Jul 3]; From the newspaper:[about 4 screens].Available from:
http://dawn.com/2012/04/30/body-of-kidnapped-icrc-official-found
2. MSF: Medicins Sans Frontieres [Internet]. New York: MSF; c2012. MSF closes two large medical centers in Mogadishu after killings of staff; 2012 Jan
19[cited 2012 Jul 3];[about 3 screens]. Available from: http://www.doctorswithoutborders.org/press/release.cfm?id=5733&cat=press-release
3. MSF: Medicins Sans Frontieres [Internet]. New York: MSF; c2012. Sudan: security incidents force MSF to suspend activities in Gumuruk; 2010 Jul 30 [cited
2012 Jul 3]; [about 3 screens]. Available from: http://www.doctorswithoutborders.org/news/article.cfm?id=4628&cat=field-news
4. Al Jazeera [Internet]. [place unknown]: Al Jazeera; c2009. Sri Lanka war hospital hit again;2009 May 13[cited 2012 Jul 3]; [about 5 screens]. Available from:
http://www.aljazeera.com/news/asia/2009/05/20095131040721771.html
5. BBC News South Asia [Internet]. UK: BBC; c2012. Bagchi S. Red Cross and MSF accused of helping India Maoists;. 2011Jan 21[cited 2012 Jul 3];[about 4
screens]. Available from: http://www.bbc.co.uk/news/world-south-asia-12247693
6. Rubenstein LS. Bittle M. Responsibility for protection of medical workers and facilities in armed conflict. Lancet [Internet].2010 Jan 23[cited 2012 Jul
3];375:329-40. Available from: http://www.jhsph.edu/sebin/y/h/Rubenstein_ProtectionofMedicalWorkersInConflict_Lancet2010.pdf
7. ICRC: International Committee of the Red Cross [Internet]. Geneva: ICRC;c2005. Protocol Additional to the Geneva Conventions of 12 August 1949, and
relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II,8 June 1977); 1977 Jun 8[cited 2012 Jul 3];8p. Available from: http://
www.icrc.org/ihl.nsf/WebART/475-760004?OpenDocument
8. Dickinson E. How much turf does the Somali government really control? Foreign Policy [Internet]. 2010 Sep 23[cited 2012 Jul 3]. Available from: http://
www.foreignpolicy.com/articles/2010/09/23/how_much_turf_does_the_somali_government_really_control
9. Stoddard A, Harmer A, DiDomenico V. Providing aid in insecure environments: 2009 Update trends in violence against aid workers and the operational
response. HPG Policy Brief 34[Internet], 2009 Apr[cited 2012 May 4]. p 3.Available from: http://www.odi.org.uk/resources/docs/4243.pdf
10. ICRC: International Committee of the Red Cross[Internet]. Geneva: ICRC; c2005. A sixteen country study: healthcare in danger;2011 Jul 3[cited 2012 Jul
3];19p. Available from: http://www.icrc.org/eng/assets/files/reports/4073-002-16-country-study.pdf

Medical humanities for India


Radha Ramaswamy
Centre for Community Dialogue and Change, A-6, Grasmere Apartments, Osborne Road, Bangalore 560 042 INDIA e-mail: radharamaswamy08@gmail.com

Is there a problem?
A 21-year-old senior medical student is standing at the bedside of a patient in a general ward. The intern has been told that it is
important to pick up the patients hand, and look into his face, before asking any questions. He has seen his teacher do this. He
moves his hand stiffly, watches it go towards the patients hand, and pause, and in those few seconds, realises this is not going to
work. He gives up, and asks: Tell me what the problem is.
The young men and women who enter medical colleges in India are of above average intelligence, many are exceptionally bright,
and all yearn to do good. This is largely true, even though our entrance exams do not really test intelligence or aptitude, and these
young people stopped looking beyond physics-chemistry-biology at the age of 13, becoming little more than marks-scoring
machines. Miraculously, many of them survive these battles with their intelligence intact and clinging still to their desire to be of
service. The battle scars are there -- fear lies beneath the cool, dont care surface. There are countless doubts. Am I in the right
place? Am I good enough? But isnt this wrong? What should I do?
Not addressing these questions can be dangerous: to the individual medical student whose doubts gradually vanish, leaving him
numb, or worse, indifferent; to the patient who has to confront an emotionally stunted doctor; to the national healthcare scene
dominated by people who learned to leave their humanity behind years ago.
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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Medical education and patient care


The deteriorating quality of medical education and patient care in the country has been the cause of much concern and
discussion, both within the medical profession and outside (1-3). One of the chief causes of this is being identified as the
jettisoning of all humanities and arts courses from curricula for students preparing for professional courses our own adaptation
of CP Snows two cultures phenomenon, the divide between scientists and literary intellectuals (4).
Infuse joy into learning, say educationists, in response to this situation and bring genuine human interaction into the classroom
(5). Business schools are introducing managers to literary texts so that they may learn to appreciate metaphorical language and
become more sensitive to hidden meanings in communication. In medicine, an increasing body of public opinion now considers
the doctors emotional, psychological, even spiritual wellbeing to be almost as important as his clinical competence.
Recognising the urgent need for reforms in medical education, the Medical Council of India has, in a recent document, proposed
significant changes to the MBBS curriculum(6). Perhaps for the first time, there is a mention of medical humanities in the course
components, as well as a direction to medical colleges to appoint faculty who are experts in these non-medical disciplines. In the
light of this recent MCI initiative, this special issue of the IJME is timely. The collection of articles here represents current thinking
on the subject in the country, and will help not only to focus attention on the need to introduce MH, but also to highlight critical
pedagogical issues in its implementation.

Why this theme


Medical humanities (MH) is projected to be the answer to many of the serious, unresolved issues in medical practice. Before we
hurry up and install it in our medical curricula, we need to see the shape of the beast more clearly.
Loosely described, MH is the name generally given to an interdisciplinary programme, drawing largely on the humanities and
the arts, that aims to address the emotional, and psychological aspects of medical training not taken care of by the standard
undergraduate medical curriculum (7-9). As a formal field of inquiry and as a part of the medical curriculum, MH has been around
for quite a while outside India, and in a few centres scattered across India in recent years(10). Perhaps following the lead of the US,
and the remarkably useful databases, MH courses have been largely focused on the use of literature and the arts, including drama.
While a wealth of literature is available on MH, the challenge for us in India will be to evolve a model that is India-specific, shaped
by our socio-economic and cultural realities and the diversity of needs of our population. We hope that the writings in this issue
will both guide us as we begin exploring this unfamiliar territory and help us move in fresh and new directions.
Some of the articles in this issue may contain generalisations that may appear unoriginal, even commonplace. Yes, we are all
aware of the commercialisation of medical practice, the increasing dependence on technology and invisibilisation of the patient
as a human being, and how the medical curriculum does not prepare the student for the dilemmas or the uncertainties built
into the experience of being a doctor. The significant thing and this is no mean significance is that it is medical students and
doctors who are saying these things, and for the first time openly, in a special issue on the theme in medical literature in India.

In this issue
We begin this issue with patient narratives. Put the patient first, says Usha Rajaram, who believes that true healing, especially in
cases of serious and long term illnesses, can only happen when the doctor acknowledges the patients need to seek emotional,
and psychological support from the doctor. Sunil Pandya narrates his experiences of the shift from being a neurosurgeon to a
patient, and his newfound perspective on illness, treatment, and hospitalisation.
The voices of medical students are next. The first piece by Jayesh Vira is a plea for help, underlining the undergraduate medical
students struggles to cope with the magnitude of the changes in his life as he enters medical college, and the need to revamp
the curriculum before introducing MH. Anvita Pauranik testifies to how medical education actually contributes to the gradual
erosion of empathy in students, and argues that a course based on the humanities will probably help, if faculty is suitably trained.
Neha Dangayach muses on the contribution of teachers, friends and patients to her evolution as a resident but concludes that a
formal course in the humanities can help medical students evolve into sensitive doctors.
These are voices from the ground. They need to ring in our ears as we ponder curricular changes.
The next set of four articles addresses the big question: Do we need a fundamental change in perspective or just additions to the
current syllabus? Navjeevan Singh graphically describes the oppressive systems suffocating the medical student, and suggests
how some of the challenges to introducing humanities-based programmes may be faced. Krishnakumar offers suggestions for
remedying the tragic disconnect between the realities of the healthcare needs in the country and the professional orientation that
students receive during their medical education Urging doctors to embrace the spirit of MH- of a bold inquiry into themselves
and their patients - Radha Ramaswamy makes a case for a flexible and creative approach to MH. Finally, Rama Jayasundar
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

describes the Ayurvedic approach to patient care, which integrates, instead of fragmenting, the patient, and emphasises wellness
over the cure of an illness.

In forthcoming issues
Future articles on this theme in IJME include: accounts of experiments in MH from four different colleges in India and Nepal that
vary in approach, content and methodology, providing a rich ground for creative and fruitful discussion; doctors narratives about
coping with doubts, guilt, and feelings of incompetence; a guide to curricular issues, and the MCIs thoughts on introducing an
MH programme in the undergraduate medical curriculum.

Preparing for MH
Medical education is the site where we see tremendous possibility for change. We need many and diverse voices to speak to us, so
that we may see what resonates for us.
A whole range of issues will appear before us as we start our journey on the road to MH. From large and abstract questions such
as Is a happier doctor a better doctor?, or Is kindness as important in a doctor as clinical competence? to decisions about the
nitty-gritty of implementation, about making MH courses voluntary or mandatory, about not overloading the already crowded
curriculum, and finding suitable resource persons.
We need to draw on a wide array of disciplines outside of medicine, and identify the inputs needed to challenge students as well
as excite and interest them. The courses need to be relevant to their development as medical professionals, and this relevance
needs to be identified as broadly and deeply as possible.
For example, while choosing literary texts, what kinds of texts do we look for? Is it necessary to identify texts that are directly
about doctors or patients or about illness? This is the more popular, instrumentalist approach to MH. But more and more medical
educators are arguing that all good literature is useful because it keeps the imagination alive (11). When a doctor faces a patient,
he often needs to makes an imaginative leap into the others thoughts and feelings. The same imagination helps him examine
places within himself where his attitudes and beliefs lie, hidden even from himself.
Lest we slip into the comfortable slotting of MH as the soft skills, there is a growing body of scholarship on India in the social
sciences and humanities that MH needs to draw upon (12). This will provide a valuable perspective, provide inputs that will help
medical students approach the ambiguities and dilemmas of their profession in a more informed way, and make them reflective
practitioners.
MH courses can be designed so they also provide opportunities for students to learn from their peers, patients, caregivers and
families. The classes need to be enjoyable, provide a friendly environment for exchange of ideas and debates, and be a safe space
for students to express personal views. A large hall, empty of furniture, where everyone leaves their shoes outside, and sits on the
floor in a circle, can dramatically alter the nature of the communication in the group. Small group discussions rather than lectures,
workshops, projects and presentations, reflection time, and regular oral and written feedback, could be useful features of an MH
course (13).
The approach, always, has to be flexible, and non judgemental. For example, imagine a formulaic communication skills course,
where Step 2 is: Take the patients hand in your own. This is no doubt a profoundly meaningful ritual for patient and healer (14).
Our hypothetical student in the scene described in the opening paragraph of this editorial, might however ask: What if it doesnt
come naturally to me, and I feel awkward picking up the patients hand?To condemn such a response as lack of empathy would
be as wrong as any attempt to teach it as if it were a communication strategy to be picked up mechanically.
Lastly, how does one handle assessment in such courses? Even after inputs from sociology, economics, public health and ethics,
is it possible for a student to give the correct answer to a question on abortion? The hard part for medical educators, and
students, will be to let go of the need for Yes/No answers. The standard kinds of assessments that test factual knowledge will
have to be abandoned, and so will impact studies to measure the effectiveness of such programmes. Does this mean we cannot
know whether these programmes are benefitting us at all? Not true. For, even though we may not be able to define or measure
kindness, we all recognise it when we see it.
Through the articles in this and subsequent issues of this journal we hope to generate questions and discussions such as these,
that will help us see MH for what it can truly be- beyond issues of medical and professional ethics, and beyond prosaically learnt
communication skills.

What next
In August, when the new term begins, lets see colleges take those first bold steps.
[ 146 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Call a meeting of everyone - hear students and faculty speak their minds freely on what they struggle with, on changes they
would like to see. Every voice counts.
Whos passionate about change? Who reads beyond medicine? Who has friends in the humanities departments, or hobbies they
would like to bring into the classroom? Form a team.
Let ideas come from everywhere; hierarchies can kill initiative.
Draw up a programme for the year. But let nothing be frozen.
Let Imagination, Flexibility and Fun be the key words.
Announce the first module, talk, screening, workshop. Take feedback always.
Call a meeting every month, after every term, and take stock; be ready to make mid course corrections, if necessary.
Lets try something different from the standard medical education programme.
And, in July 2013, lets all meet to share our MH stories.
Taking the first step, without knowing exactly what awaits us, is perhaps the most difficult. Maybe the real challenge is that
medicine is being asked to open itself to an outsider gaze.
But is there really an outsider here? Are we not united by a common purpose, beyond disciplinary boundaries? MH simply asks
that we reclaim the vision we once had, listen to the voice that whispers in our ears.
As the founder of the Centre for Community Dialogue and Change, I conduct workshops in Theatre of the Oppressed, a popular
community education tool, as part of the medical humanities programme in colleges.

Acknowledgements I am deeply grateful to Dr Amar Jesani and Dr Sunil Pandya for giving me an opportunity to guest edit this
special issue of IJME on Medical Humanities. It has been an amazing and invaluable journey. I am grateful to all the authors who so
readily responded to my request for articles, to all the reviewers, and to Meenakshi DCruz and Sandhya Srinivasan at the IJME for their
friendship and editorial support. I am grateful to my family, who greeted this new madness with their usual nonchalance, to the many
friends who gave generously of their time and ideas, and finally, to all the wonderful people out there doing MH, and writing about it,
from whom I have learnt and continue to learn so much.
References
1. Medical Council of India. Vision 2015 [Internet]. New Delhi: MCI; 2011 Mar [cited 2012 Jun 27]. Available from: http://www.mciindia.org/tools/
announcement/MCI_booklet.pdf
2. Supe AN, Burdick W. Challenges in medical education in India. Acad Med. 2006 Dec;81(12): 1076-80.
3. Zachariah P. Rethinking medical education in India. The Hindu [Internet]. 2009 Sep 9[cited 2012 Jun 27];Opinion: [about 3 screens]. Available from: http://
www.hindu.com/2009/09/09/stories/2009090954430900.htm
4. Snow CP. The Rede Lecture1959 [Internet]. New York: Cambridge University Press;1961 [cited 2012 Jul 4]. Available from: http://s-f-walker.org.uk/
pubsebooks/2cultures/Rede-lecture-2-cultures.pdf
5. Robinson K. Imagination and empathy. Dalai Lama Centers Speakers series event, Educating the heart and mind [Internet]. 2011 Nov 21[cited 2012 Jun
27]. Available from: http://www.youtube.com/watch?v=Yu2zcmb3yAQ&feature=relmfu
6. Medical Council of India. Regulations on Graduate Medical Education 2012 - Medical Council of India [Internet]. New Delhi: MCI; 2012[cited 2012 Jul 7]
Available from: http://www.mciindia.org/tools/announcement/Revised_GME_2012.pdf
7. Shapiro J. A sampling of the medical humanities. J Learning Arts [Internet]. 2006[cited 2012 Jun 27];2(1):Article 1. Available from: http://escholarship.
org/uc/item/58b5h3h9#page-10
8. Shapiro J. Walking a mile in their patients shoes: empathy and othering in medical students education. Philos Ethics Humanit Med. 2008 Mar;3:10.
9. Kirklin D. The Centre for Medical Humanities, Royal Free and University College Medical School, London, England. Acad Med. 2003 Oct;78(10):1048-53.
10. Gupta R, Singh S, Kotru M. Reaching people through medical humanities-an initiative.J Educ Eval Health Prof. 2011;8:5. Epub 2011 May 20. Published
online 2011 May 20.http://dx.doi.org/10.3352/jeehp.2011.8.5 [cited 2012 Jun 27]. Available from: http://jeehp.org/Synapse/Data/PDFData/0144JEEHP/
jeehp-8-5.pdf
11. Verghese A. The Centre for Medical Humanities and Ethics: Q and A with Abraham Verghese [Internet].[date unknown] [cited 2012 Jun 27]. Available
from: http://www.abrahamverghese.com/images/Q-A%20Humanities%20in%20Medical%20Education.pdf
12. Zachariah A, Srivatsan R, Tharu S for CMC-Anveshi Collective Towards a critical medical practice: reflections on the dilemmas of medical culture today.
Hyderabad: Orient Blackswan; 2010.
13. Shankar PR, Piryani RM, Thapa TP, Karki BMS. Our experiences with Sparshanam, a medical humanities module for medical students at KIST Medical
College, Nepal. J Clin Diag Res [Internet]. 2010 Feb[cited 2012 Jun 27];4(1): 2158-62. Available from: http://www.jcdr.net/article_abstract.asp?issn=0973709x&year=2010&month=February&volume=4&issue=1&page=2158-2162&id=642
14. Ted- Ideas worth spreading [Internet]. [place unknown]: Ted; c2012. Abraham Verghese- A doctors touch; 2011 Sep [cited 2012 Jun 27]. Available from:
www.ted.com/talks/abraham_verghese_a_doctor_s_touch.html
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Standing committee report on CDSCO: hard facts confirm an open secret


Sandhya Srinivasan1, Amar Jesani 2
1
Independent journalist, 8 Seadoll, 54 Chimbai Road, Bandra West, Mumbai 400 050 e-mail: sandhya_srinivasan@vsnl.com 2 Trustee, Anusandhan Trust, Sai Ashray,
Aaram Society Road, Vakola, Santacruz East, Mumbai 400 055 INDIA e-mail: amar.jesani@gmail.com

You would think the mandate of the Central Drugs Standard


Control Organisation (CDSCO) is to ensure that medicines on
the Indian market are safe, effective, and necessary for public
health. But the government thinks differently. According
to a statement by the ministry to the Department Related
Standing Committee on Health and Family Welfare (1), the
CDSCOs mission as stated in the committees report, is to
meet the aspirations. demands and requirements of the
pharmaceutical industry. (1:8). It is no wonder, then, that this
industry can do just about anything it wants, at the cost of
peoples health.
With the 59th report of this committee on the functioning
of the CDSCO, for the first time, the internal workings of the
office are laid bare for the public with documentary proof
of wrongdoing. The writers have minced no words in their
indictment of the Drugs Controller General of Indias (DCGI)
office, their conclusions supported by a clearly articulated
methodology and hard data. The report confirms what everyone
knows: the regulatory body and a coterie of medical experts are
bounden to industry, and the approval process is a sham.

Dearth of resources to regulate


The report reveals a shockingly understaffed and abysmal
infrastructure. Just 50 people handle applications for drug
approval, and just 127 of 327 sanctioned posts are filled,
though 1,045 are proposed. Just nine deputy and assistant
drugs controllers handle 20,000 applications of various types,
inspecting labs, 10,500 manufacturing units, and 600,000
sales outlets; providing information to parliament; meeting
the public, attending court cases, and so on. And the CDSCO
is headed by a drugs controller whose post demands nothing
more than a graduate degree in pharmacy. The problem is
compounded by a grossly inadequate infrastructure including
data maintenance and coordination between state-level offices.
The office is expected to review and decide upon an average of
1,600 applications for new drugs every year.
This state of affairs, well known to anyone who has interacted
with the DCGIs office, is conducive to the larger scenario
described by the committee: a nexus between regulator,
industry and medical experts which enables companies to sell,
in India, dangerous drugs not approved in other countries.

In one part of its investigation, the committee drew a random


sample of 42 from the total 2,167 new foreign drugs (less than
2%) approved by the CDSCO from Jan 2001 to Nov 2010. Of
these 42 drugs, all documents were missing for three (7.1%).
Of these three, one was not approved in countries with strong
regulatory bodies, and the other two had been withdrawn. The
committee expresses doubts as to whether this disappearance
[of documents] was accidental (1: 26).
Of the remaining 39 drugs on which information was made
available, the mandatory Phase 3 trials on the drugs safety for
the Indian population were waived in 11 (28.2%). 13 (33.3%) did
not have permission for sale in any major developed countries.
Not one of these 13 drugs has any special or specific relevance
to medical needs in India. 25 drugs (64%) were approved
without seeking any expert opinion; in the remaining 14 (36%)
the opinions of only three or four experts was obtained. In two
of 39 (5.1%) drugs, trials were on less than the minimum 100
patients, and in one (2.6%) on less than the minimum three
centres. Four (10.3%) drugs were approved with neither clinical
trial nor expert opinion. Finally, the CDSCO could provide
Periodic Safety Update Reports (mandatory as part of post
marketing surveillance) of only eight out of 39 drugs.
The committee also obtained information on all new foreign
drugs approved without any clinical trial in India from January
2008 to October 2010 (34 months). The CDSCO gave a list of 31
such drugs, but the committee identified two more drugs that
met these criteria. Thus 33 new foreign drugs were approved in
34 months-- almost one every month without the required
clinical trials here.
The committee demolished the CDSCOs and the health
secretarys claims that these 33 approvals were given in the
public interest in response to an emergency such as a
serious epidemic situation, for which presumably the law
waives these requirements. None of the drugs approved
was for such an emergency; some were pain killers, appetite
stimulants, appetite suppressants, and anti-depressants. The
CDSCO claimed that these drugs were approved after getting
expert opinions and submission of the mandatory PMS data.
However, expert opinions were collected in only five of 33
(15.2%) drugs -- and the CDSCO could not produce post
marketing surveillance data on those drugs.

Other questionable practices of the CDSCO

New (foreign) drug approval the CDSCO way


The committee carried out a systematic investigation of the
approval of new foreign drugs, looking at two document trails.
Its findings in both cases are shocking.

The report highlights many other questionable practices of the


CDSCO. It records specific examples of unlawful approvals (such
as Buclizine, Letrozole, Deanxit and a placental extract). It gives
examples of state FDAs acting on their own, and manufacturers

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

deliberately using confusing brand names. It notes that there is


no mechanism for withdrawing drugs found to be substandard.
About drug information, it states that the CDSCO doesnt ask
companies for updates, so companies dont provide them.
Finally, drugs are advertised directly to the public in violation
of the law, but do not provide consumers basic information on
these drugs as is required abroad.

Collusion between industry, regulator and expert


The committee is scathing in its comments on the manner in
which regulators and doctors, who are expected to use their
expertise and power to ensure safe, effective and necessary
drugs, collude with industry.
The report names several senior clinicians who have provided
expert opinions that companies have used to introduce their
drugs without clinical trials, and has annexed copies of their
opinions. A review of the opinions submitted by the experts
on various drugs shows that an overwhelming majority are
recommendations based on personal perception without
giving any hard scientific evidence or data Still worse, there is
adequate documentary evidence to come to the conclusion that
many opinions were actually written by the invisible hands of
drug manufacturers and experts merely obliged by putting their
signatures. (1: 33) It concludes that many actions by experts
are clearly unethical and may be in violation of the Code of Ethics
of the Medical Council of India applicable to doctors. Hence the
matter should be referred to MCI for necessary follow up and
action. In addition, in the case of government employed doctors,
the matter must also be taken up with medical colleges/hospital
authorities for suitable action. (1: 36)
Second, many experts appointed on the CDSCOs advisory
committees are from Delhi and surrounding areas, so much so
that one expert from Delhi sat on 5 of the 6 committees (1: 46).

Committee recommendations
The committees recommendations include punishment
of those found guilty of the various violations it lists -- the
companies marketing drugs that are banned in other countries,
the doctors who signed expert opinions for such drugs, and
the officials who gave a rubber stamp of approval to the sham.
The committee also calls for transparency in the approval
process: guidelines on selection of experts, declaration of
conflicts of interest, and experts opinions to be made public.
The committee notes that the current requirement of phase 3
trials on 100 patients, to look at the drugs impact on the ethnic
groups in India, is unscientific and therefore unethical. It is also
viewed by industry as a technicality, a matter of generating
paperwork though even this is bypassed when possible, as
the report reveals. The committee recommends that phase
3 trials in India for approval here have larger, representative
samples to detect any differences in the drugs metabolism in
various ethnic groups, and with more rigorous monitoring.
However, the notion that ethnic diversity is represented through
outward physical characteristics is scientifically questionable.
Nutritionists have suggested that differences in how drugs are

metabolised by malnourished people is more relevant; however


this cannot be tested ethically. The focus should be on whether
the drug is essential, or irrational, or just another me-too drug,
and on an effective system of pharmacovigilance for all sideeffects, adverse events and deaths.
Likewise, in the absence of any functioning system of
pharmacovigilance, the committee recommends that periodic
safety update reports be substituted with controlled postmarketing trials. However, the absence of pharmacovigilance is a
serious lacuna that cannot be filled with post-marketing trials.

Larger context of drug approval


Interestingly, in contrast to its clear-eyed analysis of the Indian
scene, the committee holds the standards and functioning
of regulatory bodies such as the USFDA in high esteem.
Contrary to the committees judgment, though the USFDAs
mission statement is protecting the public health, the FDA is
not very different from the CDSCO in its functioning, fraught
with irregular decisions because of industry funding. With the
Prescription Drug User Fee Act (PDUFA), 1992, industry provides
the FDAs Centre for Drug Evaluation and Research money to
pay for staff and infrastructure and provide time-bound review
of applications. As a result, the FDA commissioner recently
argued, justifying industry-funded regulation: We lead the
world in the number and speed of drug approvals... To achieve
these results, and speed access for the American people,
we made use of accelerated approvals and flexible clinical
trial requirements and made sure manufacturers know that
marketing applications can be based solely on foreign clinical
data that meets certain clear and specific requirements.(2)
With the renewal of the PDUFA in May 2012, industry will
provide almost half of the agencys budget of $4.5 billion (3) In
fact, 98% of the FDAs budget increase will be covered by the
increase in user fees (2). Further, the FDA permits consultants
for drug companies to serve on its own expert committees.
Waivers are granted to conflict of interest guidelines. It is no
surprise when these expert committees vote to keep on the
market drugs that have harmed people, even killed them, even
when safer alternatives are available (4). Clearly the money and
guidelines have not kept dangerous drugs off the American
market.
There are ethical implications in a regulatory body taking
money from the very industry it is supposed to regulate. The
regulator should be sufficiently funded through taxes on the
drug industry and contract research organisations (CROs).
The USFDAs industry-driven requirements have also fuelled
growth, in India, of outsourced drug trials with no scientific
value and with evidence of unethical and dangerous practices.
Its insistence on placebo-controlled trials of drugs even when
an effective treatment exists comes from industrys need to
show the effect of me-too drugs of marginal value, even if
they are less effective than the current treatment. One reason
the FDA accepts data from outsourced trials is that such
trials cost industry less. Another is that placebo-controlled

[ 149 ]

Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

trials may not be permitted in the US. For the same reason, it
waived international ethical guidelines when they became
inconvenient to such requirements.
The US FDA is brought into this discussion because its
consequences are felt in India, when industry lays down the
agenda for drug approval and research, such as in encouraging
outsourced drug trials in India. The DCGI accepts data
submitted to the FDA towards marketing approval here. India
does not need to emulate the US FDA. Any suggestion that
money to meet staff and infrastructure shortages come from
industry should be opposed vigorously.

Government response
Many of the committees recommendations along with the
reports findings could result in a regulatory body that is
accountable to the people whose health and lives it is supposed
to protect. Given the extent of wrongdoing documented by the
committee, the findings justify action not only on the 39 cases
it investigated; approval documents for all drugs at least from
2001 to the present must be investigated. Indeed, transparency
at all levels of the approval process is a critical step in making
the organisation accountable to the public. The same is true of
the proceedings of ethics review committees which function as
regulators in drug trials.
However, the governments response to appoint yet
another committee to further investigate the findings do
not give confidence that the report will have an impact on

the regulation of the drug industry in India. The committee


members come from the same coterie of experts referred
to in the Standing Committee report. The Indian Council of
Medical Research, whose director is a committee member,
was part of the HPV vaccine trial that is now established to be
grossly unethical. Another member headed the committee that
investigated the HPV vaccine trial and identified the various
unethical practices but concluded that no one person could be
held responsible for them.
Any further investigation should come from non-interested
parties, and the findings and action taken must be made public
if this report is to have any value.
References
1. Department-related Standing Committee on Health and Family Welfare.
Fifty-ninth report on the functioning of the Central Drugs Standard
Control Organisation (CDSCO). New Delhi; Rajya Sabha Secretariat; 2012
May.
2. Hamburg MA. Presidents fiscal year 2013 budget request for the FDA.
US FDA [Internet]. 2012 Feb 29. [Cited 2012 May 27]. Available from:
http://www.fda.gov/NewsEvents/Testimony/ucm293842.htm
3. Yukhananov A. US Senate passes bipartisan FDA funding bill.
Reuters [Internet]. 2012 May 24 [cited 2012 May 27]. Available
from:
http://www.reuters.com/article/2012/05/24/congress-fdaidUSL1E8GOGS020120524.
4. Angell M. FDA: this agency can be dangerous. The New York Review
of Books. 2010 Sep 30; 66-8.http://www.ahrp.org/cms/images/stories/
articles/angell_fda_dangerous.pdF

Technology in health care: current controversies


Editors: Sandhya Srinivasan, George Thomas
Published by: Forum for Medical Ethics Society and Centre for Studies in Ethics and Rights, Mumbai. December 2007. 288
pages. Rs 200
This collection of essays covers important discussions related to medical technology that have been carried in the
Indian Journal of Medical Ethics. Each of the nine sections is preceded by a commentary by an expert in the field. The nine
chapters cover placebo controls in research; intellectual property rights; family planning and population control; the HIV/
AIDS programme and research; electro convulsive therapy without anaesthesia, liver transplant technologies, end-of-life
care, medical professionals and law enforcement, and technology in public health programmes.
To order copies, please send a demand draft or cheque in favour of Forum for Medical Ethics Society to Forum
for Medical Ethics Society, c/o Survey No. 2804-5, Aaram Society Road, Vakola, Santacruz(E), Mumbai 400 055 INDIA
e-mail: ijmemumbai@gmail.com

[ 150 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

REPORT

Syria: Public health achievements and the effect of sanctions


Waleed Al Faisal1, Kasturi Sen2 Yaser Al Saleh 3
1
DFCM, Faculty of Medicine, Damascus University, Damascus, SYRIA e-mail: wldalfaisal@gmail.com 2Institute of Tropical Medicine, Antwerp, BELGIUM 3Public health
practitioner, Damascus, SYRIA. Corresponding author: Kasturi Sen e-mail: ksen@itg.be

Since May 2011, Syria has faced severe economic sanctions


which are all pervasive for the economy and society. There
is by now considerable evidence in literature that sanctions
have a serious impact on the health of citizens in both the
short and long terms (1, 2). We, as a group of public health
doctors and teachers, outline some key achievements of
health services in Syria that took decades to become a reality,
mainly through the efforts of professionals and the public at
large. In this report, we explore theconsequences of sanctions
on the economy, on peoples health status, and healthcare
systems. We call upon health activists everywhere to debate
whether western-imposed economic sanctions have the right
to punish whole populations, as they did with devastating
consequences for the population of Iraq. An embargo
affects whole populations and as such is akin to collective
punishment, illegal in international law.

Health system achievements


Syria is a lower middle income country (the estimated per
capita income for 2009 was 3,900 US dollars) which achieved
substantial improvements in the health of its population over
the past three decades, owing to the efforts of dedicated
public health professionals and an enabling health systems
organisation. These include improvements in access to
maternal and child healthcare services, education and better
nutrition, resulting in the following:

the past two decades, as highlighted by Table 1 below.

Table 1: Essential health indicators: IMR, MMR, Syria,


1970-2010 (actual) and 2015 (projected to MDGs)
1970 1993 2002 2003 2004 2010 2015
IMR per 100,000 live
births

132

33

24

18.1

17.1

14

12

U5 MR per 100,000 live


births

164

44

29

20.2

19.3

16

13

MMR per 100,000 live


births

482

107

71

65.4

58

45

32

Source: Ministry of Health, Damascus, Syria, Central Bureau of Statistics (2010)

Table 1 highlights significant declines in IMR from 132 per


100,000 live births in 1970 to 14 in 2010; and in MMR from a
high of 482 per 100,000 live births in 1970 to 45 in 2010. This
10-fold decrease is a notable achievement given the relatively
low per capita income of the country.

Table 2: MMR comparatively with other countries of


the region over 1990-2008

major declines in maternal and child mortality over the past

three decades;
comprehensive vaccination coverage;
improved levels of literacy (particularly among women);
plans to address a rising incidence of non-communicable

diseases (NCDs) through partnerships ;


a project on an Integrated Response of Health Care System

to Rapid Ageing (INTRA) of the Population conducted in


coordination with the World Health Organisation (since
2003) to involve older people in designing health services at
the local level;
a re-organisation of health services to increase local level

control as part of the process of decentralisation; and


a systematisation of data and trends through the Health

Metrics Network and Syrian National Accounts.


The country reveals a positive record with a declining infant
mortality rate (IMR) and maternal mortality ratio (MMR) over

Year

Egypt

Syria

Jordan

2008

82 (51-130)

46 (20-100)

59( 35-100)

2005

90 (56-150)

50 (22-110)

66 (38-120)

2000

110 (69-180)

58( 26-130)

79 (46-140)

1995

150 (94-240)

77( 34-180)

95(55-170)

1990

220 (130-350)

120(52-290)

110( 64-210)

Source: Maternal Mortality 1990-2008 WHO, UNICEF- WB, MM estimation.


Inter- Agency group. Numbers in brackets are confidence intervals.

Table 2 highlights trends in MMR in Syria in comparison with


countries at similar levels of development in the region. The
MMR for Syria are lower, despite comparatively low levels of
income and absence of substantial donor inputs in maternal
health services, by comparison to those for Jordan and Egypt.
To a large extent, the lower rates have been achieved by an
integrated health system, in which institutional deliveries
constitute more than 90% of all deliveries. These are
complemented by improved literacy and awareness among
women and with free maternal healthcare, all of which have
contributed to the relatively positive health status of women
and infants in the country up to 2011.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Syria can also credit itself with comprehensive vaccination


coverage, complemented by improved living standards, greater
citizen awareness of health issues, and reductions in illiteracy
especially among women. These have been supported by
improvements to infrastructure, providing access to clean
water and expanding public healthcare systems. There has
been a commitment to the integration of healthcare at all
levels of primary, secondary and tertiary care. It is also one of
the countries of the region on target (until recently) to meet
the health Millennium Development Goals (3).

Table 3: Prices of essential goods before and after


sanctions
Item
Gold

Syria has provided free healthcare to all its citizens with a ceiling
for charges from private providers. The right to comprehensive
health coverage is guaranteed by the constitution with overall
coordination, management and provision of services falling
under the ministry of health. Despite external pressures to
fully commercialise the health sector, 80% of beds in the
country remain in the public sector; for outpatient facilities, a
fee-for-service system had been recently introduced. However,
private providers in the hospital sector have increased by 41%
since the economy was opened up in 2005, posing a threat to
universal access (4).

Direct and indirect effects of sanctions


Since May 2011, Syria has been the target of economic
sanctions. Their consequences, particularly to the health
situation and facilities, both directly and indirectly are as stated
below.
Economic sanctions caused the USD exchange rate value in the
Syrian markets to rise from 45 to above 70 Syrian pounds (SP).
This essentially destroyed the value of the SP with ramifications
for the overall economy. The table highlights the cost of basic
essentials such as cooking oil and gas, milk, eggs. These have
doubled and tripled over the past year, halving the value of
salaries. The combination has had a devastating effect upon
families, especially those with children, pregnant women and
elderly people.
The collapse of the exchange rate has increased the cost of
health services and of medicines which are part of out-ofpocket expenditure. These changes will disproportionately
affect vulnerable groups: mothers, children and the elderly. The
cost of medicines to treat NCDs for example, will be seriously
affected. Not only has the value of salaries collapsed, but there
are thousands of job losses in the service sector (tourism in
particular), booming prior to the conflict.
Sanctions have led to interrupted power supply for up to
12 hours per day in many areas. This, apart from exposing
people to extreme Syrian winter and summer temperatures,
undermines the vaccines cold chain supplies and contributes to
interruptions in the vaccination programme. In the longer term,
this will lead to the loss of gains made in infection prevention
and control in diseases such as poliomyelitis, contributing to a
rise in morbidity and mortality among children.

Price after
sanctions (SP)

1,700

3,100

250

800

Mazoot heating oil (one litre)

13

30

Vegetable ghee (Aseel) (4 kg)

615

675

Cheese 1 kg

80

180

Yogurt 1 litre

35

100

Sugar 1 kg

50

65

290

350

Milk 1 litre

20

55

Vegetable oil 1 litre

60

100

Rice 1 kg

40

160

Eggs 30 eggs

80

200

Tea 250 gm

30

45

Tomatoes 1 kg

15

50

Gas (one cylinder)

Public health services

Price before
sanctions (SP)

Cow ghee 1 litre

From: http://www.hamafree.com/index.php?name=news&op=view&id=1208
(adjusted to May 2012 rates for rice, milk)

Sanctions have prevented the entry of essential medical


supplies into the country, including those for cancer, diabetes
and heart disease (not produced locally), and this will affect
millions of people. The crisis in this sector will remain largely
hidden as its consequences will be known mainly at the
household level, and over a long period.
Sanctions have also led indirectly to environmental sanitation
defects (inability to guarantee potable water supplies for
example). This is already having an effect in the short term
by increasing the incidence of diarrhoeal disease, especially
among children, and will contribute to a long term increase in
mortalities from water-borne infections.
Cold weather there is difficult, especially for vulnerable groups,
but has been aggravated by the difficulties of obtaining oil for
heating. As the above price index shows, the cost of heating
oil has increased three-fold in the past year. Cold weather in
the absence of heating will increase droplet infections and
respiratory tract infections among the most vulnerable. There
are indications that these are on the rise following a bitterly
cold winter in 2011-2012. In the long run, an increase in
mortalities from respiratory tract infections, especially among
the elderly and children, will lead to losing gains made in
increasing life expectancy and decreasing child mortality rates
and cause immense suffering for the population. Refugees
fleeing from violence are living in dismal conditions with
little access to basic essentials, whilst the psychosocial impact
(especially on children) is of serious concern.

