“The story of dying in the 21st century is a story of paradox. While many people are over treated in hospitals, with families and communities relegated to the margins, still more remain under treated, dying of preventable conditions and without access to basic pain relief.” • Report of the Lancet Commission on the Value of Death.
Developments in medical technology and health sciences have dramatically changed our concept of death and dying. Medical interventions sometimes continue till the last day of life without consideration for the suffering that the dying undergo.
In a well-timed report, as the world crawls back to life after the Covid-19 pandemic, the Lancet Commission on the Value of Death, attempts to demystify death. Calling for the creation of a “realistic utopia,” the report throws a spotlight on end-of-life care, death, dying, and grieving. Its focus is on enabling communities and families to reinterpret death and recognise that dying need not be a traumatic and exhausting experience. The notion of a “realistic utopia” is based on social factors, relational aspects, spiritual fabric, care-lead support, and conversations about death, dying, and grief.
The Commission finds that the closest model of its idea of such a “realistic utopia,” is a community-based palliative care system developed and practised in the south-Indian state of Kerala.
Tucked away in the south-west corner of India, the state of Kerala is a global tourist destination. Promoted with the tagline, “God’s Own Country”, the state is well-known for its eco-friendly tourism initiatives, tranquil mountains, beautiful backwaters, unspoiled beaches, art forms, spices, and Ayurveda. With the highest literacy levels, demographic ratio, and high standards of heath services, Kerala occupies the top spot in all socio-economic and sustainable development indicators. The state is also known for its political literacy and community-driven activism.
In a country where millions of people live without access to basic healthcare and where medical debt can lead families into bankruptcy, the Kerala model of participatory palliative care shows how an efficient, low-cost, low-technology intensive and equitable end-of-life care can be. In the past three decades, Kerala has successfully brought a paradigm shift in how illness, dying and death are perceived and managed.
The famed Kerala model of palliative care began in 1993 with two doctors, Dr M.R. Rajgopal and Dr Suresh Kumar, and one volunteer starting an outpatient clinic at the Kozhikode Medical College to manage pain and other symptoms of patients with serious illnesses.
However, the shortcomings of a clinical model soon became evident. It failed to cater to the complex social, emotional, and spiritual well-being of patients. Sick people could not travel to the hospital alone, so relatives were forced to take a day off from work. This core understanding radically changed the approach to palliative care. The team moved out of the clinic to visit bed-bound patients at home.
Dying, a social concern
A second paradigm shift happened in the state in 2000, when the understanding of death and dying was re-framed. The view became that dying of a life-limiting illness is a social problem, with medical aspects. It overturned the prevalent model which saw such illnesses from a purely medical perspective. Discussions were initiated within the communities through religious organisations and social bodies. The report finds that Kerala’s history of social action, and the spread of education came in handy. There was a resounding acceptance of this shift in perception and attitude towards the dying and their families.
Community approach to palliative care
Soon, Kerala saw a resounding response from neighbourhood communities to identify and support the home-bound. As communities started their own local networks, there arose a need for training and support. Thus, in 2001, the Neighbourhood Network in Palliative Care (NNPC) was formed. Operating as an umbrella organisation, NNPC provided the essential training for volunteers. It also offered access to medical and nursing skills and initial funds to start work.
Although medical support was provided by doctors and nurses; the real drivers of this neighbourhood initiative were local community members. Common people living their everyday lives in the neighbourhood came together and drew support from one another. They mobilised locally available resources and assets to provide care for the dying and their families.
By 2007, the number of such autonomous palliative care centres throughout Kerala grew to 100. These centres were driven by thousands of volunteers with financial support from within the local neighbourhoods. An underlining statement of equity identified every volunteer as a leader.
With one-sixth of the world’s population, India sees around 60 million deaths each year. Kerala has a population of approximately 35 million. Today, over 1600 institutions deliver palliative care services throughout the state. Notably, of the 2000 palliative care services in India, 80 percent are in Kerala with tens of thousands of trained volunteers. Palliative services are available in every district in Kerala, reaching an estimated 70 percent of those in need, compared to the national average in India of 23 percent.
The success of the Kerala model demonstrates how civil society and healthcare services can work collaboratively to deliver care for people at the end of life. The model depends on how well these initiatives are based on local needs and interpretations. With recognition from the WHO’s Collaborating Centre for Community Participation in Palliative Care and Long Term Care, the Kerala model of palliative care is now being tested not only in other states in India (Puducherry, West Bengal, Manipur, and Delhi) but also in Bangladesh, Indonesia, Myanmar, and Thailand.
Not only have these initiatives built a successful model for community-driven palliative care in India, sustained advocacy led the Indian government to announce a National Program for Palliative Care. A postgraduate course in palliative medicine was initiated in 2012. By 2017, palliative care was included as part of the national health policy and in 2019 it was included as part of undergraduate medical education. Meanwhile, the Narcotic Drugs and Psychotropic Substances law was modified in 2014, simplifying the process of prescribing opioids and improving its access in India.
Redefining the narrative
The Covid-19 pandemic exposed us to the fear of dying alone in a hospital bed, away from family and friends. Millions of terminally-ill patients around the world have lived and continue to live in this constant fear. The Kerala model for palliative care shows it’s possible to build a successful participatory system to deliver end-of-life care and maximise its access.
Ordinary people are willing to step forward to care for the dying and support their families. However, mutual relationships and connections of volunteers with people at end-of-life and their relatives are important. There is also a need to redefine the narrative around death and dying – making it a social concern, rather than a purely medical decision.