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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 Epidemiology of cancer and HIV/AIDS
million people, Indonesia is one of Cancer is the seventh highest cause of death
the top five most populous in Indonesia,4 with a prevalence of 4.3 per
countries in the world. The country, an 1,000 inhabitants.5 The Indonesian Ministry
archipelago of 17,508 islands, covers a wide of Health estimates that there are
geographic area. It has a mixed ethnicity approximately 240,000 new cases of cancer
(there are over 200 ethnic groups), various per year.1 The mortality rates associated with
religious groups and a heterogeneous society cervical cancer, breast cancer, lymph cancer,
and culture. All these factors influence the skin cancer and colorectal cancer are high.6
provision of palliative care services, and Cancer prevalence is higher in women, due to
explain the current lack thereof. the high occurence of breast and cervical
Furthermore, the attitudes of healthcare cancer. In men, lung cancer and colorectal
professionals towards palliative care, a low cancer are the most prevalent.6 Most patients
public awareness of palliative care and are already at an advanced stage of disease
patients’ general desire for curative treatment when they are referred to hospital, making
at all costs are all barriers to the development cancer one of the major health issues in the
of palliative care.1 country.7 This has also led to cancer being
On the other hand, Indonesian families are seen as a mostly incurable disease requiring
highly involved in addressing most patient complex interventions.8
issues,2 which fits in well with palliative care, The AIDS epidemic in Indonesia has one of
where the role of families in patient care is the fastest rates of growth in Asian countries.
essential.3 Indonesian families provide direct Cases of HIV infection have been reported in
Key care to patients at home and in hospital, and more than 200 districts out of 450 and in all
act as decision-makers on behalf of patients. 33 provinces. In 2008, about 227,700 people
points
were living with both HIV and AIDS.9 In 2010,
■ In Indonesia, palliative care is in its infancy, but one feature of the estimated prevalence of HIV was 0.27%
Indonesian society is favourable to palliative care development: among people aged 15–49 years.10 Many
families are traditionally highly involved in patient care. HIV/AIDS patients have acute health
problems but do not receive appropriate care.
■ Palliative care was first introduced in the Indonesian healthcare In most cases, they are cared for at home by
system in 1989 as part of the national cancer control programme, relatives who do not have sufficient
but palliative care services are still only available in certain areas. knowledge and skills to provide the level of
However, a legal framework exists to foster their develoment. care required.11
■ A few centres, notably in the towns of Surabaya and Jakarta on the
main island of Java, provide palliative care services, mostly to
Legal and organisational framework
cancer patients. In Jakarta, the Rachel House Foundation offers The healthcare system in Indonesia is shaped
support to children with cancer or HIV/AIDS and their families. by both traditional and modern influences. In
some rural areas, patients still depend on
■ Indonesia needs to create more services, develop palliative care traditional healers as a result of limited access
education, introduce the use of quality indicators and increase to, and high costs of, medical care, and also
public awareness. There also is a need to seek a model of delivery because of cultural beliefs and distrust in
that takes into consideration the country’s specific cultural traits. modern healthcare services.12 These people
will only go to hospital when traditional or

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

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

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

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PPPBN provides palliative care services for management, spiritual care and psychosocial
cancer patients and their families through a support. Care is provided at home, so family
multidisciplinary team. Services offered members are closely involved. Rachel House
include an outpatient clinic for treating pain also plays an important role, ensuring care co-
and other symptoms, respite care and home ordination between the different healthcare
care.8 A hotline run by volunteers and social services involved.19
workers is also available.8 A legal contract is established between
Through the PPPBN, cancer patients who patients, families and the palliative care team
have been discharged from Dr Soetomo to set goals of care. An informal caregiver
Hospital will be visited at home by doctors named as the main family representative has
and nurses. The home care to sign this document, which is then legalised
More and better services programme also involves by an official seal; this means it is recognised
are needed to carry volunteers from the and valid in local government law. The
an efficient palliative community, mostly women, contract benefits both patients/families and
who have been trained to care providers, as it sets realistic goals of care
care programme
provide basic care, facilitate and provides legal protection for the palliative
communication between patients and care team. This procedure was established to
families, and support families during the compensate for the absence of palliative care
bereavement period. The volunteers also practice regulations in Indonesia.
monitor patients’ symptoms and report cases
back to the PPPBN when further interventions Conclusion
are needed. This overview has shown that some palliative
The PPPBN can also refer patients to the care provision is already in place in Indonesia.
community health centres, and primary care Yet there is much to do. More efforts and
professionals working in these centres can resources need to be directed towards creating
refer patients to the PPPBN. Thanks to this more palliative care services and increasing
system, there has been considerable progress the quality of care provided. More and better
in terms of the number of cancer cases services are needed to carry an efficient
detected at an earlier stage, as well as in the palliative care programme that reaches
number of patients receiving palliative care.8 increasing numbers of patients in need of
palliative care, including terminal care.20
Jakarta Palliative care development relies on better
The Dharmais Cancer Centre hospital is government policies, better palliative care
located in Jakarta, the capital of Indonesia. education and better social conditions.1
Following the success of the PPPBN in Palliative care modules in medical and nursing
Surabaya, it started offering supportive care to curricula, training for healthcare
adult cancer patients in 1998. A palliative care professionals, research and increasing public
clinic, inpatient unit and home care service awareness can all contribute to improve both
were created.17 the quantity and quality of palliative care in
For the provision of paediatric palliative Indonesia. There is also an urgent need to seek
care, the Dharmais Cancer Centre works the most appropriate model of palliative care
closely with the Rachel House Foundation.10 delivery, a model that takes into consideration
Rachel House, a children’s hospice founded in the specific cultural traits of the country.
2006, is considered a pioneer in community- Beside the dissemination of palliative care
based palliative care. It provides free home and training of healthcare professionals, it is
care and support to children with cancer or also crucial to start using quality indicators to
HIV/AIDS and their families in four areas of evaluate services.21 There are no national
Jakarta. It has started to integrate with existing standard operating procedures (SOPs), so each
healthcare providers, such as the Dharmais institution provides palliative care based on
Cancer Centre, instituting a referral system their own standards. However, quality
that enables doctors and nurses in public indicators have recently been researched,21 and
hospitals to refer patients to Rachel House.19 these could be used to develop SOPs for
Paediatric patients, in particular those from palliative care in hospitals in Indonesia.
lower-income families, are thus able to receive
Declaration of interest
holistic care, including pain relief, symptom The authors have no conflicts of interest.

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

Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk
www.ejpc.eu.com
In the next issue …
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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
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Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk