Nat i o n a l v i ew p o i n t
c o m
The nascent palliative care
landscape of Indonesia
Christantie Effendy, Hana Rizmadewi Agustina, Martina Sinta Kristanti and Yvonne
Engels give us an overview of palliative care provision in the island nation of Indonesia,
where support is available, mostly for cancer patients, in some of the main cities
W
ith a population of around 240
million people, Indonesia is one of
the top five most populous
countries in the world. The country, an
archipelago of 17,508 islands, covers a wide
geographic area. It has a mixed ethnicity
(there are over 200 ethnic groups), various
religious groups and a heterogeneous society
and culture. All these factors influence the
provision of palliative care services, and
explain the current lack thereof.
Furthermore, the attitudes of healthcare
professionals towards palliative care, a low
public awareness of palliative care and
patients’ general desire for curative treatment
at all costs are all barriers to the development
of palliative care.1
On the other hand, Indonesian families are
highly involved in addressing most patient
issues,2 which fits in well with palliative care,
where the role of families in patient care is
essential.3 Indonesian families provide direct
Key care to patients at home and in hospital, and
act as decision-makers on behalf of patients.
points
■ In Indonesia, palliative care is in its infancy, but one feature of
Indonesian society is favourable to palliative care development:
families are traditionally highly involved in patient care.
■ Palliative care was first introduced in the Indonesian healthcare
system in 1989 as part of the national cancer control programme,
but palliative care services are still only available in certain areas.
However, a legal framework exists to foster their develoment.
■ A few centres, notably in the towns of Surabaya and Jakarta on the
main island of Java, provide palliative care services, mostly to
cancer patients. In Jakarta, the Rachel House Foundation offers
support to children with cancer or HIV/AIDS and their families.
■ Indonesia needs to create more services, develop palliative care
education, introduce the use of quality indicators and increase
public awareness. There also is a need to seek a model of delivery
that takes into consideration the country’s specific cultural traits.
98
Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk
www.ej p c . e u .
Epidemiology of cancer and HIV/AIDS
Cancer is the seventh highest cause of death
in Indonesia,4 with a prevalence of 4.3 per
1,000 inhabitants.5 The Indonesian Ministry
of Health estimates that there are
approximately 240,000 new cases of cancer
per year.1 The mortality rates associated with
cervical cancer, breast cancer, lymph cancer,
skin cancer and colorectal cancer are high.6
Cancer prevalence is higher in women, due to
the high occurence of breast and cervical
cancer. In men, lung cancer and colorectal
cancer are the most prevalent.6 Most patients
are already at an advanced stage of disease
when they are referred to hospital, making
cancer one of the major health issues in the
country.7 This has also led to cancer being
seen as a mostly incurable disease requiring
complex interventions.8
The AIDS epidemic in Indonesia has one of
the fastest rates of growth in Asian countries.
Cases of HIV infection have been reported in
more than 200 districts out of 450 and in all
33 provinces. In 2008, about 227,700 people
were living with both HIV and AIDS.9 In 2010,
the estimated prevalence of HIV was 0.27%
among people aged 15–49 years.10 Many
HIV/AIDS patients have acute health
problems but do not receive appropriate care.
In most cases, they are cared for at home by
relatives who do not have sufficient
knowledge and skills to provide the level of
care required.11
Legal and organisational framework
The healthcare system in Indonesia is shaped
by both traditional and modern influences. In
some rural areas, patients still depend on
traditional healers as a result of limited access
to, and high costs of, medical care, and also
because of cultural beliefs and distrust in
modern healthcare services.12 These people
will only go to hospital when traditional or
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(2)
www.ejpc.eu.com National viewpoint

alternative therapies have failed. Even in

urban areas, people still use traditional and
alternative therapies.13
Indonesia has localised, hospice-type
palliative care provision.14 Palliative care was
first introduced in the healthcare system in
1989 as part of the national cancer control
programme. This led to the creation of four
working groups, one of which focused on pain
management for cancer patients and palliative
care. As a result, palliative care service
provision started in 1992.15
The government’s focus on palliative care
increased in 2007, when the Ministry of Health
issued a regulation specific to palliative care
that stated that services should be put in place
in five main cities, Surabaya, Jakarta,
Yogyakarta, Denpasar and Makassar.16 Local
authorities play an important role in the
development of palliative care.1 Palliative care
in Indonesia has also been supported by
regional organisations such as the Asia Pacific
Hospice Palliative Care Network.1
The Indonesian Palliative Society
(Masyarakat Palliatif Indonesia, or MPI) was
established as a non-profit organisation in

