Devi Vijay
In 2005, a team of volunteers and nurses from a community organization in north Kerala (India) went door-to-door to identify residents in their town with chronic conditions or end-of-life care needs. At one house, a middle-aged woman led them to her backyard where the team was horrified to find a frail old woman lying on a foldable bed, covered with black sheets. The team learnt that this old woman, let’s call her Rajamma, was the mother of the middle-aged woman, whose husband and family refused to provide for Rajamma because she had not left property for the daughter. A foul odor emanated from Rajamma, which made her daughter vomit when she came near. Meena, the nurse, could not remove Rajamma’s clothes to bathe her, as Rajamma’s skin clung to her clothes. Meena recounted, “When we bathed her, we feared if she had any life in her”. Rajamma’s overgrown finger nails had cut her palms, and worms infested the wound. After bathing, and upon the volunteers’ request, the daughter fetched Rajamma some rice gruel. The daughter admitted she could provide for Rajamma only when her husband’s family was not around. Neighbors gathered around the house, and told the daughter, “isn’t it better to kill your mother than keep her like this”. Until then, they had no idea that an old woman resided there. The team discussed among themselves that there was no point in leaving Rajamma in this state of abandonment. Consulting with the daughter, they decided to bring Rajamma to Kozhikode city. At Kozhikode, Rajamma was admitted at a local home for the aged and destitute and passed away three days later under the compassionate care of the staff.
With shifting demographic conditions, discussions on end-of-life care have intensified and proliferated. Medical professionals increasingly criticise the treatment-centric logic prevailing in medical practice which translates to excessive medicalization of the end-of-life phase. For instance, surgeon and celebrity writer Atul Gawande, in his bestseller titled Being Mortal: Medicine and What Matters in the End examines his experience as a medical practitioner in the United States to unpack deep-rooted social practices, norms and societal institutions pertaining to aging and dying. While a good death is important to enhance the patient’s dignity during her last days, Gawande raises questions of a good life. Thus, quality of life is as much about freedom from pain and disease, as it is about the retention of function to actively engage with the world. Patients prefer to die at home having fulfilled their ‘dying role’, surrounded by loved ones, rather than in a hospital. They wish to say their goodbyes, establish legacies, and complete unfinished commitments.
Gawande presents attributes of a good life and good death that are compelling and have universal appeal. Yet, this treatise appears jarringly distant from the vignette on Rajamma’s abuse by her family. Of course, Rajamma’s case may be interpreted as an extreme case of elder abuse and deviant behavior. However, as Paul Farmer contends, “Human rights violations are not accidents; they are not random in distribution or effect. Rights violations are, rather, symptoms of deeper pathologies of power and are linked intimately to the social conditions that so often determine who will suffer abuse and who will be shielded from harm”. [1] Indeed, large-scale social forces such as increased privatization, commercialization of public health, legacies of colonial poverty, and social vectors of class, caste, gender, and race introduce ‘structural violence’ around illness, social suffering, and dying.
Rajamma’s case exemplifies how structural factors are embodied at the level of individual experience. Older people find themselves marginalized in contemporary society, and report greater poverty, dependency, morbidity and sparse formal support systems. [2] Moreover, older women are more likely than men to face physical and verbal abuse. [3]
In contrast to Rajamma’s setting, Gawande’s account arises from a context with relatively richer resources, access to hospices and end-of-life care communities. It is such Western settings that generate benchmarks for global end-of-life care indices. Borrowing from Dipesh Chakrabarty, [4] Zaman, Inbadas, Whitelaw and Clark contend that these West-centric indices relegate developing country practices to the ‘waiting room of history’; ‘not yet’ there, and to be constantly improved. [5] Such reductive, medicine-centric approaches overlook social conditions and their discriminatory effects. To develop more inclusive approaches to end-of-life care, we must look towards forms that are contextually appropriate and aligned with local structures, institutions and cultures with respect to disease, suffering and death. Here, I draw on my research on the community-based palliative care model in Kerala (India) to illustrate an alternative model of organizing for end-of-life care.
Community-based Palliative Care in Kerala
India is home to one-sixth of the world’s population with a huge burden of suffering from non-communicable conditions. Yet, palliative care, or care directed at improving quality of life for patients and families facing life-limiting illnesses, reaches less than 2% of the patient population in India. (6) Most Indian states have no awareness or facilities for palliative care. In stark contrast, in the southern state of Kerala, about 60% of the patient population across all 14 districts receives palliative care. In 2008, the Kerala government introduced a landmark ‘Pain and Palliative Care Policy’ recognizing home-based palliative care as a primary health requirement, and developed measures to train doctors and nurses in palliative care. Recently, the Kerala government announced plans to extend palliative care from the primary level to community health centers (second-tier). Such structural shifts are unique to Kerala while other Indian states have lagged considerably behind. For example, Maharashtra introduced a state-level palliative care policy in 2012, without significant transformation subsequently in services. How has one state brought about such systemic change, while palliative care in the rest of India remains poor and fragmented?
