Confronting death: Doctors on mortality

(This article is a part of the web-exclusive series from our latest issue 'At the cost of health'. More from the print quarterly here.)

Impending death is never a pleasant subject to mull over. However, it does raise generic concerns about the very nature of our existence and the meaning of it all. Who are we? What do our lives reveal about ourselves at the end of the day? Could we have lived life more meaningfully? What happens after death? Our reveries may lead us to uncertain destinations and we quickly cease concerning ourselves with these thoughts as the quotidian has a manner of imposing itself on the transcendental in more ways than one.

Is this any different for those entrusted with the everyday task of saving lives? Doctors who save lives from fatal illnesses are no strangers to death. One might justifiably assume that this has a numbing facet to it. After all, if they grieve just as much as the families and friends of people lost, they would be paralysed, stuck in prolonged bouts of mourning and inaction. Don't we tend to expect them to go about their regular tasks with a semblance of equanimity? Death appears to be passé in one sense within medical practice as life goes on as one presumes it has to. Arguably, it does not warrant deliberation beyond the immediate existential loss and ruminations of those who may be returning from a funeral of a dear family member or close friend lost.

The intent of this review essay is to draw attention to three fine voices from within the trenches of the medical profession, who adroitly shake this complacence about mortality through personal example. Paul Kalanithi (When Breath Becomes Air) and Oliver Sacks (Gratitude) are both no more after their battles with cancer under very different circumstances and phases of their professional and personal lives. Atul Gawande (Being Mortal: Medicine and What Matters in the End ) grapples with the mortality of his father as he watches him slowly deteriorate in health after mounting a spirited fight. He also chronicles the lives of several patients dealing with the prospect of their own ends. While there are some overlaps between the three interventions, each of them in their own inimitable style raise a number of concerns that compel us to rethink our staid assumptions about mortality.

These concerns encompass the state of play in terms of available medical care, especially for the aging and dying, comforting those who are faced with terminal illnesses, institutional design innovations that might improve the situation on the ground, and ultimately the effort to change overall societal attitudes towards those who are lurching unfailingly towards the inevitable. The three books under consideration here merit individual attention in their own right. However, we shall return to some general questions these books pertinently raise for all of us, including for those inhabiting the medical landscape of Southasia. Let us first plunge into Kalanithi's account.

When Breath Becomes Air traces its lineage to an earlier essay by Kalanithi that was published in the New York Times in February 2014 titled 'How Long Have I Got Left?' While the essay generated a great deal of public attention and sympathy, Kalanithi's subsequent book length account of his battle with cancer is equally riveting. This is a moving account of a doctor who is on the cusp of advancing in his career as a neurosurgeon after years of backbreaking perseverance when he is diagnosed with cancer.

His wife Lucy Kalanithi who is also a doctor remains right till his end an enduring source of support. They jointly take a decision to have a child after Kalanithi was diagnosed with cancer. Aware of his imminent and irreversible fate, he conveys a beautiful message to his daughter who he imagines would one day read his book. He writes "when you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more but rests, satisfied. In this time, right now, that is an enormous thing."

What makes Kalanithi's contribution especially penetrating is his discussion of a fundamental metamorphosis – from doctor to patient. The lenses through which he now views the medical profession are different. It leads him to the rather telling indictment of "how little … doctors understand the hells through which we put patients." There are two clear lessons that emerge from this new vantage point. Kalanathi points out that statistics scare rather than assuage anxieties of patients and that doctors need to convey hope to patients even when the medical condition appears technically insurmountable.

Kalanithi is also candid about his fluctuating state of mind when he was diagnosed with cancer and subsequently devises strategies to cope with it. These relate directly to the repertoire chronicled by Elisabeth Kübler-Ross and David Kessler in their book titled On Grief and Grieving: Finding the Meaning of Grief through Five Stages of Loss. Commencing with 'denial', Kalanithi is faced with a slew of competing emotions – 'anger', 'bargaining', 'depression' and eventually 'acceptance'. While these might give the impression of being stereotypical, he resides in all of these spaces in a manner of his own choosing.

From the perspective of humanities, what makes Kalanithi's story particularly rich is his love for the written word. Abraham Verghese, who wrote the foreword for this book, highlights, among other elements, the persuasive stylistic elements of his prose. Kalanithi makes his love for literature evident and acknowledges his mother's role in instilling an early and deep affection for books. However, while he decides to pursue literature in an English Department, he realises that the setting is not what he had hoped for, which eventually culminates in his decision to pursue medicine with a good dose of 'serious biological philosophy'.

