Despite a strong push by the government to expand and improve Indonesia’s healthcare system, palliative care remains undeveloped. With the focus on curative treatment, those living with life-limiting and life-threatening conditions are left with physical pain and mental stress that greatly reduce their quality of life.
Indonesia is a sprawling country made up of thousands of islands and has a population of nearly 250 million people. Its healthcare system faces many challenges including a large population, difficult geography, and lack of resources and funding to train healthcare professionals.
The health ministry reports 240,000 new cases of cancer per year – 11,000 of these are childhood cancers, with 70 per cent considered terminal at the time of diagnosis. With palliative care still in its infancy and inaccessible to most of these patients, it is up to families to provide care for those with life-limiting and life-threatening conditions. As a result, patients and their families are left to cope with immense physical, emotional, financial, and practical issues.
Rachel House was established in 2006 with a focus on home-based palliative care for children living with life-limiting conditions such as cancer and HIV/AIDS in Jakarta. Rachel House's team of nurses aims to improve patients’ quality of life through pain and symptom management, and the provision of emotional and social support for patients and their families. Priority provision is given to children from marginalised communities and is free of charge.
The organisation also offers palliative care education programmes and practical training for doctors, nurses, and allied healthcare professionals in hospitals, government institutions, and universities as well as community volunteers.
Rachel House has adopted a strategic and collaborative approach to changing perceptions, working within the public healthcare system. Drawing from the experience of specialists in the field of palliative care from Indonesia and around the world, Rachel House has provided home-based palliative care to 360 people, including 90 children, in 2015 alone. To date, Rachel House has helped 2,408 children and family members alongside training 2,821 healthcare professionals and 2,208 community members.
Photo: Jason Tan