Waiting for Care and Community Organizing for Serious Health-Related Suffering in Kerala, India

ABSTRACT

We explore the temporalities that shape and alleviate serious health-related suffering among those with chronic and terminal conditions in Kerala, India. Drawing on ethnographic fieldwork between 2009 and 2019, we examine the entanglements between waiting for care within dominant institutions and the community organizing that palliates this waiting. Specifically, people navigate multiple medical institutions, experience loneliness and abandonment, loss of autonomy, and delays and denials of recognition as they wait for care. Community palliative care organizations offering free, routine, home-based care provide samadhanam (peace of mind) and swatantrayam (self-determination) in lifeworlds mired with chronic waiting. We document how community care sustains an alternative politics of shared time, untethered from marketized notions of efficiency and productivity toward profits. In so doing, we cast in high relief community healthcare imaginaries that alleviate serious health-related suffering and reconfigure Global North-centric perspectives.

KEYWORDS:

• Community palliative care
• India
• Kerala
• serious health-related suffering
• waiting

Acknowledgments

We thank the reviewers and editors of Medical Anthropology for their insightful feedback. We are indebted to the patients, family members, volunteers and healthcare workers in Kerala who graciously engaged with us and let us be part of their days. We are grateful to Prakash Mathew, Wafa Sainabi and A.T. Vishnu who were invaluable to our fieldwork in 2019. We thank David Clark and the End-of-Life Studies Group, University of Glasgow for their collaboration on the UK Global Challenges Research project. Further thanks to David Clark for helpful comments on this manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. Mental health in palliative care eventually branched off into independent community mental health initiatives that continue to draw on palliative networks. See Kottai and Ranganathan (2020) in this journal for a critical analysis of how this may function quite differently to palliative care.

2. There was no transgender participant in the study.

3. Some interlocutors referred to “svasthatha” in describing similar situations of free home-based care – implying overall wellness, well-being, calmness, freedom from tension, and anxiety.

Additional information

Funding

This work was partially supported by Scottish Funding Council.

Notes on contributors

Devi Vijay

Devi Vijay is a Professor at the Indian Institute of Management Calcutta. Devi’s research explores questions of inequality, institutions, and collective action, with a focus on healthcare. She has documented various aspects of community-based palliative care organizing in Kerala and its translations to other geographies in India. Her current research focuses on the political economy of healthcare in India. She has co-edited Alternative Organizations in India: Undoing Boundaries (Cambridge University Press, 2018) and Organizing Resistance and Imagining Alternatives in India (Cambridge University Press, 2022). ORCID ID: https://orcid.org/0000-0003-0670-8838

Gitte H Koksvik

Gitte H Koksvik is an associate professor in the department of social anthropology at the Norwegian university of science and technology. Her background is in philosophy, religious studies, and social anthropology. She has conducted ethnographic fieldwork in adult intensive care, writing about personhood, dignity, withholding and withdrawing treatment, and dying. Koksvik has collaborated on projects about the relationship between palliative care and assisted dying, the global transfer and translation of the Death Café phenomenon, and community palliative care in Kerala India. Her current research focusses on ‘ordinary’ end of life and dying in Norway. ORCID: https://orcid.org/0000-0003-1233-4887