The other tack that is of potential interest to the reader is Kalanithi's emphasis on self-identity. He argues that "…neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of ourselves, and every conversation with a patient undergoing brain surgery cannot but help but confront this fact." The book is at many levels about Kalanithi's own morphing body physiology and identity as well as his outlook on life with each passing moment as he heads to his own eventual demise.

There are a number of other valuable insights that the reader might glean from engaging the book. The discussion on the limits of science is illustrative. He suggests that "science may provide the most useful way to organize empirical, reproducible data, but its power to do so is predicated on its inability to grasp the most central aspects of human life: hope, fear, love, hate, beauty, envy, honor, weakness, striving, suffering, virtue." Science is not alone in this respect. He is of the view that there is "no system of thought can contain the fullness of human experience."

Finally, Lucy Kalanithi suggests in her epilogue to the book that his "…decision not to avert his eyes from death epitomises a fortitude we don't celebrate enough in our death-avoidant culture." Equally poignant perhaps is the realisation that "we all inhabit different selves in space and time."

Sacks in many ways echoes with equal aplomb and panache the finer sensibilities that Kalanithi brings to bear in his account. Once diagnosed with cancer, Sacks take stock of his life and comes to the candid realisation that he has to in the limited time available "… to live in the richest, deepest, most productive way …". He is keen "trying to straighten [his] accounts with the world". The overarching sentiment however, is one of 'gratitude', which also provides the title of this collection of essays posthumously published.

Sacks' own life never had a boring moment as his recent longer autobiography On the Move testifies. There are four fine essays that find their way into Gratitude. These include 'mercury', 'my own life', 'my periodic table' and 'sabbath'. Each of these essays is crafted with great élan and substance while offering an excellent vantage point to examine his overall perspective on mortality.

Self-identity here again is an important trope as Sack scrutinizes his life closely in each of these interventions. Sacks at eighty is reminded of his father who particularly enjoyed that phase in his life. He had argued that it culminated in "…not a shrinking but an enlargement of mental life and perspective". Sacks own audit throws up a few regrets. He observes candidly that he is "… sorry I have wasted (and still waste) so much time; I am sorry to be so agonizingly shy at eighty as I was at twenty; I am sorry that I speak no languages but my mother tongue and that I have not travelled or experienced other cultures as widely as I should have done." However, the tone in all these essays is generally upbeat, brimming with optimism and a deep love for doggedly pursuing all the curiosities that have informed Sack's own journey.

When it comes to 'my own life', Sacks clarifies his stance of 'detachment'. He confesses that he "… still care[s] deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future." Most critically the sentiment of gratitude returns when he claims "I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure."

Loss is another theme that remains a leitmotif in his piece titled 'My Periodic Table'.  Sacks contends that loss has prompted a "…turn, or return, to the physical sciences, a world where there is no life, but also no death." Finally, in 'Sabbath', Sack reveals his close to ascetic pursuit of chronicling with great care the stories of his patients which led to his signature contribution, the restoration of poignant and insightful 'medical narratives' – a lost art form ever since the "…great neurological case histories of the nineteenth century."

The most scathing institutional indictment of the inadequacies of medical care when it comes to aging and dying is embodied in Gawande's book length intervention Being Mortal. Beginning with recounting his own socialisation into the medical profession, Gawande contends that he was not taught anything specifically about mortality. He observes that his own early practice revealed through a specific episode "…how much we all avoided talking honestly about the choice" before patients faced with terminal illnesses. The paradox inherent in Gawande's narrative is that while on the face of it, given general technological advances there is "…arguably no better time in history to be old", the truth remains that "…few societies have come to grips with the new demography."

Gawande echoes Lucy Kalanithi when he gestures to a society that is averse to coming to terms with death. He argues that very little thought has gone into "…how to make life worth living when we're weak and frail and can't fend for ourselves anymore." Further, the big failure according to him is that "medical professionals concentrate on repair of health, not sustenance of the soul."

Gawande's book bristles with sensitivity to the plight of the aging and dying. His interest is in focusing attention to their needs and making the case for an overhaul in terms of institutional design when it comes to addressing their needs in a compassionate and humane fashion. The current system globally and particularly in the US (Gawande's principal theatre of attention here) is quite evidently ill-equipped to deal with the situation.

