Rachel House Pediatric Palliative Care
Country of Operation
- Yayasan Rumah Rachel (Rachel House)Not-for-profit
SummaryRachel House (“RH”) is a non-profit organization that provides palliative care for children from poor families between the ages of 0-18 years old with terminal illnesses such as cancer and HIV/AIDS. With their vision of “never seeing a child die alone without love and care,” RH is the first pediatric palliative care organization in Indonesia.
Key program components
Rachel House is the first pediatric palliative care service in Indonesia, providing pain and symptom management for children in the final stages of their illness, free of charge. Without the service, many children from poor families spend their last days in horrific pain without medical assistance. Being the first pediatric palliative care service in Indonesia where palliative care is not taught in medical schools, the pioneering team of nurses were trained by palliative care professionals from the Asia Pacific regional countries such as Singapore, Australia and New Zealand. From the training, the team understands intimately the regression of each of the line of childhood cancer as well as HIV, and the medication needed at each stage of the illness. This allows the nurses to be well prepared with the necessary medication to alleviate the symptoms when visiting patients' homes; and to prepare the parents/caregivers of the journey ahead so as to lessen the shock when the symptoms appear. Preparing the caregivers adequately will mean a much more peaceful time for the family and ultimately for the child. Improving the quality of life for the child and the family is the main objective of the service. Rachel House’s slogan is "We are not here to add days to the children's lives, but to add life to their remaining days". Rachel House’s nurses are trained to conduct not only a thorough physical assessment of the patient, but also to spend the time to understand the history of the child before he/she was diagnosed with the disease. The intimate understanding of the child as first, a human being, rather than a patient with his/her symptoms generates compassion, and ultimately a deep dedication to the patients. The nurses, in the dedication to serve, travel out to the homes of the patients on their motorcycles under the worst conditions – to provide care and a little dignity for the children on their most challenging journeys. Not only does the team provide each child with the best medical attention he needs, but time is also taken to build up the network of support around the patient’s home. This could be in the form of preparing the local health clinic officials, checking for the availability of medication required with the local pharmacy or checking with other NGOs for nutritional support for the child. The team also spends a large portion of their time in training the communities to help increase the awareness of and capacity for pain and symptom management. Since its establishment in late 2006, the team has provided care for over 150 children and trained over 600 medical professionals and health volunteers.
Lynna Chandra, the founder of RH, was inspired by her friend Rachel who had cancer and received palliative care toward the end of her life. With a background in finance, Lynna did not have an accurate picture of the complexity involved in establishing palliative care services. In reality, palliative care in Indonesia is incredibly new and there are very few medical workers educated in palliative care. Despite this fact, in 2008, the Singapore International Foundation stated that each year there are approximately 600 children who develop cancer in Jakarta. In all of Indonesia, this number has reached 1100 new cases of cancer patients under the age of 18 years old each year (SIF, 2008). This condition is made worse because of the high prevalence of children with HIV/AIDS, although there is not an exact estimate of the number of children suffering from HIV/AIDS. This data emphasizes the importance of palliative care services for children.