Achapan (70) lives on a hill in Wayanad, Kerala, with his wife, daughter and his grandson. He built his two-room house through the State Housing Scheme for Scheduled Tribes. He worked as a daily wage laborer till he suffered a stroke at his work place in 2009. Since then, he has had several episodes of hospitalization. For follow-up and medicines, Achapan walked at least 12 km through hilly terrain to the nearest government medical facility. In 2018, a Wayanad-based community palliative care organization arranged weekly home visits by a nurse and a volunteer team for Achapan. They get free medicines and doctor visits when needed. In these ways, community organization provides ‘wholesale care’.
a global example
The World Health Organization (WHO) considers palliative care as an approach to improving the quality of life of patients and families who are facing life-threatening diseases such as heart disease, cancer, and chronic obstructive pulmonary disease. The 2018 Lancet Commission on Palliative Care and Pain Relief refers to conditions such as ‘severe health-related pain’ that require medical intervention as well as physical, social, spiritual and emotional support. In 2015, more than 80% of persons experiencing serious health-related distress were from low- and middle-income countries. As a middle-income country with an aging population and a rising burden of non-communicable diseases, how well is India equipped to deal with large-scale serious health crises? Bad enough as India struggles with around 4% coverage for palliative care unevenly around the mega cities. Unlike the rest of India, Kerala’s palliative care model is a global example in inclusive care infrastructure.
In 1993, Dr. MR Rajagopal and his student, Dr. Suresh Kumar, experimented with a pain relief clinic for cancer patients at the Government Medical College, Kozhikode. This experiment has been going on for years in more than 400 community palliative care organizations across Kerala, manned by volunteers and nurses, where home care is provided based on the need of doctors. Volunteers from diverse social groups looked beyond terminal cancer to include unconventional conditions considered for palliative care, such as spinal cord injuries, HIV/AIDS, and geriatric cases. The volunteers also understood the social suffering of the families in their neighborhood when faced with such situations. One early volunteer reflected that “where doctors know the symptoms, volunteers understand the suffering”. The community recognized that “patient suffering is 20% medical, 80% social” and regressed to care. Community ownership brought about in home-based ‘whole care’, that is, medical, social, financial, bereavement and rehabilitation support for patients and families. Kerala was experimenting with a community model on a larger scale and scope than hospital-based approaches in the rest of the world.
By 2004, community organizers felt the need for state involvement. What began as a Pariksha project with Malappuram panchayats has turned into a landmark palliative care policy launched by the Left Democratic Front government in 2008. Over time, all 14 districts provided palliative care with mandates at the primary, community and tertiary levels.
Certainly, an emerging healthcare sector creates new challenges. For example, metrics for evaluating palliative care delivery have been developed primarily for hospitals and hospices in the Global North. Public health integration is uneven across Kerala. Yet, through 30 years of this evolving model, we now see the social consequences and byproducts. According to a 2018 Lancet report, Kerala has a network of over 841 of India’s 908 palliative care sites – one of the largest palliative networks in the world.
Furthermore, community mental health initiatives have branched out from Kerala’s palliative care movement. Kerala mobilized palliative networks for relief work during the 2018 floods. It was arguably the only Indian state where the government regularly made reference to palliative care during COVID-19 briefings. Overall, Kerala’s community palliative care model deserves attention as a global example not only for healthcare, but also for wider social and public innovations.
practice implication
First, only 14% of patients who need palliative care worldwide receive it, highlighting the limited access and affordability of hospitals and hospices. Kerala’s community model covers more than 60% of patients. The Institute of Palliative Medicine in Kozhikode and Palliyam India in Thiruvananthapuram are the nodal organizations that provide training informed by a community approach for doctors, nurses and volunteers. Second, public health palliative care integration breaks the myths about “the impossibility of public health infrastructure in India” or “the state cannot provide healthcare”.
The state and the community created opportunities for the private sector, creating a ‘crowding-in effect’. Here, private healthcare should offer better standards for pre-selecting patients than public and community organizations. Finally, the story of Kerala exemplifies how diverse groups of people – along religious, caste and gender lines – forged solidarity to create care infrastructure. These community organizations are powerful reminders of how people organize in the face of difference.
Devi Vijay is Professor at the Indian Institute of Management, Calcutta