A Community-Driven Palliative Care Solution in India

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palliative1According to the U.S. Department of Health and Human Services, the global number of people over the age of 65 is estimated to increase by 140% in the next 15 years. This will result in an increase in demand for palliative (end-of-life) care, both in developed and developing nations. Globally, only 8% of people who need palliative care are able to receive it. In India, palliative care programs have been in existence for decades, but they are unaffordable for much of the population and only 2% of people are covered. More than 5 million seniors and people with advanced and end-stage diseases are in need. For many in India, their illness must be managed alongside a lack of access to clean water, food, and shelter.

In the Indian state of Kerala, Dr. Suresh Kumar has devised a community-led solution to the problem of inadequate palliative care. He founded the Neighbourhood Network for Palliative Care (NNPC), an organization with a goal of developing a cost-effective approach to making these services accessible to even the poorest members of society. Operating out of 230 clinics throughout Kerala, the NNPC has over 60 doctors, 350 medical staff, and 10,000 volunteers. The majority of care is provided to people in their own homes by volunteers who deliver free medications, train family members in basic care, and provide spiritual and psychological support. While volunteers focus mainly on the social and emotional challenges of end of life care, they are also able to call a doctor or take a patient to a clinic when needed. More than 60% of patients live below the poverty line, and 55% of patients are women. Most of the funding for the network comes from micro-donations from the very people it serves.

palliative3Dr. Kumar believes that end-of-life care should be seen as a social issue that has medical components, rather than a purely medical issue. He believes that the cultural and socioeconomic circumstances that a person lives in determines what kind of care they receive and what kind of death they face. With this in mind, the NNPC uses social capital and gives the community a major role in providing palliative care. NNPC volunteers come from all aspects of society in Kerala and are people who want to contribute to reducing the suffering of others at the end of their lives. Volunteers receive training and are encouraged to spend a few hours per week helping those who are dying. Not only do they provide multifaceted support to patients and their families, but they help to reduce the stigma around death and the dying and widen the reach of the NNPC.

palliative2By using a collective approach and putting a small medical team at the center of a large network of volunteers, the NNPC is able to serve a much larger population than most medical institutions providing palliative care. The NNPC has also instilled a sense of cooperation in communities, created more self-reliance and less dependence on outside medical professionals, and empowered community members with enhanced knowledge and increased confidence. Dr. Kumar has used his medical expertise to create a solution that is community-driven and focuses on what works in the local context. In the future, he hopes to take the NNPC to other regions of India, and also pilot the approach in other countries to see if it can be further adapted to provide meaningful palliative care.

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Valerie Busch

Valerie Busch

Valerie is a development professional based in Toronto, Ontario.

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