I spent a productive week at Dumfries this May working with the Glasgow End of Life Studies Group on our project funded by the Scottish Funding Council on “Assessing the Quality and Outcomes in a Community Form of Palliative Care Delivery in Kerala, India”. In this post, I reflect on the genesis of this project, and why I find such a collaboration generative and transformative.
Kerala’s community-based palliative care is a global exemplar in the palliative care field as a model of a resource-effective, participatory alternative to hospice and hospital-based provision. As a part of my PhD dissertation, I traced the evolution of the community-based palliative care movement from its origins in 1998 to the formal institutionalization of community palliative care through Kerala state government policy in 2008. The limited translation of the model beyond state boundaries, led my colleague Professor Philippe Monin and me to explore the specificities of Kerala’s social, political and historical conditions that enabled community-based provision of a health service.
Along this journey, in 2014, when the Institute of Palliative Medicine Kozhikode teamed with the Dr. P.B. Salim, then District Magistrate of Nadia district, West Bengal, and local key stakeholders in the region, I had the fortuity of tracing the translation of Kerala’s model to a distinct context in West Bengal right from the point of inception. I collaborated with David Clark and Shahaduz Zaman at the Glasgow End of Life Studies Group to examine this translation effort.
Two persistent inter-related concerns that repeatedly surfaced during these myriad explorations have been a) the contested status of the efficacy of the Kerala model, and b) what really are the core translatable elements of the model that work? Specifically, while much has been written on the Kerala model by practitioners, there are few studies that evaluate outcomes. These extant studies are insightful. Aneena Abraham (2011) examined the impact of community-owned home-based palliative care on quality of life of cancer patients, focusing primarily on Kozhikode district. Jayalakshmi Rajeev and Suhita Chopra Chatterjee (2017), in their comparative study in the Trivandrum district of the functioning of home-care projects by two local self-governing institutions (LSGI) in association with the primary health care system, and a local NGO’s home-care project, point to disparities in compliance to state policy guidelines among the LSGI services. Rajeev and Chatterjee also point to the relatively higher reliability, and professionalism in the NGO.
Together, these studies point to tensions: while services provided are undeniably vital to vulnerable communities, there are stark variations between them. Moreover, both studies are bound to specific districts (Kozhikode, and Trivandrum respectively) – and the variations in service provision across geographies remain under-explored. Understandably, any attempt at an evaluation exercise that can encompass the heterogeneity and pluralism (e.g., type of patient categories, type of organisational forms, regional variations, type of volunteer base) in the Kerala context is a complex and daunting exercise. Yet, the imperative for an evaluation exercise is heightened with multiple attempts to translate the Kerala model across geographical boundaries. While there is plenty of documentation, often what may work subterraneously in such community forms may be difficult to codify.
Our UK-GCRF project is motivated by these concerns. Our team is constituted of Professor David Clark (Principal Investigator), Dr Ben Colburn, Dr Jennifer Corns, Dr. Sandy Whitelaw, and Dr. Gitte Koksvik from the University of Glasgow. The Institute of Palliative Medicine, Kozhikode is a technical partner, with Dr. Suresh Kumar sharing his expertise as a palliative care physician and community organiser. We draw on diverse disciplinary backgrounds including the clinical practice of palliative care, sociology, philosophy, anthropology and organizational theory. Our commitment is to develop a conceptual framework that can guide future evaluation exercises, through inputs drawn from key stakeholders, including physicians, nurses, volunteers, patients, family members, local self-government officials, state officials and bureaucrats.
All team members met for the kick-off meeting in November. Amy McCreadie debuted with some neat film-making around our project. Thereafter, we have had excellent research assistance provided by Aparna G., and field work assistance by a team of community volunteers, including Prakash Mathew, Vishnu and Wafa. Gitte Koksvik joined us from Glasgow for a week during this exercise (Read about Gitte’s experience here). The primary purpose of my visit to Dumfries in May was to discuss our initial findings, collectively gauge how far we had reached based on our research proposal commitments, and outline the next phase.
Reflecting on the kick-off meeting in November, and the follow-up meeting in May, here are some of the reasons I find this form of collaboration exciting:
- Multidisciplinary work: The most fascinating aspect of these collaborations is the multidisciplinary nature of the team. For instance, Sandy Whitelaw brings vital expertise on evaluation studies in public health in the UK, while Suresh Kumar’s involvement as a physician closely involved with community organizing, advocacy, and translation efforts, helps us ensure we have our hand on the pulse of Kerala’s community organizations. David, beyond his expertise in global end-of-life care interventions, has closely observed the Kerala model evolve over time. Ben Colburn, drawing on his expertise as a political philosopher who works closely with policy and practice, drew our attention to the moral suppositions that accompany assessment frameworks. Ben guided our initial discussions by asking “How do we avoid cultural imperialism without collapsing into naïve cultural relativism”. This was an important question for us, given that prevailing evaluation measures in the palliative care field originate in Western contexts, with sharply distinct healthcare systems and logics of monitoring and regulation. Simultaneously, while the Kerala model was indeed novel and provided wide coverage, we wished to avoid reducing the intervention to “anything goes”. Further, the generative part of such multidisciplinary engagement is that it lends attention to areas that might be otherwise obscured. For example, Jennifer Corns’ engagement with pain and suffering, has directed us to closely attend to suffering as a significant disruption of agency, and how such a lens may inform our understanding of policy and practice (Find her recent co-edited book on Philosophy of Pain here)
- Diverse forms of research outputs: I am fascinated by the numerous ways in which research is produced and disseminated as a collective, collaborative exercise by the End of Life Studies Group. Podcasts, blogs, and videos are increasingly meaningful ways to converse about our research with wider populations.
- End-of-Life Studies Group @Dumfries as a caravan serai: I see the Dumfries campus as a caravan stop for researchers across the world who are connected in their common interest around questions of End-of-Life care. In this third visit to the Dumfries campus, I was all too aware of all those who have visited and informed academic conversations and are likely to be back soon. The importance of such a community cannot be underestimated – many of us work in disciplinary silos within geographical constraints. My own views of our current research have been significantly enriched over coffee, public presentations, and indeed gardening (Marian Krawczyk, for more on this unique and very generative approach!), with other members of the End-of-Life Studies group who are not directly involved in the project.
Finally, deep gratitude to David and his family for hosting me over the Spring Fling weekend, visiting local artist studios, nourished by cakes and tea, and the faithful rain. I also discovered some splendid music working at David’s writing shed. In the true spirit of a caravan serai, I am far more invigorated for the next phase of this project.
Abraham, A.A. (2011). Impact of Community-owned Home-based Palliative Care on Quality of Life of Cancer Patients in Kerala. (Unpublished Master’s dissertation). Sri Chitra Thirunal Institute of Medical Sciences and Technology, Kerala.
Jayalakshmi, R., & Suhita, C. C. (2017). Home-based palliative services under two local self-government institutions of Kerala, India: An assessment of compliance with policy and guidelines to local self-government institutions. Indian Journal of Palliative Care, 23(1), 65.