IMMEDIACY IN PROVIDING NURSING COMFORT MEASURES AMONG DYING

PATIENTS IN THE INTENSIVE CARE UNIT

Background:
The hospice movement has evolved in the United States over the past 25 years. The focus of hospice
care is on comprehensive physical, psychosocial, emotional, and spiritual care to terminally ill persons
and their families. Hospice providers promote quality of life by protecting patients from burdensome
interventions and providing care at home, whenever possibly, instead of the hospital. Hospice nurses
provide care primarily under the guidelines of the Medicare Benefit Act of 1983, a federal program that
allows patients to die in their homes with their families and friends at their side.
Palliative care, the more recent area of specialization, is defined by the Last Acts Task Force (1999) as
the comprehensive management of the physical, psychological, social, spiritual, and existential needs of
patients, particularly those with incurable, progressive illness. The goal of palliative care is to help them
achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of
functional capacity, while remaining sensitive to personal, cultural and religious values, believes and
practices.
The care that both hospice and palliative care nurses provide is essentially the same as demonstrated by
the Hospice and Palliative Nurses Role Delineation Study. However, hospice and palliative care nurses
differ in their preparation and practice settings.
Roles:
Hospice and palliative care nurses work in collaboration with other health providers (such as physicians,
social workers, or chaplains) within the context of an interdisciplinary team. Composed of highly qualified,
specially trained professionals and volunteers, the team blends their strengths together to anticipate and
meet the needs of the patient and family facing terminal illness and bereavement.
Hospice and palliative nurses distinguish themselves from their colleagues in other nursing specialty
practices by their unwavering focus on end-of-life care. Hospice and palliative care includes 24-hour
nursing availability, management of pain and other symptoms, and family support. By providing expert
management of pain and other symptoms combined with compassionate listening and counseling skills,
hospice and palliative nurse promote the highest quality of life for the patient and family.
Regardless of the setting, hospice and palliative nurses strive to achieve an understanding of specific
end-of-life issues from the perspective of each patient and his or her family. To accomplish this, nurses
collaborate in a cultural assessment of the patient and family and provide culturally sensitive care.
Hospice and palliative nursing is not only practiced at the bedside. Nurses, consistent with their individual
educational preparation, experience and roles, promote the highest standards of end-of-lie care through
community and professional education, participation in demonstration grants, and in end-of-life research.
As societys needs change and awareness of the issues surrounding the end of life increases, nurses are
called to advocate for the terminally ill and their families through public policy forums, including the
legislative process.
Specialties:
Although the majority of hospice and palliative care nurses are generalists some elect to sub-specialize
(for example, in oncology, pediatrics, or geriatrics) and pursue advanced practice credentialing. Both the
hospice and palliative care nurse have a similar knowledge base. Certification for nurses practicing in
hospice and palliative care as a Certified Hospice and Palliative Nurse (CHPN) has been available since
1999, following the initial development of the Certified Nurse Hospice (CRNH) in 1994. The certification
process reflects a competency basis for the evaluation of an individuals practice and is not an advanced
certification.
Practice Settings:
Hospice nurses typically practice in the homes of terminally ill persons and their family caregivers;
however, some also work in in-patient hospice units. Hospice nurses also visit patients who are enrolled
in hospice and living in a variety of long-term care settings (e.g., nursing homes, foster care, assistedliving). On average, hospice patients usually die within a month of enrolling in the hospice program.
Palliative care nurses typically practice in non-home settings including hospitals, nursing homes, and
rehabilitation units and they treat patients with longer prognoses.
Qualifications:

There is a distinct body of knowledge with direct application to the practice of hospice and palliative care
nursing. This includes: pain and symptom management; end-stage disease processes; psychosocial,
spiritual, and culturally sensitive care of patients and their families; interdisciplinary collaborative practice;
loss and grief issues; patient education and advocacy; bereavement care; ethical and legal
considerations; communication skills; and awareness of community resources.
Education:
Hospice and palliative nurses are registered nurses prepared at the associate- degree, baccalaureatedegree, and/or masters-degree level (there are currently two masters degree programs that focus on
hospice/palliative care New York University (New York, NY) and Ursuline College (Pepper Pike, OH). A
small percentage of hospice and palliative nurses hold a doctoral degree.
Salary Range:
Hospice and palliative care nurses salaries are comparable to those of other registered nurses. If the
individual holds an advanced practice degree, his or her salary is comparable to that of nurse
practitioners.
Associations:
Hospice and Palliative Nurses Association (HPNA)
One Penn Center West Suite 229
Pittsburgh, PA 15276-0100
412-787-9301
Fax: 412-787-9305
E-mail: HPNA@hpna.org
Web site: www.hpna.org
Publications:
Journal of Hospice and Palliative Nursing
(www.lww.com/product/?1522-2179)

THE ROLE OF THE NURSE IN PALLIATIVE

CARE
Introduction
Palliative care is defined as: ... a concept of care whic
h provides a coordinated medical, nursing and allied
health service for people with prog
ressive incurable illnesses, delivered wh
ere possible in the environment of
the persons choice, and which provides physical, emo
tional and spiritual support for patients, for families
and for friends. The provision of palliative care serv
ice includes grief and bereavement support for the
family and other carers during the life of the patient and continuing after death.
1

Palliative care is proactive care which seeks to maxi

mise quality of life for people and families facing life
threatening illnesses. Dying and death are recognised
as a part of life where opportunities remain for
personal growth and social contributions. Care aims to
be responsive to, rather than directive of, the needs of
each person and their family.
Although it has a major focus on interventions for the

relief of symptoms, palliation is recognised as more

than a physical experience. The influence of social
, cultural, psychological and spiritual factors on the
experience of symptoms and dying demands a style of car
e that does not focus on death as a medical event.
In recognition of this, a multidisciplinary approach is
an essential feature in the delivery of palliative care.
Multidisciplinary in this context means nursing, medi
cal, allied health practitioners and volunteers working
together to meet the complex needs of the individual and their family.
While care of individuals in the palliative care phase of
an illness has always had a place in Australian health
care, palliative care has emerged as a distinct
specialisation over the last 20 years.
Specialist palliative care nurses bring a unique set of
skills and qualities that enhance the care and support
provided to people facing the end of life and to the fa
milies and communities that support them. These skills
and qualities are developed through many years of in
terdisciplinary clinical practice and continuing
education and they are informed by the founding philosophies of palliative care.
Specialist palliative care nurses dem
onstrate leadership in autonomous
and collaborative practice, in
modelling end of life care, and in providing mentorsh
ip and education to other nurses and health care
professionals. They have extensiv
e knowledge and experience in the
management of pain and complex
symptoms associated with terminal
illness. Specialist palliative care nur
ses work collectively and with other
professional groups to advance the body of knowledg
e about end of life care, initiating and conducting
research and incorporating research findings where appropr
iate. They work collectively and with others to
advocate for change and provide policy advice to G
overnment and professional organisations regarding a
wide range of clinical, professional and service related issues.
Specialist palliative care nurses knowledge of end of lif
e issues, combined with a strong commitment to the
palliative care ethic, usually extends the work of the
specialist nurses beyond the bedside to advocating the
need for palliative care on the sociopolitical level, a
nd to promoting optimal well-being at the end of life
regardless of a patients location or financial position.
Specialist palliative care nurses are also advocates for th
e families and friends of palliative care patients, and
by promoting and teaching positive approaches to grievi
ng they extend the benefit of palliative care to bring
health to the wider community.

