Kerala’s model of care transformed how people lived and died: Lancet Commission

In the report, the authors have called for rebalancing public attitudes to death and the dying. The Commission brought together experts in health and social care, social science and other areas to analyse how societies around the world perceive death and care for those dying and aim to provide recommendations to policymakers, governments and social care systems.

India comprises over one-sixth of the world’s population and witnesses around 60 million deaths every year.

According to the Commission, the success of the Kerala model rests on a series of paradigm shifts relating to how illness, dying, caring and grieving are viewed within the state.

“The landscape of how people approach the end of life when dying from chronic and incurable illnesses was revolutionised in many parts of the state (population approximately 35 million) and these changes have been seen over the past three decades,” Dr M R Rajagopal, Chairman, Palladium India and Director of WHO Collaborating Centre on Policy and Training in Access to Pain Relief told The Indian Express.

Dr Rajagopal, who is also co-author of the report, had along with Dr Suresh Kumar and a volunteer, Asoka Kumar, set up a civil society organisation in 1993, to manage the pain and other symptoms of people with serious illness.

It was based in an outpatient clinic in a medical college in Kozhikode. Although community donations supported the work and volunteers assisted, the project was based on a clinical model of palliative care. The inadequacy of this model soon became evident: people needing the care could not travel to attend the clinic; family members were losing a day’s wages, on which they depended heavily, to come to the clinic; and the complex social, emotional, and spiritual needs people described could not be met by a distant clinical service, even with volunteer support.

Two years later, the team started moving out to visit bed-bound patients in their homes. The next paradigm shift took place in 2000 when the initiative stated that dying from a life-limiting illness is a social problem with medical aspects.

The initiative held discussions with local communities through religious organisations, activists, and local businesses, asking if they felt that caring for and supporting dying or chronically-ill people was a societal concern. Kerala has a long history of social action, and the response was resounding that this was a societal concern, The Lancet Commission said.

Communities responded by starting their local networks to identify and support people, who were dying or had a chronic illness. An umbrella organisation, the Neighbourhood Network in Palliative Care, was formed in 2001 to provide support with training for volunteers, access to medical and nursing skills, and initial funds to start the work.

Groups were run by people from the local communities, such as farmers, teachers, and local business people, and drew on existing community resources and assets. Doctors and nurses undertook the clinical roles, but importantly, the cooperatives of community volunteers led the service.

By 2007, there were close to 100 autonomous centres running throughout Kerala with a network of thousands of volunteers supporting them and donations coming from the local community. This model of care transformed how people lived and died in the state.

People with incurable illnesses now had people coming to visit them at home, supporting their families with care, mobilising community resources to raise finances to keep children in school, providing food for the family, and helping bereaved spouses find work to support their families.

While the global life expectancy has risen from 66.8 years in 2000 to 73.4 years in 2019 people are living more of these additional years in poor health, with years lived with disability, increasing from 8.6 years in 2000 to 10 years in 2019.

The Lancet Commission’s recommendations include giving global priority to increase access to pain relief at the end of life apart from promoting policies to support informal carers and paid compassionate or bereavement leave in all countries. “Caring for the dying involves infusing meaning into the time left. It is a time for achieving physical comfort, for coming to acceptance and making peace with oneself, for many hugs and repairing broken bridges of relationships. It is a time for giving and receiving love with dignity. This can be achieved with broad-based community awareness and action to change the status quo,” Dr Rajagopal said.