[ 152 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Health and human rights


The global health and human rights agenda is on the
ascendant, with a collection of dedicated scholars and lawyers
on board, determined to defend the right to accessible quality
healthcare for all. The situation in Syria for the majority of
the population is an urgent one for this forum to address.
The effects of the post- gulf war sanctions on the health and
nutritional status of Iraqis, in particular children, have been well
documented and one can only hope that the world will have
learned some lessons from this experience1.
Note
Concerns about sanctions were expressed by the UNs Committee on
Economic, Social and Cultural Rights as early as 1997. In an extensive
discussion the Committee noted that trade sanctions almost always have a
dramatic impact on the rights recognised in the Covenant on Economic Social
and Cultural Rights frequently causing significant disruption in the distribution
1

of food, pharmaceuticals and sanitary supplies.(para 3 in http:/www.unhcr.


org/refworld/type,GENERAL,,,47q7079eO,O.html)
References
1. Garfield R. The impact of economic sanctions on health and well being
[Internet]. Relief and Rehabilitation Network. 1999 Nov [cited 2012 Jun 6].
Available from: http://www.essex.ac.uk/armedcon/story_id/The%20Im
pact%20of%20Econmoic%20Sanctins%20on%20Health%20abd%20W
ell-Being.pdf
2. World Health Organisation.The Syrian Arab Republic Crisis: meeting
humanitarian health needs. Briefing. [Internet]. 2012 Mar 13. [cited
2012 Jun 28]. Available from: http://www.who.int/hac/donorinfo/syria_
donor_alert_13march2012.pdf
3. United Nations Development Program [Internet]. Geneva: UNDP; c 2010.
Syria MDG report: the main challenge is environmental degradation. 2010
Sep 8[cited 2012 Jun 6]; [about 2 screens]. Available from: http://content.
undp.org/go/newsroom/2010/september/mdg-report-syria-has-morekids-in-school-but-suffers-environmental-degradation.en
4. Sen K, Al Faisal W. Syria: Neo liberal reforms in health sector financingembedding unequal access. Soc Med. 2010 Mar; 6(3):171-82.

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[ 153 ]

Website: www.nmji.in

Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

FROM THE PRESS

Sickening waste

Expired HIV drugs in West Bengal public hospitals

The latest discovery of heaps of biomedical waste on the streets


of Byculla, Mumbai, with rag-pickers rifling through them for
saleable items, once more highlighted this serious threat to the
health of the people of this densely populated metropolis. This
led to squabbles between all the agencies concerned, including
the Masina Hospital, other hospitals in the area, municipal
officials, and the agency appointed to collect biomedical waste,
SMS Envoclean.

A National Aids Control Organisation (NACO) audit report


alleges that almost 3.5 lakh doses of HIV medicines have
become unusable while remaining in the stocks of various
government hospitals of West Bengal. The market cost of
each of these doses is about Rs 10. The audit report mentions
that these include almost 1.5 lakh doses for the drug-using
HIV positive, and about 2 lakh doses for HIV+ children. These
medicines were supplied by NACO based on the demand
made by State AIDS Prevention and Control Societies (SACS),
West Bengal. SACS authorities disclosed that a volunteer
organisation in South Calcutta was given the responsibility of
conducting a statewide survey to determine the number of
HIV-positive people in different age groups in the state. Later,
however, it was found out that the volunteer organisation had
provided fictitious statistics. NACO authorities complain that
the numbers were inflated by at least three times, and that
this misrepresentation would not have been possible without
the collusion of certain pharmaceutical companies, and of
administrators of SACS. SACS representatives admitted that
certain government hospitals overstocked these medicines
for up to 12 years. They also admitted that none of the officers
concerned find it necessary to check the expiry dates of the
huge stocks of medicines.

Hazardous waste from medical facilities is required under the


Bio-Medical Waste (Management and Handling) Rules, 1998,
to be segregated and stored in colour-coded bags depending
on the nature of the hazard, and incinerated at more than 900
degrees Celsius. This is to be done through agencies appointed
for the purpose, or by the institutions themselves. However, the
director of SMS Envoclean has claimed that 80% of Mumbais
hospitals, both public and private, do not segregate their
waste, endangering peoples health, both through the spread
of dangerous infections on the streets, and through the sale of
used syringes and other equipment. The Maharashtra Pollution
Control Board representative, meanwhile, claimed that the
Board carries out inspections whenever it receives a complaint
from the relevant agency.
The incident is only the tip of an iceberg, with similar scandals
surfacing in Vadodaras Sir Sayajirao Gaekwad Hospital, and in
Bangalore. A Bangalore survey had shown that of 1,844 private
health units, comprising 80% of the citys healthcare facilities,
only 30% had clearance from the Karnataka State Pollution
Control Board. With the proliferation of spas and day care
centres which are less easy to monitor, the pollution threat
looms large.

Parijat Bandyopadhayay, 3,50, 000 HIV medicine expired in


stock (Trans.), Anandabazar Patrika, April 15 2012. Available
from:
http://www.anandabazar.com/archive/1120415/
index.html, last accessed on: April 19, 2012].

Sex selection: out in the open

The ghastly discovery of aborted female foetues in a river


in Beed has made the district notorious all over the state
of Maharashtra and beyond. A much deeper malaise has
been exposed with the arrest of three doctors on charges of
Sudeshna Chatterjee and Jyoti Shelar, 80% city hospitals carrying out illegal sex determination tests and abortions, and
flout bio-waste disposal norms, Mumbai Mirror, April the number is growing every day. This crime is an open secret,
15 2012. Available from: http://www.mumbaimirror. as reports say the states own Family Welfare Office (SFWO) had
com/index.aspx?page=article&sectid=15&contentid= warned the government in 2005 about the drastic decline in
2012041520120415205345578a8a99f3f Sir Sayajirao the child sex ratio based on the 1991 and 2001 census figures.
Gaekwad Hospital handling hazardous biomedical The 2011 census has shown that the problem is far worse than
waste recklessly, TNN,May 3, 2012 Available from: http:// supposed, with the fall visible in all 35 districts of Maharashtra,
timesofindia.indiatimes.com/city/vadodara/Sir-Sayajirao- which was so far considered progressive. The sex ratio is lowest
Gaekwad-Hospital-handling-hazardous-biomedical- in the districts of Jalgaon, Aurangabad, Ahmednagar, Beed,
waste-recklessly/articleshow/12985566.cms. Sunitha Rao, Osmanabad, Solapur, Satara, and Sangli. The SFWO report is
Hetal Vyas, Ultimatum to hospitals on biomedical waste also quoted as saying that the figures are worse in those areas
disposal, TNN,May 21, 2012. Available from: http:// with more sonography clinics, of which 78% are concentrated
ar ticles.timesofindia.indiatimes.com/2012-05-21/ in Mumbai, Pune, Nasik and Kolhapur. Ironically, Shirur taluka in
bangalore/31800474_1_biomedical-waste-health-units- Beed, which has a sex ratio of 768 girls to every 1,000 boys, is
healthcare-units
said to have not a single sonography centre.
[ 154 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Officials say a key problem in the area is dowry, and that even
a sugarcane cutter has to pay above Rs two lakh as dowry for
his daughter. Beed district has the lowest male-female sex
ratio among children under the age of six in Maharashtra,
at 801 female against 1,000 male children, according to the
2011 census. The government has responded to the scandal
by forming teams of doctors to tour the cities of Mumbai,
Pune and others to monitor ultrasound centres; by limiting
radiologists to two ultrasound facilities only; and by conducting
raids all over the state on these facilities.

Hindu Business Line Bureau, Government bans TB


serological tests. The Hindu Business Line [Internet], June
19 2012. Available from: http://www.thehindubusinessline.
com/industry-and-economy/government-and-policy/
article3547424.ece G. Srinivasan, Spare the patient!, The
Hindu.com, June 24, 2012. Available from: http://www.
thehindu.com/health/policy-and-issues/article3563003.
ece

The Maharashtra Medical Council (MMC) has announced a


decision to immediately suspend doctors charged with such
offences, without waiting for the courts to pass a judgment.
If they are found guilty, a five-year suspension would follow,
according to Shivkumar Utture, executive member, MMC.

In a controversial case, the Bombay High Court permitted


21-year old Bidhan Barua to undergo a sex-reassignment
procedure. The division bench of Justices SJ Vajifdar and AR
Joshi observed that there is no law that can prohibit an adult
from taking decisions pertaining to his own life. Bidhan had
approached the court asking for his parents to be restrained
from obstructing his planned surgery. He was supported by
a psychiatric evaluation which found his a fit case for the
procedure. The petitioner also said he had felt from his early
teens that he was a woman trapped in a mans body, and that
he had later learned of the remedy for his problem.

Prashant Hamine, Maharashtras been killing baby girls


since long. Afternoon Despatch and Courier, June 06,
2012, Press Trust of India, Beed illegal abortions case:
another doctor arrested. PTI, June 7, 2012. Available
from:
http://www.business-standard.com/generalnews/
news/beed-illegal-abor tions-case-another-doctorarrested/17945 Senior Reporter, Cops told to keep an
eye on hospitals, sonography centres Available from:
http://www.sakaaltimes.com/20120606/46254071609
56411919.htm Sumitra Deb Roy, TNN Jun 8, 2012, Not a
single ultrasound centre in Shirur taluka, Available from:
http://articles.timesofindia.indiatimes.com/2012-06-08/
mumbai/32123512_1_shirur-beed-number-of-girl-child

Welcome ban on serological tests


By a notification dated June 7, 2012, the ministry of health and
family welfare has banned the manufacture, sale and import
into the country of serological or blood-based test kits for
tuberculosis, long considered to be unreliable and inaccurate
by health advocacy groups. The ban had been recommended
by the World Health Organisation last year. With almost two
million new TB cases per year, amounting to one-fifth of the
global burden, and multi drug-resistant TB now at three per
cent of the annual estimate of TB cases, the country can ill
afford such costly and imprecise measures.
A paper published in the National Medical Journal of India is
quoted as saying that around 15 lakh serological tests are
performed in the country annually, costing the public around
Rs 75 crore despite the evidence against them. Most of the test
kits are imported from the UK and France, where they are not
recommended for local use. To quote Dr Karin Meyer of the
WHO Stop TB Department,Blood tests for TB are often targeted
at countries with weak regulatory mechanisms for diagnostics,
where questionable marketing incentives can override the
welfare of patients.
Advocacy groups have welcomed the governments decision
but have stressed the need for strict implementation of the
ban, as well as improved access to reliable tests in the public
health sector.

Sex reassignment: ethical challenges

Serious challenges arise in related cases of mixed gonadal


dysgenesis, a condition in which the childs sex organs are not
clearly male or female. In a recent case, a five-year old child was
operated upon for this condition. Doctors removed the female
sex organs of the child, so that he could live as a boy from then
onwards. Such cases raise grave ethical dilemmas. In a society
ruled by a preference for male children, how much is the childs
interest considered in such decisions? How old should a child
be before such procedures are carried out? Should the child
have no say in a decision which will affect her or his entire
life? On the other hand, parents and surgeons have argued
that given the potential social trauma that such a child could
suffer as she or he grows, they are acting in the best interests
of the child by treating the condition early. Dr Sanjay Oak, Dean
of KEM Hospital, stressed that such surgeries are carried out
only after elaborate tests - geneticchromosome, hormonal,
neurological tests, sonography and psychiatric evaluations
- are done. Other doctors believe that social pressures and a
personal sense of identity are crucial in shaping a person and
hence they should act sooner and not later.
Rediff.com, Bombay HC nod to youth for sex change
surgery, Rediff.com, May 7, 2012 Available from: http://
www.rediff.com/news/report/bombay-hc-nod-to-youthfor-sex-change-surgery/20120507.htm Lata Mishra,
Who gets to decide a childs gender? Mumbai Mirror, May
23 2012. http://timesofindia.indiatimes.com/life-style/
relationships/parenting/Who-gets-to-decide-a-childsgender/articleshow/13407295.cms
Contributions by Chhanda Chakraborti and Meenakshi
DCruz
Compiled by Meenakshi DCruz e-mail: meenakshidcruz@
gmail.com

[ 155 ]

Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

DISCUSSION: Medical Humanities

The patient - doctor relationship


Usha Rajaram
Department of English, UWC Mahindra College, Paud, Pune 412 108 INDIA e-mail: urajaram@muwci.net

Abstract
In this essay I speak about the need to put the patient first when
discussing the relationship between the patient and the doctor.
From my own experience of having been a cancer patient, I argue
that most patients appreciate and feel empowered by knowledge
about their illness if this knowledge is given sensitively. I also try to
explain why doctors need to recognise and respond sensitively to
the patients need to be healed, psychologically, as well, especially
in cases of serious or chronic illnesses.
I would like to talk about the patient-doctor relationship. Its
always talked of as doctor-patient relationship but I think one
needs to look at it from the point of view of the patient. It is
an important relationship when you are ill, perhaps the most
important relationship in your life at that point in time.
I have been ill many times, have undergone many surgeries, and
had lots of interactions with doctors. Besides deriving comfort
and knowledge from them, I have also been very interested in
seeing how they deal with patients.
The power equation between doctor and patient can never
be equal. Clearly, one feels at the mercy of, not just the doctor,
but the whole medical system. One feels like a body that they
are taking care of or, given the degree of specialisation, one
ends up feeling that each is looking at a particular organ, and
how these organs are put together is anybodys responsibility.
That is also because the whole breed of general practitioners
(GP) is becoming extinct. The doctor who takes complete
responsibility for you is a breed that has completely vanished.
Ultimately, its mainly the responsibility of the patient, who has
to look at different aspects of his or her body and decide that it
does work cohesively after all with no help from doctors.
The patient and doctor meet under trying circumstances- at
least as far as the patient is concerned. The context may be
just routine for the doctor. You may have made the choice to
meet the particular doctor. Sometimes, of course, the power of
choice is missing, and you go to the hospital and have to deal
with whoever you meet. The anxiety of the patient is born out
of the inequalities inherent in the situation. This is why its so
important to look at this relationship from the perspective of
the patient.
Im a cancer patient and I have been operated on for breast
cancer twice, with a gap of 18 or 19 years, and both times
it was vital to me that the doctors told me everything. But I

can remember times when the doctors hesitated to tell me


something, and I had to reassure them! Doctors often go by
what they sense the patients want to know. Should the doctor
tell the patient the whole truth?
It is possible that wanting to know as much of the truth as
possible is a peculiarity of my own disposition. However, I
would like to think that if the doctors confided in you and said,
This is a difficult situation, and this is what is happening to
you; I feel that given your participation you can face this with
some equanimity and courage almost demanding those two
qualities as it were then the doctor could say as much as
he intuitively thinks the patient can take, and it will become a
more empowering journey for the patient.
I would say that telling the patient everything is a basic
requirement, even if the patient is not willing to face the truth.
Somehow, the fact that you know the truth, or most of it,
gives you a sense of empowerment. Uncertainty and a lack of
knowledge somehow multiply the monsters in ones head. It is
better perhaps to have a factual and true monster than 10,000
false bogeys. Patients will take it, if they are told with a certain
amount of compassion and supported through it. And, in India,
there are usually enough relatives to support this process.
Anyway, this whole business of knowing the whole truth may
not work after all, who knows the whole truth? I have myself
been treated with tamoxifen and letrozole which counter
estrogen. While talking to doctors and consulting the literature,
I encountered considerable variation in the recommended
duration of treatment, as well as the claimed degree of benefit.
So it seems to me that research itself, in cancer or many other
diseases, is very fuzzy. There is a lot of uncertainty, and I dont
think even the doctors know the whole truth... But I feel it is
crucial to lead up to the truth that the patient can live with.
There is another reason doctors need to tell patients as much
of the truth as they themselves know. This profile of the newly
emerging patient who is Internet savvy, and perhaps has
more information, and more potential for misinterpretation, is
something which the doctor has to reckon with.
I know that a little knowledge can be a dangerous thing, but
even that little knowledge is empowering...
Doctors are a resource, so something like a list of questions
prepared beforehand can be very useful. If you have 10

[ 156 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

minutes with the doctor, it is illuminating if the patient can ask


questions and then have some say in deciding how the whole
conversation goes.
Doctors are generally very willing to answer many questions.
They see that as a very focused way of giving their attention
and care, and even impart medical knowledge when necessary.
And that becomes an important way of communicating and
building up rapport. A patient can also help in that- it is such a
crucial relationship when you are ill.
Thinking of what questions to ask also gives the patient
something concrete to do. I think that in situations like this,
empowerment is a matter of whether you can at least partially
take charge of the conversation or you have to let it happen
whichever way the doctor wants it to happen. This seems like
a small thing, but it could be big in terms of saying: Look, I
have in some sense taken charge of my illness, and that is
important.
In the case of a life-threatening illness like cancer, or a chronic
illness like lupus, there is a long-term relationship between
a patient and a doctor. They meet at a critical point in the
patients life, the doctor saves your life, theres no way the
relationship is anything but deep and sacred. You have a sense
of being cared for and nourished - its much more than just
gratitude. This is implicit in such a relationship- many people
may not express it in words, they usually bring gifts for the
doctor- but it is there.

Being a cancer patient, I had such a relationship with my


oncologists. When the cancer recurred, I could draw emotional
sustenance from the same doctors. Ten years after the surgery,
I could call my oncologist and pick up that relationship from
where we had left off.
One is always looking for that rapport. Most middle class
patients exercise their choice when it comes to doctors. Maybe
were trying to find a replication of the earlier GP model, where
generations of a family went to the same doctor.
When this rapport is missing, I personally believe no healing
takes place. Sometimes, doctors dont take cognisance of
this psychological dimension in the patient. They either
pretend it doesnt exist or are critical of it. I remember when
my doctor - the company doctor but also a sort of GP - felt I
was unnecessarily panicking when I said I wanted to see an
oncologist. He quoted the Sanskrit shloka Samshayo atma
vinashyate (Doubt destroys the soul) and threw me out of his
clinic. I went to the oncologist, fixed the date for my surgery,
then went back to my doctor, and told him that I could not
have the surgery without letting him know; that including him
was important for my healing. He threw his arms around me,
almost with tears in his eyes, and said I was his daughter, and
thats why he had said what he did.
I feel sometimes the patient-doctor relationship can go beyond
the parameters defined by the illness that first brings them
together.

The Indian Journal of Medical Ethics


is indexed on Pubmed.
as are the journals previous titles, Medical Ethics (1993-1995)
and Issues in Medical Ethics (1996 to 2003).

[ 157 ]

Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

My recent experiences as a patient


Sunil K Pandya
Department of Neurosurgery, Jaslok Hospital, 15, Deshmukh Marg, Mumbai 400 026 INDIA e-mail: shunil3@gmail.com

Abstract
As a neurosurgeon, it was a new experience for me to face the
consequences of an accidental falljust before I underwent simple
spinal surgery for relief from backache. This essaydescribes
how I was affected by the unexpected operations that followed.
The physical pain, the anxieties, small inconveniences and the
relatively free use of drugs such as antibiotics, that I might have
taken for granted in my patients undergoing surgery, now took
on a new meaning for me. My perspective on my illness as patient,
rather than as physician, and the special care given to me by
medical, nursing, and paramedical colleagues weretransforming
experiences. Based on these occurrences, I offer suggestions on
how we can improve our approach to patients.
It may sound ironic that a person who has performed several
spinal operations needed to have three himself in rapid
succession.

The beginning
Over June and July 2011, I developed pain travelling from the
lower back down the left lower limb, with progressive reduction
of the distance I could walk without pain. This was against a
background of longstanding psoriasis with associated changes
in the spinal column. My neurosurgery colleague examined me
and decided that surgery was necessary to relieve pressure on
a spinal nerve. I had expected such findings. As with any other
patient, there was apprehension about the surgery, especially
given my age (71 years). I prepared a document listing my
advance directives for my colleague and handed it over to him.
Briefly, it listed instructions in the event of complications from
anaesthesia or surgery that left me severely brain damaged or
permanently incapacitated. Such a document is not legally valid
in India, but I was confident that he would implement my wishes.
The operation was scheduled for August 29, 2011. My colleague
- to whom I had entrusted myself - sought the help of an
expert in endoscopic spinal surgery, currently practising in
Kolhapur. He kindly agreed to come to Mumbai and perform
the operation in our hospital.

Unexpected twist
The next morning before leaving for the operation theatre I
went to the toilet and emptied my urinary bladder. While
emerging from the toilet, I slipped on the wet floor and fell
flat on my back onto the floor. The central segment of the
spinal column (dorsal spine) bore the brunt of the impact. As
I lay on the floor, in considerable pain, I rapidly checked the
movements and sensations of the limbs and found them

unimpaired. This reassured me that there was no damage to


the spinal cord or nerves.
On hearing the thud caused by my fall, my wife rushed into
the toilet and found me unable to rise because of the pain. She
helped me into the upright position and, after the pain had
eased a little, on to my bed. The trolley arrived soon thereafter
and took me to the theatre.
On reaching there, I informed my doctors about the fall and the
pain. Clinical examination suggested injury to the muscles and
ligaments. They advised proceeding with the surgery to which
I readily consented, as I wanted to be rid of the pain down my
left lower limb. The operation went off smoothly and I have
experienced no ill consequences from it. The radiating pain
appears to have been abolished. I was sent home the day after
the operation.
The drugs prescribed were continued at home, paracetamol
being taken orally at home in the same dose as was injected
in the hospital. As I remained pain-free, on the fifth day I
started reducing the dosage with a view to discontinuing it.
However, the pain felt after the fall recurred. I raised the dosage
of paracetamol, with some reduction but not abolition of the
pain. The pain was worse when I lay down on my bed and
when rising, and very troublesome even when I turned in bed,
awakening me almost every hour or so.
A week after the operation, I was in misery and was readmitted
to hospital. Computerised tomographic scan of the spine
showed compression of a dorsal vertebra. It was deemed
to be such that it would settle over time. A combination of
physiotherapy and drugs helped control the pain. I was sent
home a few days later.
Using the prescribed tablets I started attending my consulting
room in the hospital and could see patients over two hours.
Standing and walking were painful, and I stooped visibly when
doing so.
As the pain worsened over time, I consulted our orthopaedic
surgeon who suggested I see our spinal surgeon. After
reviewing the new x-ray and scan films examinations, the
surgeon recommended fusion of five vertebrae with the
injured bone in the centre. Accordingly I was readmitted and
the operation was carried out in two stages, 15 days apart.

Unwelcome side-effects
After each operation, the antibiotics prescribed caused a loss
of appetite but this was worse after the last operation. For over
13 days, I was unable to consume food. I could manage three

[ 158 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

glasses of fresh fruit juice and water each day, and at best, a
small bowl of yoghurt. Eating a spoonful of any solid food made
me feel as if I had a huge ball of lead in my stomach. Even after
the antibiotics were stopped, this difficulty in eating persisted
for over a week.
The consequences were obvious. I lost a lot of weight and there
was thinning and weakness of muscles. This was most marked
in the muscles moving the hip and knee joints.
I also found myself choking with emotion with abnormal
frequency. Gratitude at the unfailing courtesy shown by ward
attendants, nurses and doctors; the thoughtfulness of visitors
who brought books for me to read; the plight of a friend whose
wife was being treated in a room two floors below mine for
a serious illness that was eventually to carry her away and
other similar instances brought me to the verge of tears and
I often had to stop in mid-sentence, to avoid embarrassing
myself and those around me. This persisted for some weeks,
even after I returned home. I am not sure about the cause. I
have witnessed it in patients undergoing serious operations,
such as on the heart. I wonder whether, in my case, it followed
a combination of prolonged pain and sleeplessness before
surgery, helplessness in the hospital, the need to rely on others
for help in simple tasks such as bathing, passing urine and
stools, standing and walking. I was also witness to my wife
taking leave from her research for weeks and spending all day
by my side, attending to my needs.
When I was sent home on November 20, I was unable to climb
or descend a single step. I was taken from my room to my
friends vehicle on a wheelchair and lifted manually on to the
seat. On reaching home, I was helped to descend from the car,
placed on a chair and carried on the chair to my bed. You can
imagine my distress at the extent of my disability. Accustomed
to striding effortlessly, climbing several floors and brisk action,
I was reduced to a state where I needed help with the simplest
movement!

Slow but steady recovery


At home there was slow and steady recovery of sleep and
appetite. I continued the exercises prescribed in the hospital
and could resume walking with the walker. It was necessary
for someone to be by my side as soon as I attempted to stand,
to ensure that I did not fall. My physiotherapist at home assured
me that I would improve gradually. This helped my morale.
As I took increasing quantities of food with high protein
content and whey supplements, walking improved to the
stage where I could discard the walker. This was a defining
moment. I had grown dependent on it, fearing a fall without
it. One evening a colleague visited me, seeing me sit on my
bed, unaided and stand, pronounced that I did not need the
walker any more. He asked me to start walking. I asked for the
walker. Why do you need the walker? I am here in case you
need support but rest assured you will not need it. Even so, he
offered me his hand. Holding it - more for moral than physical
support - I was able to walk from my bedroom to the drawing

room with just mild unsteadiness. There he helped me sit and


forbade me from using the walker any more. Such was my
diffidence that I had to steel myself to do so!
I now walk freely in my home, have progressively become able
to climb three floors, walk around the circumference of our
terrace and along the nearby sea face.
Fresh x-ray films of the operated area showed satisfactory
repair of the broken bone. I should be able to return to work in
two months.

How it feels to be a patient


I experienced a progressive loss of morale lying on the bed,
being sponged instead of having my own bath and using the
bedpan. When absolutely necessary, as in my case, this has to
be endured and there was nothing my treating surgeons could
do about it. Empathising with me did help, but true relief was
only obtained when, at last, I was able to sit, stand and walk.
Like many before me, I bemoan the design and construction
of the bedpan, which is especially painful to a person
who has recently undergone spinal surgery. Bedpans are
usually constructed of stainless steel and are cold, hard and
uncomfortable. On the other hand, stainless steel is easy
to clean and durable. The use of antiseptics renders them
free from germs. Plastic has been shown to form a reservoir
for microorganisms. Bedpan liners made of recycled pulp
(moulded pulp) or biodegradable plastic, containing absorbent
powder to eliminate splashing and spills do decrease infection
but are expensive and not generally available in India.
As a member of the hospital staff, I was privileged. All those
attending me, from the consultant to the persons helping me
with urine and stools, were uniformly kind and courteous.
Many facilities offered to me are not easily available to most
patients. I realise this is unfair to them. It is worth bringing
this differential care to the notice of young staff members and
medical students and helping them devise measures to reduce
such differential care for the benefit of those not privileged. As
you will see from the following paragraph, it may be practically
difficult to treat all patients in the same manner as I was
treated.
During the period when I could not take in any nutrition, our
senior physiotherapist sent me fresh fruit juice from her home
every day. Our dietician willingly offered to make whatever
food I desired to my specifications and did so, unfortunately
without any improvement in my being able to eat what was
prepared so thoughtfully.
The consultants made regular visits and kept me informed
of every step taken. I took great care in refraining from any
interference in diagnostic tests or drug therapy. I know of the
difficulties created when patients or their relations interfere
in the treatment. If all consultants were considerate with
their patients and explained the need for tests or the form of
treatment being administered, this may eliminate interference

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by patient or relations, as their anxieties would have been


addressed.
I found the resident doctors attending to me in some awe. Their
examinations were often restricted to obtaining my opinion of
the neurological findings and inspection of the wounds. They
were careful to cause minimal pain. On the two occasions
during the month I was in hospital for the second and third
operations, when I had to request resident doctors to attend to
me at night, their responses were swift.
In turn, I took care not to trouble them unless absolutely
necessary. This is important as most resident doctors are very
hard worked and under tremendous stress. Calls to them at
odd hours of the night deprive them of much needed rest. I am
fortunate in being a doctor, who can distinguish symptoms that
can wait till the next day from those that cannot. Most patients
have not been trained as I have been and may be unable to do
so. As a result, nurses and doctors may show impatience with
patients who make frequent calls on them. The nurses and
doctors, in turn, must remain aware that such calls are being
made out of distress and need to be dealt with serenely. In
many instances, reassurance and good cheer may be all that is
needed.
In relation to this, there is another very important point to
be made. In many hospitals it is the practice for the resident
doctor, when called at night by the nurse, to listen to the
nurses account of the patients complaint and then prescribe
over the telephone without going to the patients bedside and
examining the patient. The dangers of this approach cannot
be overstated. The nurse does not have the expertise of the
doctor. A symptom may arise from many causes, some of them
with the potential to worsen the patients condition. There is no
substitute for examining the patient when called, even though
it may turn out that it is for a trifling cause. I did not experience
such behaviour during my stay in hospital, but have seen it
during my rounds as a surgeon.
An interesting experience was the recording of blood pressure.
A nurse would check my blood pressure and tell me that it was
140mm/80mm. Three hours or so later another would check it
and find it 170/100 mm. A further three hours or so later, the
third nurse would tell me it was 100/70. Such erratic readings
can puzzle the clinician and even prompt prescription of a drug
to lower blood pressure when it is not really needed.

Some suggestions
Bathrooms and toilets, especially in hospitals and clinics,

must have tiles with surfaces that are not smooth and
reduce the chances of slipping and falling. The ill are
especially prone to such injuries. It is also necessary to
provide firmly anchored bars along the full lengths of the
walls of toilets and bathrooms that can be used by patients
to support themselves.

The blood pressure instruments may need calibration. I also

wonder if there should be periodic exercises when the blood


pressure is recorded by different nurses, one after another,
on the same person to check on consistency in results.
With the urge to treat any finding deemed abnormal, this
is essential to avoid unnecessary therapy that might even
cause complications.
A small rise in temperature to 99.8 degrees prompted our

medical consultant to request white cell counts and when


these showed a rise in total count from 90,00 to 11,000, to
change antibiotics. At that time, there was painful swelling
of a vein at the site of infusions. This was not considered as
the cause for fever and mild increase in white cell count. I
wonder whether it would have been in order to watch the
temperature over the next day or two and obtain another
white cell count before changing antibiotics.
My complaints of loss of appetite usually inspired comments

such as: Consider food as medicine and take it slowly.


Take small quantities every hour or so. I had already
tried these measures but the feeling of a huge load in the
stomach rendered these ineffective. As a consultant later
told me, many patients complain of loss of appetite on
such antibiotics and we may need to take such complaints
seriously. Often especially when the patient is a lay person
several complaints are brushed aside with a statement
such as Dont worry about this. It will soon disappear.
Spending a little time explaining the basis for the
unwelcome side-effect, instituting measures to ameliorate
the symptom(s) when possible and altering the principal
therapy when the side-effect from it is causing damage will
go a long way towards helping the patient.
Suggestion boxes are usually maintained at central locations

in hospitals, often on each floor. It is sad that most patients


disregard them and do not voice their own observations of
shortcomings and recommendations for improving the care
of patients. Hospital authorities may also be at fault, as other
priorities or problems make them neglect these important
feed-back messages born of practical experiences.

Looking back
In summing up, I am, surprisingly, not unhappy at having
undergone this experience. It has enriched me in many ways,
most of all by emphasising to me the vast stores of affection
and care available to me. These were lavished on me by my
colleagues in hospital, my wife, my children, other relatives and
friends. I am deeply humbled.
As a consequence of the severe loss of appetite during the last
fortnight or so in the hospital, I have become lean a welcome
development though I would not recommend this as a means
for losing weight!

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One flu over the doctors nest


Kapil Rangan1, Bhargavi Pawar2
1
Sri Jayadeva Institute of Cardiovascular Sciences and Research, Bannerghatta Road, Bangalore 560 069 INDIA 2 St Johns Medical College, Sarjapur Road, Bangalore
560 034 INDIA Author for correspondence: Kapil Rangan e-mail: kapilrangan@gmail.com

I visited the doc, was feeling quite ill


Hoping for comfort or maybe a pill
Was taken by surprise when he barely did glance,
To explain my ailment, hardly gave me a chance!

Our system is foul! I winced in pain.


Its no wonder we face a brain drain.
Diligently those who honour their seat
Earn barely enough to make ends meet

Papers in a sheaf were handed to me


Blood tests and a scan, even a CT!
For over a day I ran from pillar to pole
The bills in my pocket they burnt a hole.

With generous compensation, the corporates entice


For questionable ethics humanity pays the price.
I had reckoned this to be a noble profession.
Its become a business is my honest confession.

The reports he scanned and shook his head


Hmmmlets try a new drug instead.
Each pill from which, I was to learn,
Pharma and doc, more cash would earn.

Of medical men, if this be the plight


An ignorant man would be a doctors delight!
For, when I sought treatment for a simple flu,
Was he too busy to realise
I was a doctor too?

For a second opinion to a friend he sent


Upon meeting whom, I was quick to repent.
Merit aside, a degree hed bought.
Of medical ken, he knowledge had not!

An undergraduate students view of the medical humanities


Jayesh Vira
Final year medical student, GS Medical College and KEM Hospital, Parel, Mumbai 400 012 INDIA e-mail: jayesh113.60@gmail.com

For the new medical student, admission into medical college


marks the culmination of years of study and effort, and the
beginning of a new era in his life. He is on course to becoming
a doctor. There is enthusiasm as well as expectation. There are
dreams which await fulfilment.
But this excitement does not last long, as he starts experiencing
challenges and stresses that he had not foreseen. These
problems can be listed under two broad categories scholastic
and personal. Scholastic problems include the sudden
transition from the study pattern of 10+2 and CET, to the vast
and complex one of the MBBS; the fear of failing for the first
time; and the pressure to secure a post-graduate seat. Personal
and interpersonal issues include adapting to hostel life, the
trauma of studying in a language in which one is not fluent;
and peer pressure and groupism based on class, regional, or
scholastic differences.

My observations as a student
As an undergraduate, I have observed that the nature of these

challenges and tensions varies as the student goes through the


different years of his education.
The first year is generally spent in becoming acclimatised to
the new environment. Most of the students get to know each
other in the course of the year and segregate themselves into
groups, mainly based on regions. Interpersonal conflicts are
minimal, but personal, linguistic and scholastic difficulties are
dominant.
In the second year there is a lighter syllabus and relatively more
time, opening up opportunities for various extracurricular
activities. However, group dynamics are at their peak, with each
group trying to dominate the others, and this addsto existing
stressors. Lack of confidence, inadequate communication skills
and insufficient orientation towards procedures and practices
all deter students from going to the wards.
In the third year, the additional stress is that of scholastic
performance, even as economic stress may become prominent
for some.

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Senior students can provide appropriate guidance to junior


students. However, seniors invariably end up transferring their
prejudices and tensions to the juniors, and these only get more
acute over the years.

Introduction of compulsory reading hours in the first year,

As students learn to cope with these tensions, and manage


academics, they are left with hardly any time or inclination to
spare a thought for the hardships of others. When passing an
exam and scoring is the chief aim, the patient is bound to get
relegated to being just a case. The habits formed during these
undergraduate years continue into residency and become
the guiding principles of practice thereafter. One can expect
students to be sensitive to their patient only when they are at
ease with themselves.

depicting local customs and traditions to improve general


knowledge.

Suggestions for reform


The roots of most of these stresses can be traced back to the
lack of dialogue between students during the first year. Dialogue
alone can help sensitise students towards each other, clear many
prejudices and prevent the snowballing of stress. Some of the
following programmes could help achieve these changes:
Basic

training programmes in English and regional


languages.

Workshops on coping skills


Random allocation of students to small groups for various

activities.

ensuring that every student reads a specified amount of


regional and English texts, followed by group discussions.
Promoting regular performances of small skits and plays

Proper orientation in the principles of epidemiology and

ward practices before the commencement of clinical


postings.
Workshops and simulations on communication skills and

patient management.
Once we have a class of students who have experienced such
programmes, they can be a positiveinfluence on their juniors.

Conclusion
These programmes and activities must be introduced in the
first year, building up to advanced training in the later years.
Whether we name these programmes medical humanities
or something else, they need to be relevant and useful to the
student, helping him address the problems which he faces
every day, during his undergraduate years. Only then will he
develop an interest in the medical humanities. And only then
will he be in a frame of mind to learn to be a good doctor.

Medical humanities: a resident doctors perspective


Anvita Pauranik
Department of Radiology, GS Medical College and KEM Hospital, Acharya Donde Marg, Parel, Mumbai 400 012 INDIA e-mail: dr.anvita@gmail.com

Abstract

Background: the problem

The barrage of competitive examinations, overwork, sleep


deprivation, and the pressure of expectations all combine to
destroy the dreams that resident doctors have when they start
medical school. The empathy they had before entering this field
fades away, and they eventually become insensitive to their
patients.

The unending corridors and wards of a government hospital


can confuse any first-time visitor. I remember on my first day
at my department, I could not find the Doppler room though
it was just around the corner from where I stood. So surely it is
too much to expect an illiterate old man with his frail wife to
find their way from casualty to x-ray to the ward on their first
visit. Yet many of us would not bother to stop and help such a
person in distress.

Medical humanities may be the means to halt this trend.


Sensitising young minds, using the arts, literature, history and
lessons on social issues, may bring about a paradigm shift in these
doctors outlook towards their patients.
However, for the humanities to be integrated into medical
education, the current curriculum must be modified and made
more clinically and socially relevant. Further, the humanities
cannot be taught in lecture halls; they need to be integrated into
all aspects of medical school. For this, the medical school faculty
should be sensitised to, and trained in, humanities education.

As medical students, and then as doctors, we fail to read


the anxiety and apprehension on our patients faces as they
approach us. We are ruthless in the way we rush to finish with
the long queue of patients. We are mechanical in inserting
catheters, lines and tubes. We do not consider it necessary to
explain procedures in detail, to calm the patient on the table.
It is true that we are overworked and sleep-deprived, live in
inhuman conditions, and must survive the taunts and tantrums

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of seniors. We have struggled through arduous entrance exams,


toiled day and night for years to reach where we are. But as a
result, by the time we realise our dreams of working as postgraduates, we have lost all our ideals. All the compassion,
empathy and sensitivity we had when we entered this field
have faded away.

Medical practice without the patient


The divorce between medicine and the arts begins early
in a students life, right from school. The studious, brainy
bookworms are segregated from their more creative, intuitive
and imaginative classmates. The rigorous, rote-memory-based
examination system throughout their medical education
erases any creativity that they have, as they concentrate on
memorising endless facts and answering non-analytical
questions. When they graduate and enter the real world of
clinical medicine, they are uncomfortable before the real
people who come to seek their help. They forget that medicine
is not just mastering facts and figures; it is an art in itself - the
art of observing, recording, reflecting, and integrating the
events around us.
William Osler, described as the father of modern medicine, once
said: Care more for the individual patient than for the special
features of the diseasePut yourself in his placeThe kindly
word, the cheerful greeting, the sympathetic look - these the
patient understands. (1)
However, for some residents and doctors constantly in search
of what is publishable, patients are mere cases. I have heard a
radiologist looking at an MRI of a brain say, What an amazing
mass, just look how beautiful it is! Just listening to him sent
chills down my spine. I fail to fathom how a malignant mass in
the centre of somebodys brain constitutes beauty. We exclaim
in awe at a unique presentation of a disease process, but we
forget the suffering endured by that person.
The situation is worse when one has paid an enormous amount
just to enter the medical field or get a postgraduate degree.
Add to that the ridiculous annual fees one is charged and you
have doctors who graduate with only one thing in mind: to
recover their investment. This attitude drains the disheartened
student of any remaining trace of empathy. A patient is viewed
merely as a source of income - and this the greatest injustice
one can do to a suffering human being.
In India, doctors can talk about a patients prognosis and
chances of death while standing at his bedside. An invisible
wall is created by doctors using the English language in the
presence of their patients. Patients waitfearfully, while doctors
discuss their fate in medical jargon, and that too, in an alien
language. They wait for their turn to come, thinking that most,
if not all of it, will be explained, only to be turned away with
unsatisfactory replies.
Sound clinical skills and a vast knowledge base form just one
aspect of what comprises a good doctor. If the doctor is unable
to communicate effectively with the patient in an easy and
understandable manner, the purpose of medicine is not served.

What is needed: medical humanities


Sensitising young minds using the arts, literature and
documentaries can gradually bring a paradigm shift in their
outlook towards the patient.
Through literature and the arts, medical students will be
exposed to a variety of cultures, living conditions and places
of which they can have no personal experience. This will bring
a broader perspective to their interaction with patients. The
scope of the humanities is not limited to the undergraduate or
postgraduate level. It will have a far reaching impact on how
these future doctors will interact with, and be perceived by, the
general public.
Have we ever given a thought to what it is like to care for the
terminally ill? To making life comfortable for a disabled child?
Or even to what it is like to be bed-ridden with no feeling
below the waist? There are innumerable sensitive pieces
written by people in such situations. Making some of these
works compulsory or suggested reading could transform a
medical students attitude towards people in distress, and life
in general.

Humanities and the medical curriculum


For the humanities to be effectively incorporated into our
medical curriculum the latter must be transformed. There are
serious flaws both in the current medical school curriculum
and in the method of teaching, acting as fire-extinguishers
towards the scientific temper as well as creativity. The syllabus
is not well defined. The learning objectives are unclear. Exam
questions promote rote learning, instead of testing clinical
and analytical skills. Even before they discover the magic of
clinical medicine, these enthusiastic young doctors-to-be fall
prey to the system of assessment based on memorising facts.
Preparation for postgraduate entrance exams is not addressed
in college, so students attend coaching classes at the cost
of precious days of undergraduate training. Constant stress,
competitionand deadlines lead to tunnel vision, focusing on
medicine alone, and extra-curricular hobbies take a back seat.

The way ahead


Any change will require multiple revamps in the curriculum,
in teaching methods, as well as in the overall focus of medical
practice.
The medical curriculum must become more relevant, with
basic sciences taught in the context of clinical practice. The
curriculum must also be trimmed to cover the basics required
at each stage. For example, ophthalmology and ENT should be
made part of general surgery; they do not need to be taught in
detail for an entire year. Community medicine must be taught
in a more practical and interesting manner. The focusshould
be on India-specific problems rather than rare syndromes or
uncommon presentations. Medical students in India should be
aware of the bigger picture, the important health challenges
that the country faces.

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Teaching and evaluation methods must change. For example,


lectures should be made more interactive, with case discussions
and seminars. Questions based on clinical skills should be given
greater weightage in the postgraduate entrance tests.

literature can help broaden students horizons. Role playand


poster making can be organised on social and health issues.
Films and other media coverage of the topics being taught can
be followed by informal open discussions.

An increase in the number of postgraduate seats will reduce


the cutthroat competition that permeates the educational
system and diverts students attention from their primary
concern the patients welfare. Most important, the obsession
with specialisation should be removed by promoting the
concept of a good, competent general practitioner or family
physician (as in the UK), giving GPs special benefits.

The teaching should highlightsocio-cultural differencesand


epidemiological variations in the disease under study. Public
health education is critical - encouraging medical students to
participate in rallies, camps and drives and organising street
plays for the general public. Students should learn about the
socioeconomic basis of illness, possibly by following poor
families over the period of their medical education, in order to
understand demographics, economics, sanitation, and health
status. This will give them a sense of purpose and help them
understand the larger context of health and disease in India.

How not to kill the baby at birth


Before introducing humanities as a separate discipline, it needs
to be integrated into daily classroom and bedside teaching. For
this the first step is sensitisation and training of medical college
teachers. Teachers are role models, setting standards for their
students, for example, on how to talk to patients. However, not
all teachers can teach the humanities. The degree of interest in
humanities which can be generated amongst medical students
will depend largely on the teacher. These teachers should be
well trained and knowledgeable.
It is important to use various teaching methods. Teachers can
strengthen their arguments by referring to relevant medical
history and contemporary events. Interaction with people
working in other fields like performing arts, photography and

To achieve a balance between the head and the heart in the


medical profession we need to infuse a sense of empathy
from the very start of medical education, introducing medical
students to the humanities at the time in their lives when there
will be the maximum impact.
Acknowledgement: I would like to thank Ulhaas Chakraborty for
his valuable suggestions.
Reference
1. Bean RB, Bean WB. Sir William Osler: Aphorisms from his bedside teachings
and writings. Springfield: Charles C Thomas; 1961. p 97.

Medical humanities ... almost


Neha Dangayach
PGY4, Neurology, Case Western Reserve University, Cleveland, Ohio 44106 USA e-mail: drdangayach@gmail.com

Abstract
Brought up in the traditional education system in a large teaching
hospital in Mumbai, India, I moved on to do specialisation in
neurology in the United States of America. The Indian system
of pre-medical education mandates early choices between the
humanities and the sciences and thus precludes a more wellrounded development of a student. Though medical humanities
is not taught as a subject as part of the medical curriculum in
India, listening to inspiring and learned teachers and the daily
interaction with scores of patients who are willing to submit
themselves to examination in the cause of medical education
is a humbling experience to a sensitive student. I see similar
willingness in patients in the United States. However, a formal
course in the medical humanities, including arts, literature, and
philosophy will surely enrich the experience of a larger number of
undergraduates and postgraduates learning the core subjects and
help in moulding a more rounded physician.

As a beaming 18-year-old I embarked on my medical journey,


not knowing why I wanted to become a doctor; but I knew
this was the only thing I had ever wanted to do. The Indian
education system is extremely focused and warrants that we
choose our paths very early on. At times, I felt that focus took
away from a more well-rounded educational experience with
exposure to various arts and sciences which would have helped
broaden our perspectives. In my experience as a neurology
resident, the medical students in the United States, when
compared to Indian medical students, have had the chance to
pursue a pre-medical course, whether it was learning a new
language or anthropology, music or the fine arts, which perhaps,
enabled them to make a better informed choice, by way of trial
and error, as a result of the options they were able to explore.
This article is by no means a comprehensive comparison of the
different medical education systems in India and the United

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States. It is a narrative of what I have learned about the medical


humanities and the teaching of medical humanities in India
and the United States.
There are certain personality traits which help us become
good physicians; physicians who transcend the boundaries of
age, religion, culture, and languages and heal, if not cure, to the
best of our abilities. Medical humanities is that interdisciplinary
union which seeks to identify all the qualities which make a
good physician and helps young doctors in training to identify
some of those traits in themselves and work towards becoming
better human beings and better doctors in that process. The
New York University website (1) defines medical humanities
broadly to include an interdisciplinary field of humanities
(literature, philosophy, ethics, history and religion), the social
sciences (anthropology, cultural studies, psychology, sociology),
and the arts (literature, theatre, film, and the visual arts) and
their application to medical education and practice.
The continuum of medical humanities starts as we step
into medical school in India. Although, we do not have any
repository of literature, arts, sociology, medical anthropology
or philosophy; somewhere all these sciences and arts manage
to seep through the voluminous accounts of the medical
curriculum. Each aspect of medical humanities is touched upon,
perhaps, not always by way of formal teaching but by means of
examples sometimes knowingly and sometimes unknowingly.
One of the best things I learned in medical school was Non sibi
sed omnibus (Not for self but for all) and slowly but surely, all of
us were being moulded into conscientious young physicians in
medical school.
Medicine has come a long way. We are diving deep into nuclei
to unearth the secrets of life and death. We have learned a
lot along the way, but human suffering has found new ways
to challenge medicine every step of the way. Our standard
textbooks tend to allude to history very briefly, and whether
that manages to inspire awe or wonderment is a little unclear.
Then, how do I remember the story of Insulin, Best and Banting?
How did Pavlovs dog become pop culture? That is because
these stories were related to us by much admired teachers.
As first year medical students, we had group discussions or
dissections in rooms named after great Indian practitioners
like Susruta, or Greek gods like Janus. The writing on the walls
left an indelible mark on my memory, and on those of many of
my classmates, and somewhere a small hope to make a bigger
contribution to the field and take it forward was taking root.
As I began my residency in neurology in the United States, and
began teaching medical students on my service and then as
part of my work of being an IQ group (a small case discussion
group at the School of Medicine at Case Western Reserve
University) facilitator, it only became more evident to me how
different these systems of education were. Of course, grades
or marks mattered in both systems but the approaches to
medical education differed so much that I wondered how such
disparate systems managed to produce equally good doctors.
The emphasis on medical humanities in undergraduate and
graduate medical education has managed to take the form

of various creative curricula across the United States. The New


York University website is a good resource, providing links
to other medical curricula as well as a searchable database
for various literary, movie and pop-culture references to the
medical humanities. However, there are very few instances of a
formal medical humanities curriculum in India. Medical college
curricula in India are based on factual learning. However, when
we start our clinical rotations we learn a lot by observation.
Humility, philosophies regarding healthcare, end-of-life care,
discussions about death and dying, prognosis, and so on are
all learned at the bedside by observing several members of the
medical team lead by example. This learning by observation is
very much a part of the teaching of medical humanities in the
United States as well.
Morality and religion in India are sometimes indistinguishable.
Religious tolerance is an innate aspect of taking care of
patients in India, which is usually not very difficult, as most
of us have been exposed to various religious and cultural
beliefs in our schools and colleges as much as in our homes.
Praying with patients at the bedside was a direct extension of
religious sensitivity as a physician and it helped foster greater
faith and trust. In the United States, I have seen great pastoral
care for patients at the bedside, and solitude in the places of
worship at various hospitals. One can even choose to do a
Masters program in theology to better understand religion
and its role in healthcare but the basic tenet of being tolerant
and respectful of all faiths, in health and more so in disease,
is something we learned throughout our training in medical
schools. As second year medical students, we get formal
teaching in medical ethics as part of forensic medicine and also
receive an introduction to the direct legal implications of our
actions. What I learned about medical ethics was learned more
because of the examples set by my peers, junior and senior
house staff, and faculty members and patients alike. The onus
of teaching the new breed of doctors how to be compassionate
and ethical seemed to rest squarely on the shoulders of
everyone who was involved in our learning of medicine.
In a setting like the King Edward VII Memorial (KEM) Hospital,
Mumbai, which is teeming with patients, patient privacy was
not always easy to maintain; but most of our patients were also
equally eager to share their stories of triumphs and tribulations
with eager groups of medical students and letting us examine
them over and over again to learn clinical exam skills; it was
a universal phenomenon to hear that they were just happy
that they were helping future doctors learn. This was the best
example of selfless charity which was enriching my young
mind each day on the wards. Here at Case Western, when I take
one or two medical students with me to patients private rooms
and ask for patients permission to allow my medical students
to interview them or examine them, I come across the same
eagerness, the same generosity. I find my task of preserving
someones dignity as we learn or teach how to do a clinical
exam much easier here than doing the same with a group of
onlookers in a large ward full of patients. The patients however,
seemed to be at equal ease in both environments.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

On the wards and in our clinics each day in KEM, we helped


out in procedures or assisted in surgeries and watched
various physicians take consent, discuss prognoses or answer
questions posed by families to the attending physicians in
front of the whole medical team and we learned each day how
to communicate with patients; how to comfort their worried
family members, how to inspire confidence in them; how to
be gentle and how to be firm with patients who continually
posed a challenge by being non-compliant or defiant. Now
when I look back at those times I can clearly remember the
god-like worship in the eyes of patients and their family
members; and my memory doesnt fail to echo the words: Well
do whatever you say, doctor saheb. Was it a simplistic belief
that the physician is always right? I wonder now: where did all
that faith come from? How did physicians get elevated to godlike status? Does dealing with matters of life and death make
us even half as omnipotent as the Creator? Was it the lack of
awareness or lack of education or a matter of faith which defied
reason? The adoration which patients and families had for their
physicians was not something we were taught to expect as
part of any formal curricula, but we just saw it each day, and
that faith inspired us to strive to do our best, as someone was
always counting on us to come through.
Do I feel that I missed out on something by not having a formal
curriculum to help me learn about medical humanities? To
a certain extent I do. I wish I had taken the time to read and
admire poetry and literature dealing with medicine; or learn
about Leonardo da Vincis artistic renderings of scientific
concepts. I felt that the emphasis on mastering concepts on
which questions would be set deprived us of the time to stop
and think about how we got here. Did that make me less
compassionate or less appreciative of the wonders of modern
medicine? It did not. Somehow, I managed to learn a little of

everything and my thirst for knowledge and search for the


art in medicine and the medicine in art continues to become
keener. A formal curriculum in medical humanities surely
provides a wide array of choices, and increases awareness; but
compassion, sincerity and humility we all learn by example,
whether by setting our own or from our peers and teachers
alike.
We are fortunate to be living in a world where knowledge is
freely available just like the air we breathe; it is only a matter of
seeking it out. This availability of knowledge has also inundated
us with surplus knowledge which we will find difficult to
navigate and make the best of without the help of proper
guidance. A well-structured curriculum in medical humanities
will help decrease the reliance on experience alone; for
instance, I was fortunate enough to train at the Seth GS Medical
College, Mumbai, with some great teachers, but would I be as
conscientious a physician if I hadnt seen good medicine being
practised as much? We need to increase standardisation among
medical schools across India, so no matter where you train, you
can avail of at least a good standard well-rounded medical
education. Of course, the curricula should have enough scope
for each institution to incorporate its own philosophy. There is
no substitute for exemplary teaching but a formal curriculum
dealing with medical humanities will enrich the time spent in
medical schools in learning core concepts. I believe this kind
of teaching, coupled with the current system of education, will
enable us to produce more well-rounded physicians in India.
Reference
1. Medical Humanities [Internet]. New York: New York University; c
1993-2012. Medical Humanities Mission Statement;1994 [cited 2012 Jul
3];[about 1 screen]. Available from: http://medhum.med.nyu.edu/

Whither medical humanities?


Navjeevan Singh
Professor of Pathology and Coordinator, Medical Education Unit, University College of Medical Sciences, New Delhi 110 095 INDIA e-mail: n.singh@ucms.ac.in

Abstract
Understanding the Medical Humanities (MH) and their role in
medical education is in its infancy in India. Students are initiated
into professional (medical) education too early in life, usually at
the expense of a basic grounding in the humanities, resulting
in warped intellectual growth. The author, arguing against the
wholesale import of foreign systems, advocates free inquiry
by medical educators to evolve a humanities programme
for medical students derived from our own cultural context.
This essay describes the early experiences of efforts to make a
beginning at the University College of Medical Sciences, Delhi.

The author reviews the various strategies used and the challenges
of introducing the subject to the current generation of medical
students.

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Dont you ask yourself why you are being educated?


Do you know why you are being educated and what
that education means? As we know, education is
going to school to learn how to read and write, to pass
examinations, and to play a few games; and after you
leave school, you go to college, there again to study
very, very hard for a few months or a few years, pass an

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

examination and then get a job; and then you forget all
about what you have learned. Do you understand what
I am talking about? Isnt that what we all do?

course, to crack the postgraduate entrance exam. Success does


not necessarily earn the right to pursue a postgraduate career
in a subject of ones choice. Depending on performance, a
person wanting to become a gynaecologist may well have to
settle for being a pathologist. There is a hierarchy to the choice
of subject, which is often determined by considerations of
monetary returns from the workplace.

-J Krishnamurti (1)

Background
Why do we need to educate medical students in the
humanities? Let me begin with an outline of the path to higher
education in India. Consider a childs trajectory from early
school to higher professional education. The school-going child
is encouraged to learn by rote. The ability to recite or reproduce
memorised text is rewarded at each step. Little effort goes into
developing the higher cognitive abilities of comprehension,
analysis, synthesis, and evaluation of knowledge.
At barely 15 years of age, the need to make a career choice is
thrust upon the hapless child. Our educational system assumes
precocity beyond the ability of most 15 year olds to decide
career paths for themselves. Perforce, ambitious parents make
the surrogate decision to prepare the child for a professional
career of their choice. Parents may know what is best for their
child in matters relating to food and friends, but they may make
the wrong choice considering the long-term consequences
that a professional career entails. On the other hand, few
adolescents are equipped for such a choice either.
Often, a childs preparation for a professional career begins
with enrolment in a coaching institution whose aim is to
equip aspiring young minds with a solitary skill: how to crack
the entrance examination of their choosing by honing their
ability to memorise. Then follows a hectic round of classes
tailored to the nuances of each separate entrance examination.
For the next four years, from the age of 15 to 18, when these
children should have been discovering themselves and their
world, their likes and dislikes, inclinations and attitudes, they
lead a blinkered existence with the solitary goal of entering
an engineering or a medical college regardless of the aptitude
required for these careers. We, the parents, teachers, and policy
makers, never inquire about our childrens true vocation or
interests. At 18, the rigours and demands of professional
education deny our adolescents the chance to grow, to
understand themselves, to come to terms with the world
around them, and to decide on their own course.
Far from bringing relief, the joy of those who succeed in
entering a professional course is destined to be short-lived.
Soon the realisation comes that the years of self-denial are
going to last a lifetime. The struggle worsens when parental
pressure to perform mounts. Many are told, Now that you are
here, at least continue and finish the undergraduate course.
There is no way out for the unfortunate trapped soul but to
continue. The heavy investments in intense coaching cannot
simply be discarded for a new career choice.
The misery does not end there. Three years into the MBBS
course, the spectre looms again post-graduate admissions
are on the horizon. Then follow another two-and-a-half years
of intense coaching, beginning in a critical phase of the MBBS

It is not uncommon in our medical institutions for postgraduate


trainees, untutored and unskilled in the nuances of teaching, to
shoulder all teaching responsibilities in small groups, where
teaching is said to be most effective: tutorials, demonstrations,
practicals, and at the bedside. The faculty recruited to teach
confines itself to the least effective form of teaching - taking
lectures, often speaking to large crowds of 150or morebored,
listless students. Small wonder then that the commonest
graffiti etched indelibly into the wooden desks, and in the
minds of the students, reads In memory of those poor souls
who died waiting for this lecture to finish. Taking teaching
beyond the classroom is viewed as an esoteric pursuit best
confined to philosophers and the unbalanced. To ensure full
classes, institutions resort to compulsory attendance, resulting
in vicious cycles of frustrated teachers and increasingly
uninterested students. Oppression is the name of the game.
That many of our students survive the ordeal that we call a
medical education, and actually go on to become outstanding
physicians and compassionate human beings, is a tribute to
their resilience, strength of will, and indomitable spirit.

The need for humanities in the medical curriculum


Nowhere in the scheme outlined above is there a place for the
growing adolescent to be exposed to the humanities. Even
a passing acquaintance with subjects like languages, history,
philosophy, and the arts is simply not possible for those who
are herded into professional education by this route which,
unfortunately, is the rule rather than the exception. Language
skills suffer the most. One has only to struggle through identical
written answers, mistakes and all, in hundreds of answer
sheets at any examination to comprehend the extent of the
problem. The phenomenon is neither new, nor unrecognised.
In an interview (2) with a prominent newspaper, Venkataraman
Ramakrishnan, winner of the Nobel Prize in Chemistry in 2009,
said it all: I grew up in the Indian system and I, unfortunately,
had to choose between humanities and science in high school.
Im making up for it. Im learning Spanish. Ive to take an exam
in January.
Is introduction of humanities during the MBBS course a way
to correct the imbalance created by several years of mindless
pursuit of a single, mindless goal: to obtain a professional
degree in as few years, and as early in life, as possible? How
do we take our students beyond the defined curriculum, into
pursuits which at first appear to have no tangible benefits to
their immediate, short-term goals? Force, as in structuring a
humanities curriculum into the medical, creating yet another
examination to pass, yet another hurdle to clear, marks,
evaluations, the fear of failure, cannot be an option. In the

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

words of the eminent thinker, philosopher and educationist J


Krishnamurti, we should create a school where the student is
not pressed, is not enclosed, is not squeezed by our ideas, by our
stupidity, by our fears, so that as he grows, he will understand
his own affairs, he will be able to meet life intelligently. (1) We
are at a stage where we have the unparalleled opportunity to
do the right thing. Transplanting others ideas of the medical
humanities into the Indian cultural context may appear to be
the easy way out, but is likely to be counter-productive in the
long run. The onus is on us to think this one out for ourselves.
How is it possible to awaken the over-burdened mind to new
thinking, to new horizons? At the University College of Medical
Sciences (UCMS) we have been asking these questions and
seeking answers. Clearly, it is not easy to decide what to do.
To change established thinking and behaviours is a time
consuming, uphill task calling for the patience of Job. We
need committed people, a conducive environment, and the
understanding that we may not see the result of our labour in
our lifetimes.

Medical? humanities
My hope and wish is that one day, formal education will
pay attention to what I call education of the heart. Just
as we take for granted the need to acquire proficiency
in the basic academic subjects, I am hopeful that a time
will come when we can take it for granted that children
will learn, as part of the curriculum, the indispensability
of inner values: love, compassion, justice, and
forgiveness (3).
What is meant by medical humanities (MH)? MH is an
unfortunate term that suggests that medical humanities
are different from the humanities taught in general arts
colleges. Use of this phrase propels us to find a medical angle
to everything that the medical student may have to do with
the humanities. In that sense, it is restrictive, and only serves
to perpetuate the myth that study of the humanities is not
essential to the student of medicine. That the medical students
interest in the performing arts, music, literature, history, culture,
and other similar subjects can only flourish when given a
medical twist is rather irrational thinking. Arguably, if the
learner has a basic foundation in the study of humanities, the
experience can be directed to unravelling the mysteries of
medical relationships. Currently there is a void in the students
minds created by the missing humanities education in their
school and college years. We need to fill this void. To grow, the
learner must be provided with a steady stream of knowledge,
the luxury of choice, and a non-threatening environment.

Our experiments with the humanities


At our institution, we took our first baby steps three years ago.
Using subliminal advertising and guerrilla tactics, we began by
setting up a small group of interested students and faculty. In
deference to the prevailing wisdom of the time we called it our
Medical Humanities Group (MHG). We have experienced much
scepticism, even derision, in the community, but it seems to be

gradually giving way to hesitant curiosity. Strangely, members


of the group seemed to have no misgivings.
One of the earliest activities that we indulged in was to try and
bring about awareness and respect for the environment. An
undergraduate student took the initiative. Being a singer, he
wrote and sang a song bemoaning the plight of the polluted
river Yamuna in Delhi, likening the river to a life-giving mother.
He followed this up by organising a tree plantation exercise in
the campus. Three people planted saplings, while two others
looked on! It was the wrong time of year to be planting, and
the saplings were in the shade of a large tree, in the path of
pedestrians taking a shortcut from the college canteen to the
car park. The plants did not survive the week. It was our first
lesson in learning the odds that faced us.
The Society for Promotion of Indian Classical Music and
Culture among Youth (SPIC-MACAY), a well-known volunteer
organisation that facilitates performances in educational
institutions worldwide by eminent artists, began small. A
role model for the success that volunteerism can achieve, it
graciously provided us with our first real opportunity. We are
inspired by the selfless quality and quantity of its members
contributions to their cause, which is very similar to promoting
humanities in medical education. Awareness and appreciation
of the performing arts by Indian classical artistes is gradually
increasing at UCMS. In the first year, the main hurdle that we
faced was finding an audience for the performances. Our
students and faculty were indifferent, simply not interested.
With time that is changing too, as successive batches of
students volunteer in and contribute to organising these
events, the numbers are beginning to add up.
During this period we explored other avenues. Our students
wrote and performed a street play, under a banyan tree in
the college compound, for the MHG. Titled We all have AIDS,
the acronym standing for academics-induced degeneration
syndrome, the play took a clever dig at the difficulties faced by
students trapped in the rat race of gaining a medical education.
A small number of students attended a reading session, where
everyone was required to read a literary passage or poem. The
participants had never realised that reading could be an art
form. Listening to an audio recording by Zia Mohiuddin, famed
Pakistani performer and exponent of the art, quickly dispelled
that notion.
There is always hidden talent within the community. We
stumbled upon a painter and a photographer of uncommon
ability in one of our residents. He obliged the MHG by
exhibiting a collection of his work at the institution. In our
effort to spread awareness of the humanities we have invited
speakers from diverse fields, including a linguist, a rationalist,
a prominent journalist proponent of the Tibetan peoples
struggle for freedom, and a leading role model for persons with
disability. Infinite Ability, a support group for disabled students,
conceived and established by a prominent member of the
MHG, is currently engaged in this area.
Early in 2011, we had Dr Radha Ramaswamy facilitate a two-

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

day workshop in Theatre of the oppressed. A form of peoples


theatre devised by the Brazilian visionary Augusto Boal, it had
a profound and lasting impact on our group, for whom it was
a cathartic experience. In contrast to most other activities
where the participants are passive onlookers, this demands
active involvement. The workshop encouraged participants
to look inward and examine many of the troubling questions
raised in the earlier part of this article, and helped them find
their own solutions, come to terms with themselves and their
environment, and see themselves as people of high intrinsic
worth. Many communication and interpersonal skills learned in
the workshop have the potential to be profitably used in the
classroom.
The dedication, time and effort of committed individuals is very
encouraging. However, how our experiences will translate for
use in large classes and in imparting actual, hardcore, medical
training is still unclear. We have made a small beginning; where
do we go from here? Chalta hoon thodi door har ik raah-roh
ke saath; Pehchanta nahin hoon abhi raahbar ko main (4). (I
look to every fellow traveller to show me the way; I do not yet
recognise the messiah.) When we cease to seek, we shall no
longer progress.

Conclusion
Students entering professional medical education in India are
disadvantaged by the lack of basic education in the humanities.

In this essay I attempt to examine the reasons for this void as


also to share my personal experiences and efforts to restore
a balance. To keep the avenues of inquiry open, I refrain from
offering solutions or recommendations. Instead, fresh thinking
in the Indian cultural context is advocated.
References
1. Krishnamurti J. What is education? In: Krishnamurti J, editor. Talks with
students Varanasi: Krishnamurti Foundation India; Fifth reprint. 2009;
pp1,5.
2. Gupta S. Some (cancer) treatments are offshoots of molecular biology
(It) will be very exciting. Interview with Venkataraman Ramakrishnan.
The Indian Express .[Internet]. 2010 Jan 4[cited 2012 Jan 23]; Available
from: http://www.indianexpress.com/news/some-cancer-treatmentsare-offshoots-of-molecular-biology...-it-will-be-very-exciting/562906/0
3. Tenzin Gyatso, His Holiness the 14th Dalai Lama. Public lecture [Internet].
2011 Dec 12[cited 2012 Jan 23]. Available from: https://plus.google.com
/108551811075711499995/posts/PzysaPAv927?service=peoplesense
4. Asadullah Khan Ghalib. Deewan-e-Ghalib. New Delhi: Anjuman Taraqqi
Urdu (Hind) , 1999; p76.
Links to further reading
Medical Humanities at UCMS: http://MedicalEducationUnit.yolasite.com/
medical-humanities.php
Radha Ramaswamy and TO: http://www.ccdc.in/
SPIC MACAY: www.spicmacay.com
Zia Mohiuddin: http://www.youtube.com/watch?v=cpEqMqDwlgA
Disability: http://infiniteability.yolasite.com/

Integrating medical education with societal needs


R Krishna Kumar
Department of Paediatric Cardiology, Amrita Institute of Medical Sciences, Cochin, Kerala 682 041 INDIA e-mail: kumar_rk@yahoo.com

Introduction
This paper attempts to present a case for serious reforms in
medical education with the primary purpose of sensitising
future generations of medical graduates to what our society
actually needs from healthcare providers. It is not meant to be
a scholarly exploration of how healthcare should be provided
in our country from the point of view of policy makers or
professionals in the field of public health.

to help connect us with the society that we hope to serve. The


last part of the article will suggest the way forward and how
medical education in India should be restructured.

Background: Indian healthcare delivery

While lamenting the unwillingness of our fresh doctors to serve


rural populations, I would argue that sensitising them to the
need for thisduring their training will allow them an insight
into this dimension of doing good, and may motivate them
to voluntarily be a part of this vast and important part of rural
healthcare in India.

Healthcare delivery in India has been in a state of crisis for many


years. This crisis has, however, escaped public consciousness,
which is largely occupied by issues brought to the surface by
events that attract media attention. For some reason, the total
state of chaos and the extraordinary contradictions that exist
in healthcare delivery to the average Indian citizen have not
been considered important enough to merit a public debate.
Most significantly, some of the brightest minds of the country
that have chosen to become doctors are completely oblivious
to the magnitude of the crisis.

The first part of the article will broadly identify the major
failings in healthcare delivery to the average citizen. I will then
try and identify how our present medical education system fails

The core issue that underlies this crisis is that Indian healthcare
is not organised in accordance with societal needs. In most
countries with relatively good human development indices

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Figure 1: This illustrates an example of the situation with coronary artery disease. Today, it has perhaps emerged as one of our significant problems
affecting a substantial proportion of the population. The disproportionately high compensations offered for procedure-based services contribute to
serious inequity. Most healthcare providers would prefer to be associated with services that offer the most compensation even if their services benefit
a smaller proportion of individuals.

(Cuba, Costa Rica and Sri Lanka are examples), the government
healthcare network supports much of the primary and
secondary level healthcare. This allows delivery of basic services
in accordance with healthcare needs and priorities.

known that government subsidies in India do not reach


the poorest. Most of the subsidies are consumed by the
relatively affluent because of flawed distribution (2).
Very little emphasis on preventive services at all levels: While

preventive services are extremely cost effective, only a small


proportion of healthcare providers are actively involved
in supplying them. There are few incentives for provision
of preventive services in the private sector, and the
government sector suffers from poor accountability (3).

Since independence, the role of government in catering to


healthcare needs in India has progressively diminished. More
importantly, there is considerable erosion of standards in
services provided by the government, together with substantial
deterioration of the quality of many medical colleges.
The burgeoning private sector in India was in a position to
step in and fill the increasing void left by the government
sector. Unfortunately, it has developed like any service sector
industry, driven almost entirely by market forces. Even today it
remains largely unregulated, aggressively seeking a market for
its services. Unfortunately, illness affects everyone regardless
of economic condition and most illnesses can be managed
without procedures.
Todays healthcare crisis is a simple reflection of the
fundamental disconnect between the actual health priorities
of the population and what the existing healthcare delivery
system is seeking to provide.

Absence of an effective national programme or policy for many

common illnesses that affect Indians, particularly the rural


poor(4).
Disproportionate growth of procedure-based services as

against cognitive services, since they offer a much higher


compensation (Figure 1)(5).
Inappropriate

recommendation of expensive diagnostic


and therapeutic procedures for situations with marginal or
doubtful benefit (6).

Wide-spread acceptance of unethical practices: Malpractices

such as cut practice for patient referral are no longer


considered unacceptable by most members of the Indian
medical fraternity today (6).
Promotion of international medical tourism in the face of

Aspects of the crisis


The examples below illustrate the disconnect between societal
needs and the manner in which healthcare is delivered in India.
Inequity: This is the most striking feature of dysfunction of

healthcare delivery in India. Inequity in healthcare manifests


itself in stark contradictions: highly sophisticated healthcare
facilities co-exist with extreme deprivation of the most basic
services. Wide geographical variations in basic health indices
are also a manifestation of inequity (1).
Inappropriate distribution of government subsidies: It is widely

serious domestic inequity (7).

Medical education: where it all began


The origins of this deeply dysfunctional situation in our
healthcare system canbe traced back to our medical education.
The seeds of societal disconnect are sown in the formative
years of medical education (Figure 2).
Reflecting on my own years as an undergraduate in Maulana
Azad Medical College and as a postgraduate at the All India
Institute of Medical Sciences, I recall that the brightest among

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

us chose to settle overseas, mostly in the United States and


England. The motivation to move out was not necessarily
money. All those who left felt that the existing opportunities
in India would not satisfy them intellectually. This trend has
persisted even when it is increasingly obvious that there are
many more opportunities in India, an emerging economy;
rather than in the US, wherehealthcare opportunities are on
the decline. Very few visualise the prospect of making a much
larger impact in the health sector in India where there is a
strongly felt need for quality professionals.
It is increasingly apparent that with every generation there is
a growing disconnect between our medical students and the
society they live in. Why do we, in our formative years, seldom
develop a deep desire to serve the society that we live in?
Why do medical students graduate without internalising the
healthcare priorities of the country? The most academically
accomplished young doctors do not necessarily find the health
challenges in India intellectually stimulating, and choose to
leave the country. Why are we unable to harness their intellect
to address the nations problems?
Reflecting on my medical school curriculum and the academic
environment I grew up in, I realised that the overwhelming
emphasis was on acquisition of technical and scientific

knowledge. Medical ethics received minimal attention. I do


not recall discussing case studies that raised serious ethical
questions. We had absolutely no understanding of the
microeconomics of healthcare in India. We were completely
unaware that the huge expenditureof most familieson
healthcareis a major cause of debt in rural families. The serious
shortcomings in our national health indices were seldom
discussed in detail.
While interacting with patients, we were encouraged to limit
ourselves to information that had a bearing on what could have
contributed to the patients illness. We specifically distanced
ourselves from details that the patient and his family were keen
to share, if we did not consider them relevant to arriving at a
diagnosis. We made little effort to understand the impact of the
patients illness on his or her livelihood. We often did not try to
determine whether his or her economic condition would allow
adequate treatment. There were very few role models among
senior physicians who displayed and encouraged a high degree
of compassion and were seriously interested in the social and
economic condition of their patients.

What is the way forward?


What is urgently needed is perhaps not a newer and better
technology, but deeper integration of the existing technology

Figure 2: This figure attempts to trace the roots of todays dysfunctional healthcare delivery system in India to the failings of its medical education. The
pool of todays doctors contributes to medical schoolteachers of tomorrow. Often the most successful among todays doctors become health policy
makers of tomorrow who then perpetuate the dysfunction.
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

with societal needs. Because of the increasing costs and


complexity of healthcare delivery, there is a critical necessity
to be familiar with the social and economic determinants of
healthcare. This can only happen through an understanding
of the society we live in. Medical education in its current form
does not equip medical graduates to cope with the demands
of the increasingly complex healthcare environment of the
future.

A wish list of disciplines and subjects for inclusion in


medical college curricula of the future
National health indices
Relationship of health indices to human development
Regional variations (geographic inequity)
International comparisons

Social, economic and cultural determinants of


health

If we are able to reorient our medical education significantly


and start producing a generation of doctors that is sensitive to
societal needs, they could potentially contribute to stemming
the rot that has set in. A critical mass of enlightened doctors
can potentially influence health policy. Policy makers and
regulators who emerge from this pool of sensitised doctors can
have a strong impact on the health policies of the future.

Education, income, specific cultural practices

Health systems
Governmental health systems: structure, organisation, and

shortcomings
Alternative providers: private sector, NGOs

It is clear that the undergraduate medical curriculum has to


be drastically restructured. This can perhaps be realistically
achieved over an extended time frame. Such a restructuring
will require inputs from a wide range of experts including
social scientists, practising doctors, public health experts
and health administrators.Tomorrows doctors need to be
grounded in the cultural, social and economic determinants
that influence health and healthcare delivery. More attention
needs to be devoted to the most significant national public
health priorities, determinants of various national health
indices, and rapidly changing lifestyles as consequences of
urbanisation and globalisation. The shortcomings and failings
of government healthcare delivery structure at all levels need
to be emphasised. The role and impact of the private sector,
regulations of healthcare, and the micro and macroeconomic
impact of heath should also receive emphasis. A wish list
of some of the areas that will need to be integrated with
undergraduate medical education is listed in the accompanying
table.
While postgraduate training could be hospital-based, the
focus for undergraduate education should move towards the
community. Adoption of representative families by medical
students in the region served by the medical college can help
create a deep connection with the community. Students could
adopt and follow families that have one or more members
affected with significant illnesses and obtain a first-hand
understanding of how they impact the lives and livelihoods of
the affected families. The complexities of healthcare delivery
would be apparent and this will help them develop as more
insightful and sensitive doctors. A mandated period of rural
service can be a life changing experience if carefully supervised.
This period can be used by the medical student to develop
insights into social and economic determinants of health and
the failings of available healthcare delivery systems.
With serious erosion of ethics at all levels, it is vital that
tomorrows doctors receive comprehensive education in
medical ethics. This is perhaps most effectively done through
practical case studies. Examples of ethical dilemmas, and ethical

Inequity in healthcare

Regulation of Indian healthcare


Medical Council of India: original role envisioned and

actual impact
Other regulatory authorities: drug controllers, state medical

council
Regulation of hospital and clinics

Ethics in medical practice and clinical research


Relationship of the medical fraternity with the healthcare

industry

The economics of healthcare


Government and private insurance providers
Microeconomics: impact on individual families
Models of cost-effective medicine

Healthcare planning and policies: core principles


Defining health priorities and resource allocation

Practical training and workshops


Communication with patients and their families
Case studies in ethical dilemmas
Case studies in ethical violations
Economic and social impact of illness on individuals and

families

violations should be discussed in carefully structured sessions.


This should cover medical research and clinical practice. The
relationship between the medical fraternity and the device and
pharmaceutical industry should be discussed.
The lost art of communicating with patients needs urgent
attention. Medical students need to be taught how to
communicate with patients on a wide range of issues. In the 28
years that have elapsed since I graduated, I have consistently
learnt that it is richly rewarding to get seriously interested in

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

our patients lives. This is something that traditional medical


education does not necessarily encourage. Some questions
that we seldom ask when we evaluate patients are actually of
tremendous importance. A few examples could be: How far did
you have to travel to get here? How is your family coping with
your illness? How will your family cope till you recover? How
will you pay for your treatment?
A genuine and heartfelt enquiry into the lives of our patients
almost invariably helps us connect emotionally with them. This
may transform relationships, establish a great deal of trust and
eventually enable a much better outcome.
There are successful models of affordable healthcare delivery
that have been developed in India. The Aravind Eye Care
System is a good example of an innovative network that can
be afforded by those living at the bottom of the economic
pyramid (8). There are also successful examples of low cost
medical implants developed and manufactured in India, such
as the Jaipur foot (9) and the Chitra heart valve(10). These
accomplishments should serve as a source of inspiration for
many of todays medical students. There are a number of
examples of innovations in healthcare that do not find their
way into the mainstream consciousness of medical students. It
is necessary to contextualise our curricula not just to identify
our unique healthcare needs, but also to identify and study
successful innovative practices in affordable healthcare in India
and the rest of the developing world.
A number of additional measures are worth considering. A
system that uses the services of a large number of medical
graduates to deliver primary healthcare appears to be an
attractive prescription for some of the failings of our health
systems. Unfortunately, most state governments have failed
to implement compulsory service among under-served
populations for medical graduates. The virtual collapse of
primary healthcare networks in many areas of the country
does not allow for adequate supervision of care delivered

by inexperienced doctors. It may be worth exploring the


possibility of a mandated rural service of medical graduates
after a thorough examination of specific shortcomings that
come in the way of successful implementation.

Conclusion
The crisis in healthcare in India today stems from a serious
disconnect between healthcare delivery and societal needs,
the roots of which can perhaps be traced back to seriously
flawed medical education. This can only be remedied through a
drastic restructuring, with thoughtful inputs from a wide range
of disciplines that includes sociology, economics, ethics and
public health.
References
1. Balarajan Y, Selvaraj S, Subramanian SV. Health care and equity in India.
Lancet. 2011Feb 5;377( 9764):505-15. Epub 2011 Jan 10.
2. Mahal A, Yazbeck A, Peters D, Ramana GNV. The poor and health service
use in India. Washington, DC: World Bank: 2001.
3. ODonnell O, van Doorslaer E, Rannan Eliya RP, Somanathan A, Adhikari
SR, Harbianto D, Garg CC, Hanvoravongchai P, Huq MN, Karan A, Leung
GM, Ng CW, Pande BR, Tin K, Tisayaticom K, Trisnantoro L, Zhang Y, Zhao Y.
The incidence of public spending on healthcare: comparative evidence
from Asia. World Bank Econ Rev. 2007; 21(1): 93-123.
4. Patil AV, Somasundaram KV, Goyal RC. Current health scenario in
rural India. Aust J Rural Health. 2002;10:12935. doi:10.1046/j.14401584.2002.00458.x
5. Gangolli LV, Duggal R, Shukla A. Review of healthcare in India
[Internet]. Mumbai: Centre for Enquiry into Health and Allied Themes.
2005[cited2012 May13], Available from: http://www.cehat.org/go/
uploads/Hhr/rhci.pdf
6. Yesudasan CAK, Behaviour of the private sector in the health market of
Bombay, Health Policy Plan.1994;9(1):72-80. doi 10.1093/heapol/9.1.72
7. Sengupta A. Medical tourism in India: winners and losers. Indian J Med
Ethics. 2008 Jan-Mar:5(1):4-5.
8. Rangan VK, Thulasiraj RD. Making sight affordable (Innovations case
narrative: The Aravind Eye Care System). Innovations.2007 Fall;2(4):3549.
9. Sethi PK, Udawat MP, Kasliwal SC, Chandra R. Vulcanized rubber foot for
lower limb amputees. Prosthet Orthot Int. 1978 Dec;2(3):125-36.
10. Bhuvaneshwar GS, Muraleedharan CV, Vijayan GA, Kumar RS, Valiathan
MS. Development of the Chitra tilting disc heart valve prosthesis. J Heart
Valve Dis. 1996 Jul;5(3):448-58.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Embracing the unknown: introducing medical humanities into the


undergraduate medical curriculum in India
Radha Ramaswamy
Centre for Community Dialogue and Change, A-6, Grasmere Apartments Osborne Road, Bangalore 560 042 INDIA e-mail: radharamaswamy08@gmail.com

Abstract

about their profession and about their own relationship to it.

Medical education fails to address the medical students many


questions, doubts and anxieties about his profession and his own
relation to it. Students growing disillusionment with the profession
and increasing disconnect with the realities of the healthcare
scene in India have reached critical levels, resulting in a general
clamour for reform of the medical curriculum. Many look towards
medical humanities for the answer to the problem.

The need for curricular reforms, long overdue, is felt across the
board by all stakeholders, even if the nature of the needs, and
their articulations from different quarters, might vary. As we try
to address this urgent demand for change, and look hopefully
towards medical humanities as the shape this change might
come in, it is important that we carefully examine some of the
debates around it, and try to create a model appropriate to our
own context.

Referring to some of the available western thinking and practice of


medical humanities (MH), this paper recommends the evolution of
an indigenous model which will draw on the growing body of new
scholarship on India in the humanities and the social sciences.
Some guidelines are offered for starting an MH programme,
stressing the need for a flexible and broad-based approach, and
a participatory pedagogy focused on students needs, that draws
creatively on available resources. Rather than viewing the arts as a
discrete addition to our personalities, an MH programme needs to
show us how to integrate the multiple facets of our personalities.
I am certain of nothing but the holiness of the hearts
affections, and the truth of imagination.

Rather than outline a one-size-fits-all blueprint for an MH


programme, this paper will suggest some essential features
for a course that can address some of the deficiencies in the
undergraduate medical curriculum. Suggestions will be offered
on how a college might go about starting an MH programme.
Understanding and articulation of the approach is emphasised,
rather than valorising specific disciplines over others, or listing
syllabus items. At this prenatal stage in the life of the MH
programme in India, it seems vital to get the approach right,
rather than work out details of the course content.

Medical humanities a definition?

John Keats

Background
In September 2010, about 100 people, medical teachers
and students, administrators and policy makers gathered in
Mumbai (1) to discuss reforms to the medical curriculum. The
round table revealed a fundamental and glaring feature of
medical education in the country: students who enter medical
colleges with a desire to be good doctors seem to lose belief in
this possibility in the course of their education.
That may seem like a deliberately provocative statement
to make, but that is not the intention. From what students at
this round table shared, and based on formal and informal
interactions with medical students and faculty over the last
year and a half (2), it would appear that the definition of a
good doctor undergoes drastic reshaping in the course of
medical education, mostly resulting in a whittling down of
the comprehensive original image. Often this happens in
deference to what is loosely referred to as the demands of
the time- which includes the strong influence of available
role models, the prevailing medical culture , and the inability
of the curriculum or medical teachers to satisfactorily address
students experiences of anxiety, disillusionment or doubts

First, what MH is not: MH is not a syllabus to be covered


in a certain number of weeks or months. It is not a set of
communication strategies a medical student can pick up, to
make a patient feel cared for Greet a patient with a smile,
introduce yourself, sit down on his bed, do not appear to be in
a hurry.
MH is a bold and continuous search for connections between
medical practice and the realities of our world. It is an attempt
to challenge ones own assumptions about how things have
to be. It is an enrichment of the mind and the soul through
exposure to diverse knowledge systems, learning to see
with the imagination, and feel what you dare not feel. It is an
education in confronting contradictions within oneself. It is an
encouragement to rest in the unknown, without fear or the
urge to seek immediate resolutions.
Can doctors have doubt? If a doctor makes a mistake, can
he acknowledge it? Is it possible to build a patient-doctor
relationship in a non-adversarial mode, in a climate of non-fear?
How can doctors in the making deal with their doubts and
fears about their own inadequacies, about competition, about
the industry that the medical profession has become, about
the fading idealism?
An MH programme can address these and similar questions.

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

We in India are latecomers to the field of MH, or at least to the


formal introduction of the discipline in the medical curriculum,
and thus have an opportunity to learn from the pioneers.
The Centre for Medical Humanities in London offers the
following definition: Medical humanities is an interdisciplinary
and increasingly international endeavour that draws on the
creative and intellectual strengths of diverse disciplines,
including literature, art, creative writing, drama, film, music,
philosophy, ethical decision making, anthropology, and history
in pursuit of medical educational goals.(3)
The definition emphasises that the arts and the humanities, if
introduced in the medical curriculum, are to serve the pursuit
of medical educational goals. The need to show a direct
relation between the introduction of the arts and humanities
and professional benefits for the medical student is thus
emphasised. For example, if residents are asked to discuss a
poem, the purpose of the activity is not to improve their literary
analytical skills (though that may also happen incidentally) but
primarily to fulfil the goals of their medical education.
Such an instrumentalist definition and approach is followed in
most colleges offering MH. But many ask: Isnt an introduction
to the arts and humanities good in itself? Isnt it demeaning
to the arts and humanities to attempt to make them serve the
purposes of medical education? And how is it possible to prove
their benefits to the medical profession?
All the available writing on the subject corroborates the view
that an introduction to the humanities (taken broadly to refer
to all the subjects mentioned in our definition above) has
multiple benefits immediate and long range impacting
the student-doctor both as individual human being, and as
professional (4-6). For example, working with complex literary
texts enhances students ability to understand the complex
nature of communication, and impacts their interactions with
patients, their families and their colleagues. It also sensitises
them to the role of social and cultural factors on patient
behaviour and that of caregivers.

Some guidelines for the introduction of an MH


programme
An MH programme seeks to address the needs of medical
students not addressed by the regular MBBS curriculum in
India. These relate to an individuals emotional responses to
the experience of becoming a doctor, of gearing up to practise
medicine in a world that challenges many of the assumptions
underlying medical education, of learning to be a professional
with a clear sense of social purpose. Although individual
medical colleges will deal with these issues based on their
stated mission and vision, the administration, the faculty, and
the profile of their students, and therefore, should design MH
programmes to suit their particular needs, it is possible to set
down some broad guidelines (8).

The preparation
Some suggestions as we prepare ourselves for this unfamiliar
task:
1. A meeting of all students (not just those who will be in
the programme) and interested faculty to brainstorm the
question: Who is a good doctor? Compile a list of qualities
prioritised by the group. This will help give direction to the
process of framing the syllabus.
2. Identify major areas for study. Each person narrates a real
incident from their time in medical college that posed a
conflict, raised questions or created doubts. Generate a list
of unresolved questions and conflicts that plague medical
students through their years of training. This will help
identify issues that an MH programme can address.
3. Set down the objectives of the MH programme, first broadly,
and then more specifically as they will be addressed in a
particular institution. These could include:
a. helping learners to become aware of, and understand
the impact of class, caste, gender, language and other
socioeconomic and cultural factors on illness, how
patients and their families respond to illness, and how
they, as doctors, interact with patients and their families.

Perhaps the most significant departure from this originally


western thinking about MH is summed up in the following
words. Addressing the mismatch between the claims of
medical science and the broader effects of the culture of
medicine in India today, the authors ask whether better
educational practices, updated curricula, better management,
and raising awareness about gender sensitivity were adequate
strategies [or]coming to grips with these questions would
require inputs from new scholarship on India in the social
sciences and humanities, an in-depth assessment of the current
deficits in the practice of medicine, and careful reflection on
the specifics of responsive and responsible practice. (7)
While we should be wary of getting bogged down in debates
about definitions, they will assume great significance for
curriculum planners, faculty and administrators as they begin
implementing an MH programme in their institutions.

b. enhancing learners ability to recognise, understand and


respond sensitively to the multiple perspectives and
different value systems as they operate in interactions
with their patients, patients families, and their
colleagues.
c. sensitising learners to the complex nature of
communication, and developing the skills of listening
to and interpreting narratives by patients, their families
and their own colleagues.
d. encouraging and developing skills in learners to
become reflective practitioners.

A. Planning the programme


Ideally, the MH programme should be mandatory for all

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

students, and I would argue for the inclusion of some elements


of MH in the curriculum every year of the undergraduate
medical programme. But initially, institutions might face several
challenges and constraints. Therefore, I urge colleges to start
the programme, with whichever of the following models
works for them, keeping in mind the essential principles of the
programme. After all, flexibility is at the heart of the subject.
Regular and mandatory weekly classes for students in the

first two years of medical education.


A voluntary programme based on the arts and humanities

with a choice of electives.


A series of seminars, conferences, and talks on issues both

medical and non medical, ranging from euthanasia to


genetics to ethnicity, illness, gender and violence.
Short-term courses based on any one of the arts

One university that conducted a voluntary programme spread


over six months, with weekly sessions of two hours each,
records that the feedback was truly remarkable for a course
that occupied so little of the participants time (4).

B. Methodology: learners, faculty, and course content


To fulfil the goals of the programme, irrespective of the model
adopted, the methodology needs to bring into alignment three
key components of the course - the learners, the faculty and
the course content in order.
1. The learners: To achieve its goals, the MH class has to be a
safe space, allowing free sharing of ideas and opinions.
Small groups of five or six encourage all learners to
participate. If this is impractical, a facilitator can introduce
an activity to a large group, split them into small groups for
discussions, and have each group report to the class when
the task is completed.

The programme needs to be learner-centred, and learnerfriendly. Identifying learner needs has to be a continuing
process throughout the course, mandating learner feedback
throughout.

2. Identifying faculty: The chief purpose of the MH course is


to provide inputs not provided by the regular medical
curriculum. Therefore the more diverse the team teaching the
MH course the better. If there are faculty interested in some
of the arts, or having a deep knowledge of non-medical
disciplines such as sociology or philosophy or literature or
drama, it would be an excellent idea to let them develop
course material from their areas of interest. As we are
injecting something new and unfamiliar, an orientation for
the regular medical college faculty is essential, and this can
come from a person from a humanities background. In the
initial years such a person needs to be full time, in order to
be available for on-site support. Faculty and students may
be guided through new teaching methodologies, small
group dynamics, and discovering creative and individual

ways of adapting real life material for teaching purposes.


3. Course content: A broad structure or framework with clearly
articulated objectives is essential, within which there is
plenty of room for facilitators and students to be creative
and improvise. The idea is to make the course enjoyable,
through not only different content, but also different
methods of delivery, the element of surprise and suspense,
and, above all, participatory learning. The faculty and
students explore and learn together in an atmosphere of
democratic sharing.
The element of enjoyment is important, especially in voluntary
courses. Small groups and activity-based courses can ensure
that students stay motivated. In India, where we are likely to
have multiple languages in a classroom, and also differential
abilities in English, nonverbal media such as music and painting
can be explored for their power to evoke strong feelings
without words.

Conclusion
Sir William Osler, one of the greatest medical teachers of all
time, said: The whole art of medicine is in observation
to educate the eye to see, the ear to hear and the finger to
feel(9) The kinaesthetic feel of that statement says it all.
It is high time we learned to integrate the different dimensions
of our personalities. Let us try to be whole, again, as we are
meant to be.
References
1. Wadia LC, Vishwanathan R, Mavani M. Reforms in medical education to
promote accessible and affordable healthcare for all[Internet]. Mumbai:
Observer Research Foundation. 2012 Feb. [cited 2012 Jun 18]. Available
from: http://zeeba.orfmumbai.org/file/read/1911/reforms-in-medicaleducation-to-promote-affordable-and-accessible-healthcare-for-all
2. Centre for Community Dialogue and Change. Promoting theatre of the
oppressed in education [Internet]. Bangalore: CCDC India; c2011-2012.
Workshops; 2012 Jun [cited 2012 Jun 18]; [about 2 screens]. Available
from: http://www.ccdc.in/theater-oppressed-workshops
3. Kirklin D. The Centre for Medical Humanities, Royal Free and University
College Medical School, London, England. Acad Med. 2003 Oct;78
(10):1048-53.
4. Bonebakker V. Literature and medicine: humanities at the heart of health
care: a hospital-based reading and discussion program developed by
the Maine Humanities Council. Acad Med. 2003 Oct;78(10): 963-7.
5. Wellbery C. Do literature and the arts make us better doctors? Fam Med.
2000 Jun;32(6):376-8.
6. Lenahan P, Shapiro J. Facilitating the emotional education of medical
students: using literature and film in training about intimate partner
violence. Fam Med. 2005 Sep;37(8):543-5.
7. Zachariah A, Srivatsan R, Tharu Susie, editors. Towards a critical medical
practice: reflections on the dilemmas of medical culture today. Hyderabad;
Orient BlackSwan; 2010, p ix-x.
8. Shankar PR. A voluntary medical humanities module at the Manipal
College of Medical Sciences, Pokhara, Nepal. Fam Med.2008 JulAug;40(7):468-70.
9. Osler W. The hospital as a college. In: Aequanimitas, with other addresses
to medical students, nurses and practitioners of medicine. Philadelphia: P
Blakiston;1906:327-42.

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Healthcare the Ayurvedic way


Rama Jayasundar
Department of NMR, All India Institute of Medical Sciences, Ansari Nagar, New Delhi 110 029 INDIA e-mail:ramajayasundar@hotmail.com

Abstract
Ayurveda, the indigenous medical system of India, has integrated
the concept of interconnectedness into its understanding of health
and disease. It considers the human body as an indivisible whole
with a network of interrelated functions, mind and consciousness,
wherein a disturbance in one part will have repercussions in other
parts as well. The key to health is for these factors to maintain
stability since disease is seen as a perturbation in this network.
Ayurvedic treatment aims not only at removal of disease, but also
at the restoration of the equilibrium of bodily functions.
The centuries-old science of Ayurveda, apart from being a holistic
form of medicine, also clearly defines the student-teacher and
doctor-patient relationship. It sets high ethical standards of
professional and personal integrity for the doctor, teacher and
student. In addition to being technically skilled and well-read in
the science, practitioners of Ayurveda must be compassionate
and empathetic. Students of Ayurveda are taught the importance
of compassionate caring for patients and maintaining personal
integrity.

Introduction
The societal impact of ill health is on the rise, with some
diseases affecting not only the health of individuals but also
that of a nations economy with their increasing healthcare
costs (1). There is a growing consensus that the current system
of healthcare should shift from its technology, doctor and
hospital-oriented approach to a more patient-oriented system
(2-4). It is also being realised by a population weary of synthetic
chemicals (5, 6) that conventional western medicine alone
cannot handle the mushrooming of diseases, underscoring the
need to widen the scope of healthcare to include alternative
medical systems. All these inevitably bring into focus the
patient-centric traditional healthcare medical systems like
Ayurveda. The growing interest in Ayurveda is not only
because it is free of synthetic chemicals, but also because of its
integrated approach to health and disease (7).This article, while
outlining the perspective of Ayurveda, also seeks to highlight
how it approaches the patient as a complex and complete
human being, addresses health and disease from a larger
perspective, and empowers people to be responsible for their
own health. The article also briefly outlines medical ethics as
enshrined in Ayurveda.

Functional and systems perspective of Ayurveda


In Ayurveda, the perception of the human body differs
significantly from that of western medicine. The former looks
beyond structural reductionism and considers health as a
complex interrelationship between body and mind, reflected

at all levels. In Ayurveda, an organism is viewed as a system of


relationships defining functions which are manifested through
structures. Although a number of theories contribute to
Ayurveda, the theory of dosha (vata, pitta and kapha together
constituting dosha) is an undercurrent felt throughout the
Ayurvedic understanding of health, ill-health and treatment
of disease. The words vata, pitta and kapha in Sanskrit, the
language of Ayurveda, refer to functions like movement,
transformation, support and growth, respectively, and a set of
physico-chemical, physiological and psychological parameters
contributing to these functions (8). A function is an emergent
property of many contributing factors from structures and
biochemicals, to physiological and psychological activities. A
functional viewpoint will, therefore, be inclusive, taking into
account all factors contributing to the function.

Health and disease in Ayurveda


Ayurveda considers the human being as a combination of
two basic elements: consciousness (chetana) and inert matter
(jada). The relationship between these two entities makes a
human being. The realms within, therefore, consist of not only
the physical and physiological aspects, but also the mind and
subtler levels of awareness/consciousness. Ayurveda connects
these realms and adopts a comprehensive view of life and
health. It says that the subtler levels within influence the
physiology. Susruta defines a healthy individual as (9):
samadosha: samgnischasamadhtumalakriya:
prasanntmaindriyaman: svasthaitiabhidheeyate
(ch.15/verse 41)
In essence, a healthy person is one whose dosha, dhtu
(structural entities) and metabolic end products are in
equilibrium. Further, there must also be clarity in consciousness,
senses and mind for a healthy state.
Health is that state in which the functions and parameters
under the tridosha (vata, pitta and kapha), exist in fine balance;
and disease occurs when there is an imbalance in these. Dosha,
thus, represents a different perspective of the human body and
provides a conceptual framework very different from that of
western medicine. Ayurveda does not adopt a structural view
like that of western medicine, but considers life as a complex
and dynamic interaction of various functions and parameters,
thus giving it a distinct approach in dealing with the human
body in an integrated and holistic way. Everything from
medicines and diet to mental, physical and emotional activities,
and even seasons are classified and understood in terms of
the changes they cause in the dosha, i.e. various functions and
parameters in the body (10).

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Approach to treatment in Ayurveda

The doctor-patient relationship in Ayurveda

Ayurveda provides a number of synonyms for the word cikitsa,


explaining in depth what it means treatment, which aims at
the removal of the disease-causing factors and the restoration
of the equilibrium of bodily functions and tissues (doshas and
dhatus) in a way which is compatible, conducive and nourishing
to patients without weakening them (11). This is an important
distinction from western medicine, where the benefits from
treatment are quite often outnumbered by its side effects
(12-15). Once the disease-causing dosha is identified, the
entire treatment is planned to restore the deranged functions
to balance using a variety of treatment modalities from
medicines, medical procedures (panchakarma), and diet, to
activities, mental and physical. For example, in osteoarthritis
(vata disorder), the entire treatment will be directed towards
reducing the increased vata (particularly the parameter
dryness) i.e., use of vata alleviating medicines, procedures
(eg. medicated-oil application), diet and lifestyle activities. This
shows how Ayurvedic multimodal treatment strategies restore
the complex dosha / functional balance. Since interconnections
between various functions (dosha) are known in Ayurveda,
the treatment is able to avoid side effects by a judicious
combination of medicines, diet and activities.

The doctor-patient relationship is an important part of


medical care and more so in the current health scenario where
an increasing number of health problems are considered
psychosomatic in nature, or diet and lifestyle-related. In
Ayurveda, the doctor is considered not only as a healer, but
also a friend and philosopher, and is expected to preserve a
high level of professional and personal integrity to be in a
position to advise patients. The doctor is constantly reminded
that this noble profession is for the welfare of the patient
and not for making money. The relationship between the
physician and the patient is considered a key factor for the well
being and recovery of the patient (16, 16a). Clinical empathy
is considered an essential interpersonal skill required for
professional competency, success and the patients well being.
The doctor, in addition to being knowledgeable and technically
skilled, is expected to maintain good qualities such as being
compassionate, empathetic, caring and kind to all patients
(16b). They are asked to nurture cordial feelings towards their
patients like a mother, father, or brother (16c). The quality of
compassion is highly valued and applied not only to patients
but to all sentient life. This is an essential requirement for an
Ayurvedic physician and forms an important part of medical
ethics. Interestingly, truth is not to be viewed in isolation in
Ayurveda. If it is likely to harm the patient, then compassion
has to overrule this virtue. Likewise, if a lie can do good to the
patient, it is to be condoned (17).

Ayurveda also empowers a person by taking health into the


realm of ones personal responsibility. The following example
highlights this point: this is the case of a 45 year old patient,
who had heavy bouts of cough and cold every spring season
for nearly six years, and was on antibiotics during the affected
period. From an Ayurvedic point of view, this kapha-related
problem was diagnosed as a seasonal disease, with the root
cause being indulgence in diet and lifestyle incompatible with
the spring season. During spring, kapha gets aggravated and
hence all kapha-aggravating food, such as citrus fruits, fruit
juices and yoghurt, as well as activities like sleeping during
the day, should be avoided. The patient, however, had been
indulging in all these. The problem was addressed simply
by correcting the diet and activities. The patient has now
faced three spring seasons without any recurrence, after this
intervention in diet and lifestyle alone.
Ayurveda, thus, offers several methods to stay healthy and
prevent disease. This is in contrast to western medicine, where
patients are completely dependent on doctors for treatment.
In Ayurveda, people are taught to be responsible for their
own health, rather than to consider themselves victims of
disease factors beyond their control. Ayurveda, thus, is a
complete healthcare system going beyond treating disease.
Ayurvedic principles and methods of healthy living can easily
be incorporated into peoples day to day lives, food habits and
activities. This gives a whole new perspective on healthcare
where one does not wait for people to contract a disease.
The primary purpose of healthcare should be to keep people
healthy and minimise the onset of disease.

Medical ethics in classical Ayurveda


The Ayurvedic physician is entrusted with both the physical
and mental well-being of the individual and the community, is
considered the most important factor for successful treatment,
and is expected to maintain a high level of personal and
professional integrity when dealing with patients (16d). The
code of ethics embodied in Ayurveda sets out the criteria for
good physicians, teachers and medical students. Compassion,
integrity, respect, honesty, courage and conscientiousness are
considered the cornerstone of medical ethics. There is emphasis
on the doctors need to transcend the needs of the physical
body and connect to the self of the patient. In order to evolve
to this state, the physician has to lead a life of integrity and
renounce material wealth (16c). Ethics is taught not merely for
its own sake but because it is considered essential on the path
to the final goal in life. The same is conveyed to the patients as
well.

Qualities of teachers, physicians and students


The following are some of the requirements listed in the
Ayurvedic texts for a physician, teacher and student (16-17):
The teacher should
be compassionate, noble by nature, honest, of a thoughtful

disposition, courageous, intelligent, endowed with power of


judgement and possess sharp memory;
have self control, excellent character and devotion to

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patients, thorough knowledge of the medical and other

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

allied sciences, good communication skills and be ready to


share knowledge without reservation;
be experienced, without malice or a wrathful disposition,

compassionate towards those who approach him for being


taught, well-disposed towards students and eager to teach
them;
have experienced self realisation to teach the essentials of a

true human being to the students.


The Ayurvedic texts repeatedly say He who practices medicine
while holding compassion for all creatures as the highest
religion is one who has fulfilled his mission and obtains
supreme happiness; Those who make a trade of medicine for
the sake of making a living, bargain for a dust-heap, letting go
a heap of gold; He who practices medicine out of compassion
for all creatures rather than for gain or for gratification of the
senses surpasses all. The texts say that patients trust their
physicians completely and hence a physician should take as
much care of every patient as he would of his own family (1617).
The student should
be compassionate, intelligent, hard working, eager to learn

and improve, and have respect for teachers


have self control, purity in conduct and thought, and be

honest.
Students are trained in the skills of observation, reflection,
analysis and understanding of the science, the self and others.
Formal training is considered an essential requirement to be a
physician. However, it is only with years of practice, observation
and constant study that a physician can aspire to be worthy of
the profession. Students are advised that as physicians, they
should never share information about a patient with others
(17a). It is pertinent to note that these values have not only
current relevance but also universal applicability.

Conclusion
As the world faces increasing chronic, psychosomatic stress
and lifestyle-related disorders, medical scientists are beginning
to realise the importance of an integrated approach to health
and healthcare. Ayurveda, with its holistic perspective and
integrated approach to health and disease, emphasis on diet
and lifestyle activities, and time-tested clinical practices can
play an important role in healthcare, especially in India. The
experience and expertise accumulated in Ayurveda over

several millennia should be used to benefit suffering people.


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11. Sharma RK, Dash B, translators. CarakaSamhita (Vol 3), Chaukhamba
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Articles

How informed is informed consent? Findings from a study in South India


Shuba Kumar1, Rani Mohanraj2, Anuradha Rose3, MJ Paul 4, George Thomas5
Samarth, New No. 100 (Old No. 11), Warren Road, Mylapore, Chennai 600 004 Tamil Nadu INDIA 3 Assistant Professor, Department of Community Medicine,
Christian Medical College, Vellore, Tamil Nadu INDIA 4 Professor and Head, Department of Endocrine Surgery, Christian Medical College,Vellore, Tamil Nadu INDIA
5
Chief Orthopaedic Surgeon, St Isabels Hospital, 49, Oliver Road, Mylapore, Chennai 600004, Tamil Nadu INDIA. Author for correspondence: Shuba Kumar e-mail:
shubakumar@samarthngo.org
1, 2

Abstract
A qualitative study using in-depth interviews was carried out
among patients and doctors working in a private hospital in Tamil
Nadu, to understand perceptions of informed consent. Audiorecorded interviews were transcribed verbatim and a framework
analytical approach was used in analysis. Emergent themes
ranged from perceptions on informed consent, and discussing
health concerns and decision making, to information provided by
and expectations from doctors, and suggestions for improvement.
Most patients were unfamiliar with the kind of information
provided in the informed consent process; a few felt that the
information was inadequate. Decision making about surgery was
left mostly to the doctor. Poor literacy in patients was seen as a
barrier to effective communication by doctors. Developing local
language versions of consent forms supported by audiovisual aids
is needed for patients to take a proactive role in their treatment
process, and for doctors to be receptive to patients needs and
capacities.

Introduction
Informed consent has increasingly become a major topic of
discussion and debate. While the need for client participation
in healthcare decision making has been acknowledged, its
implementation has been varied and individualistic. Haas (1)
says that while some variations in this process are appropriate
as circumstances can differ, others result both from confusion
about these issues and passive resistance to new demands.
Although the informed consent process is followed in most
medical settings, evidence of patients experiences of the
consent process remains limited.
Studies from developing countries show that patients view
written consent as ritualistic and bureaucratic. Some feel
frightened or pressured to give consent (2,3). According
to Moazam (4), the unquestioned authority of the medical
profession and a fatalistic belief among the population about
illness and death leave patients open to exploitation. She
identifies a lack of awareness of individual rights and redress
through the judicial system, which is not easily accessible.
Consequently, the risk of exploitation of patients by healthcare
professionals is real. Perez-Moreno (5) analyses the quality
of information provided prior to anesthaesia and surgery
in 300 patients and found that a majority of patients had
poor knowledge of surgical and anaesthetic risks. Concerns

regarding erosion of patient autonomy and subordination of


patients interests to the competing interests of the family also
exist, particularly in paternalistic societies (6).
The above scenario is similar in India. Typically, the oldest male
member in the family makes major decisions. Where women
patients are concerned, the complex patriarchal nature of the
structure of Indian society in turn dictates the nature of this
relationship between the doctor and the female patient, with
women often expected to be acquiescent, allowing the senior
family member to do the talking (7). Furthermore, patients
generally tend to put the onus of care on the doctor. This
attitude is typical of most Eastern religions which view the art
of healing as work most worthy of men (8). Focshen et al (7)
report that doctors tend to view patients knowledge as not
worth taking into consideration. They further state that as
patients are seen as lacking in capacity to fully understand the
information provided, trying to communicate to them is often
seen as a futile exercise.
Considering the above, researchers in India are beginning to
recognise the limitations of standard informed consent forms.
For non-literate and semi-literate persons, this document is
viewed with suspicion and one to which they are reluctant to
affix their signatures or thumb impressions. In other instances,
the informed consent process has become a mere formality
with subjects/patients simply acquiescing to whatever is
required of them. Given the above, informed consent that
hinges purely on the principle of autonomy and rational
decision making as understood in the West is problematic.
With this background, we carried out a qualitative study
among patients and healthcare professionals working in a
private hospital in the southern state of Tamil Nadu, India, to
understand the process of informed consent as it operated
there. Specifically, the study sought to ascertain how patients
and healthcare professionals perceived informed consentand
the constraints to obtaining informed consent, and what their
suggestions were on improvements.

Methods
A cross sectional study using in-depth interviews was carried
out in the department of surgery of a large private tertiary level
hospital in southern Tamil Nadu. Ethical clearance was obtained
from the Institutional Review Board (IRB) of the hospital.
Using purposive sampling, consenting Tamil speaking adult
patients admitted to undergo surgery and doctors working

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

in the department of surgery were included. Patients were


approached following completion of their surgery. Only those
who were physically fit enough to participate in the interview
and gave written consent were included. All interviews were
carried out in privacy and both patients and doctors were
assured of confidentiality. Separate in-depth interview guides
for patients and doctors were developed. Efforts were also
made to explicitly solicit suggestions on improvement of the
consent process. The guide for patients sought to elicit details
on patients perceptions of the meaning of informed consent,
information communicated to patients, and the comfort level
of patients in asking questions to the doctor. The guide for
doctors included issues such as how they understood informed
consent, description of the informed consent process currently
underway in the hospital, their satisfaction/dissatisfaction with
it, perceptions on the nature and quantum of information to be
provided to a patient, and constraints to obtaining informed
consent in the hospital setting

Analysis
All interviews were audio recorded, and transcribed verbatim.
Those carried out in Tamil were first transcribed verbatim
and then translated into English, to allow for analysis using
a qualitative software. A framework analytical approach was
used for data analysis (9). This process, involving a number
of highly interconnected and iterative stages, began with
data immersion. This was followed by a series of other stages
involving identifying a thematic framework: sifting through
the data, identifying meaningful and relevant quotes; placing
the quotes under the appropriate thematic category; mapping;
and finally interpretation. Each transcript was coded inductively
by two independent researchers (SK and RM). After coding 3
interviews, the coders compared the coding schemes each had
developed, resolved any differences in coding and developed
a common coding framework that was used to code all other
interview transcripts. Once all the interviewswere coded,
segments of text that were related to a common theme were
pieced together and in this manneremergent themes were
identified. The qualitative analysis was done using NVIVO.

Themes of analysis
The themes that emerged were:
Perceptions of informed consent
Information provided by healthcare providers to patients
Perceptions on discussing health concerns and decision

making
Expectations from the healthcare facility/providers
Suggestions for improving consent procedures

(see Table : Quotes from interviews)

Perceptions on informed consent


For many patients,informed consent was an unfamiliar phrase.
They did not know what it meant aside from having to sign a
form, the contents of which were only vaguely known to them.
One young woman patient said that she had never paid any
attention to these issues and had left it entirely to her mother.
To others, it implied a document by which the hospital could
protect itself in the event of any mishap. Others understood
that it entailed a process whereby doctors communicated
details about the nature of surgery that was to be performed,
and advised them of potential risks and benefits. Some
educated patients believed that non-literate patients were at
a disadvantage as they understood little and the onus was on
doctors to help them understand.
Doctors, for the most part, were familiar with the concept of
informed consent. Issues concerning ethics and informed
consent were taught to them as part of their medical
curriculum. Although most were unable to clearly name
the three broad principles of ethics (respect for persons,
beneficence and justice), they were, able to provide fairly clear
explanations of what informed consent entailed. One doctor
spoke of the importance of giving patients the right to decide
and making the effort to explain to patients in a manner that
would help them understand. A few doctors held different
positions and felt it was alright for doctors to take the lead and
make the decisions considering their expertise and experience
in the field.

Results
Demographic characteristics

Information provided by healthcare providers to


patients

A total of 14 patients (8 women, 6 men) aged 25 years and


above were interviewed. All were from Tamil Nadu and hence
all interviews were carried out in Tamil. Three men and one
woman had completed graduation, 5 had completed 10-12
years of schooling (secondary school) and 4 had completed
5-6 years of schooling (primary school). All the patients
were married barring two women who were unmarried. The
surgical procedures that these patients underwent ranged
from appendicitis, hydrocele, fibroids, and toe amputation
to caesarean section and colostomy. A total of 8 doctors (2
women, 6 men) were interviewed, 2 of whom were heads of
their departments aged 50 years or more, while the remaining
6 were junior and senior residents aged between 22and
30 years.

In terms of content, most patients said that doctors had


described the specific surgical procedure in fair detail. This
happened over several sittings beginning with the first visit
which was in the outpatients department. Many times, this
explanation was done with the help of a sketch to demonstrate
what the surgery entailed. According to the patients, doctors
also told them about potential risks but generally softened
this by saying that everything would be alright. In contrast, a
few patients said that not much information had been given
to them, and what little they had gleaned was by overhearing
conversations between medical personnel. One woman who
had recently undergone a caesarean section said that neither
doctors nor nurses had prepared her for the possibility of
caesarean section. Nor had they apprised her, during her

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Table : Quotes from interviews


Perceptions on informed consent
I asked whether I should sign the form or my husband should
sign the form and they told me that if I sign the form it is okay.
But I dont know for what reason they got the signature.
(Female, 43, primary school educated)
At the time of surgery if something happens, like if they do
the surgery on the wrong side, we cannot question them. That
is what I have read in the form.
(Male, 27, college educated)
Initially I never even thought of it (informed consent). As long
as we are not harming people and are doing things to help
society, it was not even important for me. But after I started
getting involved in research, I began to learn more about it. I
became convinced that it is an important aspect.
(Doctor, male, 50)
This (ethics) is something instilled in us when we study here.
(Doctor, male, 24)

Perceptions on discussing health concerns and


decision making
It is like talking back to the doctor. The doctors come and
examine discuss among themselves and decide. What is there
for me to ask the doctor?
(Male, 62, college educated)
For everybody life is very important and people are scared to
ask questions to the doctor for fear that the doctor will either
not treat them or else not give them the correct treatment.
(Male, 25, college educated)
When we see a patient we always see them with a relative, so
information goes to both the patient and the relative. Time is
always taken to explain to them what is wrong with the patient
and what needs to be done.
(Doctor, male, 27)
I think it is ok for doctors to decide, after all we are the ones
who understand the pros and cons so it is obvious that we
should be the ones making the choices. I dont think it is fair to
ask the patient to decide. It is like buying software. If you ask me
to go and buy one, I really know nothing about it. Even if you
told me that this software has these features etc I would still be
clueless at the end of it and will depend on the computer expert
to guide me. So I feel somewhat the same. We have been in
this field of medicine for (years)and our understanding is also
different (from that of a non-medical person). We cannot expect
a non-medical person to have that same understanding.
(Doctor, male, 53)

Information provided by healthcare provider to


patients
On many occasions when we try to explain things or tell them
(patients) why we are doing a certain procedure, they say it

doesnt matter and that they dont really want to know. They
say, If you say it has to be done, then I will do it.
(Doctor, male, 50)
I keep the patient informed, if they (relatives) dont want me
to tell the patient, then I will not tell them what the disease
is, but I will tell (the patient) everything else. But I do tell the
family members that within 48 hours they need to inform
the patient and that if they do not do so I will. Before the
operation we make sure that the patient knows the diagnosis
and the likely outcome.
(Doctor, male, 55)
Some patients find it difficult to understand the concepts.
For them we draw and show them; I simplify it so they can
understand. We have a generic form which is applicable for all
kinds of operations but issues like the risks, complications we
have to write and fill in the form.
(Doctor, female, 22)
I feel in our country the burden on the doctor is much more
than in other countries. Here quite often the doctor is forced
to decide for the patient. Many patients do not have the
knowledge and they will tell us, You tell me what is the right
thing to do. Most of the time they (patients) dont even know
what procedure they have undergone. They dont know about
complications, they dont even know the diagnosis. Sometimes
it can be extremely difficult.
(Doctor, female, 30)

Expectations from the healthcare facility/provider


The doctor did not give any instructions on what I need to do
to take care of myself after a caesarean. They need to give me
all this information at the outset.
(Female, 37, secondary school educated)
The doctor has to spend time with the patient. If the doctor
comes just for a few minutes and walks away, you dont feel like
asking him any doubts freely because he will not be in a mood
to listen to you and hear what you are saying.
(Female, 43, primary school educated)

Suggestions for improving consent procedures


I believe that the doctor knows what is the best thing to be
done, but the patient should ask the doctor his doubts. He
should ask for all information about his operation.
(Female, 36, primary school educated)
Social workers will need to be properly trained as this
(medicine) is a highly specialised field and they should be able
to communicate clearly to patients ... It may take a long time to
train them but then they can be very helpful to us and may help
to decrease the workload of doctors.
(Doctor, female, 30)

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

antenatal consultations, of the aftereffects of having such


a surgery. While underscoring the importance of doctors
communicating clearly to patients, the need for patients to play
a proactive role in the treatment process was also highlighted.
However, patients reported varied reactions to the information
provided by doctors regarding their illness and treatment,
which ranged from appreciation to feeling overwhelmed and
afraid.
The doctors explained that in almost all cases patients were
seen along with a family member and details concerning the
illness/surgery were jointly explained to both. The consent form
used in their facility was described as a two-part document
comprising information and consent. The information section
was usually written up in brief by the doctor. The consent
section was usually a standard printed form, which the
patient was asked to sign indicating acceptance to undergo
the surgery. Consent was obtained on the day of the surgery.
Sometimes, at the behest of relatives, doctors would refrain
from giving details to the patients but they would insist that
patients needed to be apprised of risks and complications
at some point before surgery. This need to inform patients
about potential risks and benefits irrespective of what relatives
thought was underscored by all the doctors.

Perceptions on discussing health concerns and


decision making
Patients gave various reasons for not asking questions to their
treating doctors. The most common reason hinged on their
deep sense of faith and trust in the specific hospital or doctor
and the conviction that the doctor knows best. Another
concern was that of appearing poorly in the eyes of the doctor
if they were to ask a lot of questions. The perception that raising
questions would be seen as being rude, coupled with the fear
of annoying the doctor who then may not deliver proper care,
was often reported. Others believed that it was the duty of the
doctor to provide all the necessary information to the patient
without the patient even having to ask for it. Decision making
about surgical procedures, too, was largely left to the doctor
although patients did discuss it with their families. However,
they depended on their doctors to guide them.
The total dependence and faith that patients reposed in
doctors, coupled with reluctance on the part of many patients
to learn more about their health condition, often prompted
doctors into communicating minimally to patients and making
decisions for them. Some doctors spoke of the dynamics of the
doctor-patient relationship that seemed to suggest that the
doctor was on a higher plane when compared to the patient
and thereby more empowered to make these decisions. A few
doctors spoke of the limited ability of patients to understand
issues concerning their illness as well as complications related
to the surgery, which they perceived as a deterrent to the
process of informed consent. Despite this, doctors believed
that patients needed to be involved in and apprised of the
facts of their surgical procedure. In a few instances, doctors
spoke of language as a barrier to effective communication. All

doctors reiterated that the operating doctor by virtue of his/her


primary responsibility to the patient went through the consent
process, but obtaining the signature on the consent form was
delegated to a junior doctor.

Patient expectations from the healthcare facility/


providers
One of the most consistent expectations repeated by patients
was that doctors needed to spend time and explain their
illness/surgery in a manner that they would understand. The
importance of describing what sort of post-operative care
needed to be taken was also stressed. Others spoke of the
value of using flip charts, sketches or other visual aids to help
explain surgical procedures in a simple and effective manner
but also felt that this needed to be used with caution as it
could frighten patients. Most patients saw the doctor as the
ideal person for obtaining consent; only two felt that anyone of
the medical staff would be acceptable.

Doctors perceptions on improving informed consent


processes
Suggestions given by doctors ranged from developing
language versions of consent forms and getting social
workers to obtain consent to relieve the burden on doctors,
to developing audiovisual aids - either in the form of flip
charts or as material downloaded from the internet. Some
said that the inability to read on the part of many patients
tended to preclude the usefulness of language forms. Having
social workers talk to patients and explain details about their
illness and surgery was appreciated by most doctors but they
underscored the importance of making sure these social
workers were well trained, and professional in the manner in
which they obtained consent.

Discussion
Culture and informed consent
The findings from this study revealed that an understanding
of informed consent among the study participants could
at best be termed moderate, but was for the most part
inadequate. Implicit faith combined with a deep and abiding
respect for doctors and the fear that asking questions to the
doctor would be seen as rude behaviour acted as deterrents
to patient participation. These cultural influences cut across
different sections of society and being educated did not
imply being proactive. Interestingly, this implicit faith in the
medical profession (Fig.) is observed in most societies (4,
10,11). Doctors, for the most part, believed in communicating
key issues to patients but often found poor literacy levels
and language barriers prevented effective communication.
Studies carried out in western countries have also shown that
patients understanding of their health condition, prognosis,
treatment and the risks involved were not complete owing
to their cognitive and emotional limitations (11-13). Some
doctors in our study believed that they should advise patients

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Fig.1: Informed consent: conceptual framework

Doctors: Intrinsic factors

Cultural influences
Faith in doctor/medical facility
Respectful of doctors, afraid to
ask questions for fear of irritating
doctor
Fatalistic acceptance
Dont want to know

Perceptions on importance of
IC
Difficulties in explaining to
patients
I am the doctor I know what is
best attitude
Do not want to unnecessarily
frighten patients

Patients: Intrinsic factors

Doctors: hospital policy

Understanding of
illness /disease
Seeking
information from
doctor
Understanding of
risks, benefits and
rights
Decision making

Diagnosis of
disease
Communication
to patient /family
Explanation of
risks and benefits
Aids in decision
making

Consent obtaining
process- signing the
informed consent form

Consent giving process

Informed consent

on what choices to make because of their expertise and


experience. While it is true that the consent process is all about
providing adequate information to patients so that they can
make these choices, those with poor literacy often tend to
feel overwhelmed and unable to make these decisions and
preferred leaving it to the doctor. A study carried out by Fink et
al (14) demonstrated that patients who were elderly, belonged
to the African-American or Hispanic races, with less than high
school education, experienced difficulty in comprehending
the details of their surgical procedure. However, the use of
adjuncts like repeat back (patients are asked to state in their
own words whatever they have understood from what was
read out to them through the consent form) improved patient
comprehension significantly. Krankl et al (15) too concluded
that greater attention needed to be given to patients
educational background to ensure adequate understanding
of clinical information. In this context, Bernat and Peterson
(16) have reported on the value of doctors developing a good
understanding of exactly what and how to communicate
to help patients understand better. These proactive steps

by doctors combined with building awareness about these


processes among patients could aid in making informed
consent truly a two-way process rather than the one-sided one
that it currently is.
The informed consent form
The perception that the consent form was a defensive tool
used to protect doctors/hospitals was reported by patients
and their families. This was reported by Akkad et al (17)
in a study from England. Further, there was considerable
uncertainty among patients about the implications of signing/
not signing the consent form. In our study too, the fact that
only a few patients spoke of the consent form as a document
that was in their interest was disquieting, as it implied poor
understanding about the true purpose of the consent process.
The clear guidelines about the depth and detail required in the
consent form in research are not reflected in the clinical field.
Information about the surgery was written down, sometimes
briefly, sometimes combined with sketches by the doctor,
allowing a considerable amount of variability in terms of

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

what was actually described. The consent form that was used
consisted of a printed form outlining that the patient was
aware of the potential risks and had consented to surgery.
The meaningfulness of the written consent form has been
debated widely. Studies have shown that many patients do not
read the consent form, primarily because of their preference for
verbal information (3, 18). Many also find it hard to understand.
Most patients in India do not read the form because of poor
literacy. But more typically, it could be attributable to the belief
that the doctor knows best and will not deliberately harm me.
However, the use of visual aids like drawings and sketches
during consultations prior to surgery were found by patients
to be helpful. Research has shown that the use of decision aids
and supplementary educational material during the informed
consent processes improves patients comprehension and is
associated with patients increased knowledge about their
condition, low decisional conflicts and reduced use of elective
procedures (19, 20-22). Perhaps, the use of more structured
visual aids (flip charts, videos) could help patients understand
better, and instil the purpose and value behind getting
involved in their recovery process. This could be the way to go
forward in the future.
Who should obtain consent?
The question of who should obtain consent received a near
unanimous response. Most patients believed that their doctor
was the right person to take them through the consent process
and most doctors agreed with this view. Although it is true that
the consent process usually happens over several sessions,
the fact remains that most doctors work in very busy clinics
and quite often are not able to spend time with patients. For
patients, the need to emotionally connect with doctors, gain
their reassurance and have the doctor come down to their level
and explain the pros and cons in a less hurried atmosphere is
critical. Sanyal et al (23) reported that Indian patients are able
to comprehend and should be informed about the details of
their operation but highlighted that the informed consent
process should be a continuous one rather than a single event.
Physicians at the Temple University in the US identified several
challenges in direct relation to informed consent based on a
review of patient-doctor communications (24). Many of these,
like lack of clinician time, poor patient literacy, and language
and cultural issues, were cited by both the patients and
physicians in our study, which in turn suggests the need for the
development of consent guidelines that are more in keeping
with what patients want.
A limitation of our study was that we did not include a
government hospital or even another private hospital as
a comparison. The selected hospital by virtue of its strong
service-oriented philosophy cannot be considered reflective
of the situation that prevails in other hospitals. However, the
strength of the study lies in the use of qualitative methods,
which allowed patients and doctors to speak freely, thereby
lending credibility to the findings.

Conclusion
The doctor-patient interaction has been widely acknowledged
as an important factor influencing patient health outcomes
(25). Given this, it is imperative that the one-sided doctordominated relationship gives way to a more patient-centric
approach (26). The study findings highlight the need for
patients to take a proactive role in their treatment process, and
for doctors to be receptive to patient needs and capacities,
and provide information that can be easily understood. Such
a participatory relationship where treatment decisions are
made in an environment where patients feel free to air their
concerns, and where doctors understand and respect these
concerns, would be the most appropriate strategy towards
obtaining truly informed consent. This, combined with the
use of more structured visual aids could help patients better
understand the medical/surgical procedures they are about
to undergo. Perhaps, this would help set the stage for the
development of consent guidelines and strategies that are
culturally appropriate and reflect patient needs. As rightly
argued by Doyal (27), despite the potential limitations that
patients may have in understanding clinical information, the
onus is on healthcare providers to improve their methods of
communication, even to the extent of taking recourse to better
educational aids as a means of facilitating the informed consent
process and ensuring better understanding by patients.
References
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consent. Ethics Behav. 1991;1(3):175-89.
2. Habiba M, Jackson C, Akkad A, Kenyon S, Dixon-Woods M. Womens
accounts of consent to surgery: qualitative study. Qual Saf Health Care.
2004;13:422-7.
3. Akkad A, Jackson C, Dixon-Woods M, Kenyon S, Taub N, Habiba M.
Informed consent for elective and emergency surgery in obstetrics and
gynecology: a questionnaire study. BJOG. 2004;111:1133-8.
4. Moazam F. Families, patients, and physicians in medical decision making:
A Pakistani perspective. Hastings Cent Rep. 2000;30:28-37.
5. Perez-Moreno JA, Perez-Carceles MD, Osuna E, Luna A. Preoperative
information and informed consent in surgically treated patients. Rev Esp
Anestesiol Reanim. 1998;45:130-5.
6. Blustein J. The family in medical decision making. Hastings Cent
Rep.1993;23:6-13.
7. Fochsen G, Deshpande K, Thorson A. Power imbalance and
consumerism in the doctor-patient relationship: Health care providers
experiences of patient encounters in a rural district in India. Qual Health
Res.2006;16:1236.
8. Scully C, Wilson N. Culturally sensitive oral health care. London:
Quintessence Publishing Company Ltd;2006. 183p.
9. Ritchie J, Spencer L. Qualitative data analysis for applied policy research.
In: Bryman A, Burgess RG, editors. Analysing qualitative data. London:
Routledge;1994. p 173-94.
10. Fetters M. The family in medical decision making: Japanese perspectives.
J Clin Ethics.1998;9:132-46.
11. Rogers AE,Addington-Hall JM,Abery AJ,McCoy AS,Bulpitt C,Coats
AJ,Gibbs JS. Knowledge and communication difficulties for patients
with chronic heart failure: qualitative study. BMJ. 2000;321:605-7.
12. Sutherlund H, Lockwood G, Till J. Are we getting informed consent from
patients with cancer? J R Soc Med. 1990;83:439-43.
13. Lloyd A. The extent of patients understanding of the risk of treatments.
Qual Healthc. 2001;10(Suppl I):i1413.
14. Fink AS,Prochazka AV,Henderson WG,Bartenfeld D,Nyirenda C,Webb
A,Berger DH,Itani K,Whitehill T,Edwards J,Wilson M,Karsonovich
C,Parmelee P. Predictors ofcomprehensionduringsurgicalinformed
consent. J Am Coll Surg.2010 Jun;210(6):919-26.

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15. Krankl JT,Shaykevich S,Lipsitz S,Lehmann LS. Patient predictors of


colposcopycomprehensionofconsentamong English- and Spanishspeaking women. Womens Health Issues.2011 Jan-Feb;21(1):80-5. Epub
2010 Sep 15.
16. Bernat JL, Lynn PM. Patient centered informed consent in surgical
practice. Arch. Surgery. 2006;141:86-92.
17. Akkad A, Jackson C, Sara K, Dixon-Woods M, Taub N, Habiba M. Patients
perception of written consent: questionnaire study. BMJ. 2006 Sep
9;333(7567):528. doi:10.1136/bmj.38922.516204.55
18. Agard A, Hermeren G, Herlitz J. Patients experience of intervention
trials on the treatment of myocardial infarction: Is it time to adjust
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2001;86:632-7.
19. Schenker Y, Fernandez A, Sudore R, Schillinger D. Interventions to
improve patient comprehension in informed consent for medical and
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2001;10(Suppl I):i29i3.

Informed consent among nursing students participating in biomedical


research
Anupama Nambiar1, D J Christopher2 , Joy Mammen3, Thambu David4, Gagandeep Kang5, Shirley David6
Centre for Stem Cell Research, 2Departments of Pulmonary Medicine, 3Transfusion Medicine and Immunohaematology, 4Medicine, 5Gastrointestinal Sciences and
College of Nursing, Christian Medical College, Vellore, Tamil Nadu 632 002 INDIA Corresponding author: Anupama Nambiar e-mail: cscrres@cmcvellore.ac.in.

1
6

Abstract
For consent in biomedical research, it is essential that research
participants understand the need for research, the study
protocol, the risk and benefits of participation, the freedom
to participate or decline and the right to leave the study
at any time. A structured questionnaire was used to assess
understanding and knowledge among nursing trainees
participating in a cohort study investigating exposure and latent
tuberculosis at a tertiary care hospital. Data were collected for
138 participants. While 97% were aware of their enrolment into
a research protocol, only 78% could state that it was a study on
tuberculosis. Approximately two-thirds were aware of plans for
blood collection, but not all of them knew the timings or number
of samples. The majority (59%) participants had consulted others
before making the decision to participate, and only 73% felt
that their participation was completely voluntary. Even among
healthcare trainees, emphasis needs to be placed on testing both
the knowledge and understanding of participants to ensure the
principle and practice of truly informed consent.

Introduction
Informed consent is an integral part of ensuring respect for
participants in research. It is essential that research participants
understand the reasons why the research is being conducted,
the study protocol, the risks and benefits of participation and

that they are free to participate in or leave the study at any


time (1). The process of administering informed consent usually
requires an initial written communication, which then leads to
a dialogue between the patient and the research worker and
gives an opportunity for the potential research participant to
ask questions and get a better understanding of the treatment
or procedure. It is necessary not only that good communication
takes place but also that the communication is documented.
A well-designed, signed informed consent form provides
documentation that the principle and process of ensuring that
the decision to participate has been considered and voluntary.
However, even if a research participant signs a consent form, it
does not necessarily mean that the individual has understood
all the key aspects of the study and therefore given full,
informed consent (2). Therefore in many settings, particularly
clinical trials, quizzes have been developed to assess whether
or not the potential participant has understood key aspects of
the research protocol (3).
In general, participants taken from a healthcare environment
might be expected to have a better understanding of the need
for research and for the processes followed to obtain data for
answering important study questions. Although there are no
direct data that healthcare workers or students understand
the need for research, there are data that show that students

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

in healthcare-related fields are better informed about chronic


health conditions, including HIV, than other students (4).
At the Christian Medical College (CMC), Vellore, a large tertiary
care institution, we had previously carried out two studies on
informed consent in community-based participants enrolled
in observational and interventional research protocols and
found that in both studies, the provision of free or concessional
healthcare was perceived as being a major motivator for
participation in research, whether or not such care was
promised during the discussion of the study and the informed
consent process (5, 6).
Since healthcare is provided free for students and staff at the
institution, in order to assess our processes and the perception
and recall of informed consent in a non-community based
study, we designed a study carried out among nursing
trainees enrolled in a study on tuberculosis (TB) incidence
and prevalence (6). Among healthcare workers in developing
countries, nurses spend a proportionately greater amount of
time in direct contact with TB patients, and are at high risk for
acquisition of TB infection and disease. The study on TB was
designed to understand the epidemiology of nosocomial TB
among nurses and recruited a cohort of young nursing trainees
at CMC to determine exposure and disease during follow-up,
and these data have been published (7, 8).
In order to assess understanding of the nature of informed
consent and recall of the study procedures, a study was
designed to assess i) knowledge of the rationale for research, ii)
procedures included in the study protocol, iii) understanding of
the voluntary nature of consent and iv) understanding of the
risks and benefits of participation.

obtaining all relevant administrative permission in August 2009.


The study included student nurses from all six programmes
offered at the College of Nursing, CMC, Vellore including:
nursing diploma, BSc, post diploma BSc courses, fellowship
courses, MSc, and doctoral (PhD) programmes. Students with a
past history of TB were excluded from the study at recruitment.
Most students in the nursing programmes at CMC come from
lower middle class or middle class backgrounds, and from
all over India, though mainly from the southern part of the
country. Approximately 300 students attended an introductory
meeting, where the investigator explained the purpose of the
study, answered queries and distributed information sheets
requesting participation. The process for data collection, the
consent process, and confidentiality issues were explained.
Of those attending the meeting, 180 students took the
questionnaire and 138 completed forms were received.

Data collection and analysis


A questionnaire-based tool was designed for data collection.
The tool had questions that were intended to elicit information
about i) knowledge of the disease being studied (tuberculosis);
ii) knowledge of the rationale for the study; iii) awareness
of study procedures; iv) perception of risks and benefits of
participation; v) the process of obtaining and giving informed
consent for the study; and vi) understanding of the voluntary
nature of informed consent. The data from the completed
questionnaires were entered into an Excel database and
the summary statistics generated were presented using the
functions in the same software. The binomial probability
test was used to compare whether an observed proportion
significantly varied from an expected probability with the
expected probability set at 50%.

Results
Methods
A cohort study designed by the Department of Pulmonary
Medicine, to study the incidence and prevalence of latent TB
infection in nursing trainees was carried out with institutional
review board and administrative approval at the Christian
Medical College, Vellore in 2008-2009. To initiate the study, the
principal investigator (PI) addressed the entire student body
to explain the concept, followed by separate sessions with
each class. Once again the PI or sub-investigator explained
the basis of the study and the methodology with the help
of a multimedia slide presentation. Their participation was
requested and their right to choose or decline participation
and to withdraw from the trial without citing any reason for
their decision was explained to them. The study described here
was a follow-on study regarding comprehension of informed
consent conducted as described below.

Participants
The total number of participants enrolled in the TB study in
2008 was 436, of which 350 students were present on the
rolls when this study on informed consent approved by the
Institutional Review Board in November 2008, was initiated after

As reported in the publication of the original study to assess


TB exposure, participants were mainly female and over 80%
were 18-22 years of age (7). The participants of this study on
informed consent were constituted by all available participants
in August 2009. A total of 138 student nurses participated in
this study on informed consent.
The data were analysed initially to assess awareness regarding
participation and the protocol (Table). Although two-thirds of
participants were aware that blood collection formed part of
the study protocol, less than 10% knew the need for additional
testing if the initial tests were negative.
Although CMC offers free healthcare to all students and
trainees, 47 (34.0 %) students believed that participation
would offer access to better treatment from CMC if they were
diagnosed, while 91 (66.0%) felt that there would be no change
in the quality of their care. One hundred and three (74.6%)
participants were of the opinion that the study would benefit
others in the future, although 33 (23.9%) stated that they did
not expect any direct personal benefit from participation and
two participants did not respond. 86 (62.3%), perceived no risk
from participation, although 50 (36.2%) responded that they
were not sure.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Knowledge of study enrolment and procedures


Aware
Number
Awareness of enrolment in a
research study
Knowledge of study rationale

Knowledge of disease studied


( tuberculosis)

135

101

108

Knowledge of study procedures


(blood collection)

88

Awareness of risks of
participation

86

Awareness of benefits of
participation

104

Awareness of freedom to
withdraw

77

Percent
(95% CI)
97.8
(93.8 - 99.5)
73.2
(65 - 80.4)
78.3
(70.4 - 84.8)
63.8
(55.2 - 71.8)
62.3
(53.7 - 70.4)
75.4
(67.3 - 82.3)
55.8
(47.1 - 64.2)

P value*

<0.0001

<0.0001

<0.0001

0.0015

0.0048

<0.0001

0.2015

* Obtained from two-tailed binomial probability test with an expected


awareness of 50%

The questionnaire also evaluated the decision-making process


regarding participation, and potential treatment availability if
needed. Of the total 138 participants, 82 (59.4%), had consulted
others before making the decision regarding participation,
mainly parents and friends. Overall, 101 (73.2%) said that they
had joined of their own free will and no compulsion was placed
on them to be part of the TB study. Regarding decision-making
for treatment in case evidence of disease was found, 52 (37.7%)
said that they would abide by the doctors advice, while 44
(31.9%) said they would make the decision. For 39 (28.3 %) the
parents would be the decision makers. Three participants did
not respond.

Discussion
This study shows that even in a healthcare environment, the
understanding of participation in research and the processes
and nature of informed consent among participants can
be insufficient. In educational institutions, students can be
considered a vulnerable group where participation in research
should take place under the strict supervision of institutional
authorities and possibly, an IRB appointed committee to ensure
that participation is voluntary and free from coercion. Whether
data from nursing students at this institution are applicable
to nursing students in other institutions, or students enrolled
in other courses within the same institution, is not clear and
would require larger scale and more detailed studies.
For informed consent to be valid, participants should
understand the risks, potential benefits, procedures, and
alternatives. The International Conference on Harmonisation
(ICH) Good Clinical Practices guidelines list 20 items as essential

to informed consent, including the risks, potential benefits,


expenses and duration of the study in question (9). The first
item on the ICH list states that potential participants should
understand that the study involves research. The Council
for International Organisations of Medical Sciences (CIOMS)
guidelines list 26 essential elements to informed consent,
the first of which mandates that individuals understand
they are being invited to participate in research.(10)
However, Wendler and Grady point out that it is unclear what
potential participants need to understand in order that they
are sufficiently aware of key features regarding the study,
such that their informed consent is valid and the fact of
participation in research is understood (11). Their analysis
of individuals interests suggests that potential participants
need to understand three key facts in addition to the study
processes and these are 1)research contribution: those who
enrol in the study will be contributing to a project designed
to gather generalisable knowledge to benefit others in the
future; 2) research relationship: the investigators will rely on
participants efforts to gather the generalisable knowledge to
benefit others; and 3) research impact: the extent to which
participating in the study will alter what participants do and
what happens to them. However, it is extremely difficult
for researchers to know how much information needs to be
provided and what determines a failure of understanding on
the part of the participant.
Information is needed for people to make decisions on whether
or not to participate in biomedical research. In many scandals
related to research, participants have lacked important pieces
of information. However, the current trend seems to be based
on the apparent belief that the more the information, the more
respect is given to a participants autonomy, which may not
be the case (12). Long consent forms do not necessarily result
in a better understanding of studies (13). It is a researchers
responsibility to ensure truly informed consent but most
mandated procedures do not take into account that different
people assimilate information differently, with some benefitting
more from oral than written information, some needing
technical details while others prefer general principles, some
preferring to make autonomous decisions, while others require
the support of family or friends (12).
Researchers who have specifically examined the participation
of students in health-related fields, particularly nursing,
have developed a framework for ethical research practice
emphasising the need for participants to understand the
contribution of the study to generalisable knowledge, the
reliance on participant-derived data for benefit and the
potential impact on participants themselves (14). Others have
pointed out the need for avoiding potential conflict of interest
and provision of confidentiality as key issues for this group of
participants (15).
While the need for ensuring voluntary participation is
paramount, another issue to consider is the rights of the
individual over the group as a whole. Taking the original study
(to look at the incidence and prevalence of TB infection in

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

nursing trainees) as an example, tuberculosis is a contagious


disease, and this study sought to determine as early as possible
when exposure occurs in a high risk group of individuals, i.e.
nursing students. If TB infection is detected early, the initiation
of prophylactic treatment as planned could potentially reduce
the chance of progress to disease in the individual. This, in turn,
is likely to prevent further transmission to the community of
students in the hostel, the patients and their colleagues in the
hospital. The study could be classified as one of low risk, and
potentially of benefit to the participant and the community. It
has been suggested that in such situations, opt-out consent
may be appropriate (16). In the absence of discussion and
guidelines on such issues, a decision regarding an appropriate
approach may be difficult.
This study had limitations in assessing aspects of informed
consent since it was carried out more than a year after
enrolment, when it has been shown that accurate recall is
difficult even in well educated volunteers (17). In addition, the
questionnaire did not attempt to explore reasons for a lack of
recall in some participants. Social and demographic factors
could also have influenced understanding and recall, but
this was not assessed. Nonetheless, the data show that even
among healthcare trainees participating in a research protocol
in a large educational institution in India, knowledge and
understanding of the nature of consent and study protocols
was inadequate. In addition to developing guidelines for
structuring such research, emphasis also needs to be placed
on testing both knowledge and understanding to ensure the
principle and practice of truly informed consent.
Acknowledgements: Dr Nandini K Kumar, former Deputy Director
General, ICMR, Dr Vasantha Muthuswamy former Senior Deputy
Director General, ICMR, the organisers of the Fogarty NIH / ICMR
training programme in bioethics, and Dr Alok Srivastava, Head,
Centre for Stem Cell Research, Christian Medical College, Vellore.
Funding source: none Competing interests: none.
Submission of related work: The nursing students included in
this study were participating in a research project, the results of
which were published in 2010 and 2011. The citations of these free
access articles are given below.
1. Christopher DJ, James P, Daley P, Armstrong L, Isaac BT, Thangakunam
B, Premkumar B, Zwerling A, Pai M. High Annual risk of tuberculosis
infection among nursing students in South India: A cohort study. PLoS
One. 2011;6(10):e26199. Epub 2011 Oct 12.
2. Christopher DJ,Daley P,Armstrong L,James P,Gupta R,Premkumar
B,Michael JS,Radha V,Zwerling A,Schiller I,Dendukuri N,Pai M.
Tuberculosis infection among young nursing trainees in South India.
PLoS One.2010 Apr 29;5(4):e10408.
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8. Christopher DJ, James P, Daley P, Armstrong L, Isaac BT, Thangakunam
B, Premkumar B, Zwerling A, Pai M. High Annual risk of tuberculosis
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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Patient advocacy practice among Iranian nurses


Reza Negarandeh, Nahid Dehghan Nayeri
Nursing and Midwifery Care Research Centre, Faculty of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran IRAN Author for correspondence:
Nahid Nayeri e-mail: nahid.nayeri@gmail.com

Abstract
This cross-sectional study among nurses at the hospitals of the
Tehran University of Medical Sciences aimed to investigate the
extent of involvement in patient advocacy practice among nurses.
Participants (n=330) were selected using proportionate systematic
random sampling. Data were gathered through patient advocacy
questionnaires and analysed using descriptive/inferential statistics.
The average of nurses patient advocacy practice was 3.848+
0.304 (possible range 1-5). One third of the participant nurses had
high scores in practising patient advocacy, two thirds of them had
scores in the medium range and 0.6% of nurses had low scores.
The majority of nurses (83.5%) declared their commitment to
patient advocacy as high, and 42.5% believed they had enough
ability to practise advocacy. Half of the participants claimed to
have faced problems following advocacy practices. The problems
that most participants reported included conflict with colleagues
and/or superiors, receiving oral/written admonitions, and shift
and/or ward changes. Patient advocacy scores were significantly
higher among female nurses, head nurses, and those who had
more commitment and ability for patient advocacy (p<0.001).
In contrast, nurses who worked in more than one hospital
simultaneously due to financial need (p=0.048), and experienced
conflict with superiors (p=0.047) scored less than others. The
nurses in our study carried out advocacy at acceptable levels and
adopted it as part of their own professional role. Nurses tended to
advocate for patients, but they faced many challenges in this.

Introduction
Nursing advocacy as a core value is a key component of the
professional nursing role (1). In the nursing literature, clients
vulnerability is explained as the main reason for advocacy
action (2). Many studies have shown that medicine has the
potential to restrict the autonomy of individuals, disabling
and dominating over people through bureaucracy, scientific
expertise and technology (3). The majority of patients exhibit
various degrees of vulnerability to such domination by virtue
of their illness, cultural, economic or educational background,
personality, and previous experiences with the healthcare
system.
According to Vaartio and Leino-Kilpi (4), advocacy is an integral
part of the role of professional healthcare practitioners in
promoting the well-being of patients. However, nurses show
greater commitment than other healthcare professionals in
involving themselves in patient advocacy (5, 6). It is suggested

that nurses proximity to patients and the quality of the


nurse-patient relationship prompt them to take on patient
advocacy (7).
The International Council of Nurses (ICN) introduced the
concept of advocacy in the code of ethics for nurses (4). The
ICN Code of Ethics for Nurses (8:4) states that in providing
care, the nurse promotes an environment in which the human
rights, values, customs and spiritual beliefs of the individuals,
families and communities are respected. The ICN calls on
nurses and nursing organisations to promote advocacy as a
key nursing role (9). Mallik (2) believes that patient advocacy is
a traditional role for nurses who are in the best position, within
the healthcare team, to act as patients advocates. Nurses are
considered to be in the frontline of care, and to have a good
grasp of the issues involved. Mallik also believes that nurses and
patients can be partners in advocacy. Moreover, international
healthcare reforms emphasising human rights have increased
the significance of nursing advocacy (10).
While patient advocacy is considered to be a core component
for nursing practice, its application in practice by Iranian nurses
is not so clear. Negarandeh et al (11) conducted a study to
explore patient advocacy practice among Iranian nurses, using
grounded theory. Based on their findings, they recommended
that quantitative research be conducted to examine advocacy
practice by nurses and identify the barriers and facilitators in
the process, if any.
This study aimed to investigate patient advocacy practices and
the correlation with personal characteristics among hospital
nurses in the Tehran University of Medical Sciences, Iran.

Review of literature
According to Gaylord and Grace (12), nurses feel an ethical
obligation to advocate on behalf of their patients. Moreover,
they frequently describe their decisions and actions on behalf
of patients as being a patient advocate (13, 14). Advocacy has
been described in different ways. It can refer to protecting,
mediating, and acting for patients (15); safeguarding patients
from incompetence or misconduct of other healthcare
professionals (16); asking doctors questions on behalf of
patients, giving information, and maintaining patients privacy
during nursing procedures (17); helping patients to obtain
the necessary healthcare, assuring quality of care, defending
patients rights, and serving as a liaison between patients and
the healthcare system (18); safeguarding patients autonomy,

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

and championing social justice in the provision of healthcare


(19); and acting on behalf of patients (17, 19).
According to Smith (20), a public survey in the US, regarding
patient advocacy as seen from the patients perspective, found
that 95% of patients interviewed agreed that compassion plays
a key role in the healing process. Observing dignity, showing
interest in patients questions, paying attention to their needs
and respecting cultural/racial/religious needs were described
as dimensions of compassion. Davis et al (21) in their study
examined what nurses thought about their patient advocacy
role in the Japanese health system. They found that 79% of
participants responded positively to the question: To what
extent do you act as a patient advocate? They also found
that nurses advocate for patients in two ways: by providing
information to patients and their families, and protecting
patients from acts of misconduct. It must be noted that the
latter action can disturb nurse-physician or physician-patient/
family relationships.
Ware et al (22) found, in a study conducted by the American
Society for Pain Management Nursing Research Committee
on nurses advocacy activities in pain management, that
the majority of nurses reported being involved in personal
advocacy to protect the patient. In this activity, they said they
even confronted physicians when necessary.
Kubsch et al (23) investigated factors influencing the practice
of advocacy from the nurses perspective. 52 nurses responded
to the questionnaire developed by researchers. The findings
indicated that there was limited exercise of patient advocacy
among nurses. Boyle (24), in a phenomenological study,
investigated patient advocacy in the perioperative setting. He
found that four main themes emerged from 33 interviews with
nurses: protection, communication/ giving voice, doing, and
comfort and caring.
Nurses usually experience both fulfilment and frustration in the
advocacy role (25). When their efforts are effective and the aims
of advocacy are met, they experience positive feelings such
as happiness, calmness, and satisfaction. Effective advocacy
also saves patients from harm. OConnor and Kelly (9) believe
that successful patient advocacy actions bring about positive
consequences for nurses, such as professional satisfaction,
self-confidence, self-esteem, and a sense of personal integrity.
However, sometimes, the attempts of nurses to advocate on
behalf of patients fail. In this situation, the aim is not met, and
consequently, patients remain vulnerable. Moreover, nurses face
some risks and negative feedback from colleagues, physicians,
and their institutions. According to Hanks (25), nurses may
find that nursing advocacy can threaten their careers. Some
authors discuss the practice of nursing advocacy as entailing
risks and that can result in frustration and anger (2,18). In
their working environments, nurses can be confronted with
punishments such as demotion in the institutional hierarchy,
and being labelled by their peers as instigators, troublemakers
or whistleblowers. The act of advocating for patients can result
in the disruption of relationships with peers, other healthcare
workers, and the institutional administration.

Rushton (26) notes that effective leadership, open


communication patterns, collaborative problem-solving
methods, compatibility of values and philosophy among
various healthcare team members, and procedural safeguards
such as ethics committees facilitate advocacy and promote
patient outcomes. Snowball (14) asserts that a therapeutic
relationship is central to advocacy. OConnor and Kelly (9)
state that the ability to advocate is based on sound nursing
knowledge and expertise.
During the three last decades, patient advocacy has been
emphasised as an important role for nurses in nursing
literature. However, Davis et al (21) report that patient care
and protection could become secondary to self-protection,
without the support of the nursing leadership for advocacy.
Advocacy for clients is still a risky role for nurses. It can be
hindered by real or perceived legal constraints, societal values
and factors, organisational culture, nursing status within the
healthcare system, and political and economic constraints (26).
In a study by Negarandeh et al (11) to investigate the barriers
and facilitators influencing the role of advocacy among Iranian
nurses, the participants felt that they did not receive any
support for advocacy action from their managers. They also
reported that powerlessness, the lack of a national code of
ethics, and the risks of advocacy acted as barriers to patient
advocacy.
Our knowledge of nursing advocacy is based more on
theoretical than on empirical works. Moreover, the majority of
studies on nursing advocacy are qualitative studies. (27) We
could not find any studies that included a quantitative study
of nurses patient advocacy practices in Iran. Recent articles on
this subject have focused on clarification of the concept, and
developing theories, models and instruments. There are few
quantitative studies (1, 19, 28).

Methods
Design and sample
This cross sectional study was conducted in the hospitals
of the Tehran University of Medical Sciences in 2010. Nurses
with at least one years full-time work experience in clinical
practice and having an associate degree, or higher educational
preparation in nursing, were included in the study. We obtained
completed questionnaires from 330 out of 2,500 registered
nurses working in 14 hospitals, using systematic randomised
sampling according to the number of nurses in each hospital.
A researcher was present at the hospital units and delivered
the questionnaires to the participants. The nurses were
informed of the purpose and process of the study. Completion
of the questionnaires by the nurses was considered as implied
consent of the participants. We continued the sampling process
until the needed sample size was obtained. Thus, if the selected
nurse did not wish to participate or complete the delivered
questionnaire, we randomly selected the next nurse from the
list. The refusal rate was 3%.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Study design
A questionnaire was developed based on the literature and
included the results of a previously conducted grounded
theory study on nursing advocacy (11, 29). The questionnaire
consisted of two parts. In the first part (16 items), 13 items
assessed the participants personal characteristics including
their age, gender, marital status, educational level, working shift,
work experience, position, whether they worked overtime on a
regular basis, and whether they had work experience in another
hospital. Two Likert-scale items assessed the commitment of
nurses and their ability for patient advocacy practice. One item
assessed the risks that patient advocacy participants reported
encountering. Nurses were asked to rate their own commitment
and ability for patient advocacy. They were also questioned as
to the consequences they faced in their work environment as
a result of being patient advocates. The second part consisted
of 40 items to assess the patient advocacy practices of nurses.
Some items included in the questionnaire were: giving the
patient information, clarifying doctors comments for patients,
answering patients questions, supporting patients decisions,
helping patients to obtain needed healthcare, devoting time
to listen to patients, protecting patients privacy, and acting
on their behalf. Each question used a five-point Likert scale,
extending from never to always. The possible range of scores
for patient advocacy practices was from 40 to 200. These
acquired scores were then divided by the number of questions,
so that the range of obtained scores amounted to between
one and five. Thus, the average scores of 1 2, 3, and 4 5 were
considered low, medium, and high, respectively.

Table1. The length of the participants work experience ranged


from one to 30 years, with a mean of 11.48 years (SD=7.25). In
addition, 255 nurses worked as staff nurses (78.5%), 55 of the
participants held head nurse positions (16.9%), and 15 nurses
worked as supervisors (4.6%). More than half of the nurses
(57.7%) worked in night shifts. Although almost one third of the
participant nurses did not work overtime (29%), the rest (71%)
had overtime scheduling every month. While 43.3% of the
participants did less than 50 hours overtime in a month, 24.7%
worked between 50 to 100 hours overtime, and 3% worked
more than 100 hours overtime per month. Also, 32 participants
(9.8%) worked in other hospitals simultaneously as nursing
staff. Only 33.7% of nurses had attended continuing education
programmes regarding patient advocacy.

Table 1: Participants demographic characteristics

Age

Frequency

Valid percentage (%)

22-30

110

37

31-40

124

41.8

41-53

63

21.2

Missing

33

Sum

330

100

Male

40

12.2

Female

288

87.8

Missing

Sum

330

100

Unmarried

138

42.3

Married

187

57.4

Divorced

0.3

Missing

330

100

1.5

Baccalaureate
degree

309

94.5

Masters degree

13

Missing

330

100

Gender

The content validity of the questionnaire was established


through review by an expert panel. Changes were made based
on the experts opinions. The content validity index (CVI) was
calculated for each item of the questionnaire. Those with an
item-CVI ( I-CVI) score of more than 0.80 were kept in the final
questionnaire. Reliability was determined using the test and
retest methods, with a two-week interval, among a sample of
15 nurses (r=0.86).

Marital
status

Ethical considerations

Sum

The research proposal was approved by the university research


council and research ethics committee. We stated to the
participants that by completing the questionnaire they were
giving their consent for us to use the data for analysis and
report the studys findings. We also stated that their identities
would not be revealed.

Associate
degree

Education

Data analysis
The data were analysed using descriptive and inferential
statistics such as independent t-test and one-way variances
(ANOVA) and were presented in frequency tables and crosstabs.
A p-value less than 0.05 was considered as significant.

