Indian Journal of Medical Ethics

COMMENTARY


The sociality of dying: Contextual philosophical reflections on end-of-life care

Siby K George

Published online first on August 31, 2024. DOI:10.20529/IJME.2024.056

Abstract

Sociality is an ineluctable aspect of the human condition. Both the meaning of our existence in the world and the meaning of the end of our existence come to us from the other and their death. Sharing these meanings in joy, grief and angst fills the moments of our existence with purpose and takes the sting out of our distress, most of all the distress of dying. The essay critiques social practices that increasingly make possible the denial of care (social death) to the dying or providing them with uncompassionate hyper-care in contexts like India, where a palpable sense of community and family life are still very significant to many people. It pleads against social currents that make such ontologically and culturally significant ways of living disappear, opening up a chasm of meaningless suffering.

Keywords: death, social death, care, community

This brief essay will amplify the sociality and shareability of our dying through several illustrations and cases from the Indian context. It will plead for taking death as a social event, made bearable with human sharing. Two core issues of the ethics of end-of-life care will be the focus of the essay: (i) uncared for social death, especially when a person is still living, and (ii) modes of uncompassionate care — medicalised dying, and abandoning the aged in old-age homes without their consent and desire. In addition, and more pertinently, my purpose is to argue that these issues have rather context-specific meanings and problems in places like India. For a vast majority of the aging population in the Global South, the typically modern sense of individual independence and isolated living is something distinctly alienating. Hence, the ethos of dying as a social event must not be allowed to disappear. The paper will show that it is closer to the way we are, rather than the culture of isolating dying persons.

Death as social event

Death became a central theme of discussion in twentieth-century Western philosophy. For the German existentialist philosopher Martin Heidegger, one’s existence is conditioned by what he calls “being-with” or “sociality”. Sociality prevents us from achieving true individualisation or our own authentic selfhood [1]. Heidegger argues that our own death can never become an event in our own life. But the angst concerning our own death, which is unshareable with others is, for Heidegger, the ontological signal of our finitude. As such, anticipation of death becomes the condition that makes possible our individuation, despite the inherent sociality of our selfhood.

The Holocaust survivor and Lithuanian-French philosopher of the other (the other human being), Emmanuel Levinas, constantly responds in his works to Heidegger’s thought on death. No one can assume one’s own death for Levinas in an original way or first of all in opposition to Heidegger. One’s mortality dawns on a person through the detour of the death of the other. Hence, even death-angst and the consequent awareness of one’s finitude must pass through this detour. The first death is not the anticipation of the death of the self, but the death of the other. In the experience of the other’s death, I am implicated. I am a part of the death of the other. “I think that the Human consists precisely in opening oneself to the death of the other, in being preoccupied with his or her death” [2: pp 157-58]. Rather than the Heideggerian loneliness of dying, the sociality of dying is constitutive of the human being for Levinas. For him, all meaning or sense, including the sense of our mortality, arise for us from the other, as a response to the other, right from the very first moment of our birth and much before we become free individuals as adults. This is why, thinking with Levinas, his philosopher-friend Jacques Derrida, later wrote that the only meaning that the phrase “my death” can have is “this death of the other in ‘me’” [3: p 76; 4]. That is, my being (and my death) has any meaning or identity only as that meaning pumped into me from the outside by the other. Even the simplest of ethical gestures are possible for Levinas only because the other and the death of the other are implicated in our very being.

I draw the following from the above brief discussion on twentieth-century philosophy of death. (i) The other person’s death is significant for the self as all meaning is conditioned on the other — even the meaning of the anxiety about one’s own death/finitude. That death is a social event is not merely a gradually disappearing empirical fact; rather, it is a social practice, closely linked to the ontological sociality of death. (ii) But it is evidently true that with increasing modernisation, death increasingly becomes less of a social event. People increasingly die medicalised and away from the midst of the family and dear ones in the secrecy of the hospital. This does not reduce the social significance of the other’s death, but amplifies the terror of death negatively. (iii) Basing on the Levinasian argument about the existential significance and sociality of death, a strong case can be made for the ethics of end-of-life care and the dignity of dying with others in peace. This is especially so in contexts like India’s, where modern individualism has still not fully replaced the strong human bond of community and family living, despite caste, gender, class and other hierarchical distinctions.

Social death

I now want to look at social tendencies that militate against the ontological sociality of dying and the culture of considering death as a social event. The first of such phenomena that I shall consider is known as social death.

Social death occurs when a person, living or dead, is considered less than a person. It refers to “the way people may be regarded as if they are something other than human or no longer a person” [5: p 5]. They are, thus, considered equal to dead when they are still alive or are quickly forgotten and not mourned when they actually die. Pleading for a contextual case of the dignity of dying with others in peace (with India as the context) does not in any way suggest a eulogisation of the Indian cultural ethos of death and dying. In fact, such pleading merely emphasises a possibility, as actuality is the reverse: the rampant prevalence of social death. Scholars of aging in India speak about the same phenomenon in the parlance of neglect, abuse and disrespect of the aged [6, 7, 8] and scholars of gender or suicide more directly about the living dead and social death [9, 10, 11]. Some people are forgotten before they are dead, others immediately after they are dead, and some others before and after their dying. Jana Králová [12] pins down three ways in which social death of the living happens: (i) when their sense of others and their identity-ties weaken and collapse as when dementia patients lose their power to recognise the identity of even their dear ones; (ii) when their social connection to others is forcibly or voluntarily severed even when they are in their full powers as it is with forced and self-imposed solitary confinement; and (iii) when their bodily powers disintegrate due to aging or illness as when medical personnel and relatives speak of them as corpses even in their presence. In all such cases, the point of contention is how others treat them and behave towards them: as if they are already dead, as if they have no right to be with others and die in a dignified way. Such considerations of persons often go hand-in-hand “with their low socio-economic status, leading to social exclusion” [12: p 239], and can hasten their physical death from the withdrawal of all caring social rituals that make death meaningful [12: p 244].

Social death can also sometimes mean the extreme step of active enforcing of the dependent person’s physical death. In the southern districts of Tamil Nadu, Thalaikoothal or leisurely oil bath is sometimes given to the unwanted elderly or terminally ill person, which causes high fever and pneumonia. Soon they are also given several glasses of cold tender coconut water, which in excess can cause renal failure. Both these conditions soon lead almost certainly to the person’s death. Several other methods are also traditionally practised in these parts for assisting and easing the process of dying. The practice came to light in 2010 when a complaint was registered against the killing of one Mr Selvaraj [13: p 2010]. Socioeconomic motives are cited as significant reasons behind the practice [14].

Innocuous, well-meaning suggestions can sometimes appear to affirm social death. I was diagnosed with plasma cell cancer multiple myeloma in 2010, accompanied by a rather unoptimistic prognosis. A minority of people who mattered to us pestered my harrowed partner to believe that there was no hope left and she gradually refused to take their calls. She explained to me later when I achieved remission, “They sounded as though they were already speaking about the corpse.”

The Levinas-Derrida argument regarding the inherent sociality of dying can be reformulated against Heidegger but in the Heideggerian idiom, as our inherent dying-with-others. Being-with is at the same time dying-with. The sense of my existence and of the end of my existence both come to me from the other and their death. This is an ontological characterisation apropos of Levinas but has practical consequences when we continue to regard death as a social event. Modes of dignified dying-with-others indicate not only caring for the dying but also keeping the memory of the already dead person alive for a sufficiently long duration of time and making sure that “social death may not occur” [5: p 6]. We mourn and grieve over lives lost when those lives are valuable and dear to us. Many lives lost do not touch us because they were not lives to us in the first place. They could be poor lives, unloved lives, enemy lives, disgusting lives. Judith Butler writes, “An ungrievable life is one that cannot be mourned because it has never lived, that is, it has never counted as a life at all” [15: p 38]. On June 2, 2023, 296 people were killed in the train accident of Balasore, Orissa, India — mainly poor labourers, who packed themselves into the first three unreserved coaches of the Coromandel Express, heading for Chennai from Kolkata. Social commentators wrote that the dead were insufficiently mourned. A survivor told The New York Times, “It doesn’t matter if we die at home or in a train accident—we are nobody. After a few days, everyone will forget so many people died” [16]. Similarly, floating dead-bodies on the Ganga was one of the abiding images of India’s brutal second wave of the Covid-19 pandemic — not a dignified way of dying-with-others by any yardstick. Social death, especially before physical death, implies absence of meaningful end-of-life care. Other than social death, another tendency that militates against the ontological sociality of dying (our inherent dying-with-others), to which I now turn, is uncompassionate care.