While the contribution of all nurses to the care of peopl

e at the end of life is important, palliative care is
extended and strengthened by the
knowledge and advocacy work of
specialist palliative care nurses.
Rational
Nursing is a discipline which has a fundamental concer
n with the human condition and the totality of human
experience including the end of life. Palliative care is an emerging specialisation of nursing and is
developing a body of knowledge and skills specifically
focused on the care of people facing the end of life.
Nursing has a role in palliative care that is sancti
oned and valued by the community. The continued
development of nursing knowledge a
nd skills in this area, through the development of specialist palliative
care nursing, is a legitimate activity for nurses. Nurses
recognise the diversity if services that may be needed
by individuals and their families or carers and acknowl
edge and value the multidisciplinary context in which
palliative care is delivered. The promotion of effec
tive care for individuals in the palliative care phase of
their illness and their families and carers is a priority c
oncern of nurses. Nursing care of individuals in the
palliative care phase of their illness occurs in a variety of clinical and geographical settings.

Palliative Care: During your career as a nurses aide, there will be times when you will take
care of patients that have incurable diseases and that are dying. While every patient
handles death and dying in their own unique way, its up to you to follow the care plan that is
designed to help get them through this natural, but often traumatic experience.
Palliative care refers to a comprehensive approach during patient care. This multifaceted
technique includes management of physical, social, psychological, spiritual and existential
needs of the patient.
The ultimate goal of palliative care is for the patient to achieve the best possible quality of
life through relief of suffering, control of symptoms and restoration of functional capacity.
Additionally, you will need to be sensitive to the patients cultural and religious values during
this time of need.
Palliative care is often complementary to other forms of treatment, but just as essential.
This method of care helps guide patients and families as they make their transition during
the changing goals of care during the dying process. It also assists the dying patient in
addressing end of life issues.
The goal of this care is also to ease stress for terminally ill patients and their families. As a
nurses aide, you will develop these necessary skills through experience and on-the-job

observation as well by taking an active role in continuing education opportunities related to

dying patients.

Relieving Pain
According to the Joint Commission on Accreditation of Health Care Organizations, pain is a
common part of the patients experience during the dying process. Mental stress often
accompanies the physical pain during fatal illness. It is important for you to know how to
help relieve both physical and mental trauma during this time.
Patients will perceive pain differently and many factors come into play such as fear, anxiety,
fatigue, insomnia and depression. In your role as a nurses aide, you can help to eliminate
some of the underlying psychological factors. Having a positive attitude and simply taking
the time to listen to the patients complaints can play a major role in helping to relieve their
pain.
Many healthcare facilities rely on a numeric pain scale of 0 to 10 to measures a patients
pain level. These levels are self-reported by the patient, based on the intensity of pain at
that time. Knowing the patients level of pain is necessary to help keep the nursing staff
informed.
Always trust what patients say about their pain and dont make any assumptions regarding
their pain or suffering. Your role is to be courteous during this time of high anxiety. Do your
best to comfort patients and let them know that you are there to help.
Sometimes even a hot towel or a warm water bottle can help relieve some of the patients
pain. Use your training, common sense and care giving techniques to help ease the dying
patients physical and mental pain.

Keeping the Patient Comfortable

As the patient progresses through the dying process, the goals shift from treating illness to a
concentrated effort on keeping the patient comfortable. As a nurses aide, you will have a
hands-on role during this crucial time. At times, it may be emotionally draining, but never
forget this is the time when patients need you the most.
Keep the patient comfortable by talking to them as well as assessing their needs. You will
still have to be responsible for your primary duties such as taking vital signs and reporting
any issues to the nursing staff.
During this time, it is also still important to remember the basic fundamentals of caring for
the patient. Keep the patient clean by giving them frequent baths and monitor any hygiene
issues. If the patient is unable to get out of bed, change their position every two hours or
more frequently as needed. Help the patient get into whatever position is comfortable for
them.

QNAS
Q. What is palliative care in terms of patients who are not likely to recover from their
illnesses (terminally ill)?
A. Palliative care is a term used for care that is provided for patients who are not likely to
recover from their current medical conditions. This type of care is to be a total and
comprehensive care. The care is to address a variety of needs of the individual including
their physical, psychological, spiritual and social needs.
Explanation: This care is intended to help keep patients comfortable when they are
terminally ill. It is intended to help patients and families when an individual is terminally ill.
A CNA will be a part of this care in many settings. The CNA should provide compassionate
and kind care and extend their care to the family and friends of the individual who is not
likely to recover from their medical conditions.
Q. How can a nursing assistant help a patient to have improved spirits even if they are not
likely to recover from their illness?
A. Nursing assistants can help patients to have a more positive attitude even if they are not
likely to recover. You can do this by providing empathetic and compassionate care. Take
the time to listen to patients if they express feelings of frustration, fear, etc. Provide
encouraging words. Try to encourage patients to continue with their daily activities and to
eat.
Explanation: Patients who are not likely to see a full recovery will have many emotions.
Provide al listening ear for patients whenever you can so they can work though some of
those emotions. Provide encouragement when a patient sees some improvement. Remind
patients the importance of eating and completing other activities to keep up their strength.
You can help a patient to feel better emotionally even if they are not going to improve
physically.
Q. Why is it important for a CNA to take good care of themselves so they can take good
care of terminally ill patients?
A. You need to take good care of yourself so that you can care well for your patients. Get a
good nights sleep before your shifts. Do not skip meals. Find someone you can take to
when you are sad about a patient who is in declining health and not expected to recover.
Explanation: When you take good care of yourself, you will have better health and more
energy to care for your patients. You will also have an improved mood which will make it
more possible for you to help you own patients keep a positive attitude. It is sad to work
with patients who have terminal illnesses. You should always have someone you can talk to
about your own feelings when a patient is not doing well or when a patient has passed
away.

Caring for a dying patient is a complex role for a nurse. Some nurses are better prepared for
this role, others are not. In order to effectively care for this type of patient, nurses need to
shift from saving life to preparing for death.
Helping the Patient Transition
It is important for nurses to recognize the symptoms of the terminal phase of life so that they
can alter their care. These symptoms include an increase in pulse just before death,
withdrawal and increased secretions. These increased secretions along with relaxations of
the tongue and tissues of the soft palate cause what is known as the death rattle. Increasing
unresponsiveness and decreasing urinary output are also impending signs of death. Many
of these symptoms may be ways in which the body conserves energy for the last moments
of life.1
In order to help the patient transition, nurses might want to abandon routine practices and
diagnoses. For example, forcing fluids or using nutritional supplements are interventions
that may not be a priority in terminally ill patients. It may be more appropriate to provide the
patients with a quiet atmosphere and less environmental stimuli. 1 Turning the patient every
one or two hours, taking vital signs regularly, and complete bed baths in the last days of life
may only distress the patient and family in their last moments together.
When caring for dying patients, it is more important to have strong assessment skills in
order to know what is more appropriate for the patient. Death is very individualistic and what
is helpful for one patient may not be for another. Understanding the patient's disease,
learning about the patient's coping abilities, and communicating effectively regarding their
wishes are essential to proper treatment.1
Dehydration Issues
Terminally ill dehydration is a complex issue. Many health professionals feel that IV and
nasogastric tube feedings are unnecessary. Others feel that keeping a patient hydrated is a
basic care intervention that is as vital as any other life-sustaining treatment, such as
mechanical ventilation or CPR. Nursing plays a vital role in deciding whether or not to
hydrate a terminally ill patient.2 Studies have shown that medical hydration does not provide
any less discomfort to the patient than dehydration does.
At this point in time, the issue comes down to the patient's and family's personal beliefs and
wishes. Nurses fulfill the role of the patient advocate by being knowledgeable with regard to
hydration research. They need to be able to adequately inform the patient about benefits
and burdens of therapy and promote discussion.2
Ethical Issues

Care of a dying patient is riddled with ethical concerns. This is probably due to the intense
emotions that death brings about as well as the widely varied opinions and values that
people have. Pain management and the right to information both require much
consideration in regard to the patient's serenity.
The important part for nurses to remember is that they need to separate their own ethical
standards from those of the patient's.
Pain Management
Pain management is an important but difficult intervention for a nurse to administer. Nurses
in the critical care setting are torn between preserving life and providing comfort care. 3 This
comfort care can sometimes hasten death even when that is not the intention. This draws a
fine line between euthanasia and pain relief that is difficult to establish. Many nurses have a
difficult time dealing with the mixed roles of caring for dying patients and tend to treat them
as patients who will eventually get better.
Pain management interventions may place a nurse's career at risk as well. 3 Many patients
die with unnecessary suffering because of this risk. To provide some clarification to nurses
on what is acceptable in terms of pain management, the American Nurses Association put
out this statement in 1996:
"The American Nurses Association believes that the promotion of comfort and aggressive
efforts to relieve pain and other symptoms in dying patients are obligations of the nurse,
Nurses should not hesitate to use full and effective doses of pain medication for the proper
management of pain in the dying patient. The increasing titration of medication to achieve
adequate symptom control, even at the expense of life, thus hastening death secondarily, is
ethically justified."
Even with this statement, it is still difficult for people to distinguish the ethically correct
approach that a critical care nurse should take.
The Patient's Right to Information
One ethical issue that nurses face with the dying patients is how much information should
be given to them. Some health professionals feel that complete information is not always
helpful to the patient's serenity. Some healthcare professionals feel that if the patient was
not mentally competent or not prepared to cope with such information that it is not useful to
inform them of a terminal illness. Many patients did feel though, that complete honesty was
much more helpful. They also feel that this communication was conducive to the patientprofessional relationship.4
Lessons Learned

After reviewing these articles, several themes emerge. One important issue is the need for
increased training concerning physical interventions of the dying. Communication skills also
need to be addressed so that nurses can better communicate with family and
patients.5 Establishing support groups for nurses who work with dying patients is another
good tool to prevent burnout.
Another theme that is apparent is the need for the nurse to be a true patient advocate. In
the terminal stages of life, patients cannot always communicate their wishes effectively. It is
the role of the nurse to assess the patient and learn what is important to that patient. The
nurse also needs to be willing to stand up to other members of the healthcare team to make
sure that those wishes are honored.
The third key theme is the importance of education. Nurses need to be up to date and wellinformed on laws, interventions, and medical information. Therapies, practices, and legal
standards are constantly evolving. Nurses need to understand the new information so that
they can give the most current options to patients and their families. Addressing these
themes will enable the nurse to be more prepared for this intense role.

References

1.

Lindley-Davis, B. (1991). Process of Dying: Defining characteristics. Cancer Nursing,

14, 328-333.

2.

Jackonen, S. (1997). Dehydration and hydration in the terminally ill: Care

considerations. Nursing Forum, 32(3), 5-13.

3.

LaDuke, S. D. (1998). Pain management at the end of life: A critical care

perspective. Journal of the New York State Nurses Association, 29(2), 9-12. Retrieved April
2, 2002, from the EBSCOhost database.

4.

Osuna, E., Perez-Carceles, M. D., Esteban, M. A., & Luna, A. (1998). The right to
information for the terminally ill patient.Journal of Medical Ethics, 24(2), 106-110. Retrieved
April 2, 2002, from the EBSCOhost database.

5.

Plante, A., & Bouchard, L. (1995-1996). Occupational stress, burnout, and

professional support in nurses working with dying patients. Omega, 32, 93-109.
Kati Richards is a student nurse at The University of Maine.