Results
Data analysis revealed that the participants ages ranged from
22 to 55 years with mean and standard deviation (35.02
7.46). Participants personal characteristics were presented in

Sum

32.4 % of nurses obtained high scores in practising patient


advocacy; 67.0 % of the nurses were moderately successful and
0.6% of nurses achieved low scores on the patient advocacy
scale (Table 2).
According to the results, the majority of participants reported
that they helped patients in their decision making (74.5%),

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

knew medical diagnosis (81%), and built appropriate


relationships with healthcare team members (86%). In addition,
more than 95% of the participants in this study believed that
they respected patients beliefs and values, and considered
patients privacy and confidentiality throughout their nursing
care. On the other hand, only 56.4% of participants reported
that they interceded to stop mistakes occurring in clients care.
55% of the participants claimed to have put in great effort to
restore equity in the healthcare system.

Table 4: Correlation of personal characteristics with


patient advocacy practices score
Frequency Mean

Frequency

Percentage (%)

0.6

Moderate

221

67.0

High

107

32.4

Sum

330

100

Low

Position

Analysis of the participants responses to two questions about


the nurses commitment and capacity for patient advocacy
showed that the majority of nurses (83.5%) declared their
commitment to patient advocacy to be high; 42.5% of
them believed that their capacity for patient advocacy was
substantial (Table 3).

Capacity
for patient
advocacy

Table 3: Commitment and capacity of nurses for


patient advocacy
Low
Moderate
High
Missing
Sum
Degree of capacity
Low

Valid percentage (%)

0.6

52

15.9

274

83.5

330
Frequency

Moderate

162

49.8

High

138

42.5

330

100.0

Sum

Experiencing
conflict with
superiors

Valid percentage (%)


7.7

Missing

Working in
more than
one hospital

100.0

25

3.689

0.313

Female

288

3.870

0.297

Missing

Sum

330

Nurse

255

3.816

0.296

Head
nurse

55

3.976

0.299

Supervisor

15

3.941

0.362

Missing

Sum

330

Low

3.075

0.601

52

3.656

0.279

274

3.892

0.286

Medium
Commitment
to patient
High
advocacy
Missing

[95% CI 3.832 to 3.865]

Frequency

40

Gender

Mean (Standard deviation) 3.848 (0.304)

Degree of commitment

Male

330

Low

25

3.649

0.454

Medium

162

3.802

0.264

High

138

3.936

0.292

Missing

p<0.001

p<0.001

Sum

p<0.001

Sum

330

Yes

32

3.752

0.337

No

293

3.864

0.300

p=0.048

Missing

Sum

330

Yes

82

3.789

0.317

No

241

3.867

0.300

p=0.047

Missing
Sum

In addition, 50.3% of nurses experienced problems resulting


from their patient advocacy attempts. The most common
problems were: conflicts with colleagues, conflicts with
superiors, receiving oral and written admonition, and transfers
from their shifts or wards.

Significance
p<0.001

Table 2: Frequency distribution of patient advocacy


practices
Patient advocacy practices

SD

7
330

The mean of patient advocacy practices scores showed


significant relationships with gender, position, commitment to
patient advocacy and capacity for patient advocacy (p<0.001).
In other words, patient advocacy scores were significantly
higher among female nurses, head nurses, and those with
more commitment and capacity for patient advocacy. Working
in more than one hospital (p=0.048), and experiencing conflict
with superiors (p=0.047) were also factors significantly related
to patient advocacy. This means that nurses who worked in
two hospitals simultaneously, and those who experienced
conflict with superiors scored less in patient advocacy than

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

others. The mean of patient advocacy practice scores was


different among male and female nurses (gender), nurses
who work as staff nurses, head nurses and matrons (position),
and built on experiencing or not experiencing conflict with
superiors. We used a linear term test for degree of commitment
and capacity for patient advocacy because of their ordinal
scale. The results revealed a trend (p<0.001) between the two
mentioned variables and patient advocacy practices. So having
a higher degree of commitment and a greater capacity for
patient advocacy acted as facilitating factors for improvement
in patient advocacy (Table 4).

Discussion
Nurses who participated in this study showed high (32.4
%), medium (67.0 %) and low (0.6%) participation in patient
advocacy practices. This finding is similar to the findings of
Ware et al (22) that a majority of nurses are active in patient
advocacy. In addition to this, Davis et al (21) found that 79% of
Japanese nurses have seen themselves as patient advocates. In
contrast to this, Kubsch et al (23) found the participant nurses
were involved in moral-ethical advocacy, meaning that nurses
upheld the patients values in decision-making, more often
than they participated in legal, political, spiritual or substitutive
advocacy (mean 2.83, possible range 15). From this, Kubsch
et al concluded that nurses participation in patient advocacy
was limited. It should additionally be noted that this finding
is also comparable with the findings of the qualitative study
conducted by Negarandeh et al (11, 29) in Iran. This finding is
important because the ICN code of ethics also emphasises
promotion of patient advocacy among nurses (8).
Participants in this study showed a strong commitment to
nursing advocacy. A similar finding was reported in the study
by Davis et al (21). OConnor and Kelly (9) state that professional
responsibility is a key trigger for advocacy. According to Bernal
(30), the primary obligation is to patients, rather than to
physicians or hierarchies within the hospitals. Negarandeh
et al (11) in their qualitative study report that all participants
perceive advocacy as one of their roles and obligations.
Moreover, the participants believed that patients are vulnerable
in hospitals.
As mentioned earlier, most of the participants in our study were
committed to patient advocacy, but only half of them were able
to achieve it. This inconsistency can be justified by the presence
of numerous barriers to patient advocacy in hospital settings.
Hanks (27) also writes that several studies report the work
setting as an influential factor in advocacy. Hellwig et al (18) and
Kohnke (31) believe that the greatest obstacle to advocacy is
the healthcare system itself, because client advocacy is basically
in conflict with the culture of the hospital system. Traditionally,
physicians have had a dominant position in Irans healthcare
system. Simultaneously, the majority of nurses who work in
public hospitals are novices with less than two years of work
experience. As a result, they cannot communicate confidently
with patients or advocate for them. Patients and nurses are
therefore easily placed in difficult situations. Hence, if advocacy

practices are to be promoted among nurses, the organisational


culture needs to be transformed into a supportive one.
According to our findings, 50.3% of the participants were
confronted with problems during their patient advocacy
practice. The most common types of problems revealed in the
study were: conflicts with colleagues, conflicts with superiors,
receiving oral or written admonition, and being transferred
from their work shift or ward. Similar findings are reported
by Davis et al (21): Japanese nurses take risks in practising
patient advocacy. Some of the nurses in their study feared
that the reported behaviour could damage their relationship
with the physician, patients, or their families. Advocacy may
result in loss of status, or job, or place nurses in indirect (2,13)
or direct conflict with the organisation (13). According to
Hanks (25), nurses can experience both a sense of achievement
and frustration with the nurse-advocate role. It was seen that
encountering complications and failing in advocacy could
hinder nurses from advocating for their patients. It is therefore
not reasonable to expect nurses to maintain their advocacy
role without changing the current unfavourable environment.
Based on the results of our study, the mean patient advocacy
practice scores differed between male and female nurses.
It seems female nurses involve themselves more in patient
advocacy than their male colleagues. Staff nurses were less
involved in patient advocacy than head nurses and supervisors.
Obviously authority and accountability are determinant factors
for patient advocacy. Several studies have also shown that
having power, responsibility, and capacity can improve patient
advocacy practices (9,13). Being responsible for patients leads
nurses to do their best for patients. Nurses who experience
conflict with superiors were less involved in advocacy. Nurses
earnings are low in Iran, therefore Iranian nurses often work in
more than one hospital. Furthermore, patient advocacy is still
a risky role for nurses. In these circumstances, poor financial
status and/or experience of conflict with superiors can inhibit
nurses in their advocacy practices. Sellin considers problems
related to job security and management conflicts to be strong
barriers to nursing advocacy (13). We also found that there is
a link between degree of commitment and level of capacity
in the practice of patient advocacy. Thus, having a higher
degree of commitment and higher level of capacity for patient
advocacy improved performance and acted as facilitating
factors for patient advocacy.

Conclusion
The results of our study reveal that Iranian nurses have an
inclination towards implementing patient advocacy. However,
their contribution as patient advocates is not acknowledged
in the Iranian healthcare system and they encounter multiple
obstacles. These limitations in Iranian hospitals can lead to
poor quality and negligence in care. Nurses should adopt
an advocacy role and act on behalf of patients because they
interact more closely with patients than other healthcare staff.
However, it was noted that the nurses sense of responsibility
for patients motivates them to act as patient advocates in spite
of the existing obstacles.

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Acknowledgement The authors would like to thank the Tehran


University of Medical Sciences (TUMS) which funded and
supported this study under Grant no. 6537.
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Change in IJME mailing address


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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

COMMENTS

Some ethical tradeoffs in mental health legislation and practice


Nikhil Govind
Manipal Centre for Philosophy and the Humanities, Manipal University, Old Tapmi Building, Manipal 576 104 INDIA e-mail: nikhilgovind@hotmail.com

Abstract
An examination of the intersection of legal and medical discourses,
particularly in the realm of mental health legislation, provides
a rich opportunity to clarify fundamental ethical conflicts. This
essay studies one such legal discourse, the draft amendments
to the Mental Health Act (1987), to demonstrate that the realm
of ethical decision-making is constrained not only by pragmatic
administrative, training and financial issues but also by the very
contradictions that are necessarily at the heart of any ethically
conducted project, however well intentioned and reasoned.
This essay will discuss the ethical and conceptual tradeoffs
required in policy-making and practice in legislation over
mental health. While it is accepted that ethical concerns
are central to all sides of the debate, tradeoffs are always
necessary. This is because the ethical domain in itself, contains
contradictions. As a starting point, the essay will use the
draft prepared by Soumitra Pathare and Jaya Sagade of
the Centre for Mental Health Law and Policy, Indian Law
Society, Pune prepared on behalf of the Ministry of Health
and Family Welfare, Government of India (1). Dated May 23,
2010, this document may be taken as a statement of the
contemporary state of affairs. This author is less interested in
taking sides or advocating particular reforms than in using
the recommendations and the Act to raise larger questions on
societal goals and ethical conundrums.

Bringing the patient into the fold of expert systems


Broadly speaking, the Indian Law Societys draft amendments
call for more professionalisation, especially by giving greater
weightage to legal capacity. There is an appeal for the balance
to shift from the more loaded terms of illness (psychiatry,
psychiatric hospital) to a framework based on rights, dignity,
community housing and legal capacity. This would demand
the Indian government recognise its deeper obligation to
its citizenry, as well as to the international conventions that
India has ratified. The tension in distinguishing between
medical and legal definitions, priority, and authority, emerges
early in the draft, in Section 2. The conflict is over whether
the draft amendments should define mental illness on the
basis of medical-diagnostic criteria, or in terms of observable
behaviours. The arguments for a behaviour-centred approach
are that diagnostic criteria keep changing; that they are for
clinical and research purposes rather than for legal ones; and
that they are too specialised for non-psychiatrists. On the other

hand, the law better represents the family, the administration


and the concerned individual herself.
This discussion in the draft amendments takes place in the
context of substance abuse disorders, though the larger
question of mental health as defined according to behaviour
or diagnosis is clearly involved. The particular significance of
the substance-abuse context is the ethical question of how
to assign legal responsibility. For example, when judging
penalties for crimes committed under the influence, does
alcohol use diminish responsibility or enhance it? In some
cases, this judgment may depend on the diagnosis; that is,
if one commits a crime under the influence of alcohol, the
punishment is enhanced unless it is proven that the agent has
a history of substance abuse. In such a case, the clinical medical
history might ameliorate the sentence. Other commentators
have written of the limitations of the Act in parsing legal and
medical jurisdictions under specificcircumstances. For example,
how does one tackle the problem of the transportation of an
unwilling patient by agencies other than the police? What
about the question of punishing relatives or officers who
appear to have deliberately colluded in unnecessary detention
(2:14)? And how does one engage with the right to refuse
treatment, especially on the contested terrain of involuntary
hospitalisation (3:237)? This is further complicated if the
patient/client does not concede to being in denial, but only
claims that the facilities are not up to the standard to which
she is entitled. Further, many mental health issues are sub-legal,
and the connection to mental health is not clear the entire
terrain of personality disorders, for example (4).
Again, this essay is concerned with posing a generalisable
ethical question on the contradictions that routinely appear
in cases where there is a conflict between two indisputable
ethical goods. Here, the problem may be formulated as: if a
person under the influence commits a violent crime, how does
one balance the ethical good of justice through punishment
for causing injury versus respecting a persons civil rights and
dignity, and not discriminating against or, more positively,
reacting with compassion and empathy to a person with
a substance abuse problem? Thus, according to one view,
the person who commits such a crime must be given not
only compassion but also respect for the autonomy of his
lifehistory which might have led him to commit a violent act.
This autonomy must be granted to any agent as an ethical
obligation.

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When autonomy may be denied


However, this expansive definition of autonomy may be denied
to those who do not have some accepted norm of cognitive
ability. Hence, there was no dispute from the outset that mental
retardation was beyond the scope of the legislation. It is thus
admitted from the outset that all mental health subjects cannot
be equally protected. Such exclusions are by no means obvious
or self-evident. The criteria for labelling persons with mental
retardation (often no more than some version of an extended
IQ test) and denying them autonomy are bound to be fairly
arbitrary; there is no reason that such persons cannot produce
public goods worthy of their fellow citizens esteem. Indeed,
much disability advocacy in the West has been about showing
the creativity and insight of people thought to be cognitively
or developmentally delayed (to use current terminology). If
India ratifies treaties, and claims to be progressive, then it must
revisit the exclusion of these people with mental retardation
from legal process. In the Act and its critique, such exclusion is
not explained or questioned. Such exclusions are the result of
the contradictions that lie at the heart of legislation, however
well-intentioned. They are conceptual contradictions and
resolvable only at a pragmatic level. Such pragmatism is the
substance of the everyday life of citizens justice. But they leave
open questions of the ethical tradeoffs we unconsciously have
to make every day. We have to learn how to debate on several
levelsthe everyday life of disability, the clinical life, the
research life, and the legislative life. The demands of all these
levels do not overlap so easily. Paradoxically, an acceptance
of ethical contradictions may assure us of at least some of
the ethical goods of understanding, namely compassion and
tolerance of a multiplicity of demands.

The role of the advocate


This compassion and tolerance can moderate the rightful
concern with societal safety. The problem of safety exists
critically with regard to the question of other oft-excluded
populations. Here, one can refer to prisoners and mental
health conditions. At one extreme, one can argue that prisons
intrinsically generate behaviour that would be considered
criminally reprehensible. A similar problem exists for the
homeless population, who may have no one to advocate for
them neither friends, nor family, nor a streetcommunity. In
such cases, anyone willing to volunteer, including a person
not necessarily involved in organisations working with the
homeless, may be the advocate. The dangers of abuse and
meagre resources in these cases are well understood even
self-appointed volunteers require oversight and training.
However, in practice, it is no longer possible to argue that
there is an intrinsic pathology of the institution of the prison
and in homeless living that appointing an advocate is not
a solution to this situation. More discussion is invested in
legal protection of the person afflicted with mental illness
and then too, only at the moment of the acute breakdown
precipitated by that illness.
Within the Act referred to here, this chiefly devolves into the
question of the nominated representative, and the process

of acquiring power of attorney. The immediate issue then


concerns the circumstances of the appointment: should any
person with a mental illness have to immediately appoint, be
it as right or obligation, such an attorney. Or is the attorney
empowered only in the instance of the episodic state
of breakdown? The attorneys chief function is ironically
described as helping the afflicted person cope with the
alienating demands of the mental healthcare system itself;
the attorney then needs to further assume extra-legal roles
in being involved in medical and social care and the decisionmaking process. This is another instance whereby, on the back
of legal protection, the power of the nominated representative
(typically family member or friend) may be at odds with the
power of the normative medical fraternity.
It is recognised by the drafting team that, culturally in India
at least, the power of the medical fraternity, especially with
regard to mental health diagnosis and treatment, has been
overwhelming, and at the cost of the other stakeholders. Thus
the draft proposes that the person with mental illness begiven
the power of choosing someone s/he trusts to be attorney;
the document also argues for increasing that persons power
in the decision-making process of treatment and protection.
The ethical tradeoff here is explicitly cited to be between
the medical establishments judgment of best interest and
a complex of diverse and supported decision making. This
tradeoff more generally may be said to involve the larger ethical
tension between the perceived, immediate, and compassionate
duty of the doctor (which might involve further the principles of
least harm, or minimising pain) versus the perceived possible
threat to the autonomy of the patient and her (nominated)
agents. The cultural fact that in India most persons with mental
health issues continue to live within families and in subprofessional settings also motivates the drafting team to give
more importance to the lived experience of carers, both family
and friends (and hence their right to prioritise decision-making
requirements), than to medical expertise. This goes hand in
hand with the earlier prioritisation of socially and culturally
based behavioural judgments of mental health issues, rather
than a purely medical diagnostic one.

The difficulty of trusting the socio-cultural context


However, all this is further complicated if one questions the
basic assumption that the carer is always a benign entity. It is
a fact that the family or friend may not act in the best interests
of the person with mental illness, and that the person is often
likely to be harmed or exploited by the family, whether out of
self-interest or ignorance. Hence the team writing the draft
amendments to the Mental Health Act has acknowledged
that it is difficult to ascertain the reliability of this ideal of wellintentioned supported decision-making. The team refers to
the health legislation of some countries whereby the patient
must give voluntary consent to the healthcare service provider.
The question of informed consent is a large and fertile field
of inquiry; this is further complicated in the case of mental
illness. Thus when expert medical service is being provided,
there are three prioritised stakeholders the patient, the

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healthcare service provider, and, on a lower level of priority, the


nominated representative. There would remain the inevitable
ethical conflict between the immediacy of medical decisionmaking in an emergency situation and the longer-drawn-out
and more complex process of consensual decision-making
that the family or friends, and even the user/patient with
mental illness, might prefer. Further, though the law is at pains
to delegate responsibility to nominated representatives in
certain circumstances, it equally reserves the right to withdraw
that right if, in its judgment, the representative is acting in
an unsuitable manner, or not in the best interests of the
person with mental illness. In looking to appoint a suitable
representative, it sets the bar rather high. It is also imprecise - it
demands that the appointed representative be aware, among
other things, of the values and cultural background of the
concerned person.
This question of cultural values is perhaps the single largest
window that opens the medico-legal constraints to the widest
possible notion of community. In its maximalist form, this
recommendation is impossible. Who can possibly adjudicate
what cultural values are, and how they impinge on questions
of care and cure? How might we even begin to coordinate the
neutral word culture with the plethora of thorny questions of
caste, religion, class, domestic patriarchy and such other social
domains? Yet the draft must be commended for bringing this
breadth of vision into full view, and as a necessary demand. It
understands that without at least a gesture to this complex
terrain, any attempt to solve questions within the narrower
medico-legal domain will be frustrating and incomplete. The
ethics lies if only in the gesture, and this in itself is heartening
to the non-specialist, family and well-wisher of the afflicted
person.
However, this brings with it one of the deeper conceptual
dilemmas of the situation. On the one hand, there is the
emphasis on ever deeper specialisation and domain knowledge.
For example, it is not enough to be legally or medically aware;
one must also be specifically trained in an ever smaller subset
of specialisation within the medical and legal realms of mental
health. On the other hand, there is the recognition that the
final ethical resting place of this journey is beyond or outside
technical specialisation. It resides in our experiences, our
sense of cultural comfort and belongingness. Science and
legality would not be able to achieve this final realm of cultural
security. Yet the way to that final experiential, lived realm is
paved through medico-legal procedure and guarantee. How
is this impossibility to be achieved whereby the ladder has
to be used, but then emphatically thrown away, where the
end is uncontaminated by the journey? In other words, how
is the integrity of the patients cultural belongingness and
satisfaction to be maintained at all costs against a medico-legal
system which is not in the habit of stepping aside, and tamely
yielding power to other forms of knowledge that are far more
fuzzy?
Additional elements of culture include illiteracy and great
unfamiliarity with urban and modern forms of knowledge

(medical, legal, police); the diverse and stark regional, linguistic,


customary, penitentiary, and resource variations in the country;
the legal judgment of moral turpitude, a wide-ranging and
unclear but favoured term in the lexicon; insolvency; and
erstwhile imprisonment and/or conviction. It has also been
suggested that such types of people who represent large
swathes of the population should find representation in
any governmental or medical commission itself, as they best
understand it from the users perspective.

Implications for practice


The pragmatic administrative questions also follow
immediately. One field mediating individual cultural comfort
and medico-legal knowledge systems is called, vaguely,
education for all stakeholders nurses, social workers, doctors
and anyone involved in care. The question is muddied because,
again, on the one hand it is understood that education is
irreducible to simply medication or medical and legal services.
On the other hand, such education cannot be given under the
generic field of higher education, for the experience in India
has been that nurses and social workers have often gone
into the mental health field without any specific training or
licensing in that field; indeed, there is no clear licensing policy
in this field for counsellors and therapists, and the potential for
abuse and lack of expertise has been high. The larger question
of the legislative relation of the Persons with Disabilities (Equal
Opportunities, Protection of Rights, and Full Participation)
Act, 1995, to the Mental Health Act is itself unclear on what
the demarcated and overlapping areas (for example, social
justice and employment programmes, protection from abuse,
and licensing of shared detainment facilities) of concern and
relevance are.
The question of the larger, non-expert culture is also evoked
in the recommendation that the hearings be public, and even
open to the media. Here, at least, part of the ethical problem
can be formulated as the conflict between confidentiality
on the one hand (privacy, autonomy) and the need for
accountability and transparency on the other. The question is
only partly ameliorated by asking the consent of the person
involved, as consent would then immediately be related back
to capacity to consent, which judgment and assessment would
again devolve into a specialist question at the cost, putatively,
of autonomy. A further complication is the meaningfulness
of the public hearings if the patient is there involuntarily; in
such a situation, the requirement that he or she consent to the
public hearing would be actually quite nonsensical and even,
insulting, and violative of the rights of the patient.
The matter at hand is also relevant to the more specific
question of the autonomy of the patient. For example, in a
divorce or property matter, the presence of mental illness
affects the outcome in a manner that is unclear. How can one
disentangle marital behaviour from its mental health origins,
when the rights of at least two (more than two, if there are
childrenor elderly dependents) people are involved? How can
one speak of norms of appropriate marital behaviour if the
local culture to which the spouse stakes a claim deviates from

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

acceptable governmental (and progressive) norms of gender


relations? What about diverse, culturally based norms and
models of treatment, measurement of outcomes and definitions
of cure? Treatment cannot be a mystery to all but the medical
establishment; it must be explainable at every levelfrom
diagnosis to cure or amelioration. The very difficulties and
adversities of that socio-cultural space may accelerate mental
health difficulty. It is absurd then, if, after treatment, the person
is expected to go back into the very society that pathologised
or stigmatised him/her. Why would such a society be expected
to magically turn compassionate, supportive and able to render
the help required, appropriately and thoughtfully? After all, the
Act (and even the critiques of the Act) does not ask for largescale education of the community; indeed such an education
would amount to a conversion.
It sometimes seems that the notion of the socio-cultural
community is being sentimentalised as the ultimate repository
of the wholeness that will finally restore the patient. But what if
the practices of the community are generating the difficulties
in the first place? We know this is likely, be it the many rural or
urban or religious practices (sometimes with extreme practices
like chaining the afflicted), or the more generic problem of
how patriarchal households treat minors and women. How
meaningful is choice in such a situation? What about the
related, broader difficulties of ideas like informed consent,
when there is such an asymmetry between the vulnerable,
non-specialised patient and the entirety of specialised medical
and legal systems? For the patient, the choice is between
the isolating, unintelligible medico-legal system and an often
judgmental and insufficiently-informed family and community.
It is in this context that extreme caution must be urged against
the rhetoric of values, and cultural background of the person
or his or her community. Over-dependence on the notion of
native community wisdom has often had severe negative
repercussions in the past and seems unlikely to yield obvious
benefit in the future.

Conclusion
This essay has tried to highlight legitimate ethical dilemmas
where there are no easy answers. The opinions expressed here
are therefore necessarily tentativethat a final horizon of good
health governance would try and recognise the full variety
of human vulnerability, from substance abuse to personality
disorders to prisoner mental health exacerbated by the
institution of the prison. Yet this widening of compassion can
ill afford to belong exclusively to an ivory tower of reformers.
For the reality is that in India, where most patients/users are
in families, or homeless, we need to engage with popular
community perceptions (including fear, disgustand denial)
regarding the mentally afflicted. Of course the community is
not going to sit back and be educated; it will likely resist, or
turn indifferent, or hostile, or plead financial strain. Hence,
resources must be allocated for this battle over accumulated
religious, cultural and social perceptions. At any rate, it is
folly to expect the simple return of the mentally afflicted to
idealised notions of community or family. It is not yet clear if
such idealised notions of nurturing, welcoming communities
or family are the beginning of the problem or the beginning of
the solution.
References
1. Pathare S, Sagade J. Centre for Mental Health Law and Policy, Pune.
Amendments to the Mental Health Act,1987 [Internet]. New Delhi:
Ministry of Health and Family Welfare, Government of India; 2010[cited
2012 Feb 22]. Available from: http://www.wbhealth.gov.in/download/
amendments.pdf
2. Trivedi JK. Mental Health Act: salient features, objectives, critique and
future directions. Indian J Psychiatry [Internet]. 2009[cited 2012 Feb
22];51:11-9. Available from: http://www.indianpsychiatry.org/cpg2009.
asp
3. Sarin A. Amendments to Mental Health Act 1987: key controversies.
Indian J Med Ethics. 2010 Oct-Dec [cited 2012 Feb 22];7(4):236-8.
4. Murthy P. The Mental Health Act 1987, Quo Vadimus. Indian J Med Ethics.
2010 July-Sep; 7(3):152-5.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Tarnishing reputations: the downside of medical activism


Sunil K Pandya
Department of Neurosurgery, Jaslok Hospital, Dr G V Deshmukh Marg, Mumbai 400 026 INDIA e-mail: shunil3@gmail.com

When I started writing essays in favour of wronged patients


in the late 1960s, I was warned of this possibility. Criticisms of
that section of the medical profession that hurt patients or illtreated them or cheated them inevitably drew censure of my
action. While there was never any dispute about the facts laid
down by me in my papers, the admonitions I received were
against tarnishing the profession. I was upset at this as I have
always taken great care to point out that the miscreants were
only a proportion of the professionals. Even so, I was roundly
criticised at a public meeting of doctors under the aegis of the
Indian Medical Association for censuring any member of the
profession.

Bhargava and eminent members like retired High Court Justice


P D Muley. Other lay members are Mr Govindan Kutty Menon,
a social worker; Mr Jayantilal Bhandari, a social worker; and Mr
Yogesh Mittal, an advocate. The agreement papers for the trials,
including financial details, were scrutinised and signed by the
dean of the hospital. The procedure for obtaining the consent
of subjects was scrupulously followed.

While I continue to feel that errant doctors should be


disciplined, I now have before me an example of an honest
doctor whose reputation is being tarnished by a colleague.
I have witnessed the agony of the wronged doctor and his
family and write this essay to highlight the injustice done to
them.

The agreement papers permitted the scientific investigators


to be remunerated for the time and effort spent in conducting
the trial. The dean and the ethics committee knew this. This is
common practice and as long as the accounts are transparent
and audited, there is no objection to this practice. This income
featured in the audited accounts of the trials and in the income
tax returns of the investigators. Funds had also been spent
by the sponsors of the trials for travel by the investigators to
meetings where the trials were discussed.

The facts as I understand them


DrApoorva Pauranik is a consultant neurophysician and
Professor of Neurology at the Mahatma Gandhi Memorial
Medical College and at the affiliated Maharaja Yeshwant Rao
Hospital (MY Hospital) in Indore, Madhya Pradesh. I have known
him for some decades and have always found him a sober,
sincere, hard-working and straightforward person who has
the best interests of his patients at heart. He is a keen votary of
inclusion of the humanities in medical education and of ethical
medical practice.
Imagine my surprise when I read a headline in a newspaper:
Indore docs flout clinical trial norms, earn lakhs (1) and in
the text Dr Apoorva Pauranik of neurology made Rs 42
lakh The same report quotes Dr Chandra M Gulhati, editor of
Monthly Index of Medical Specialities (MIMS), as having repeated
this allegation in volume 31, number 5, of his publication
dated May 2011. Some reports even stated that Dr Pauranik
had conducted a trial of a drug used in bronchial asthma and
another for cardiac problems! (2)
The reports were sparked off after a campaign by Dr Anand
Rai of the same hospital against Dr Pauranik and other senior
teachers.
My enquiries show that Dr Pauraniks trials were conducted
at the MY Hospital after obtaining the approval of the Drugs
Controller General of India and the ethics committee of the
hospital. The ethics committee has as its chairperson Prof Dr KD

All subjects who served as participants in the trials were paid


travel expenses and sums to compensate the loss of wages on
the day they attended the clinic, in accordance with guidelines
laid down by the Indian Council of Medical Research.

The single death amongst patients included in the trials


conducted by Dr Pauranik occurred 10 months after the 70year old patient with Alzheimers disease had last attended
the clinic where follow-up evaluations were carried out. I
cannot see how the death can be linked to the trial which
she had discontinued 10 months earlier. Five adverse events
noted in Dr Pauraniks trials were evaluated by an ethics and
scientific review committee. The report of these discussions,
signed by the chairperson, Dr KD Bhargava, Head, Department
of Medicine, and two consultant neurologists from the CHL
Apollo Hospital, Indore, in no way connected with the trials,
pronounced these adverse effects unrelated to the trial.
Since the audit report is not in the public domain, it is difficult
to comment on it.
A criticism was made of the use of donezepil hydrochloride in
the dose of 23 mg in patients with Alzheimers disease in Dr
Pauraniks trial. This is surprising for the American Food and
Drugs Administration has approved such usage since 2010. In
any event, institutional ethics committees at 219 centres around
the world and Indian regulatory authorities had approved of
this dose for the trial and of the 1,467 patients enrolled for the
trial around the world, only six were from Indore. There was no
evidence of any adverse event related to the use of this dose
of the drug at any centre. It is worth noting that other Indian

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

centres participating in this trial included the Nizams Institute


of Medical Science, Hyderabad; Sree Chitra Tirunal Institute
for Medical Sciences and Technology, Thiruvananthapuram;
PD Hinduja National Hospital and Research Centre, Mumbai;
Kokilaben Dhirubhai Ambani Hospital, Mumbai; and St Johns
Medical College and Hospital, Bangalore.

Conclusion
Wherever clinical trials in India are conducted under
substandard conditions, these must be uncovered and laid
before public scrutiny; and if the facts speak against the
investigator, suitable disciplinary action instituted. This does
not mean that unfounded, misguided or vicious allegations be
propagated by doctors and laypersons in the media. It is time
that a mechanism was laid down for disciplining such vilifiers
for slander and libel.
The lay public does not understand the intricacies of clinical
trials in particular, and many medical matters in general. Editors
of journals (especially those as prestigious as MIMS) and of the
national dailies and TV networks carry a special responsibility
when reporting on them. It is up to them to explain the pros
and cons and double-check their statements. Few of them take
the trouble to contact the individual they are about to place
in the dock to obtain his version of the event(s) or scrutinise
the relevant documents. In the event, they end up accusing
innocent physicians and ruining their reputations.
The statement in an editorial in The Lancet (3) on cancer can be
applied on a wider basis: Many cancer patients are waiting for
new drugs and media reports on clinical trials are increasing.
The effect of mass media on the public is strong. In clinical
trials, specialized knowledge and technology are required.
The associated terms and skills differ from those of general
medicine and are not familiar to the public and the media.
If information on clinical trials is not properly shared among
researchers, patients and media, it can result in chaos

Some suggestions on the conduct of clinical trials


Learning from the travails of Dr Pauranik, I offer the
following suggestions:

The practice followed in the few clinical trials in which I


have participated has been to open a new bank account for
each clinical trial. All deposits are made into it and expenses
paid from it. At the conclusion of the trial, the account is
closed and audited. The chartered accountants statement
will show the exact state of financial transactions and
exonerate the innocent principal investigator of the charges
of malfeasance.

b) It is best to appoint an investigating body that is totally


independent of those conducting trials that have been
questioned. In this case, the dean could have ensured that
none of the principal investigators under investigation had
anything to do with the analysis of their trials.
c) Travel to meetings of principal investigators of multi-centric
trials is necessary for discussions, training on protocol and
conduct of the study, analysis of interim results, analysis
of adverse results and eventual collation and final analysis
of findings. Dr Pauraniks travel to a meeting where, apart
from the several Indian investigators, those from Austria,
the Czech Republic, Hungary, Italy, Korea, the Philippines,
Poland, Russia, Slovakia, Spain and the UK were also invited
cannot be faulted on any count. The inclusion of the reports
of such meetings in the closing report on the trial will
enable readers to understand the necessity for travel.
d) One of the ways forward is for institutions to set up
data safety monitoring boards for oversight within the
institution. Setting up of clinical research secretariats and a
society within the institution to accept and disburse grants
from the pharmaceutical industry would also help.

Acknowledgements I gladly acknowledge the help kindly and


promptly given by Dr Arun Bhatt, President, Clininvent Research,
that resulted in a more factual and improved essay. I also wish
to thank the anonymous reviewer who offered constructive
suggestions for improvement.
References

a) A major problem highlighted in news reports is that


Dr Pauranik profited to the tune of Rs 26,00,000. This is
based on the fact that the sums sanctioned for the trials
were paid directly into Dr Pauraniks personal bank account.
The fact that all expenses incurred during the clinical trial
were also met from this account has been ignored. Dr
Pauranik maintained a separate ledger for trial-related
income and expenses.

1. Nagarajan R. Indore docs flout clinical trial norms, earn lakhs. Times News
Network [Internet]. 2011Jun 3[cited 2012 Feb 15]. Available from: http://
articles.timesofindia.indiatimes.com/2011-06-03/india/29616513_1_
clinical-trials-quintiles-research-doctors
2. Dixit N. Indore psychiatrists admit to conducting drug trials on mentally
Ill patients. India Today [Internet]. 2012 Jan 23 [cited 2012 Feb 15].
Available from: http://indiatoday.intoday.in/story/indore-psychiatristsadmit-to-conducting-drug-trials-on-mentally-ill-patients/1/170264.
html
3. Yuji K,Narimatsu H,Tanimoto T,Komatsu T,Kami M. Sharing information
on adverse events. Lancet. 2011 May 14;377(9778):1654.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Concepts and debates in end-of-life care


Abhijit Chakravarty1, Pawan Kapoor 2
Associate Professor, 2 Professor and Head, Department of Hospital Administration, Armed Forces Medical College, Sholapur Road, Pune 411 040 INDIA Author for
correspondence: Abhijit Chakravarty e-mail: a.chak165@gmail.com

Abstract
Debates in India on end-of-life care assumed a new life after the
petition in the Supreme Court in the case of Aruna Ramchandra
Shanbaug, calling for withdrawal of life-sustaining therapy from
a patient in a persistent vegetative state. The Courts landmark
decision has led the way for discussing and developing guidelines
on various situations in end-of- life care. This paper discusses some
key concepts in end-of-life care medical futility, palliative care,
advance directives, surrogate decision making, physician assisted
suicideand euthanasia with reference to the guidelines of
various medical associations and decisions in Indian courts.
At what point does life end in a meaningful way? That is as
ethically and politically fraught a question as: at what point
does life begin? What if the medical professional judges that
treatment is futile or even detrimental to the patients best
interests? And what if the family disagrees with the doctors
judgment? If a patients life has become intolerable, and he
or she freely requests medical assistance to end it, should
such intervention be allowed? Or is it tantamount to murder?
How are such decisions arrived at, balancing the principles of
autonomy, beneficence and non-malfeasance?

Medical futility
The starting point of such discussions is the concept of medical
futility, a notion that may seem abhorrent to many physicians.
However, in the course of caring for a critically ill patient, it
sometimes becomes apparent that further intervention is futile
it will only prolong the dying process.
Clinical paradigms of futile care may often involve life-sustaining
interventions for patients in a persistent vegetative state or
resuscitation efforts for the terminally ill (1,2). It is extremely
difficult to define the concept of futility in a medical context,
where a physician may determine that a therapy will be of no
benefit to a patient and is thus not to be utilised (3). People may
differ on their judgments of the utility, purpose and effectiveness
of an intervention and how the three balance out in medical
affairs (4). Claims of medical futility inherently involve a value
judgment, and an objective, standard definition of futility would
inevitably cause some patients to receive interventions, or to
die, according to judgments with which they may disagree
(5). Efforts continue to arrive at an optimum balance between
the judgment of physicians and the wishes of the patient. Yet a
working definition of the concept is necessary.
The American Medical Association Council on Ethical and
Judicial Affairs has recommended a fair process approach,

where a case-by-case evaluation has been advised in all


medical cases involving futility judgments. The emphasis
of the approach is on fair process rather than on having a
definition that is externally imposed on the involved parties.
The approach to futility includes four distinguishable steps,
the first aimed at deliberation and resolution, two steps aimed
at securing alternatives in case of irrevocable differences and
a final step aimed at closure when all alternatives have been
exhausted (6).
An empirical study examining the effects of a procedural
approach to futility retrospectively in a large, urban, academic
centre reviewed 31 ethics consultations involving cases in
which a physician wanted to write a do-not-resuscitate (DNR)
order against the wish of the family. Ethics consultants helped
to resolve disagreement in 17 of those cases, recommended
no DNR order in seven cases, and recommended that a DNR
order be written despite the familys wish in seven cases. Of
the seven patients for whom a non-consensual DNR order was
recommended, two died before the order was written, four
died after the order was written, and one was discharged to a
hospice (7).
The Futile Care Policy of the Santa Monica Medical Centrein
the USA proposes a seven-step process to these decisions:
Step 1: Explanation of the nature of the ailment, the options
and the prognosis, by the physician to the patient
and family, allaying at the same time any concern of
abandoning the patient.
Step 2: Provision of names of appropriate consultants for an
independent opinion.
Step 3: Assistance of nurses, chaplain, social services and joint
consultation with the physician.
Step 4: Calling in the hospital bioethics committee to offer
advice and counsel the patient/family.
Step 5: Giving adequate time to the patient/family to consider
the information given.
Step 6: Offering a substitute physician or hospital if the
family remains unconvinced even after receiving all
information in respect of the futility of further care.
Step 7: Invoking personal payment in case of insistence by the
patient to continue treatment from which he/she can
no longer benefit.

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The hospital reports that the bioethics committee was involved


in only about two per cent of cases and the majority of cases
were resolved by joint consultative process between the
patient and family with the health provider team (8).

Withholding or withdrawing medical treatment


Following the judgment that treatment is futile, the question
arises as to withdrawal or withholding of medical treatment.
While this is a matter of much discussion, it is acknowledged
that such a practice is common worldwide (9). A majority
of deaths in the ICU in many parts of the world now occur
following a decision to limit life-sustaining therapy (10,11). In
an analysis of 14,488 patients from 282 ICUs in several different
geographical areas, deaths occurring after a decision to restrict
life-sustaining treatments vary from 26% of all deaths in the ICU
in Central and South America to 48% in Central and Western
Europe (12). Other studies have shown that life support was
withdrawn or withheld in 59% of patients who did not survive
in Hong Kong (13), 53% in France (14), 45% in Lebanon (15) and
41% in Sweden (16).
The decision to limit life-sustaining therapy can take one of
two forms: withholding or withdrawal. Withdrawal of therapy
is defined as the removal of a therapy that was started in
an attempt to sustain life but has become futile and is now
just prolonging the dying process. Withholding refers to the
concept of no therapeutic escalation by DNAR (do not attempt
to resuscitate) or DNE (do not escalate) orders.
With advances in critical care, it has become accepted that
prolongation of life does not mean a mere suspension of the
act of dying, but contemplates remission of symptoms enabling
a return to a normal, functioning, and integrated existence
(17). Ethically, there is no distinction between withholding
and withdrawing a mode of therapy, once one accepts the
fact that there is no duty or obligation to consider the use of
interventions considered to be disproportionate (18). Any
medical intervention must operate within the confines of a
reasonable possibility to cure, ameliorate, improve or restore a
quality of life that will be satisfactory to the patient.
However, withholding or withdrawing life-sustaining
treatment is a clinical procedure that deserves a high degree of
preparation and expectations of quality and, like many aspects
of critical care, a carefully developed protocol for such practices
will be necessary to reduce inappropriate variation. Moreover,
the patient should always be the centre of all decisions
concerning end-of-life care, and his or her familys opinion will
be the gold standard for ethical backing of all such decisions.
The British Medical Council (19) recommends documentation
of the decision to withdraw or withhold medical therapy. This
includes:
the relevant clinical findings,
details of discussions with the patient,
details of discussions with the healthcare team,
details of discussions with others (relatives),

details of treatment given, stopped or withheld, and


review date, if appropriate.

Advance directives
Advance directives, which empower patients to decide on
future treatments when they may lack the mental capacity
for decision making, have received legal and ethical sanction
for end-of-life care decisions in various countries. The three
general categories of advance directives may be written
statements or documents, oral statements made to providers
or family, or naming a proxy or surrogate to make healthcare
decisions. Healthcare ethics and law in several countries have
recognised these forms of advanced directives as an extension
of a competent persons autonomy, to be used in situations
when a person lacks competence or decision-making capacity.
Written directives have found favour all over the world and
three different types of advanced directives are presently in
practice:
living will an expression of a persons desire regarding their

own future treatment when death is imminent.


durable power of attorney naming a specific person as a

surrogate decision maker.


terminal care document a document which names a

decision maker and expresses choices about specific


treatments, often including choices of mechanical
ventilation, nutrition and hydration.
Patients may supplement these typical forms with more
extensive expressions of values or desired treatment in specific
clinical situations, making such advance directives diseasespecific (18, 19). Clinicians, being aware of illness trajectories,
are expected to initiate discussions when reviewing the current
status of the patient in end-stage disease (20). However, mental
competence and informed consent of the patient for advance
directives will remain essential requirements for such end-oflife care decisions. Moreover, surrogate decision making has
come under a cloud, following studies finding proxy decisions
to be relatively inaccurate in relation to the previously
expressed wishes of the patient (21, 22).

Physician-assisted suicide and euthanasia


Physician-assisted suicide (PAS) has now been accepted as one
of many clinically and ethically distinguishable practices in endof-life care, where medical help is provided to enable a patient
to perform an act that is specifically intended to terminate his
or her own life. This must be distinguished from euthanasia,
where the physician performs a deliberate act intended to take
the patients life, through for example, a lethal injection (23). In
differentiating euthanasia from PAS, the key difference is the
role of the patient in exercising autonomy and self-direction.
In the former, the patient is a passive recipient of dangerous
medical paternalism while in the latter, the patient actively
participates in a conscious and explicit decision-making
process and requests assistance, often self-administering the
agent for committing suicide. Euthanasia has been further

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

categorised as active, when the physician is deliberately


terminating the life of the patient, or passive, which translates
into withdrawal or withholding of life-sustaining treatment.
Many authorities support physician-assisted suicide as the duty
of the physician to relieve patient suffering, originating from a
clear understanding of the duty to respect patient autonomy
(24). The suffering of patients at the end of life may be great,
ranging from somatic symptoms to psychological morbidities.
It encompasses interpersonal suffering like dependency on
others to existential suffering based on a sense of hopelessness,
indignity or the belief that ones life is coming to an end in a
biological sense. In terminal illness, physician-assisted suicide is
viewed as an act of compassion that respects patient choice and
fulfils the obligation of non-abandonment towards the ethical
duty of physicians to his patients (25, 26). Proponents for PAS
argue that the decision to end ones life is intensely personal and
private, harms no one, and promotes demedicalisation of death
by putting the ultimate break on unrestrained use of medical
technology at the end of life (27, 28).
In a series of 56 such cases, the decision to seek PAS was
more often associated with concerns about loss of autonomy
and control than with fear of pain or suffering (29). In the
Netherlands, loss of control and tiredness of life were more
frequently reported than pain as the reasons for requesting
euthanasia (30). A very small number of patients actually make
a request for PAS or euthanasia. In Oregon, only one per cent of
dying patients make a specific request for PAS and out of them,
only 0.1% will actually die by PAS (31). However, this percentage
has been found to be significantly higher in the Netherlands,
with 17% of terminally ill patients choosing to die by means of
euthanasia and three per cent by means of PAS (32).
Both PAS and euthanasia have opponents in the medical
fraternity. Serious questions have been raised about whether
medicine can arrogate to itself the task of relieving all human
suffering, even near the end of life. It is argued that the
physician, who remains with the dying patient, suffers with the
patient in compassion, and enlists the support of family and
friends in alleviating interpersonal or existential suffering of
the patient, has acted with compassion without abandoning
the patient, though not participating in assisted suicide on
the patients request (33). Physicians have demurred at the
idea that they may become party to a decision of intentionally
bringing death to a patient (34) and may consider such
decisions as compromising the patient-physician relationship
(35). Finally, the power to prescribe assisted suicide carries with
it a profound risk for misuse and abuse (36).
Societies are divided on the issue of legalising PAS and
euthanasia, though suicide and attempted suicide have been
widely decriminalised. Though PAS enjoys significant public
and physician support (37, 38), assisting the suicide of a
patient remains a statutory offence in most parts of the world,
whereas euthanasia is legal in only two countries, namely the
Netherlands and Belgium.
The first legal sanction for PAS came in the state of Oregon,

USA, by virtue of its Death with Dignity Act, 1997, which has
now been followed by the states of Washington, Montana and
Hawaii. The Death with Dignity Act has allowed terminally ill
patients to request a lethal dose of drugs, under the condition
that two doctors confirm they have less than six months to live;
a mentally competent adult patient makes one written and two
oral requests at an interval of at least 15 days, and the doctors
are confident that the patient is not suffering from psychiatric
morbidity (39).
Euthanasia was legalised in the Netherlands by the Termination
of Life on Request and Assisted Suicide Act, 2002. The Act
states that euthanasia and PAS are not punishable if the
attending physician acts in accordance with the criteria for
due care; these criteria focuson the request being from a
mentally competent patient with unbearable and hopeless
suffering (40). Subsequently, Belgium followed in the footsteps
of the Netherlands by legalising the practice of euthanasia in
September 2002. However, the point to be noted is that PAS
and euthanasia have been legalised in both these countries
to be practised in very specific cases and under very specific
circumstances. Moreover, each case of euthanasia needs to be
reported to a regulatory commission for retrospective analysis
of compliance with legal provisions.

The emerging consensus for palliative care


The decision to forego life-sustaining treatment is ethically
and clinically distinct from requests for physician assistance
with suicide or euthanasia (41). Although the Hippocratic
Oath proscribes euthanasia and assisted suicide (42), abating
treatment has been considered appropriate when patients are
overmastered by disease(43).
Palliative care essentially affirms life and regards dying as a
normal process, neither to be hastened nor to be unnecessarily
postponed. It offers a support system for patients with active,
progressive, far advanced disease, and helps the family to cope
during the patients illness, maintaining focus on the quality of
end of life (44).
Recent research has identified patient perspectives in respect
of quality end-of-life care, which point towards the domains
of pain and symptom management, avoiding inappropriate
prolongation of dying, achieving a sense of control and
strengthening family relationships (45). Another study has
identified pain management, preparation for death and the
importance of being treated as a whole person as factors
considered important at the end of life by patients and their
families (46).
According to the Worldwide Palliative Care Alliance, while
more than 100 million people annually could benefit from
hospice and palliative care, less than eight per cent of those in
need actually access it. In a first ever global study, the current
environment for end-of-life care services was evaluated across
40 countries to measure Quality of Death Index by the
Economist Intelligence Unit, a business analysis group. The
study found that few nations, including rich ones with cutting

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

edge healthcare systems, incorporate palliative care strategies


into their overall healthcare policy with Denmark and Finland
ranked 22nd and 28th respectively. Unfortunately, India ranked
last out of the 40 countries studied (47).
In caring for a severely, progressively ill patient, what will
remain difficult is moving through the transition from severely
ill and fighting death to terminally ill and seeking peace,
shifting the goals of treatment from cure or longer survival
to preservation of comfort and dignity. Some patients seem
to accept the coming of death quite easily and for them, a
transition to palliative care becomes straightforward. But for
many, hope persists and surrender becomes excruciating (48).
Dying patients and the families who receive palliative care in
a hospice are more satisfied with their care than those who do
not (49). A contributing factor may be that patients receiving
palliative care have made this transition, thus giving up at least
some of the struggle.

The Indian scenario


End-of-life care decisions are not unfamiliar in the Indian
context, with the Upanishads accepting that death is the only
certain issue in life. The Indian Society of Critical Care Medicine
Ethical Position Statement has laid down exhaustive guidelines
for limiting life-prolonging interventions for terminally ill
patients in Indian intensive care units and providing palliative
care towards the end of life by standardising the process
of foregoing life support, thus attempting to assist Indian
clinicians in decision making when confronted with difficult
end-of-life situations (50).The guidelines deliberate on various
end-of-life situations and provide both rationale and advisories
for healthcare workers to address such situations in the
intensive care setting. However, it is not known whether these
guidelines are being used widely in critical care units around
the country.
A number of reports from India have been published in
scientific journals, indicating that end-of-life care decisions
are being practised in Indian hospitals. In one study done in
the ICUs of four major hospitals at Mumbai, limitation of care
was identified in 49 out of 143 deaths. In these 49 cases, 25% of
patients were not intubated terminally, 67% were subjected to
no further escalation of treatment and therapy was withdrawn
for 8% of patients (51). Another study reveals that almost half
the patients dying in the ICU of the study hospital (49% of
deaths) were preceded by end-of-life decisions to limit therapy
by a withholding or do-not-resuscitate order (52).
Further, until recently, the legality of withdrawal or withholding
of care has been disputed in the courts. Both abetment of
suicide (Sec 306 IPC) as well as attempt to commit suicide (Sec
309 IPC) are criminal offences in India, which is in contrast to
many western nations. The Indian courts have been repeatedly
agitated in the past by a large number of cases, where the
relatives of patients in coma or persistent vegetative states
prayed for end-of-life decisions including withdrawal of lifesustaining treatment. In P Rathinam vs Union of India 1986,
the Supreme Court upheld the plea of withdrawal of life

support by stating that the right to life under Article 21 of the


Constitution of India can be said to bring in its trail the right
not to live a forced life (53). However, this decision was quickly
overturned by a different bench of the same court in Gian
Kaur vs State of Punjab, where it was upheld that the right to
life does not include right to die. The court opined that the
right to life provides the right to live with dignity until natural
death, including a dignified procedure of death, but does not
comprehend extinction of life (54). Hence, both euthanasia and
physician-assisted suicide remain criminal offences under the
Indian Constitution.
On March 7, 2011, the Supreme Court of Indias decision on the
case of Aruna Shanbaug, a nurse of KEM Hospital in Mumbai,
may have set in motion a change in the landscape of end-oflife care in the country. Aruna, who was brutally assaulted and
strangulated by an orderly on November 27, 1973, suffered
from brain damage as a result of the assault, and is lying in
the same hospital in a persistent vegetative state (PVS) for the
last 38 years. The court ruled, for the first time in India, that the
decision to discontinue life support for a patient in a coma
or PVS can be taken by the parents, spouse, and other close
relatives in the best interest of the patient though no such
withdrawal was permitted in the case of Aruna. The decision
can also be taken by the doctors attending the patient or a
body of persons acting as a next friend. However, to prevent
any misuse of the decision, the Court directed that any such
application for withdrawal of life support will require sanction
of a High Court bench of at least two judges under Article 226
of the Constitution of India, and the Court will be assisted by
a committee of three reputed doctors to be nominated by the
Court in taking such decisions (55). Time will tell whether a
similar law gets codified by the Parliament at a later date, so as
to provide appropriate legislation in keeping with the changing
needs of the terminally ill and critical care medicine.
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ETHICS OF ETHICS COMMITTEES

ICMRs Ethical guidelines for biomedical research on human participants: need


for clarification
N Ananthakrishnan1, Shanthi AK2
1
Professor of Surgery, Mahatma Gandhi Medical College and Research Institute, Pondicherry 605 009 INDIA 2 Associate Professor of Paediatrics, Indira Gandhi
Medical College and Research Centre, Pondicherry 605 009 INDIA Author for correspondence: N Ananthakrishnan e-mail: n.ananthk@gmail.com

Abstract
The Ethical guidelines for biomedical research on human
participants prepared by the Indian Council of Medical Research
in 2006 came as a welcome step in the process of regulation of
research on human subjects, since clear cut Indian guidelines were
absent earlier. The guidelines have been accepted as the standard
operating manual by Institutional Ethics Committees (IEC) in
India. However, over a period of time, it has become obvious
that the guidelines lack clarity in certain areas and require to be
revised in the light of experiences of members in the IECs. Some of
these problems with the ICMR guidelines have been highlighted in
this paper to press for revision of the manual in the light of these
experiences.
Ethical guidelines for biomedical research on human participants
(1), published by the Indian Council of Medical Research,
is the standard document adopted almost exclusively by
ethics committees supervising research carried out on
human participants in Indian medical institutions. As such,
the guidelines have to be clear and comprehensive, and take
into account the special situation prevailing in the country.
At present, ethical issues in research in India do not get the
attention they deserve, particularly outside major full-time
research organisations. Utmost clarity is required to avoid
difficulties in interpretation, or shades of opinion not intended
by the ICMR. While serving as a member of the institutional
ethics committee (IEC) in several institutions, I have noticed
that there are several issues on which the guidelines are not
clear enough, or appear misleading, or do not give adequate
instructions, leaving scope for different interpretations
depending on individual situations. This comment seeks to
highlight such key issues. The figures in parentheses indicate
the page numbers where the issues are discussed in the ICMR
guidelines.
1. Trials on as yet non-approved drugs (35): The guidelines
state The proposed trial should be carried out, only after
approval of the Drugs Controller General of India (DCGI), as
is necessary under the Schedule Y of Drugs and Cosmetics
Act, 1940. The investigator should also get the approval of
Ethical Committee of the Institution before submitting the
proposal to DCGI. This sequence is wrong and irrational as
it expects the IEC to give approval, even if conditional, for

the trial of a drug which is yet to be approved by the DCGI


for that indication. The DCGI certainly cannot expect an IEC
to clear a drug for a trial even before it has been approved
for that indication. This issue is especially difficult for the
non-medical members of the committee to concur with,
as they find the sequence irrational. The proper sequence
would have been for the investigator to first submit the data
to the DCGI for approval of the drug, and then present the
project to the IEC once such approval has been obtained.
2. Access to benefits of therapy (36): The Helsinki
Declaration of the World Medical Assembly, 2008(2), states
that at the conclusion of the study, patients entered into
the study are entitled to be informed about the outcome of
the study and to share any benefits that result from it, for
example, access to interventions identified as beneficial in
the study or to other appropriate care or benefits. Likewise
it is mentioned in the ICMR guidelines: After the clinical
trial is over, if indeed the drug is found effective, it should
be made mandatory that the sponsoring agency should
provide the drug to the patient till it is marketed in the
country and thereafter at a reduced rate for the participants
whenever possible. A suitable a priori agreement should be
reached on post-trial benefits. The guidelines themselves
appear uncertain as they have made the clause conditional
by stating that this should be done whenever possible.
Strong legislation is required for this purpose and it is not
possible for any IEC to ensure that this happens. Many
of these trials are multi-centric. In point of fact, since
most patients enrolled in the trials are poor, they are not
informed, or are ill informed, about this clause; and it does
not form part of any informed consent document that this
author has seen. Recently, there was an instance of a trial
involving comparison of the conventional cheaper anti
epilepsy drug and a newer, costlier alternative. The trial
found that the latter was superior. However, for want of any
agreement on this matter, the newer drug was withdrawn
from the patients after the trial, since they could not afford
to pay for it. There has to be a mandatory agreement signed
by all participating centres to ensure that post-trial benefits
are not denied to participants because they are unable to
afford it.

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3. Consent and assent for epidemiological studies on


minors and school children (28,59): On the issue of
informed consent the guidelines say: there is no alternative
to obtaining individuals informed consent but what should
be the content of the informed consent is also a crucial
issue. In spite of obtaining informed individual consent, it
is quite likely that the participants / patients may not be
fully aware of their rights. The ICMR guidelines also say:
the assent of the child should be obtained to the extent of
the childs capabilities such as in the case of mature minors
from the age of seven years up to the age of 18 years.
Several epidemiological projects are carried out on school
children, from collecting simple anthropometric data to
more complex studies such as those involving studying
the effects of domestic violence on school performance.
In almost all cases, these studies are done in government
schools after obtaining consent from the department of
education and the school principal. Although the subjects
are minors, no consent is obtained from the parents or
guardians of the children, and their own assent is never
taken. The ICMR guidelines are totally silent on the rules to
be observed while carrying out epidemiological studies on
minors, particularly school children.
4. Role of control groups (3): On page 3 of the ICMR guidelines
it is mentioned with reference to the general principles
involved in research that such research is conducted
under conditions that no person or persons become a
mere means for the betterment of others and that human
beings who are subject to any medical research or scientific
experimentation are dealt with in a manner conducive and
to and consistent with their dignity and well being Such
a recommendation in the absence of any clarification could
be construed by the IEC to indicate that control groups who
are on placebo or no other therapy are not permitted under
any circumstance even if informed consent is obtained,
since they do not benefit by such a study in their individual
capacity. This has actually happened in some instances, in the
authors experience, when IECs have turned down proposals
with a control group on the grounds that the control group
does not benefit by participation in the study.
5. Scientific review before ethical review (11): The guidelines
say The IEC should review every proposal on human
participants before the research is initiated. It should ensure
that scientific evaluation has been completed before ethical
review is taken up. This procedure is seldom followed since
many medical colleges; particularly those started recently,
have not established a mechanism of scientific scrutiny
of research proposals since such a process has not been
mandated by the MCI. Hence the IEC has to function both as
a scientific review committee as well as an IEC, whereas the
investigators would like it to confine itself to the ethical issues
involved, if any. An unscientific research proposal on human
beings is ipso facto unethical as it violates scientific and
ethical principles and is, therefore, well within the purview
of the IEC. However, unless and until this is specifically
mentioned in the guidelines it would be impossible for
the IEC to function as a scientific review committee. Hence
explicit directions are required in the ICMR guidelines to
cover this contingency.

6. Research on archived specimens (12): The guidelines


permit an expedited review on research involving clinical
materials (data, documents, records or specimens) that have
been collected for non-research (clinical) purposes. No
further instructions are provided as to how this information
is to be dealt with. Research on archived specimens opens a
whole new can of worms. In many of the medical colleges,
for want of sufficient prospective material, a large part of
the research work for postgraduate dissertations is done
on archived specimens. Previously reported slides or stored
blocks are re-examined to determine disease patterns
or to reclassify them in the light of advances in the field.
The author has personally witnessed, as a member of an
IEC, a review which has reclassified a number of earlier
specimens, previously reported as benign as malignant,
and vice versa. This review has been done without the
approval of the patient from whom the specimen had been
obtained. What would the ethical requirements be of this
reclassification? Would one seek out and inform a patient
that a diagnosis labelling him/ her as malignant in the past
was wrong, and he had consequently received unnecessary
therapy; or inform him / her that while he was told he had
a benign disease it was in fact a malignancy which had
earlier been missed and therefore, he had not received the
appropriate therapy? The ethical dimensions are huge, and
the guidelines are required to be much more explicit and
comprehensive about the procedure for informed consent
in such cases, and the procedures to be adopted when the
earlier diagnosis is revised. Research on archived specimens
carries with it not only ethical risks not easily understood
by the investigators; but great legal risks to the institution
for negligence and mismanagement.
7. Right to withdrawal (4, 22, 25): The right of participants
in research to decline to participate, or withdraw, or
abstain from further participation, has been repeatedly
emphasised by the ICMR guidelines. It has been clearly
stated that the patients can withdraw without penalty or
loss of benefits which the participant would otherwise be
entitled to. However, such a clause is meaningless if the
contact involved between the subject and the investigator
is a onetime affair such as a single interview, or a single
sample of blood or body fluids for investigations. Under
such circumstances, what would the meaning be of the
term the right to abstain from further participation. Does it
mean that the information provided by the subject cannot
be used by the investigator; or that the sample of body fluid
provided would have to be ignored? How does an IHEC
ensure such an eventuality? What if the subject is part of an
ongoing trial of a new medicine, such as the trial of a new
epileptic drug mentioned earlier? Who would ensure that
the subject is referred back for routine treatment and what
would the investigators responsibility be in case of adverse
consequences of such an action?
8. Waiver of consent (23): The ICMR guidelines mention
that voluntary informed consent can be waived if it is
justified that the research involves not more than minimal
risk or when the participant and the researcher do not
come into contact or when it is necessitated in emergency
situations. The term waiver of consent needs further
clarification in the guidelines as this provision is misused

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

even in situations where questionnaires are administered


to subjects, merely because there is no invasive procedure,
although the questionnaires may require highly personal
data. The latter issue has already been covered in the
paragraph on research on archived specimens. Here also
the researcher and the subject do not come into contact.
The adverse consequences of this type of research on
patient welfare have been pointed out in the earlier
paragraph. The guidelines say that such eventualities
also include Research on anonymised biological samples
from deceased individuals, left over samples after clinical
investigation, cell lines or cell free derivatives like viral
isolates, DNA or RNA from recognized institutions or
qualified investigators, samples or data from repositories
or registries etc. It would be clear to all that such blanket
permission can have serious repercussions, both medically
and legally, in case the research uncovers an issue which
can have adverse consequences on the subject, if alive, or
on the family, in the case of an inheritable disease. Waiver
of consent is a serious issue and should be given only in
extreme cases after examining all aspects of the matter. The
guidelines should make this clear.
10. In-house monitoring and ongoing review process (18):
The greatest problem with the working of the IEC in any
institute is the lack of an ongoing monitoring process to
ensure that the guidelines have been followed, that there is
no deviation from the protocol, and that any adverse effects
are reported. In actual practice, the IEC meets only once
or twice a year, offers suggestions, and issues a letter of
approval. It has no mechanism for monitoring, which is left
to the individual institution. The guidelines must specifically
state that an IEC should meet not less frequently than once
in three months, and progress or deviation, if any, of every
ongoing project should be circulated to the members,
before the next meeting, to confirm that the process is the
one which is approved.
11. Funding of research: It has been repeatedly noticed by
several members of IECs in various medical colleges that
there is no mechanism for the funding of research by
the institute, and it is left to individuals to raise their own
resources. This is quite normal if research is voluntary.
However, if the process is compulsory as part of the
curriculum, as in postgraduate dissertations, serious
ethical issues are raised when the candidates raise the
issue that they are forced to self fund projects as part of
their dissertations. Can an ethics committee approve such
coercive research work? The condition is similar to coercive
research where students are compelled to serve as research
subjects or control groups and do not have the option to
refuse participation for fear of adverse consequences. The
guidelines once again do not explicitly prohibit this.
12. Trial on non-allopathic drugs and herbal remedies (51,
55): These have become more numerous in recent times,
particularly in medical colleges. The guidelines are quite
clear on this issue: when clinical trials of herbal drugs used
in recognised Indian Systems of Medicine and Homeopathy
are to be undertaken in Allopathic hospitals, association of
physicians from the concerned system as co-investigators/
collaborators / members of the expert group is desirable

for designing and evaluating the study. Further, However,


it is essential that such clinical trials be carried out only
when a competent Ayurveda, Siddha or Unani physician is
a co-investigator in such a clinical trial. While appearing
comprehensive, these lines leave some issues uncovered.
Mere inclusion of a physician belonging to the correct
alternative system does not ensure that patients interests
are protected. Who will take the responsibility in case of
adverse reactions to these alternate system drugs? Will they
be managed according to allopathic guidelines or will it
be left to the concerned system to treat? This is important
to know in advance, since treatment may be different
according to different systems of medicine. Will there be
provision for consultation from others belonging to that
system in case of such emergency? Can the investigator
escape responsibility by stating that the ayurvedic or
unani or siddha physician is responsible? How will benefits
of therapy be assessed since there is a vast difference in
perception of improvement in different systems? How does
one obtain informed consent for such a study? There are
many other issues. It might be better that such research
is restricted to a few national institutes which can offer
the full range of facilities rather than be taken up in newly
emerging medical colleges.
13. Ethics of live operative workshops: This issue has already
been written about (3). Operative workshops call for a
situation where a visiting surgeon performs a procedure,
which may be major, on a patient whom s/he has not seen
before, or perhaps not interacted with in any detail or any
length of time before. It also involves circumstances where
s/he has no responsibility for preoperative or postoperative
care; this is left to the parent institution conducting the
workshop. It is not clear how one would obtain proper
informed consent in such situations. These workshops
involve patients safety and patients rights. At present the
situation is not monitored by any formal ethics committee.
When such workshops are conducted by visiting surgeons
from abroad, the situation is further vitiated by the fact that
these surgeons are not licensed to practise in India unless
they obtain special permission from the Medical Council of
India. It is high time that these activities are regulated. The
best form of regulating them is to bring them under the
purview of the IEC which can be charged with monitoring
the process.
References
1. Indian Council of Medical Research. Ethical guidelines for biomedical
research on human participants [Internet]. New Delhi: Indian Council of
Medical Research; 2008 [cited 2012 Mar 26 ]. Available from: http://icmr.
nic.in/ethical_guidelines.pdf
2. World Medical Association. Declaration of Helsinki. Ethical principles
for medical research involving human subjects [Internet]. Seoul:WMA
2008[cited 2012 May 31]. Available from: http://www.wma.net/en/
30publications/10policies/b3/3. Ananthakrishnan N. The ethics of live operative workshops. Natl Med J
India. 2003 Nov-Dec;16(6):340.

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book reviewS

Exposing the thin line


M R Maithreyi
Independent author and researcher C23/236, IITB, Powai, Mumbai 400 076 INDIA e-mail: mrmaithreyi@gmail.com

Robert Klitzman. When doctors become patients. New


York: Oxford University Press; 2008. 333pp. $35
After losing his sister Karen in the September 11, 2001 terrorist
attack in New York, a devastated brother helps to organise
her memorial service and packs up all her possessions. What
happens to him over the next few weeks has culminated in the
form of the book under review.
It takes three whole months of sleeplessness and disinterest in
life for the brother, a psychiatrist by profession, to realise hes
suffering from depression. The irony of his situation sets him
thinking about what it means for a doctor to be a patient. His
curiosity leads him to 70 physicians, ranging from 25 to 87
years, with various illnesses like HIV, cancer, hepatitis C, and
bipolar disorder. These sick physicians divulge things they had
never shared with anyone before: disbelief about their illness,
a sense of shame and discrimination, and lessons re-learned.
And Im a doctor, a scientist! But Im also just a scared patient
is how Charles the internist with HIV describes his experience,
exposing the thin line between being a doctor and a patient.
The journey from one side to the other is certainly never easy,
as Dan, a middle-aged oncologist who had metastases in his
chest, reveals: We doctors wear magic coats How could it
[disease] ever attack us?
The book traverses his journey to becoming a patient, then
going back to being a doctor and interacting with patients.
For the most part, the author allows these ailing physicians to
speak in their own voice as it best conveys the struggles and
conflicting identities, poetry and pain they described What
makes one a good doctor? Is it the technical expertise or the
bedside manner? For instance, Herb, a neonatologist with heart
disease, whose doctor tells him he has a five per cent chance of
dying during surgery, realises how the way one conveys a fact
is as important to a patient as the fact itself: If I had been told
instead that I had a ninety five per cent chance of surviving, I
would have slept better... It is a lesson he has learnt for the first
time in his 30 years of practice. Surely no amount of doctoring
can prepare one to be a better patient!
As patients, these doctors discover fissures in the health
delivery systems. They see how hospitals are shaped around
the doctors, administrators, and business people who run
them rather than the patients. They note how procedures and
other technological interventions have diminished the amount
of time doctors have with patients. They also recognise how
acutely paternalistic doctors can be.

Patients open up only when certain responses are preempted


by the attending doctor. The cues they provide affirm the
possibility of raising certain issues. But it is also true that
doctors work against time pressures and cannot devote as
much time as every patient may demand. Given such a context,
most of the sick physicians in this book modify their own
practice to incorporate a more equal sharing as against the
traditional stance of doctor knows best.
The book very effectively brings out the confusions the doctors
face as patients. One moment they feel paternalistic attitudes
are all around them, the next moment they complain about the
treating physicians not being sensitive to their emotional needs.
Confusion prevails even in the way they organise their own lives.
Should one plan to live or die? Questions such as this assume
greater importance. Some of the stories like those of Deborah,
the psychiatrist with metastatic breast cancer, dreaming her hair
is back; Steven, the endocrinologist with HIV, switching from
optimism to pessimism, are indeed heart-wrenching.
One of the criticisms against doctors is that they can be
judgmental, especially in psychiatric illnesses stemming from
drug and alcohol abuse. The shame and fear of stigma and
discrimination leads many of these physicians to hide their own
illnesses. It also leads them to improve their communication
skills with patients. For instance, they see the usefulness of
asking Do you have a partner? instead of Are you married?; a
lesson they were never taught as medical students!
The author describes how spirituality aided many of these
physicians in confronting serious illnesses. But some of his
observations seem rather banal and perplexing like Scientific
training can foster skepticism and hinder desires to be
more religious or heightened awareness of these [spiritual
beliefs and practices] issues can potentially strengthen the
relationships between doctors and patients, improving their
experiences as they each grapple with disease Another time
Klitzman writes Depression may provoke religious doubt
and conversely, religious doubt may prompt or aggravate
depression. One is left asking Just how?
The book could have benefited from tight editing. Several
repetitions make the reading jarring and tedious. Though the
illness narratives in the book are specific to the US, they still
shed light for Indian readers on approaches towards and ways
of coping with disease. There are many issues that readers here
can identify with, such as stigma, identity loss, denial, medical

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

errors, paternalistic attitudes among doctors, their vulnerability


to self-prescribing, spiritual dilemmas, the role of alternative
medications, and so on. Roxannes rumination, Even for me,
sometimes its hard to get information So I cant imagine
what its like for some patients out there will surely strike a
chord among many.

The book makes a strong case for better training to make


doctors comprehend the experiences of patients with greater
sensitivity and empathy. If one is ready to overlook some of
the shortcomings discussed earlier, the book is worth a read.
But it is doubtful whether the book would really help doctors
to be better patients and to realistically know what to expect

Organ transplantation: bridging the technology-ethics gap


Sreekumar Nellickappilly
Associate Professor of Philosophy, Department of Humanities and Social Sciences, IIT Madras, Chennai, Tamil Nadu 600 036 INDIA e-mail: srkumar@iitm.ac.in

Silke Schicktanz, Claudia Wiesemann, Sabine Wohlke,


editors. Teaching ethics in organ transplantation and
tissue donation. Universitatsverlag Gottingen; 2010.
Pp81. ISBN 978-3-941875-40-1
Ever since the first organ transplant was successfully
performed in the 1950s, controversies surrounding the scope
and consequences of this medical intervention have attracted
more attention than its potential human benefit. While the
medical world finds in it the potential to provide effective
treatment for end state organ failure, the various steps
involved in the treatmentselection of donor and recipient,
the process and stages of decision making, the diverse
cultural and religious practices and beliefsraise complex
ethical challenges. Religious institutions often view the very
idea of organ transplantation skeptically. Yet it has evolved
as a widely accepted medical practice and continues to give
hope to millions of patients, across the world, who suffer from
potentially life-threatening ailments.
Organ transplantation offers several novel solutions to
intricate medical problems and consequently enhances the
quality of living and reinstalls hope in the lives of millions. But
it simultaneously generates different responses in different
cultures and introduces certain insoluble moral dilemmas. For
instance, the ethical problems it raises in a liberal democratic
environment would be characteristically different from those
in more traditional communitarian societies with strong
patriarchal social norms and values. This book edited by Silke
Schicktanz, Claudia Wiesemann and Sabine Wohlke introduces
a number of such ethical dilemmas by presenting cases from
diverse socio-cultural contexts and exploring ways to tackle
them.
The book has three parts; the first deals with a conceptual
analysis of the ethical issues associated with organ donation.
The second part extensively discusses several cases that
bring out the intricacies of the ethics of organ donation.
The third section discusses the prospect of using movies as
teaching materials in highlighting the ethical issues in organ
transplantation.

The discussion on organ transplantation begins with a


working definition of this processas a surgical replacement
of a malfunctioning organ by another human organand a
description of the various types of transplantations practised.
After an analysis of the success rates in the transplantation
of various organs, the book examines the ethics of organ
transplantation and tissue donation in different scenarios
where the donors are either living or dead. The authors
remind us that, since organ transplantation is a global and
transnational endeavour, it raises universal ethical concerns. Yet
like any other socio-technological practice, it has to negotiate
with culturally mediated beliefs.
After this introductory analysis, more substantial moral
challenges are addressed by problematising serious questions
about human identity, dignity and the meaning of the human
body in the context of organ transplantation. The authors
show how the problem of organ commodification and trading
further introduces ethical problems. Several factors add to
the complexity of the situation. Though, from the outset,
commercialisation seems to be objectionable, from many other
perspectives it seems to have its virtues. Further, the book
examines the ethical problems raised by the possibilities of
xenotransplantation. The authors also point to certain issues
related to organ shortage, as there has been a steep increase
in the number of patients in need of organs in recent years.
The section on case studies comprehensively deals with the
multiple aspects of the ethics of organ transplantation and
discusses a wide range of cases from different backgrounds
and attempts to suggest possible solution(s) for them.
These cases, though situated in diverse cultural contexts,
nevertheless present certain serious ethical issues that have
global significance and also highlight the dilemmas arising out
of conflicts between traditional moral assumptions and the
possibilities of modern technological contexts.
The third important aspect the book addresses is the prospect
of exploiting the pedagogic value of movies and using them
to interpret, elaborate and critically discuss ethical issues by

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

presenting before the viewers imaginary situations where such


issues are encountered. The authors give a list of movies, but do
not discuss them in detail.
This book reminds us that the domain of bioethics keeps
constantly offering patients and healthcare professionals
several such insoluble moral dilemmas, as it is impossible to
approach them with a set of norms that are globally fixed. Each
context offers a range of ethical challenges, which have to be
negotiated, taking into account several social, cultural, religious,
economic, and legal factors.
The book addresses some vital issues of tremendous

contemporary value, but the reader may reasonably expect


a little more discussion on some of the problems presented.
The authors take for granted that the readers are familiar with
certain moral concepts and issues, identity, meaning of body,
etc, which have different connotations in different cultures. The
section on cases is arguably the most interesting part of the
book and leaves room for a lot of discussion. This makes the
book a valuable classroom resource for bioethics instructors.
The book reminds us that, despite its strength in contributing
to substantial human welfare and happiness, technology often
becomes an agent of human alienation.

A model for holistic rural health


Manu Kothari
Former Head, Department of Anatomy, GS Medical College and KEM Hospital, Parel Mumbai 400012 INDIA e-mail: drlopamehta@gmail.com

Ulhas Jajoo: Towards holistic rural health: Sarvoday


way. Sevagram, Wardha: Mahatma Gandhi Institute of
Medical Sciences; 2012. 205pp. INR 300.
Gandhiji penned Hind Swaraj on board a ship in 1909, and its
continuing and universal relevance has been reaffirmed even
today. Dr. Ulhas Jajoos book is an encore of Hind Swaraj. The
book is charged with core truths, applicable anywhere, for
anybody, with no need for any financial largesse. The widespread
applicability of Prof. Ulhas Jajoos pioneering work requires only
the will to act, with results assured in many ways. Dr. Jajoos
thesis, his vision, is beyond the caprices of space, time, and
statistics.
The title term holistic conjures up the vision of a human body
pepped up by the right food/exercise/medicines/meditation, a
self-centred view of health. Dr. Ulhas Jajoo encompasses in his
vision just a little of the foregoing and a lot of socio-economic
factors ranging from the absence of motorable roads, even
make-shift toilets, medicines or medical care; coupled with
joblessness and loss of spirit, unwillingness to cooperate,
the dangers of small but unexpected earnings against a
background of farming and dairy farming. The chapter Eureka!
is immediately followed by the realisation of The shattered
dreams, a climactic comedown that speaks volumes of the
down-to-earth realities that the author and his large team are
conscious of.
The Bhagwad Gita on the one hand, and Gandhiji and Vinoba
on the other have reiterated, time and again, the irrelevance
of material gains in the absence of a backdrop of spirituality,
decency, societal consciousness, and the appreciation of
ones duties to society and humanity. Alexis Carrel, the Nobel
laureate, who penned the classic Man the Unknown had
pointed out, in the 1930s, that medical science pays too much
attention to so much protein and much vitamin, forgetting
all the while that frequent doses of spirituality and meaningful

prayers are even more vital. The Sicilian literary Nobel Prize
winner, Quasimodo Salvatore, summed up the modern man,
Homo modernus et scientificus as Heartless, Loveless, and
Christless. Be it the crumbling West, the struggling Far East, or
the so-called emergent economies of the BRIC group Brazil,
Russia, India, China the GNP runs parallel to Gross National
Perversion in terms of crime, drug addiction, alcoholism, rapes
and murders. On a tiny nuclear scale, Ulhas Jajoo illustrates how
economic gains get rapidly matched by social decay. Given the
clout of money and the media, and of crass commercialism, this
may be the most difficult nut to crack. Gandhiji tried and failed.
The Gujarati poet-educationist Karsandas Manek sized up India
and its Indianness in a haiku, circa 1948.
Oh! Independence
Thou petal of freedom
We dunces
Chewed you up!
That Dr Jajoo has succeeded in rendering as many as 15 villages
healthy, and that too in a sustained holistic fashion, augurs well
for his welcome crusade.
Another title term rural needs elaboration. The inevitable
assumption is that things are alright with the urban areas,
a presumption belied by Indian urbanias fouled up air,
gutterised water, filth all around, food scarce and costly, and
social unrest and crime that seem to be chronically on the
upswing. That the investors and the political powers gleefully
collaborated in describing medical services as the health care
industry automatically gave the profession the right to seek
dollars-in-disease and see patients-as-profit. The kickbacks and
commissions have seen to it that whereas all other commodities
symbolising sophistication: mobiles, laptops, I-pads, computers
and TV screens, DVD players, all progressively come down in

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

price, the medical spiral is shamelessly and uncontrollably


directed skywards. The modern medical curriculum could be
summarised, in the words of a British educationist, as putting
false pearls before real swine. Medical colleges give degrees
but no character. The exceptional qualities of Dr Ulhas Jajoo
and his team are a credit to them and to the institution they
represent.
I would like to conclude that whatever Dr Jajoo preaches
is highly doable, completely worthwhile, and contains the
promise of restoring Gram Swaraj to much of India. The book
is a must-read for all the pathies, their students, teachers,
researchers and planners, as also the powers, locally and at the
state and central levels. The book merits being part of all the
undergraduate and postgraduate curricula, backed by frequent
seminars, workshops, and the like. It could travel well beyond
the borders of India, in all directions, for the betterment of all
the nations and humanity.

