Revisiting Palliative Care in Indonesia: How Far Are We?

Oct 24, 2017

By Diah Martina, MD

During my specialist training in internal medicine, I realized that palliative cases were one of the biggest challenges in hospitals. This fact has been particularly true among patients with cancer in Indonesia, since the majority of patients were admitted in advanced stages of disease. They were commonly left suffering after being informed that there was nothing else medicine could offer. However, I realized that this was not true: suffering could, and should, be eased even though the disease persists or progresses. Every patient should be regarded as a human being by paying respect not only to their physical needs but also the non-physical needs.

My experience led me to explore more on the topic of the fulfillment of palliative needs among patients with cancer in Indonesia. It turned out that my findings supported my hypothesis—that most of the palliative needs in patients with cancer in Indonesia were under-recognized and undertreated. Acknowledging that a high quality of palliative care is a necessary solution, dedicating myself to this field has since become my calling. Not only can palliative care improve quality of life for patients and their families, it may also reduce the burden on the hospitals due to prolonged stays and high costs.

The burden of palliative care remains high in Indonesia, even though it has been pioneered since 1992 by Sunaryadi Tedjawinata, MD, and later supported by a nonprofit organization, the Indonesian Palliative Society. The development of palliative care, including the promotion of palliative care education, has gained attention and support from regional organizations, such as the Asia Pacific Hospice Palliative Care Network (APHN), and non-governmental organizations (NGOs), such as the Indonesian Cancer Foundation and Rachel House Foundation.

Although the development of palliative care has been very slow in its first decades, Indonesia has shown considerable improvement in major aspects. Cipto Mangunkusumo Hospital in Jakarta will be the first hospital to build a 16-bed inpatient unit dedicated to palliative care, which is expected to be finished by the end of 2018. Home-based palliative care services have become more available in many regions of the country with the help of several NGOs. In addition to palliative care centers in seven cities, several other cities are currently developing palliative care units. The level of palliative care development between centers varies in terms of human resources, facilities, and types of services delivered. One unit in Surabaya, for example, has developed an outpatient clinic for symptom management, respite care, home care, and a 24-hour hotline service, while other units do not have such complete services yet.

This improvement is hampered by several barriers, such as the lack of government commitment and support for palliative care development. Even though the national palliative care regulation was launched in 2007, it has taken 9 years to finish the national guidelines for palliative care in patients with cancer. Moreover, oral opioids have not been clearly regulated and remain unavailable in many health care facilities, in addition to the lack of sufficient funding to ensure access to these medications.

Regarding education, the major challenge to develop palliative care is the absence of standardized palliative care curricula in medical education. Currently, only a few physicians are certified in palliative care, and most of them are concentrated in big cities like Surabaya and Jakarta. To solve these problems, the Faculty of Medicine Universitas Airlangga in Surabaya is currently working to establish a specialist program of palliative medicine to produce more palliative care experts.

The delivery of palliative care in Indonesia is unique due to our country’s demographic and geographic features. The very vast and heterogeneous population distributed across 17,000 islands is a true challenge. Cultural values set the boundaries on standard norms in society, such as the reliance on traditional healers in most of the rural areas. Religion and spiritual beliefs have shaped patient attitudes and behaviors towards health issues. Discussing death and dying are considered as taboos. Cultural norms, beliefs, and low awareness of palliative care cause many people to seek curative treatment at any cost.

These conditions become even more complicated by the paternalistic pattern of doctor-patient communication in Indonesian culture, where patients tend to act passively and consider themselves to be inferior to the doctor. Coupled with the common practice of collusion between physicians and families, the majority of bad news is not told to the patients. The value of autonomy in this society is different compared to that of western countries. Being culturally sensitive to all of these norms is of great importance for doctors practicing palliative care.

After observing all of these features in Indonesia, I found that Conquer Cancer Foundation of ASCO International Development and Education Award in Palliative Care (IDEA-PC) program was very insightful for me. I had the opportunity to visit Dana-Farber Cancer Institute (DFCI), which has a well-established model of a palliative care unit, and learn how palliative care is being delivered. I was matched with my mentor Janet Abrahm, MD, PhD, FASCO, FAAHPM, one of the pioneers of the palliative care unit at DFCI. I attained valuable lessons from important components of the palliative care team. I also learned much about how to run a palliative care service and build a sustainable team in a tertiary hospital. These are of paramount importance, given the various levels of palliative care practices and development throughout different regions in Indonesia. I will share the knowledge that I gained with the palliative care team in our hospital and other hospitals which are starting to develop their palliative care units.

In addition to the IDEA-PC, ASCO provides many opportunities for education and funding for the development of cancer care in developing countries. A 2017 International Palliative Care Workshop (IPCW) was held in Jakarta, and attended by 116 physicians and nurses. Following this workshop, several units are starting to develop palliative care services in their hospitals, including Muhammad Husein Hospital in Palembang and Muhammad Djamil Hospital in Padang. Their development will be organized by the Psychosomatic Division of the Internal Medicine Department within the hospitals.

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