DANITA DELIMONT/GETTY IMAGES

1999.17 MPI members are people involved in
the provision of palliative care, including
physicians, nurses, pharmacists, psychologists,
social workers, religious personnel and
volunteers.1 One priority of the MPI is to
increase awareness of palliative care among
healthcare professionals, non-governmental
organisations and in society as a whole.
Another aim is to encourage the government to
integrate palliative care into the national
healthcare system. Since the launch of
universal health coverage in January 2014,
most cancer treatments are now covered by
public health insurance, and the MPI has asked
the government to allocate funds to cancer
prevention and palliative care provision. It has
also provided suggestions to help run the
cancer control programme more effectively.1
National palliative care guidelines have been
produced by the MPI in 2014,1 and palliative
care features in the national cancer control
programme 2014–2019.
Current service provision
Palliative care services in Indonesia are still in
their infancy. Referral systems between
hospitals and primary care centres are not yet
well developed. This hampers continuity of
care between settings and healthcare
■ Floral decoration providers. Cancer patients die in hospital
on a Hindu temple without receiving palliative care,1,8 or at home
door on the island of with insufficient support from palliative care
Bali. Indonesia, an
archipelago of 17,508 professionals. Many receive curative treatment
islands, has a mixed even though they have a terminal illness and
ethnicity, various are approaching the end of life. Patients thus
religious groups and
suffer unnecessarily due to a high burden of
a heterogeneous
culture symptoms and unmet needs.1,18
In most areas, palliative care does not exist
at all. Currently, it is only available in seven
cities on the three major islands, where most
cancer facilities are located: Surabaya, Jakarta,
Yogyakarta, Bandung and Semarang (on the
island of Java), Denpasar (on the island of Bali)
and Makassar (on the island of Sulawesi).
As an example of palliative care delivery in
Indonesia, we will now discuss current service
provision in Surabaya and Jakarta.
Surabaya
In Surabaya, the Pusat Pengembangan Paliatif
dan Bebas Nyeri (PPPBN), a centre for
palliative care and pain relief based at
Dr Soetomo Hospital, was established in 1992.
It has been acknowledged as a pioneer among
palliative care services in Indonesia. The

EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(2) 99

Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk
Nat i o n a l v i ew p o i n t
PPPBN provides palliative care services for
cancer patients and their families through a
multidisciplinary team. Services offered
include an outpatient clinic for treating pain
and other symptoms, respite care and home
care.8 A hotline run by volunteers and social
workers is also available.8
Through the PPPBN, cancer patients who
have been discharged from Dr Soetomo
Hospital will be visited at home by doctors
and nurses. The home care
More and better services programme also involves
are needed to carry volunteers from the
an efficient palliative community, mostly women,
who have been trained to
care programme
provide basic care, facilitate
communication between patients and
families, and support families during the
bereavement period. The volunteers also
monitor patients’ symptoms and report cases
back to the PPPBN when further interventions
are needed.
The PPPBN can also refer patients to the
community health centres, and primary care
professionals working in these centres can
refer patients to the PPPBN. Thanks to this
system, there has been considerable progress
in terms of the number of cancer cases
detected at an earlier stage, as well as in the
number of patients receiving palliative care.8
Jakarta
The Dharmais Cancer Centre hospital is
located in Jakarta, the capital of Indonesia.
Following the success of the PPPBN in
Surabaya, it started offering supportive care to
adult cancer patients in 1998. A palliative care
clinic, inpatient unit and home care service
were created.17
For the provision of paediatric palliative
care, the Dharmais Cancer Centre works
closely with the Rachel House Foundation.10
Rachel House, a children’s hospice founded in
2006, is considered a pioneer in community-
based palliative care. It provides free home
care and support to children with cancer or
HIV/AIDS and their families in four areas of
Jakarta. It has started to integrate with existing
healthcare providers, such as the Dharmais
Cancer Centre, instituting a referral system
that enables doctors and nurses in public
hospitals to refer patients to Rachel House.19
Paediatric patients, in particular those from
lower-income families, are thus able to receive
holistic care, including pain relief, symptom
100
Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk
www.ej p c . e u . c o m
management, spiritual care and psychosocial
support. Care is provided at home, so family
members are closely involved. Rachel House
also plays an important role, ensuring care co-
ordination between the different healthcare
services involved.19
A legal contract is established between
patients, families and the palliative care team
to set goals of care. An informal caregiver
named as the main family representative has
to sign this document, which is then legalised
by an official seal; this means it is recognised
and valid in local government law. The
contract benefits both patients/families and
care providers, as it sets realistic goals of care
and provides legal protection for the palliative
care team. This procedure was established to
compensate for the absence of palliative care
practice regulations in Indonesia.
Conclusion
This overview has shown that some palliative
care provision is already in place in Indonesia.
Yet there is much to do. More efforts and
resources need to be directed towards creating
more palliative care services and increasing
the quality of care provided. More and better
services are needed to carry an efficient
palliative care programme that reaches
increasing numbers of patients in need of
palliative care, including terminal care.20
Palliative care development relies on better
government policies, better palliative care
education and better social conditions.1
Palliative care modules in medical and nursing
curricula, training for healthcare
professionals, research and increasing public
awareness can all contribute to improve both
the quantity and quality of palliative care in
Indonesia. There is also an urgent need to seek
the most appropriate model of palliative care
delivery, a model that takes into consideration
the specific cultural traits of the country.
Beside the dissemination of palliative care
and training of healthcare professionals, it is
also crucial to start using quality indicators to
evaluate services.21 There are no national
standard operating procedures (SOPs), so each
institution provides palliative care based on
their own standards. However, quality
indicators have recently been researched,21 and
these could be used to develop SOPs for
palliative care in hospitals in Indonesia.
Declaration of interest
The authors have no conflicts of interest.
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(2)
www.ejpc.eu.com
In the next issue …
References ■ The 14th World Congress
1. Witjaksono MA, Sutandiyo N, Suardi D for the Indonesian Palliative Society.
Regional support for palliative care in Indonesia. ehospice, 1 August 2014. of the European Association for
www.ehospice.com/Default/tabid/10686/ArticleId/11661/ (last accessed Palliative Care takes place in
30/01/2015)
2. Effendy C, Vissers K, Tejawinata S, Vernooij-Dassen M, Engels Y. Dealing with Copenhagen in May 2015. The
symptoms and issues of hospitalized patients with cancer in Indonesia: the
role of families, nurses, and physicians. Pain Pract 2014 [Epub ahead of print].
‘European insight’ section will
3. Witjaksono M. Palliative care: an interdisciplinary approach for patient thus focus on Denmark, with an
with life threatening illness. Indonesian Journal of Cancer 2007; 1: 27–29.
4. National Institute of Health Research and Development, Ministry of
article from Bodil Abild
Health, Republic of Indonesia. Laporan Nasional Riset Kesehatan Dasar 2007 Jespersen, Tove Vejlgaard and
(National Report of Basic Health Survey 2007), 2008.
5. Gondhowiardjo R. Penderita kanker di Indonesia meningkat [The increase Per Sjoegren outlining the
of cancer patients in Indonesia]. Kompas, 21 March 2013. history, current state and future of
6. Ministry of Health, Republic of Indonesia. Riset Kesehatan Dasar (Basic
Health Research), 2013. palliative care in their country.
7. Iskandarsyah A, de Klerk C, Suardi DR et al. Psychosocial and cultural
reasons for delay in seeking help and nonadherence to treatment in