The answer may well rest with the bottom-up demand from community organizations for palliative care in Kerala. The origins of this community-based movement can be traced to a pain clinic founded at the Kozhikode Medical College in 1993 by two physicians, M. R. Rajagopal and Suresh Kumar, with the support of volunteers. Through prolonged engagement with patients, volunteers learned that patients’ issues were not primarily ‘illness and associated medical symptoms’, but rather ‘marginalization’. Patients were concerned about children dropping-out of school, families falling into poverty because of out-of-pocket health expenses, starvation, social isolation, and stigma. Volunteers articulated that patients’ issues were ‘80% social, 20% medical’. With this frame, community organizations were established, often constituted entirely of non-medical professionals (such as farmers, teachers, government clerks) who routinely provided social support to patients and families, with medical professionals providing necessary support when required.
Over 200 autonomous, decentralized community organizations are geographically dispersed across Kerala today. Each has teams of community volunteers and nurses that identify patients and provide weekly home-care. These community organizations raise micro-funds locally for residents’ needs such as covering patients’ medical expenses, transportation to the hospital, providing food kits to destitute homes, and paying childrens’ school fees. These organizations have renovated patients’ dilapidated houses, organized cultural events for patients and families to forge a sense of collective, and mobilized campaigns on issues endemic to the community that may even be unrelated to palliative care (e.g. on drug abuse, diabetes, elder care). Thus, community-based palliative care in Kerala is ‘total care’, i.e. home-based, psychological, medical, financial, and emotional support, bereavement support and rehabilitation.
Interestingly, with the inclusion of community volunteers, the boundaries of palliative care have dramatically transformed. In 1993, the doctors’ clinic began with pain relief primarily for terminally-ill cancer patients. Through community volunteers’ collective deliberations, patient categories have expanded to include paraplegia, slow progressive diseases such as peripheral vascular disease and HIV/AIDS, chronic respiratory and renal conditions, and end-stage progressive diseases like cancer. Certain organizations have included psychiatric and geriatric conditions that pose challenges to their communities within the ambit of palliative care. As a veteran volunteer noted, “where the doctors see symptoms, volunteers see suffering”. It is one such team of community volunteers who walked into Rajamma’s house, that fateful day.
Several questions arise as one studies Kerala’s community-based palliative care movement. [6] Are there specific contextual factors that nurtured a community-based movement in this state? Why has this movement remained largely contained within Kerala’s boundaries? What, if any, are key principles for translation of the Kerala model to other geographies? Addressing these questions may benefit not just the Third World, but also the First World with its growing healthcare inequities and abjection of its poor (see Michael Moore’s Sicko).
In sum, the community volunteer has radically transformed the nature of palliative care in Kerala, and through virtuous cycles of collective mobilization and social capital, arguably, broader social institutions as well. In a seminal essay, titled “Beyond the Great Doctors” that sought to refocus medical history on the social relations of medicine, Susan Reverby and David Rosner quote Henry Sigerist as stating that “the history of medicine is infinitely more than the history of great doctors and their books”. [7] Indeed, the history of palliative care in Kerala goes well beyond the pioneering doctors. Kerala’s community volunteers have exploded the palliative care sector’s boundaries and practices, not just to ensure a good death, but a good life.
References:
[1] Farmer, P., 2004. Pathologies of Power: Health, Human rights, and the New War on the Poor (Vol. 4). Berkeley: Univ of California Press.
[2] Pollock, A. 2004. NHS plc: The Privatization of Our Healthcare. London: Verso
[3] Chokkanathan, S. and Lee, A.E., 2006. Elder mistreatment in urban India: A community-based study. Journal of Elder Abuse & Neglect, 17(2), pp.45-61.
[4] Chakrabarty, D., 2009. Provincializing Europe: Postcolonial Thought and Historical
Difference. NJ: Princeton University Press.
[5] Zaman, S., Inbadas, H., Whitelaw, A. and Clark, D., 2017. Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’. Social Science & Medicine, 172, pp.72-79.
[6] Rajagopal, M.R., 2015. The current status of palliative care in India. Cancer Control, 57-62.
[7] Reverby, S., and Rosner, D., 1979. Beyond the Great Doctors. In Reverby, S. and Roser, D. (eds). Healthcare in America. Philadelphia: Temple University Press
Devi Vijay is an Associate Professor at the Indian Institute of Management Calcutta and a Fulbright Fellow at the Mailman School of Public Health, Columbia University. She has recently co-edited a book with Rohit Varman titled, ‘Alternative Organisations in India: Undoing Boundaries’ (Cambridge University Press: 2017).