The book is admirably produced. The simple colourful cover


offers an inspiring depth. The publication is sleek with clear
fonts, faultless editing, a highly readable text, and excellent
drawings by Gajanan Ambulkar. Many of the photos appear
faded, and the small drawings are too crowded to convey the
message. The next reprint of the book should take care of these
minor flaws. The no-nonsense approach of the book to the
so-called science and modernity is very telling. Dr. Jajoo has
prescribed distilled wisdom, gleaned after ceaseless personal
involvement from 1976 onward. He is a modern-day Schweitzer,
imbued with Gandhian spirit, Vivekanandas vision, and Vinobas
clarity. His march may seem a lone one, a solitary crusade, but is
endowed with veracity, applicability, fruitfulness, and above all,
is imbued with the well being of mankind, physically, mentally
and spiritually.

Indian Journal of Medical Ethics: selected readings 1993-2003


Editorial collective: Neha Madhiwalla, Bashir Mamdani, Meenal Mamdani, Sanjay A Pai, Nobhojit Roy, Sandhya Srinivasan
Published by: the Forum for Medical Ethics Society and the Centre for Studies in Ethics and Rights, Mumbai. November
2005. 248 pages. Rs 150.
This selection of essays previously published in the Indian Journal of Medical Ethics can serve as a short education on health
care ethics in the Indian context. The articles are divided into five sections: personal integrity, communication, technology
and social justice, research ethics, and law, policy and public health. The preface gives an overview on the emergence of
medical ethics as a topic of interest in India. Introductions to each section and article give the reader a background to the
discussions and their relevance today.
The topics covered include: the Hippocratic oath; ancient and modern medical ethics in India; problems in medical
education; the relationship between physicians; the role of the pharmaceutical industry, informed consent, debates on
medical technology, ethics committees, whistle blowing; how to interact with patients intending to try another system of
medicine; AIDS vaccine trials; sexuality research; authorship; and violence and the ethical responsibilities of the medical
profession.
To order copies, please send a demand draft or cheque in favour of Forum for Medical Ethics Society to Forum
for Medical Ethics Society, c/o Survey No. 2804-5, Aaram Society Road, Vakola, Santacruz(E), Mumbai 400 055 INDIA
e-mail: ijmemumbai@gmail.com
Please add Rs 30 for outstation cheques.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

FROM OTHER JOURNALS

Domestic violence as a public health challenge


There is extensive evidence of the physical and mental health
consequences of domestic violence for its survivors. This
article describes the Dilaasa project, intended to influence the
mindset and approach of healthcare workers towards victims
of domestic violence. The project is a collaboration between a
non-governmental organisation and the municipal corporation
set up a crisis centre in a municipal hospital a model that
was replicated in other hospitals in later years. The project
identifies domestic violence as a larger social issue embedded
within gender inequalities and calls for its recognition as a
public health concern. It liaises with Majlis, a legal service
organisation, and several shelters and community-based
womens groups towards providing comprehensive care under
one roof. Women are referred to the crisis centre from the
casualty, OPD and other departments that deal with patients
suffering serious injuries and trauma which may be caused by
domestic violence. Since our medical curriculum does not yet
perceive domestic violence as a medical issue, hospital staff
is unprepared to dealwith it. So the woman is sent back into
the same dangerous environment, with no acknowledgement
that the violence is bound to continue. Thus staff need to be
trained to recognise such cases and deal with them ethically
and with sensitivity. Locating crisis centres in public hospitals
allows women access since even women who are not allowed
to go out of the house on their own are rarely denied a hospital
visit. Interviews with survivors who had undergone counselling
at Dilaasa found that the programme had an impact on
the womens live. However, despite Dilaasas success, the
intervention exists only at the secondary and tertiary levels of
the healthcare system, though such crisis centres are needed
across all levels of public health institutions in India.
Bhate-Deosthali P, Ravindran STK, Vindhya U. Addressing
domestic violence within healthcare settings The Dilaasa
model.Econ Pol Wkly. 2012 Apr; 47(17):66-75.

Tuberculosis control in India


This article is a response to another article entitled Innovative
tuberculosis control in India by Nora Engel and Wiebe Bijner
(EPW, 28 January 2012). The author presents a case for public
expenditure in laboratory research, drug and diagnostic
manufacturing and the clinical management of tuberculosis
so that the disease is controlled in a profit-indifferent manner
across the world. In any discussion on tuberculosis control, it is
imperative to consider nutrition, sanitation and social inequality
in access to health care as contributors to the prevalence of

TB, the author says. Identifying a weakness in the Engel-Bijner


article, Mishra discusses the need to address politically fraught
approaches and issues in TB control, rather than using solutions
based on management and governance approaches alone.
Mishra A. Tuberculosis control (discussion). Econ Pol Wkly.
2012 Apr; 47(15):79-80.

Estimating childhood malnutrition


This article reports findings from a study on the high levels
of childhood malnutrition in six backward states of India. The
study finds that officials at all levels grossly underestimated the
extent of malnutrition in their areas. Although the anganwadi
centers were functioning in all the surveyed districts, only
25% of weighing scales were functioning, and only one-third
of the anganwadi workers were able to interpret growth
curves and graphs. The gaps identified at district and subdistrict levels included staff shortages, poor roads and delay in
release of funds revealing serious deficiencies in both funding
and implementation. Supplementary feeding material was
available only for about 50% of the total period. The constraints
expressed by anganwadi workers were: poor cooking
infrastructure, lack of adequate space and clean drinking water,
and difficulties in food distribution. Infrequent home visits,
seasonal migration, and location of anganwadis away from
the hamlets of discriminated communities further affected the
utilisation of services. Another impediment was poor clinical
diagnostic approaches.
The establishment of centralised kitchens with efficient
food distribution and the extension of anganwadi services
to children of migrant families would be steps in the right
direction. The authors recommend concerted action by the
Integrated Child Development Scheme and health services,
supported by interventions against the social determinants of
childhood malnutrition.
Dasgupta R, Arora N K, Ramji S, Chaturvedi S, Rewal S,
Suresh K, Deshmukh V, Thakur N. Managing childhood
under-nutrition, roles and scope of health services. Econ Pol
Wkly. 2012 Apr; 47(16):15-9.

Conflict of interest: is disclosure a remedy?


Disclosure of conflicts of interest (COI) is considered an
essential step to counter bias and ensure transparency and
credibility in medicine. This article looks at the loopholes in
the COI declaration mechanism of the American Psychiatric
Association (APA) and the reasons for the failure of disclosures

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

It, V, down there or vagina?

alone as a mechanism to combat the bias generated by COI.


APA is responsible for updating the Diagnostic and Statistical
Manual (DSM) of mental disorders. This redefines diagnosis
and treatment categories, thereby expanding the scope
of pharmaceutical companies. Since 70% of the DSM task
force members are financially linked with pharmaceutical
companies, it is difficult to ignore the COI of the association
and its recommendations. The APA allows members to receive
US $ 10,000 as payments and US $ 50,000 as stocks from
pharmaceutical companies. Likewise, there is no restriction
on research grants from pharma companies and the money
received for participation in speakers bureau (a platform used
by prominent physicians to promote pharma products and
influence other physicians) can be disguised as honorarium,
thereby not revealing its true origin. The editors argue that
merely disclosing COI cannot be considered as a solution to
ease the bias component. They cite Cosgrove and Krimsky
and point out that the disclosure of COI merely makes these
conflicts more open, crowds the information available to
the patient or user thereby blinding them, and tends to give
a sense of freedom from responsibility to the provider, as
the COI has already been declared. The authors further cite
Loewenstein, who has proved that disclosure of COI promotes
biased recommendations, as the providers feel that their
recommendation has to be justified, thus resorting to strategic
exaggeration about the concerned drug. Patients also tend
to trust the doctors more and place their advice above the
disclosure of COI. The authors warn about the danger of using
disclosure as a one point remedy for COI, and argue that it
might actually worsen the bias rather than diminishing it.

Rodriguez S, Schonfeld TL. The organ-that-must-not-benamed: female genitals and generalised references. Hast
Cent Rep. 2012 May-Jun;42(3):19-21.

The PLoS Medicine Editors. Does conflict of interest


disclosure worsen bias? PLoS Med. 2012 Apr;9(4):e1001210.
doi:10.1371/journal.pmed.1001210

Contributions by Arpan Tulsyan, Rakhi Ghoshal and Divya


Bhagianadh. Compiled by Divya Bhagianadh e-mail:
drdivyabhagianadh81@gmail.com

The female genital organs are usually referred to using


generalised terms and references, implying negative, even
shameful, associations. The authors have presented the issue
humorously in this article. Advertisements are not allowed
to use the word vagina even for products like douches and
tampons specifically meant for the vagina. This aversion to
using the word vagina is not limited to TV commercials or
films. The authors cite from two studies, one from 20 years
earlier and another published very recently, which revealed
similar attitudes among women about their discomfort
regarding using the word vagina. Giving another example of a
study published in the Journal of Sexual Medicine in 2010, the
authors point out that even gynaecologists and physicians
prefer euphemisms and used the term down there in a survey
questionnaire among women. Refusal to use accurate and
specific terms about the female genital organs tends to reduce
all female genital organs to the vagina and perpetuates
ignorance amongst women about the different parts and
the different functions and problems. This in turn leads to
ineffective communication with the healthcare provider.
The authors remind us about the power of language and
how naming or not naming something can provide or deny
legitimacy to something. They urge men, women, doctors and
advertising companies to use specific terms for female genital
organs so that the different organs and the different functions
of those organs are recognised and legitimised.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

letters

Proactive role for ethics committees

References

The study conducted by Shetty et al (1) on the experiences of an


ethics committee (EC) in developing an oversight mechanism is
indeed an eye opener (1). The study has identified some crucial
areas where good clinical practice (GCP) guidelines have been
violated at investigator sites. These would probably have gone
unnoticed had the EC not intervened. The authors have rightly
argued that the current procedure followed by ECs to maintain
oversight through passive monitoring needs to be changed.

1. Shetty Y, Marathe P, Kamat S, Thatte U. Continuing oversight through


site monitoring: experiences of an institutional ethics committee in an
Indian tertiary-care hospital. Indian J Med Ethics. 2012 Jan-Mar;9(1):22-6.
2. Pandiya A. Quality of independent review board/ethics committee
oversight in clinical trials in India. Perspect Clin Res. 2011Apr;2(2):45-7.
3. Thatte U, Bavdekar S. Clinical research in India: great expectations? J
Postgrad Med. 2008 Oct;54(4):318-23.
4. DeMets DL, Fost N, Powers M. An institutional review board dilemma:
responsible for safety monitoring but not in control. Clin Trials.
2006;3(2):142-8.

In the current scenario, where India is looked upon as a


potential hub for global clinical trials of increasing complexity,
it is necessary for all ECs, institutional and otherwise, to review
their roles and responsibilities as regulators of clinical research
(2), introspect on their operating procedures, and consider
innovative measures to discharge their duties efficiently.

Privatisation of healthcare and the Left

In the current study, the IEC of the concerned tertiary care


hospital proactively graduated from passive monitoring to
active oversight of its investigator sites. This role of active
monitoring is especially important for investigator-initiated
clinical trials where sponsor monitoring is limited. Also in
sponsor-initiated clinical trials, this procedure would help to
maintain ethical oversight of trial procedures.
However, undertaking routine monitoring for investigator
sites may yet be a challenging task for ECs facing problems
such as inadequate space for their operations, lack of trained
manpower, and lack of funds (3). To incorporate routine
monitoring as undertaken in this study, ECs need to have GCPtrained individuals on board with adequate experience and
expertise in on-site monitoring and audit. This calls for training
the existing EC members or having additional members with
monitoring experience. Funding the monitoring exercise may
require building the cost for on-site monitoring into the review
fees charged by ECs. It would also be essential to maintain
effective follow-up with the investigator sites to ensure that
issues raised during monitoring are resolved promptly. In
addition, it is essential for ECs to also develop a system for
safety monitoring to assess adverse drug reactions and serious
adverse events reported at the investigator sites (4).
Having an oversight mechanism in place for ECs is the need of
the hour, and its vital role in enhancing the ethical standards of
conducting research cannot be overemphasised.
Rashmi Kadam, Quality Assurance Manager, Chest Research
Foundation, Marigold Premises, Kalyani Nagar, Pune 411 014
INDIA email: rashmipatkar@gmail.com

The editorial by Dr Sanjay Nagral on the AMRI fire (1) does not,
amongst other things, point out the complicity of politics (in
this case of the CPI(M) party and the Left Front government)
with the private sector (in this case, the private health sector).
It also does not point out the neglect of the health sector
(retreat of public health institutions) during the three decades
of CPI(M) rule. Both issues have been widely reported by the
media. There is an underlying assumption in the current Left
discourse that the privatisation of the health sector and the
withdrawal of the public sector in health in India is a result of
the LPG (liberalization-privatization-globalization) policy. Here
is the example of both happening under the blessings of a Left
government. This has got implications for social analysis.
Secondly it has taken mostly philosophical analysis to bring
to the fore the power of images. In contemporary times the
work of Jean Baudrillard, amongst others, comes to mind. The
powerful use of images and simulations in late capitalism has
been highlighted by his work. Hence it takes philosophical
analysis and not commonsensical understanding to unearth
the complexity of the enchantment of modernity.
Moreover, many of the questions raised by the author
regarding safety issues and Indian society resonate in existing
analyses (both from the Left and the Right) of the continued
failure of the welfare state in India and the developing world.
The questions raised by the author are very familiar - they
become pertinent only when they indicate the need for a hardnosed class-based analysis and (behind that) a civilisational
analysis of the situation. It is only a complex of rigorous Marxist
analysis and a comprehension of the socio-cultural and moral
trajectory of a society or civilization which can give sensibility
to the questions raised.
Parthasarathi Mondal, Assistant Professor, Centre for the Study
of Developing Societies, Tata Institute of Social Sciences, VN

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Purav Marg, Deonar, Mumbai 400 088 INDIA e-mail : pmondal@


tiss.edu
Reference
1. Nagral S. Fire in a hospital, Indian J Med Ethics. 2012 Apr-Jun; 9(2): 76-7.

harm than good to the offices of public health they head. Then
only would we be practising true medical ethics in the care of
the community as a whole.
Pankaj Thomas, MPH student, School of Health System Studies,
Tata Institute of Social Sciences, Deonar, Mumbai 400 088, INDIA
e-mail: pankajthomas@gmail.com

Public health in India: unethical neglect


The vital importance of public healthcare in our country has
long been neglected.
In most developed nations, public health systems play a crucial
role in maintaining the health status of the populace. While the
private sector focuses on curative medicine and is oriented to
the individual, the government is responsible for public health
services, which are concerned with preventive medicine and
disease control and treatment for the population as a whole.
However, public healthcare can be effectively implemented
only when the government is sincerely committed to providing
such healthcare facilities to its people.
When it comes to providing world class quality medical
treatment, we are at par with most developed nations and can
provide high quality treatment at a far lower cost than most of
them. But we lag far behind when it comes to providing public
health services, many of which are particularly important for
the common man, for 80% of Indias population. While we
boast about our booming economy marching at a fast pace, we
still have numerous segments of our population suffering from
disease and hunger.
Time and again, experts have voiced the need for trained public
health personnel. After much deliberation and delay, the Public
Health Foundation of India came into being on March 28, 2006
(1). Yet, till date, it is not fully functional as an independent body
and its presence is hardly registered in Indian medical circles.
There is only one institute in India whose masters degrees in
public health and applied epidemiology (National Institute of
Epidemiology, Thiruvananthapuram, Kerala) are recognised by
the Medical Council of India (2). A few other universities and
deemed universities offer degrees or diplomas in public health.
But it is not clear if all of them follow a common course relevant
in the Indian context because there is, as yet, no governing
body for public health training regulations in India. So, if we
have admitted to the importance of public health in India,
why does the state fail to provide for its development? The
lack of experts and funding has forced us to modify the results
of studies and measures undertaken in other places to fit our
needs, and this has often had disastrous results (3,4).
There are not many public health specialists in India excluding
those doctors employed in international health agencies
like the WHO, UNICEF, and NGOs providing healthcare to the
community. Meanwhile, all the evidence indicates that India
desperately requires such experts to boost its community and
primary healthcare. Admittedly, we have made much progress
in the control of malaria, tuberculosis, HIV/AIDS, blindness,
leprosy etc. But much more can be achieved. For this, we
require qualified and trained public health experts, trained
by competent institutes, to replace the experts who do more

References
1. Public Health Foundation of India [Internet]. New Delhi: PHFI; c 20062012. About PHFI. [date unknown];[cited 2012 Jun 13]. Available from:
http://www.phfi.org
2. Medical Council of India (MCI) [Internet]. New Delhi: MCI; c 2010. List
of colleges and courses as per First Schedule of the IMC Act. 2010;
[cited 2012 Jun 13]. Available from: www.mciindia/InformationDesk/
CollegesandCourses
3. Elsayed DEM. Public health and ethics: an overview[Internet]. Sudanese
J Public Health. 2007 Jul [cited 2012 May 14];2(3):146-51. Available from:
www.sjph.net.sd/vol2i3p146-151.pdf
4. Gupta A, Dadhich JP, Faridi MM. Breastfeeding and complementary
feeding as a public health intervention for child survival [Internet].
Indian J Pediatr. 2010 Apr[cited 2012 May 14]; 77(4):413-8. Available
from: www.bpni.org/Article/child-survival

Analysis of physicians strikes and their impact


Resident doctors often resort to strikes for reasons concerning
safety at the workplace, better working conditions, better
remuneration, and policy issues such as caste-based
reservations and appointments to institute positions (1).
Although many articles have discussed whether or not
physicians should resort to strikes, few have analysed the
prevalence of strikes, their direct impact on healthcare delivery,
and beneficial outcomes, if any, for physicians (2-5). We
conducted a single centre retrospective study for analysing the
same.
In March 2011, an application was filed, on behalf of Rahul
Yadav, one of the authors, at the Office of Public Information
of Guru Teg Bahadur Hospital, New Delhi, under the Right to
Information (RTI) Act, 2005, asking for information on all strikes
called by the Resident Doctors Association (RDA) of the hospital
over the previous five years. Information was obtained on the
frequency and duration of strikes and their consequences;
demands of the residents and remedial measures taken by the
authorities; any punitive measures imposed by the authorities;
and the number of times the provisions of the Emergency
Services Maintenance Act (ESMA) had been invoked. The
impact of strikes on healthcare services in the hospital was
assessed by analysing the number of patients seen during
working days, averaged over a month, preceding the strike
period, and the number of patients seen during strike days.
The reply to the application under the RTI Act revealed that
during the preceding five years from April 1, 2006 to March 31,
2011, work was struck on five different occasions, amounting
to a total 22 days (eight days in August 2007, two days in April
2008, six days in September 2008, three days in October 2008
and three days in February 2011) in five years, an average of 4.4
days per year. The common factor mentioned for all the strikes
was misbehaviour by attendants with residents. The April
2008 strike concerned misbehaviour of attendants with nurses.

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

The RDAs demands were related to improvements in security.


There were no incidents of violence. ESMA was invoked twice
in October 2008, and in February 2011.
There was a significant decrease in the number of patients
attended to in the outpatient department (OPD) during strike
periods, compared to the number of patients seen preceding
each strike. The number seen in OPDs each day, averaged over
a month, preceding the five strike periods, were 4,866, 4,719,
4,920, 4,878 and 4,550 respectively, and the average number
seen in OPDs during the corresponding strike periods were
1,680, 2,377, 3,668, 1,389 and 3,093 respectively. The cumulative
average of the number of patients seen during the strike
period is 2,441.4 which is only 51% of the cumulative average
of 4,786.6 patients seen during the month preceding the strike
period.
Information on remedial measures by the management
revealed that during the August 2007 strike, the management
promised that the present security will be scrapped and a
better agency will be employed and regular surveillance will
be done in the security services and patient care facilities. A
written assurance was given in reply to our RTI application,
for time-bound implementation of these measures and also
that no action would be taken against striking doctors. During
the April 2008 strike, the management issued directions for
regular rounds by security officers. A file was moved for 95
extra security guards. During the September 2008 strike, the
management deployed additional security, installed close
circuit televisions at intensive care units. Also a one patientone attendant norm and the display of a gate pass by one
attendant at a time were made mandatory.
No record was available of whether any RDA members services
were terminated or suspended, or whether there was a cut in
the salary of any RDA member due to the strike.
Our analysis of the strikes revealed that there is a significant
decrease in the average number of patients seen in OPDs
during strikes. Though striking residents often start parallel
OPDs during strikes, it is clear that the health services are
seriously compromised during strikes (5). Some studies have
shown that strikes have led to decreased mortality though the
reasons suggested for this were scarcity of emergency services
and lack of emergency surgeries (4).
Repeated strikes for the same demands suggest that
despite announcing appropriate measures every time, the
management has failed to address the grievances of the
residents adequately.
Tight regulation of security personnel and a serious assessment
of the quality of security services are needed. Inclusion of RDA
members in the decision making team may help formulate
effective policies for ensuring the safety of residents at the
workplace.
Sourabh Aggarwal, Western Michigan University School of
Medicine, Kalamazoo, Michigan USA e-mail:drsourabh79@gmail.
com Rahul Yadav, Maimonides Medical Center, New York, USA

Harkirat Singh Thomas Jefferson University, Philadelphia 19107


USA Alka Sharma, Department of Medicine, Government Medical
College, Chandigarh 160 012 INDIA Vishal Sharma, Department
of Gastroenterology, PGIMER, Chandigarh INDIA 160 012
References
1. Sharma V, Aggarwal S. Residents strikes on policy issues. Indian J Med
Ethics. 2009 Jan-Mar;6(1):45-6.
2. Naik A. Resident doctors on strike. Issues Med Ethics. 1996 Apr-Jun;
4(2):46-7.
3. Lokhandwalla Y. Should doctors strike work? Issues Med Ethics. 1996 AprJun; 4(2):47-8.
4. Cunningham SA,Mitchell K,Narayan KM,Yusuf S. Doctors strikes and
mortality: a review. Soc Sci Med.2008 Dec; 67(11):1784-8.
5. Pandya SK. Resident doctors on strike. Natl Med J India. 2006 Mar-Apr;19
(2):105-6.

Human embryonic stem cells: cells without end?


Recently, human embryonic stem cells (HESC) have been in the
public discourse for a number of reasons. Prominent critiques
have been about the ethical issues related to killing human
embryos, adverse reactions, immune-rejections, malignancy,
phenotypic/genetic anomalies in transplanted cells and
futuristic notions of eternal life. Key stake holders in our social
and health system need to provide sustainable solutions for an
under-mentioned issue that concerns not only medicine and
science; but also humanity as a whole.
HESC policy models vary between countries, from being
restrictive to permissive and flexible. Countries like India, China
and the United Kingdom have a flexible policy. In India, HESC
treatment is allowed for incurable conditions. All countries
except the USA have legally banned reproductive cloning. In
the present scenario of varied legal frameworks, resourcelimited nations like India still need an open platform for
evidence-based HESC application and a responsible discussion
on the HESC concept.
Should stem cell research be encouraged in India just because
it is easier to produce embryonic cell lines owing to greater
legal flexibility and lower costs? A significant chunk of the
Indian population still exists below the poverty line and
donors are willing to sell eggs for meagre incentives without
ever questioning their own rights or the medico-legal aspect.
This certainly raises concerns about inducement or coercion
of vulnerable groups. The issue is not just whether to pay
but also when and how much to pay. Who must set these
boundaries, and how does society conduct an informed debate
on this subject? The promise of stem cells is too alluring to be
undermined just because these concerns are not posed and
addressed adequately.
The common Indian is perplexed by extreme claims and
confusing terminology. There is a clash between religion and
science in this spiritual nation. But we dont need a biology
or philosophy degree to understand what the real issue is.
The fundamental ethics is easy enough to understand when
it involves large scale production and instrumental killing of
viable embryos. Destruction of human life cannot be justified,
even in the name of saving another life.

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Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

It must be remembered that benefits may still be a long way


off as cures for complex diseases are never simple. We require
many more years of intensified research to know what we are
trading in. Till then, India and the rest of the world will remain
in precarious speculation. No serious researcher is engaged
in producing a whole human being from stem cells; rather,
the efforts revolve around standardising HESC usage and
production methods. Still, it cannot be ruled out that human
cloning is possible. As of now, there is a general consensus that
human cloning is a boundary that should not be crossed (2).
India needs a stem cell debate that is coloured neither by
religious and utilitarian fanatics nor by the big science with big
funding profit driven agenda of biotech corporate giants.
Uncontroversial progenitors like adult cells, marrow, placenta,
cord blood and induced pleuripotent cell lines should be
increasingly explored as a standard therapy medium that will
be both useful and ethical. Using surplus embryos from IVF
clinics with dignity and multiple re-use of source embryo
could further alleviate our moral burden. The medical benefits
of HESC in the treatment of dilapidating diseases are quite
promising and it certainly is a worthwhile direction to explore
in India. However, ethical discussions must be advanced
judiciously to avoid untimely political truncation of the true
potential of stem-cell research in India.
Tabinda Hasan, Department of Anatomy, Jazan University, Janan,
SAUDI ARABIA. Tehseen FM Ali, Department of Pharmacology, JJT
University, Rajasthan, INDIA
References
1. Bunn J. The great embryonic stem cell debate. BrainBlogger [Internet].
2008 May 28[cited 2011 Oct 26]. Available from: http://brainblogger.
com/2008/05/28/the-great-embryonic-stem-cell-debate/
2. Sengupta A. The great stem cell debate. Infochange agenda[Internet].
2010 Dec[cited2011 Oct 22]. Available from: http://infochangeindia.
org/agenda/ethics-of-medical-technologies/the-great-stem-celldebate.html

Ethics of bedside clinics


Teaching at the bedside is a time-tested and traditional method
of instilling the basics of medical practice in students. In fact
every medical student looks forward to clinics at the bedside.
The students see clinical signs, hear murmurs and palpate
organs with excitement and enthusiasm. The teachers in turn
demonstrate disease manifestations with zing and zeal. It is
here that basic clinical skills as well as bedside manners are
acquired by the students. Each patient is a chapter of a medical
text book to be written in the grey matter of the student.
Let us imagine ourselves in a typical case discussion at a
teaching hospital. The day before the class there is a frantic
search for good cases. Once the case is identified, the
presenter moves to the case and starts asking for details of
his or her illness. Then he or she is examined, exposing parts of
the chest or abdomen. The patient is asked to twist, turn and
obey various commands to make the physical examination
complete. More often than not, the willingness of the patient to
be part of the class the next day is not requested. Once history

taking and examination are accomplished, the batch mates


come in twos and threes and repeat this procedure, despite
protests and signs of non-cooperation from the afflicted
individual. This kind of prior preparation for the class happens
in the general ward, with no screen or curtain to maintain some
privacy. The class follows the next day, where the entire process
is repeated. Full length discussions on the different diagnoses,
treatment options and prognosis are heard by the patient who
is obviously anxious to gather any detail of his illness. Ardent
discussions and conversations about complications and causes
of death go on. Everyone, including the presenter and the
teacher enjoys the class, ignoring the fact that some patients
may be well versed in the English language.
While respecting the basic rights of all human beings,autonomy
affirms the right of every individual to determine what shall
be done to his/her body. The word autonomy originates from
the Greek word for self rule. Autonomy is one of the four basic
principles of medical ethics, affirming that the choice of a patient
with regard to his/her therapy should be respected by the
treating physician. Confidentiality in a doctor patient relationship
also stems from the patients right to autonomy. This has been
emphasised equally in the ancient medical codes of Hippocrates
and Charaka as well as in the modern day ethical codes of the
World and Indian Medical Councils.
Textbooks of medicine and clinical methods in medicine
acknowledge and honour the above rights of patients as human
beings. History taking and physical examination together is
considered the beginning of a doctor-patient relationship.
Hutchisons clinical methods states that clinical skills are grasped
during a lifetime of practice (1). The authors demand that
students treat patients with sensitivity and gentleness, causing
only minimal disturbance. Self introduction and statement
of purpose should be done at the beginning of examination
(2). It is also recommended that permission be sought to
conduct physical examination (1). Adequate privacy should
be maintained by means of a screen and conversation should
be in low tones to prevent others from hearing the interview.
When a male doctor examines a female patient, and vice versa,
a chaperone is recommended. It is stated that presentations may
be embarrassing for the patient and so the students are asked
to be kind, thoughtful and brief. Subsequent discussions which
cause unwanted anxiety to the patient should be avoided in
his/her presence (3). Widely accepted textbooks of medicine like
those of Harrison and Davidson also reiterate the importance
of good communication and respect for the patients dignity all
through a doctors interaction with a patient (4, 5). The Latin word
patiens, from which patient has originated means sufferance
or forbearance. It is the duty of the physician not to cause any
further distress or discomfort to the patient.
Let us extend the principles of autonomy and confidentiality to
these classes so that ethics begins at the patients bedside.
Jyothi Idiculla, Associate Professor, Departments of Internal
Medicine and Medical Ethics, Laviena Mallela, Medical student
(Final Year), Francis Krupa Tom, Medical student (Final Year),
GD Ravindran, Professor, Departments of Internal Medicine and

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Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

Medical Ethics, St Johns Medical College Hospital, Sarjapur Road

Bangalore-560034 Corresponding author Jyothi Idiculla


e-mail: jyothi_idiculla@yahoo.com
References
1. Swash M. Patient and doctor. In: Swash M, editor. Hutchisons Clinical
Methods. 21st edition London: Saunders; 2002: p.21
2. Snaddden D, Laing R, Masterton G, Nicol F, Colledge N. History taking. In:
Douglas G, Nicol F, Robertson C. editors. Macleods Clinical Examination.
12th edition. Elsevier; 2009:p.8-35.
3. Douglas G, Bevan JS. The general examination. In: Douglas G, Nicol F,
Robertson C, editors. Macleods Clinical Examination. 12th edition. Elsevier;
2009. p.46-66.
4. Boon NA, Cumming AD, John G. Good medical practice. In: Boon NA,
Colledge NR, Walker BR, editors. Davidsons principles and practices of
medicine. 20th edition. Amsterdam: Elsevier; 2006. p.3-16.
5. The editors. The practice of medicine. In: Fauci SA, Kasper DL, Longo
DL, Braunwald E, Hauser SL, Jameson JL, editors. Harrisons principles of
internal medicine. 17th edition. New York:McGraw Hill; 2008. p.1-6.
6. Peabody FW. The care of the patient. JAMA. 1927; 88: 872-7.

Are doctors soft targets for government?


Every medical graduate is aware of the fact that getting a postgraduate seat in a good medical college in India is not childs
play. The numbers of post-graduate seats, especially in medical
colleges run by state governments, are dwindling every year.
One has to spend a good 10 years up to post-graduation
in intense study and get out of medical college as aged,
unmarried, balding doctors. To add to our woes, a few states in
the country have made compulsory a bond service period of
three years after post-graduation.
Recently, the state of Maharashtra, in an unprecedented move,
had decided to execute the said bond services for medical
graduates from colleges run by the state government or by
municipal corporations. The Director of Medical Education and
Major Hospitals, Municipal Corporation of Greater Mumbai,
issued a notification regarding the execution of the said bond
services for candidates passing out from three corporation
medical colleges viz. Seth GS Medical College, Lokmanya Tilak
Medical College and Topiwala National Medical College located
in the region of urban Mumbai. To our utter surprise, candidates
with a super speciality degree i.e. Doctorate of Medicine (DM)
and Master of Chirurgical (MCh) qualifications were, after 13
years of toil, allotted posts of assistant medical officers which
could have been allotted to an MBBS graduate, rather than
posts of Assistant Professors in the respective specialty, with
unrealistic duty schedules and work hours. These 66 candidates
decided not to accept their postings and filed a writ petition in
the Honourable High Court of Bombay demanding posts at par
with their qualification.
On the directives of the Honorable High Court of Bombay, in
a writ petition 1440 of 2011 (Dr Maqsood Khan & others vs.
State of Maharashtra), the Directorate of Medical Education
and Research was given the responsibility of allotting such
bond services (1). In a shocking and incomprehensible move,
the Director of Medical Education and Research undertook
a massive drive to allot the so-called bond services to around
900 candidates (PG Diploma 235, MS 189, MD 420, DM

30, MCh 33) who passed out from government and


corporation-run medical colleges in an overnight procedure
from the morning of September 6, 2011, to the next morning.
The allotment procedure was chaotic, with the authorities
being oblivious to the candidates queries regarding the nature
of duty, work profile, and duty hours.
Many of the DM and MCh candidates were allotted the post
of medical officer in a speciality (a post created on paper),
but in reality these doctors were assigned the duties of an
MBBS doctor. Thus, the expertise and talent of well-qualified
doctors was under utilised by the state authorities (2). The
government machinery grossly misinterpreted the health
needs of society by pushing over-qualified doctors into
the rural sector which lacks basic infrastructure. Even more
shocking was the government action of removing ad-hoc
medical officers (already serving for a period of five to seven
years) to accommodate the bonded candidates. When the
Honorable High Court was apprised of the tactics employed
by government machinery, the state received a sharp rap on
the knuckles for making super-speciality and broad speciality
doctors serve as general duty medical officers. Some of the
MD/MS doctors were allotted posts that had either been
discontinued or were already occupied. One of my dermatology
colleagues got an allotment as a medical officer in a leprosy
unit of Pune district. To her utter surprise, the said post had
been discontinued much earlier, and she was asked to serve
under the tuberculosis control programme, taking instructions
from the medical superintendent, attending polio vaccination
camps and doing work which was in no way related to her
speciality. If such misapplication of mind continues, our medical
colleges will be lacking in full-time teachers and none would
get timely promotion.
Since 2006, the Maharashtra Public Service Commission has
not filled the regular posts of Assistant Professor, and Associate
Professor and government is trying to fill those vacancies
with such bonded candidates who cannot be permanently
commissioned. Thus there is an acute shortage of medical
teachers, to the extent that some medical colleges are on
the verge of losing the mandatory Medical Council of India
recognition of their post-graduate courses.
It is high time that the government applied its mind to tackling
this issue with common sense and sincerity. If the government
does not have enough vacancies to accommodate bonded
doctors, shouldnt one question the validity of such bonds?
Bhushan Madke, Assistant Professor, Department of Skin and
VD, Topiwala National Medical College and B.Y.L Nair Hospital,
Mumbai 400008 INDIA e-mail: drbhushan81@gmail.com
References
1. Official website of High Court of Bombay. Available from URL http://
bombayhighcourt.nic.in/data/original/2011/WP151511290811.pdf
Dated August 29, 2011. [Last Assessed on October 8, 2011]
2. PTI.Super speciality doctors move HC, say their talent is not used. IBN
Live. [Internet] 2011 Oct 7[cited 2011 Oct 8]. Available from http://
ibnlive.in.com/generalnewsfeed/news/super-speciality-doctors-movehc-say-their-talent-is-not-used/850035.html

[ 220 ]

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Indian Journal of Medical Ethics

Fourth National Bioethics Conference

Theme

Ethical and regulatory challenges in health research


December 6-7-8, 2012
University of Hyderabad, Hyderabad

Call for abstracts


Guidelines for abstracts
The conference will have sessions for paper/poster presentation and for conducting symposia/workshops. Each session will
be 90 minutes, with parallel groups. Abstracts that critically discuss cutting edge themes and concepts in bioethics, and those
that describe research findings or project outcomes will be selected. We encourage the submission of abstracts that relate to
the theme and sub-themes of the conference. Conformity to the prescribed format is essential.
Conference sub-themes
(a) Biomedical, public health and social science research; (b) Priority setting and social relevance; (c) Protection of research
participants; (d) Benefit sharing; (e) Research integrity
Format for abstracts
(1) Title; (2) Authors/speakers, designation and institutional affiliation (if any): Please list authors in order (first author/speaker
to last); (3) Background and purpose; (4) If applicable, description of research method and ethical issues/dilemmas inquired
into or focused on in workshop/symposia; (5) Results of research or outcome of ethical inquiry, if applicable; (6) Discussion
(relate to bioethics principles, theories, and frameworks) and implications for bioethics; (7) Preferred mode of presentation:
only applicable for paper presentation abstracts (Tick): Oral /poster/either; (8) Name of person presenting the paper at the
NBC/contact person for workshop/symposia; (9) The maximum number of words (parts 3-6 above) is 300.
The Scientific committee of the conference will use, among others, four main criteria for reviewing abstracts: (a) Relevance to
the subject of bioethics and the conference; (b) Clarity of ideas; (c) Originality; and (4) Methodological rigour. The decision of
the scientific committee in selection of abstracts will be final.
Deadline for the receipt of abstracts: August 31, 2012
We encourage you to submit your abstract online at http://nbcijme.ijme.in but in case you face any difficulty, it
can be sent to the NBC email id: ijme.nbc@gmail.com
Conference hosts and collaborators
Forum for Medical Ethics Society (FMES), Mumbai
University of Hyderabad, Hyderabad
Council for Social Development (CSD), Hyderabad

Conference secretariat

Mumbai

Hyderabad

Panchalee Tamulee
Coordinator, Forum for Medical Ethics Society
401, Dalkhania House, B Wing, Behind State Bank of India
Nehru Road, Vakola, Santacruz East
Mumbai 400 055 INDIA. Tel: (91 22) 26406703

[ 221 ]

Pratyusna Patnaik and Soumya Vinayan


Council for Social Development
5-6-151, Rajendra Nagar
Hyderabad 500 030 INDIA
Tel: (91 40) 24016395

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