A particular facet of Gawande's argument also relates to levels of economic development in different countries of the world and the kind of treatment one could hope to expect as a consequence of that. Drawing on existing scholarship, he suggests that in both poor and in economically affluent societies, people tend to die not in hospitals but in their homes. In the former, this is because of a lack of capacity to afford treatment at a hospital while in the latter case, patients can afford doctors visiting home during their final stages. It is the intermediate category of middle income countries, where patients seem to die largely at hospitals.

The book is littered with a generous sprinkling of illustrative cases of aging and dying patients and how they deal with their severe medical challenges in the absence of decent institutional remedies to their problems. Gawande nails the problem when he claims that "…our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer: that the chance to shape one's story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for last chapters of everyone's lives." Ultimately, "people want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms." However, given the current state of medical disrepair, this appears to be a luxury denied to most.

When you read these books together, what is striking is the overlap in terms of how they all come to treat life in relation to impending death. Each of them in their own idiom attests to the richness of life and the need to live it well. Kalanithi as Lucy claims was willing to see death in the eye. Sacks prepares for his Sabbath with a profound sense of satisfaction. Gawande through the chronicles of aging and dying people conjures for us a vision of what appears to be most sacred to them. There is urgency in Kalanithi's account given that time is running out fast. Sacks shares some of this anxiety but thanks his good fortune that he has been able to live a long life well. Gawande's narrative also has an urgency and zeal to it, especially when he comes to don the public health policy prescriptive hat.

The three books raise a number of interesting questions that are perhaps worth probing further. First, it is evident from their accounts that different cultures approach aging and death differently. One does not have to be a seasoned anthropologist to know this. Second, it is tempting to ask what remains the most essential to cling on to when one is sinking? For Paul Kalanithi it was being surrounded with close family, to Sacks his thoughts on the Sabbath make him nostalgic about his childhood and the Hebrew chants he enjoyed without being a firm believer. The many patients Gawande speaks to seek diverse forms of retreat. There is quite evidently a subjective dimension here.

Reading these books got me thinking about Southasia. Besides the brute medical infrastructure challenges, we need to ask ourselves how we treat our old and dying. Notwithstanding the general premium placed on age in Asian societies, the attenuation of joint families seems to be more the norm than the exception, particularly in urban settlements. New old age homes are mushrooming in parts of Southasia. Parents who have been abandoned by their children are no longer as rare a reality as it once used to be. The stigma associated with such callousness appears to have whittled down. There are potentially significant differences in how death is viewed and received in rural and semi-urban settings. How does religiosity mediate the last days of one's life? All of this suggests that coming to terms to death here also throws up its own autonomous milieu challenges and these books are perhaps timely reminders of what needs to be done to lend far greater dignity to those aging and dying in our immediate precincts. It could also serve as a plea for a more enlightened discourse within Southasia on how we may address the sheer challenge of scale given the large number of people who are growing old and are faced with the prospect of death.

Stylistically, all three books make for enticing reading. Kalanithi's account is deeply touching and finely chiselled. Sacks leaves you hungry for more and Gawande communicates like a friend in the room with consummate ease. Since all three books are autobiographical in nature, what makes them appealing is the worlds they explore in straddling both their personal and professional lives. Paul Kalanithi's equation with his family, Sacks condemnation of religious bigotry when it is visited on him in his mother's hostile judgment of his sexuality, and Gawande's concern for his father are all conveyed with great finesse in these interventions.  While Kalanithi's book is just optimal in terms of length, Sacks is short and pithy while Gawande's account could have done with fewer stories to advance his case – it's a tad too long.

However, on balance all three interventions are absolutely first rate additions to the literature and must spawn further thinking on how we confront death in our own lives and in our immediate environments. It would be wonderful to be able to see similar accounts from doctors in Southasia on this theme and critically examine in what respects context complicates our reading of mortality. How do the filters of history, memory, language and culture shape our collective attitudes towards mortality? What is the chasm between cultural beliefs and actual practice? What do we feel more at ease with and what do we feel less at ease with vis-a-vis the advanced capitalist economies when it comes to coping with death? What is clear to me from these fine accounts is that we can no longer afford to push these concerns under the carpet. What we need is far greater empathy, both individually and institutionally when it comes to dealing with those who are aging and preparing for closure in one way or the other.

~ Siddharth Mallavarapu currently teaches International Relations at the South Asian University based in New Delhi.