Rachel House – providing community palliative care

Country: Indonesia

Across Indonesia, there are 1,200 new cancer cases for patients under the age of 18, as well as a very large number of children with HIV/AIDS. This highlights the enormous need for palliative care in the area of paediatrics.

Motivated by a desire to address the lack of paediatric palliative care services, and with a vision for an Indonesia where no child will ever have to live or die in pain, Rachel House was established as Indonesia’s first paediatric palliative care service. The majority of Rachel House’s patients are from marginalised communities where their parents earn a daily income of US$ 3-5. This means that if the children are hospitalised rather than at home, the entire family will have to go without food. In response to this harsh reality, the nurses traded their uniforms for motorcycle helmets and jackets to travel the crowded streets of Jakarta to provide community-based palliative care.

The nurses have led the development of this vital service. Highly skilled and provided with training to conduct both physical and psychosocial assessments of the patients, the nurses spend time with the children and their families to understand their stories and social circumstances before and after the illness. The nurses seek to understand the child, first as a human being rather than a patient with symptoms. This has generated enormous compassion amongst the nurses and ultimately a growing dedication to those whom they serve.

A multidisciplinary team has been established to provide care for the children. The nurses, at the core of this team, work to build networks of support around the children’s homes: by rallying the support of the local community health volunteers trained by Rachel House;  connecting with and preparing the local primary care officials;  ensuring availability of required medications at the local pharmacy; and working with partner NGOs for nutritional and other social support for the child. The team also trains the communities to help increase awareness of palliative care amongst the public and health professionals and increase the capacity for pain and symptom management.

After 12 years of service, Rachel House has cared for close to 3000 children and their families. Seen as national leaders in home-based paediatric palliative care, the nurses are often invited to share their knowledge with hospital staff throughout Indonesia. In addition, Rachel House now provides international-standard palliative care education for nurses and supports hospitals keen to develop integrated palliative care services.  Rachel House is committed to building a palliative care ecosystem across Indonesia, to help ensure that pain and symptom management is available and accessible by all to prevent and relieve suffering.

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