Indonesian women with breast cancer: a qualitative study. Health Psychol ■ How do you recognise pain
2014; 33: 214–221. or distress in people with
8. Sunaryadi Tejawinata R. Surabaya Kota Paliatif. Citra Dan Pesonanya
[Surabaya, palliative city],1st edn. Surabaya: Pusat Penerbitan dan dementia who cannot express
Percetakan Unair, 2012: 203. themselves verbally? Claud
9. National AIDS Commission Republic of Indonesia. Republic of Indonesia
Country Report on the Follow up to the Declaration of Commitment on Regnard, Ladislav Volicer,
HIV/AIDS (UNGASS) – Reporting Period 2008–2009.
www.unaids.org/sites/default/files/en/dataanalysis/knowyourresponse/cou
Nele J A Van Den Noortgate, Bexley Community Hospice,
ntryprogressreports/2010countries/indonesia_2010_country_progress_rep Elizabeth L Sampson and where volunteers were recruited
ort_en.pdf (last accessed 03/01/2015)
10. Indonesian National AIDS Commision. Republic of Indonesia Country
Jenny van der Steen have and trained to help people with
Report on the Follow up to the Declaration of Commitment on HIV/AIDS critically appraised two life-limiting disease to develop an
(UNGASS) – Reporting Period 2010–2011.
www.unaids.org/sites/default/files/en/dataanalysis/knowyourresponse/cou
assessment tools: the pain tool advance care plan.
ntryprogressreports/2012countries/ce_ID_Narrative_Report.pdf (last PAINAD and the distress
accessed 03/01/2015)
11. Ibrahim K, Haroen H, Pinxten L. Home-based care: a need assessment of documentation tool DisDAT. ■ In 2013, a pilot programme aimed
people living with HIV infection in Bandung, Indonesia. J Assoc Nurses AIDS
Care 2011; 22: 229–237.
at helping patients with chronic
12. Assan JK, Assan SK, Assan N, Smith L. Health inequality in resource poor ■ In 2013, the Palliative and lung disease to access palliative
environments and the pursuit of the MDGs: traditional versus modern end of life care Priority Setting care was tested by Keech Hospice
healthcare in rural Indonesia. J Health Manag 2009; 11: 93–108.
13. Budijanto D, Roosihermiatie B. Persepsi sehat-sakit dan pola pencarian Partnership (PeolcPSP) was Care. Lisa Hayes shows how it
pengobatan masyarakat daerah pelabuhan [The perception of illness and launched to consult patients,
health-seeking behaviour in port communities]. Buletin Penelitian Sistem has allowed the hospice to
Kesehatan 2006; 9: 93–99. carers and clinicians on the most overcome some of the barriers
14. Wright M, Wood J, Lynch T, Clark D. Mapping levels of palliative care important unanswered questions
development: a global view. J Pain Symptom Manage 2008; 35: 469–485. that prevent such patients from
15. Soebadi RD, Tejawinata S. Indonesia: status of cancer pain and palliative that research should address. The receiving adequate palliative care.
care. J Pain Symptom Manage 1996; 12: 112–115. PeolcPSP has now established
16. Ministry of Health, Republic of Indonesia. Regulation No
812/Menkes/SK/VII/2007 on Palliative Care, 2007. a list of ten top priorities, as ■ In the ‘case study masterclass’,
17. Indonesian Palliative Society. Palliative Care in Indonesia. 2011.
18. Effendy C, Vissers K, Osse BH et al. Comparison of problems and unmet
Rhiannon Smith, Sabine Best Katherine Bevan addresses the
needs of patients with advanced cancer in a European country and an Asian and Bill Noble explain. issues arising in the management
country. Pain Pract 2014 [Epub ahead of print].
19. Nurhanita S. Potensi Pengembangan Pendidikan Keperawatan Paliatif Bagi of a patient with ‘total pain’.
Siswa Dan Praktisi Keperawatan Di Indonesia [The potential for developing ■ How well do hospitals manage
nursing education in palliative care for nursing students and clinical nurses
in Indonesia]. Jakarta: Rachel House Indonesia, 2014. the use of strong opioids in ■ Part 2 of Julia Nightingale’s
20. Witjaksono M. [Integration of palliative care into comprehensice cancer patients with advanced cancer? review article on end-of-life care
control in indonesia: challenges and opportunities]. Indonesian Journal of
Cancer 2008; 3: 98–103. Do they comply with the for patients with cystic fibrosis
21. Effendy C, Vissers K, Woitha K et al. Face-validation of quality indicators for standards set by the National tackles symptom control, advance
the organisation of palliative care in hospitals in Indonesia: a contribution to
quality improvement. Support Care Cancer 2014; 22: 3301–3310. Institute for Health and Care care planning and communication
Excellence? Andrew Dickman issues, and suggests models of
and Samiah Awan have palliative care in cystic fibrosis.
surveyed practice in the medical
Christantie Effendy, Lecturer in Medical Surgical
and surgical wards of Blackpool ■ Laura-Jayne Wilcock was
Nursing, School of Nursing, Medical Faculty,
Victoria Hospital. born without some of her fingers
Universitas Gadjah Mada, Yogyakarta, Indonesia
and toes due to amniotic band
and Junior Researcher, Department of IQ Healthcare, ■ Anne Morgan, Rod MacLeod, syndrome. She explains how
Radboud University Nijmegen Medical Centre, the Mary Schumacher and her dream of becoming a nurse
Netherlands; Hana Rizmadewi Agustina, Lecturer in Richard Egan describe an became reality despite the ill-
Fundamental Nursing, Faculty of Nursing, educational resource developed informed views of an occupational
Universitas Padjajaran, Bandung, Indonesia; in New Zealand for the wider health therapist, and how she
hospice team aimed at improving came to work in palliative care.
Martina Sinta Kristanti, Lecturer in Nursing
the understanding and knowledge
Management, School of Nursing, Medical Faculty, of spirituality and spiritual care. All future copy may alter at the publisher’s discretion.
Universitas Gadjah Mada, Yogyakarta, Indonesia; One of its peculiarities is that it
Yvonne Engels, Assistant Professor of Palliative incorporates the Māori world view. If you are not already a subscriber to the
Medicine, Department of Anaesthesiology, Pain and journal, why not ensure that you receive your
Palliative Medicine, Radboud University Nijmegen ■ Penny Jones, Kate Heaps, copy of the next issue by setting up your
Medical Centre, the Netherlands Carla Rattigan and Di Marks- order online? See page 56 for details
Maran report on a project
of subscription rates or go straight to our
launched by Greenwich and
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(2) website (www.ejpc.eu.com).

Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk