Rachel House provides nurse-led, home-based palliative care for children living with serious and terminal cancer or HIV, free of charge. Without this service, many children from poor families would spend their last days in horrific pain without medical assistance. Since founding, Rachel House has cared for more than 800 children and their families, and provided training for over 8700 medical professionals and community volunteers, with the vision that no child should ever have to die in pain.
Many children from poor families spend their last days in horrific pain. Often, the family would have spent all their savings on finding a cure for the sick child; and when curative treatment is no longer viable, the child would be taken home with little or no pain medication for symptom management. Palliative care in Indonesia is at its infancy. Medical professionals are still focussing on a cure while sacrificing symptom management. Pain is to be tolerated, especially so for the poor.
Rachel House provides not only home-based palliative care service for patients and their families, but also palliative care training for medical professionals throughout the health system (12 public hospitals and primary health clinics in Jakarta) and community volunteers. As part of its effort to develop a world-class palliative care ecosystem in Indonesia, Rachel House also provides palliative care training for nurses in collaboration with major universities.
Having established the home-based palliative care service as a model, and the broad-based palliative care training available throughout the health system, Rachel House's efforts in mobilising the participation of community volunteers will help bring us closer to making palliative care available and accessible by all children in need in Indonesia.