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ICPCN and Rachel House: developing children’s palliative care in Indonesia together

Author: Annelies Mertens
05 October 2016

Prof. Julia Downing, Director of Education & Research with the International Children’s Palliative Care Network (ICPCN), recently visited Rachel House, an NGO pioneering children’s palliative care in Indonesia, to explore ways of intensifying collaboration so palliative care, still in its infancy in the country, keeps developing and becomes accessible for all children who need it.

The challenge in Indonesia

Despite increasing rates of childhood cancer and HIV in Indonesia – an estimated 11,000 new cases of childhood cancer per year – paediatric palliative care remains undeveloped. Few health care professionals are able to provide this type of care – it simply does not make part of the curriculum.  Medicines to relieve pain and manage symptoms are available, but inaccessible for young patients who are not a priority in the under-resourced Indonesian health system. Opiophobia – unwarranted concerns about the prescription or use of needed pain medication – reigns supreme in the country. And all too often a child’s illness condemns a family to poverty. Long stays in hospitals far away from home, travel for treatment, parents losing their jobs due to time away and extra food, transport and accommodation costs, can leave a family financially devastated. As a result, many children are simply left to live and die in pain.

Rachel House – Because no child should ever have to live or die in pain.

Rachel House, set up in 2006, is the first paediatric palliative home care service in Indonesia, helping kids who are living with life-limiting conditions such as cancer and HIV. On the eve of its 10th anniversary, Rachel House’s six nurses have improved the quality of life of 2284 young patients and their families through home-based palliative care. Rachel House has also trained 1712 Indonesian nurses, doctors and other health care professionals in palliative care, and built a network of 2098 community volunteers who are able to support patients and their families on their palliative care journey. This work, together with Rachel House’s awareness raising and advocacy efforts, has transformed palliative care in Indonesia from “no one’s business” to “everyone’s business”.

The next step – putting research on the agenda in Indonesia with the support of ICPCN

Despite these successes, the Rachel House team would be the first ones to admit that their work is far from done. They’ve vouched not to rest until a sustainable palliative care ecosystem, in which everyone can access palliative care at any level of the healthcare system, is a reality in Indonesia.

So it was with great delight, that the team this week hosted Prof. Julia Downing from ICPCN. While it was an opportunity for Rachel House to show Prof. Downing their work in children’s palliative care in the Indonesian context and talk about the challenges, one of the aims of the visit was to put research into palliative care on the agenda in Indonesia.

Rachel House, with 10 years of experience in palliative care, is keen to start building a body of evidence supporting the call to further develop the needed palliative care system in Indonesia.  Together with Prof. Downing, Rachel House organized and hosted Indonesia’s very first round-table discussion about the possibility of carrying out evidence-based research supporting the need for palliative care in Indonesia. At the round-table discussion, representatives from the Faculties of Nursing from Universitas Indonesia, Universitas Padjadjaran, Universitas Muhammadiyah Yogyakarta and Universitas Esa Unggul, together with Rachel House and Prof. Downing explored the next steps along the journey into research. Rachel House and Prof. Downing also met with leaders from Jakarta’s Cipto Mangunkusumo National Referral Hospital and Dharmais National Cancer Hospital to explore the options.

ICPCN Online Palliative Care Training & more …

In another exciting development for palliative care in Indonesia, Prof. Downing and Rachel House met universities interested in developing online palliative care training in collaboration with ICPCN and Rachel House. The availability of an e-learning course would give palliative care in Indonesia where lecturers and teachers qualified in palliative care are scarce, an absolute boost.

Prof. Downing and Rachel House also met with paediatricians, oncologists and nurses to better understand the challenges with referring children with cancer and HIV to palliative care. This remains an issue in Indonesia’s fragmented health care system and Rachel House is keen to overcome this hurdle.

Finally, Prof. Downing led a day-long training workshop at Rachel House aimed at strengthening the organization’s Monitoring & Evaluation capacity with regards to the quality and impact of its palliative home care services, its Clinic-in-a-Box nurses training program and Community Network in Palliative Care program.

As one Rachel House team member put it, “We feel blessed to have ICPCN’s and Prof. Downing’s support, to have the opportunity to learn from her, to show her our work and talk about the challenges we experience bringing palliative care to Indonesia’s children. Most of all, we are inspired by her and her work with ICPCN trying to address the great inequality in palliative care for children. We’re so grateful for having her here.”

Read more about Rachel House’s work at http://rachel-house.org/

Follow Rachel House on

Facebook @rachelhouseindonesia

Instagram @rachelhouseindonesia

Twitter @rachelhouseindo

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