Love and Justice at the End of Life: Studying Palliative Care in India

touching moment in hospital

The article “The Conflicting Conventions of Care: Transformative Service as Justice and Agape,” currently in press in the Journal of Service Research, examines the transformative service provided by a community palliative care initiative in Kerala, India.  In the community-based approach, teams of doctors, nurses, and community volunteers provide free home-based palliative care, including medical, social, financial, bereavement, and rehabilitation support. This model is thus distinct from the conventional hospice and hospital-based palliative care services that are anchored around professional care delivery.

Rohit Varman Devi Vijay Per Skålén
Rohit Varman, left; Devi Vijay, and Per Skålén

In this ethnographic study, the authors — Rohit Varman,  a professor at University of Birmingham; Devi Vijay, an associate professor at Indian Institute of Management Calcutta; Per Skålén, a professor at Karlstad University (Sweden) examine the conflicts and unintended consequences that arise from the diverse social conventions constituting such a transformative service. They draw on convention theory to argue that a transformative service system cannot be monochromatically based on markets. Accordingly, a transformative initiative requires a broad interface reflective of society and its various conventions and conflicts.

This study contributes to transformative service research by developing a dialectical transformative service system framework that is a synthesis of the calculative conflict-ridden and calculative regime of justice and the non-calculative regime of agape in which persons actively cooperate out of a sense of love and abandon calculations of reciprocity. In our transformative service system framework, the regime of justice has civic conventions at its core and industrial, inspired, market, domestic, and fame conventions as ancillaries. The framework provides a micro-level understanding of disputes and their reconciliation, advances a diffused understanding of worth that ruptures the binary of legitimate or illegitimate actions, and delineates the significance of morality in transformative service. The study also contributes by explaining agape’s role in community-based palliative care.

This study offers several implications for policy development and practice. The spread of COVID-19 during the writing of this article and the dramatic rise in serious health-related suffering, particularly in low- and middle-income countries, have cast in high relief the need for community healthcare models. The pandemic is a sharp reminder that collective consciousness and actions are crucial for human survival. There is thus an urgent need to explore service delivery models beyond the prevailing hospital or hospice-based approaches and the neoliberal market-based models that are limited in coverage and affordability. Kerala’s community model is one exemplary model that offers an alternative by remodeling health services through empowered communities. This study shows the centrality of the civic conventions and agape in such an intervention that prioritizes civic/political rights, solidarity, and love, with several other worlds playing a supportive role. Moreover, designing compromises between different conventions can be central to the working of such transformative service systems.

Furthermore, public health offerings cannot strategically design agape into interventions because this would introduce calculations. Agapic love cannot be forced, edified, or brought about intentionally. However, service systems that encourage caregiver interactions that shun or renounce calculated exchanges and reciprocity may gradually create spaces where caregivers can transition, even momentarily, to a regime of agape.

Thus, the study shows that transformative service systems have to transcend the narrow confines of markets and seamless resource integration to embrace a dialectic of justice and agape that is marked by unintended consequences, conflicts, and compromises. Our emphases on civic conventions and love as central features of a transformative service help to imagine a common frontier that is becoming imperative for  human survival.

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