Uncompassionate care

On one end of the spectrum of ethically flawed end-of-life care, as shown above, we have social death: the phenomenon of aged and terminally ill people living uncared for in social forgottenness, meeting their end sometimes forcibly, dying without being mourned, receiving undignified treatment of their mortal remains, and quickly forgotten after their death. On the other end of the spectrum, we have — if only in privileged social pockets of India — uncompassionate care: aged and terminally ill people living in isolation in old-age homes without their consent and desire, and dying in the medicalised isolation of hospital rooms. From the perspective of hyper-attentive children and dear-ones, both these are the most meaningful ways of fulfilling their responsibilities. But for those who are thus treated, their habitual embodied way of being revolts against such asocial existence and meaningless medicalised-technologized survival. They pine for living amidst people they are fond of, especially when there is no hope of a return to normalcy. As joint families become nuclear, there emerges a huge sensibility-gap between individualistic, sophisticated, modern children and familial, naïve, traditional parents, who long for dying with others rather than dying in the isolation of hospital wards. If a person chooses to live in an old-age home or wants special medical attention in a hospital even when it is certain that their days are numbered, there is no ethical problem. The ethical problem arises only when they are repulsed by such a scenario, feel helpless, and can see no meaning in highly medicalised survival or life in the unfamiliar ambience of old-age homes. Persons who have lived more sure-footedly in the world of modern individualism and the apparatuses of modern urban life are more likely to find such a scenario agreeable or even desirable. In contexts like India’s, more people, especially the aged, are likely to feel alienated in such a world giving rise to the ethical problem [17].

The story of the death of an approximately 90-year-old male relative in rural Kerala is instructive. He has been bed-ridden for over five years on account of age-related problems of mobility, but he was otherwise healthy. Looked after by one of his nine children and supported financially and socially by others, he was generally found cheerful and in good humour till his last moment. One could occasionally hear complaints from some of his other children that he wasn’t properly cared for, but he seemed always happy and contented. Some of his children were abroad and earning well. Towards the end, when he wasn’t doing that well, they insisted on taking him to a hospital. The diagnosis was that he had aggravated cancers in his body. But he became uncontrollable and unruly in the hospital, and pleaded to be taken back to his house and his bed. He died peacefully in his house two weeks later, surrounded by all his children and other near ones. They keep his memory alive in collective prayer, annual commemorations, affectionate conversations, and on the family WhatsApp group. Perhaps this man would have survived a little longer in the hospital’s ICU in a thoroughly medicalised condition. But the ethical question is whether that was the best thing for his children to do.

Humanistic modern sensibility, conventionally Judeo-Christian in spirit [8: p 139], places high value on individual human life and its survival, come what may. It is perhaps important to recognise that such human-centrism does not have the same accent everywhere. While self-killing is forbidden by Indic religions, they do not forbid fasting even unto death to protest against injustice, human or cosmic, which we know Mahatma Gandhi practised as an effective political protest mechanism. Hindus also endorse cultural practices amounting to euthanasia: “the swift release of the soul of the dreadfully injured individual, marking a turning point in the individual’s karmic cycle” [18]. Samadhi Maran — also called Santhara in the Jaina tradition — is a practice of fasting unto death by refusing to eat and drink, which the Gandhian Vinoba Bhave undertook in 1982 and Veer Savarkar in 1966. One of the three stories of Anand Gandhi’s film Ship of Theseus (2012) portrays the ethical struggle behind the choice of Santhara. Purushottama Billimoria [18] suggests that perhaps the Indian (as opposed to the Western) reverence for life is “balanced by the principle of dignified death, an implication derived from the inevitable decay of all creatures.” He muses that “Hindu and non-Hindu Indians alike ask whether euthanasia is, in a given situation, a humane means of minimising the sufferer’s immense pain and continuing harm to her potential good hereafter—rather than bend to an ideology of deterrence inscribed in the outmoded colonial penal system still prevalent in India.”

Of course, in such cases of wilfully and contentedly refusing the conditions that sustain one’s life, the term “euthanasia” must be understood with care; what is sought is relief/release of the soul rather than good death or eu-thanatos, although such practices amount to choosing to die of one’s own accord. In any case, a large number of penniless Indians endure their dying as the lot designed for them by destiny because they have no resources to keep themselves alive with dignity [8: p 1, 19]. The debate about legally permissible euthanasia in India is often a question for the affluent. Who can fulfil the formalities stipulated for passive euthanasia by the Indian Supreme Court’s favourable verdict of 2018? The abysmal quality of death or end-of-life care index [19] raises a pertinent question: if seeking one’s own death within the legal framework is voluntary euthanasia, if seeking another’s death within the legal framework (because they cannot make a decision for themselves) is involuntary euthanasia, what name do we give to people who endure their dying because they cannot afford minimal end-of-life care? There is a need to count such unofficial, discounted, missing deaths (“euthanasias”?). This being the quandary we are in with the ethos of modern medicine, despite its great humanisation of healthcare, culturally specific ways of understanding life and death must not be undermined. The ethos of peaceful and happy acceptance of death and dying in the company of others seems to be a precious social practice that shouldn’t be lost with the invasion of the modern ritual of medicalised and lonely dying. I will now make a case for the same.