Everyone facing life-threatening illness will need some degree of supportive care in addition
to treatment for their condition. The National Institute for Clinical Excellence (NICE) has
defined supportive care for people with cancer. With some modification the definition can be
used for people with any life-threatening condition.
Supportive Care Defined
Supportive care helps the patient and their family to cope with their condition and treatment
of it from pre-diagnosis, through the process of diagnosis and treatment, to cure,
continuing illness or death and into bereavement. It helps the patient to maximise the
benefits of treatment and to live as well as possible with the effects of the disease. It is given
equal priority alongside diagnosis and treatment.
Supportive care should be fully integrated with diagnosis and treatment. It encompasses:

Self help and support

User involvement

Information giving

Psychological support

Symptom control

Social support

Rehabilitation

Complementary therapies

Spiritual support

End of life and bereavement care

Palliative Care Defined

Palliative care is part of supportive care. It embraces many elements of supportive care. It
has been defined by NICE as follows:
Palliative care is the active holistic care of patients with advanced progressive illness.
Management of pain and other symptoms and provision of psychological, social and
spiritual support is paramount. The goal of palliative care is achievement of the best quality
of life for patients and their families. Many aspects of palliative care are also applicable
earlier in the course of the illness in conjunction with other treatments.
Palliative care aims to:

Affirm life and regard dying as a normal process

Provide relief from pain and other distressing symptoms

Integrate the psychological and spiritual aspects of patient care

Offer a support system to help patients live as actively as possible until death

Offer a support system to help the family cope during the patients illness and in their
own bereavement

Who Provides Palliative Care?

Palliative care is provided by two distinct categories of health and social care professionals:

Those providing the day-to-day care to patients and carers in their homes and in
hospitals

Those who specialise in palliative care (consultants in palliative medicine and clinical
nurse specialists in palliative care, for example)
Those providing day-to-day care should be able to:

Assess the care needs of each patient and their families across the domains of
physical, psychological, social spiritual and information needs

Meet those needs within the limits of their knowledge, skills, competence in palliative

care

Know when to seek advice from or refer to specialist palliative care services

Specialist Palliative Care Services

These services are provided by specialist multidisciplinary palliative care teams and include:

Assessment, advice and care for patients and families in all care settings, including
hospitals and care homes.

Specialist in-patient facilities (in hospices or hospitals) for patients who benefit from
the continuous support and care of specialist palliative care teams

Intensive co-ordinated home support for patients with complex needs who wish to
stay at home.

This may involve the specialist palliative care service providing specialist advice
alongside the patients own doctor and district nurse to enable someone to stay in their own
home.

Many teams also now provide extended specialist palliative nursing, medical,
social and emotional support and care in the patients home, often known as hospice at
home.

Day care facilities that offer a range of opportunities for assessment and
review of patients needs and enable the provision of physical, psychological and social
interventions within a context of social interaction, support and friendship. Many also offer
creative and complementary therapies.

Advice and support to all the people involved in a patients care.

Bereavement support services which provide support for the people involved in a
patients care following the patients death.
Education and training in palliative care.
The specialist teams should include palliative medicine consultants and palliative care nurse
specialists together with a range of expertise provided by physiotherapists, occupational

therapists, dieticians, pharmacists, social workers and those able to give spiritual and
psychological support.

Current Provision of Specialist Palliative Care Services

As at January 2006, in England, Wales and Northern Ireland there were:

193 specialist in-patient units providing 2,774 beds, of which 20% were NHS beds.

295 home care services at present this figure will include both primarily advisory
services delivered by hospice or NHS based community palliative care teams and other
more sustained care provided in the patients home.

314 hospital based services.

234 day care services.

314 bereavement support services.

References:
1 Standards For Hospice and Palliative
Care Provision, 1994 Australian Associat
ion for Hospic an
d Palliative Care,
Melbourne
2 Kasap D, 1996 Report to the Palliative Care Program Review
Stage 2, Public Affairs, Parliamentary and Access ranch,
Commonwealth Department oof Health and Fa
mily Services publication No. 1833 Canberra.