Sabr: A care collaborative

We share a fact sheet of the community palliative care initiative in Kerala as an alternative form of organizing that challenges dominant archetypes of healthcare service delivery. 

What is palliative care?

The World Health Organization (WHO) describes palliative care “as improving the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual.”

Conditions typically within the ambit of palliative care are chronic or terminal conditions such as cancer, cardiovascular conditions, chronic respiratory or renal conditions, and so on. This is an expanding care blanket.

Why do we need palliative care? Why should we be aware of it?

The WHO estimates that approximately 56.8 million people are in need of palliative care.

The Lancet Commission on Pain and Palliative Care 2018 uses the term ‘serious health related suffering’ to describe the complex, multi-faceted nature of suffering that those in need of palliative care face. This serious health related suffering can be medical, but also, social, emotional, and financial.

Notably, more than 80% of those experiencing serious health related suffering are in low and middle income countries, with certain conditions such as cancer and dementia demanding greater attention. These indicators emphasize the ethical and political need to integrate palliative care into health systems & universal health coverage

What are common forms of organizing for palliative care?

Across the world, palliative care is typically provided by the hospice and hospital-based forms. In a country like India, such institution-based and professional-centric poses access and affordability issues. 

What is the community form of palliative care?

We can consider two key characteristics about the community form that distinguish it from hospice and hospital forms:

• Free ‘total’ home-based care: here, total includes financial, social, emotional, medical, bereavement support and rehabilitation
• Decentralized, neighborhood-based care networks: community is the locus of care-giving, decision-making, and fund-raising.

You can listen to Dr. Suresh Kumar, one of the pioneers of community palliative care movement in Kerala, speak to Sabr here.

So what is so exemplary about Kerala’s community form of palliative?

There are so many fascinating elements of what makes this form of collective action work. But let’s distil a few:

• Largest community networks for palliative care in the world: Latest estimates suggest around 350 community organisations
  • All 14 districts receive coverage; coverage of 60% of patient population as compared to 3-4% in the rest of India.
• Integration with the public health system: The Kerala state’s 2008 palliative care policy makes it the first state to integrate palliative care into the public helath system.
  • Today, over 900 public health facilities provide palliative care (primary health centers and district hospitals)
• Total care: Communities go way beyond the medical aspect. As they say, doctors see the symptoms, volunteers see the suffering.

The Lancet Commission on Value of Death 2022 notes that:

…something very close to the Commission’s realistic utopia has been achieved in Kerala, India, over the past three decades. Death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.

Why do we call the community form of palliative care an alternative form?

Alternative forms of organizing challenge the dominant archetypes in society. In the socio-economic order that organizes contemporary society, corporations are the dominant archetype, and they promote values such as efficiency, profitability, and shareholder returns as parameters for effectiveness.

Instead, the community form here promotes alternative values:

• Public and community approaches: The public and community value challenges dominant archetypes of privatized healthcare as the only feasible solution in a country like India 
• Bottom-up, people’s care infrastructures: It demonstrates how institutional change can be effected ‘bottom-up.’ In other words, institutions change when people make the claims.  
• A radically different imaginary to Western forms that appear as benchmarks and standards for care.

What can we learn beyond palliative care from the Kerala story?

• Community palliative care has spun off a community mental health movement. You can read more here and listen to Dr. Chitra talk to us here. 
• Community networks during disaster relief: During COVID-19 pandemic, palliative care volunteer networks provided last mile access and Kerala was the only state with a policy discourse on palliative care during the crisis. During the 2018 Kerala floods, palliative care volunteers were part of rescue networks. These instances reinforce a well-understood aspect of collective action in society – that the presence of such mobilizing structures has cascading consequences, and can be re-deployed for other kinds of mobilizations.

Of course, there is so much more we can learn. What do you think are lessons learnt that can translate to other contexts? What questions do you have about this model. Leave us a comment or write to us!

Meanwhile, if you are still here, want to read more, here’s some of our research on palliative care: 

1. History of community palliative care and its evolution 
2. Why Kerala?
3. How do diverse people come together and work to provide care?
4. How do we evaluate community palliative care?

And here are some more podcasts and videos for those intrigued by Kerala’s palliative care story:

• Evaluating Kerala’s Community Palliative Care: A podcast by Professor David Clark, End of Life Studies Group, University of Glasgow, with Dr. Suresh Kumar and Devi Vijay.
• A video outlining the genesis and evolution of community palliative care

References

Vijay, D., Monin, P., & Kulkarni, M. (2023). Strangers at the Bedside: Solidarity-making to address institutionalized infrastructural inequalities. Organization Studies, 44(8), 1281-1308. https://doi.org/10.1177/01708406231169430