Dying-with-Others

A typical end-of-life care practice is the seemingly unproblematic practice of making the aged live in comfortable old-age homes. Such arrangements assume a strong sense of individuality, independence, and self-management of one’s own affairs in dissociation from others. They could, in less individual-centric societies, effectively turn out to be traumatising for the aged. If the core issue of the ethics of palliative care is the dignity of dying, end-of-life care practices in South Asia must encourage systems and conventions that contribute to mitigate the agony of sufferers, rather than mechanically reproduce practices and facilities that assume a different set of cultural sensibilities. Sufferings and joys are expressed and lived by people not in a blandly universal fashion, but through cultural codes, words, gestures, manners, and sensibilities. For someone with an elevated sense of individual independence and control of their affairs, living in an old-age home towards the end of their life is a perfectly self-enhancing option. But such is not the case with an average Indian. They have lived all their life among family members and grandchildren, unable to distinguish their individual selfhood from the way others affect their conception of who they are and what they can be.

Coming back to the theme of dying-with-others discussed earlier, the sociality of dying, it is evident that we can come to experience even our own death-angst only in our being-with-others. I cannot know my own death as I am no more there when my death comes about. My finitude dawns on me through the death of others just as the meaning of my world and situation in words are the gift of the other to me. Even for the one most confident about their insulated individuality and most comfortable with the loneliness of old-age homes, experience of death is a sharing in this sense. But the modality of that sharing and the way it is experienced and expressed is very different for the quintessential modern individualist and for the “unmodern” or “differently modern” villager, who is most at home in the familial ambience. Their dying-with-others is more literal. It is expressed in the sharing of pain and the pang of death, in suffering with others, and in being assured that they are loved, cared for, remembered, and commemorated. It is not that the typical individualist rebuffs company. Instead, they see community, company, and companionship differently — as an occasional role that they assume in order to be the best individual that they can be.

This being the case, it is desirable to have differential arrangements for end-of-life care of persons who more literally value and desire the familial atmosphere. But it might not always be possible to make such arrangements. The exigencies of the situation are such that people may have to be made to live, even against their choice, alone with a home-nurse at home or in an old-age home. Options are still there to make their life meaningful — by talking to them on the phone regularly, by meeting them at regular intervals, by providing them with the best of care, by inquiring about their special likes and dislikes, and by arranging friends and relatives to meet them when one cannot. I know of a Malayali nurse in the UK, who comes online every day and joins her parents and their home-nurse for night prayers. They seem to have found a happy rhythm. There are relatives to help in case of an emergency. All arrangements are regularly monitored. Kerala, a known remittance economy, where a considerable part of the working population lives outside the state, a contextually textured system of community-based palliative care and old-age homes is perhaps unavoidable. Together with that, there is also the need to cultivate a shift in cultural sensibilities about living alone, away from home, and without the hands-on support system of grandchildren and lively neighbourhoods. Without this shift, inescapable forms of living-alone towards the end of life might also be a reason for unrelievable suffering.

To conclude, our question has been: how to mitigate the loneliness at the end of life, the purported unshareability of dying? We first argued that the Heideggerian myth of the unshareability of dying cannot be sustained, for if sociality (being-with-others) is an inherent part of being human, then the sociality of dying (dying-with-others) must equally be so. Thereafter, we responded to the above question in two ways: by making ineffective socially and politically all attempts to exclude, isolate, and quarantine the dying, the aged, the terminally ill, and people who have no power over their affairs and abilities; and by making sure that people encounter their end in peace and in the company of those who matter to them, if they in fact prefer human company, as many do in contexts like India’s. In other words, the ethics of end-of-life care involves attempts to foil social death and attempts to foster compassionate ways of caring and sharing the pain of dying towards the end of life. In this way, death makes it possible to share the unshareable.

Acknowledgment: The author gratefully acknowledges the helpful comments and editorial interventions of the IJME peer-reviewers and copyeditors.

Conflict of Interest: The author has not declared any conflict of interest.

Funding: This study was not funded by any sponsor.

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