Friday, June 5, 2015

For a Happy End

On 17th October last year, dad was admitted to the MC hospital for a probable infection. He had become extremely weak, foggy, sleeping 16 hours a day, and had difficulty recognising people and raising himself up from the bed without support. We were not unduly perturbed though. After all, it was the fifth time in the last twenty months, since his dialysis started, that we needed to take him to the hospital in similar bodily conditions. Each time, while he had gone in seemingly irreparable, he had come out fine, though further weakened and emaciated. 
This time however, on the very first day, he was shifted to the Intensive Care Unit (ICU) as both his blood pressure and sugar were sinking. He was put on a ventilator on the same day with artificial respiration, and started with heavy dose of broad spectrum antibiotics. He seemed to respond well, and two days later, he was taken off the ventilator. That evening, when I asked dad if he recognised me, he exclaimed, with a thin smile on his face, ”Quite well, Yasir Ali." As it happened, these were the last words that I heard from him. He went back into that foggy state two days later, and was put on ventilator again. We got fifteen minutes daily in the evening to see dad in the ICU. I went in there with fear and nervous anxiety. The sight was grislier each time. There were more tubes connected to him, face contorted, body bloated, and the whole countenance deathly pale. I prodded him, with increasing desperation and anger, getting usually an exasperated wheezing as a response.
A week into the ventilator, as we felt dad slipping away, and mom on the verge of a breakdown, I tried to initiate a straight-forward conversation with the principal physician. Do they understand what is happening? Have they seen any improvement over the last few days? Is there anything more that can be done technically, that is not possible in this hospital? Is dad suffering? Is he now on a path of no return now, and dying? Should we then remove the ventilator?
The physician was old and kindly, but insular to feelings. He assured me that they were doing the best that was possible anywhere. There was absolutely no improvement in dad’s condition but no deterioration either. They could not stop his treatment or take him off the ventilator. The purpose of medicine was to save lives. Stopping the treatment was wrong, ethically and legally. They still had hope and there were few more things that they wanted to try. 
I should have been happy about the outcome of the meeting. But it made me despondent. Dad’s body had withered and shrunken like a dead tree. When his eye lids were pulled up, there was no life left in his pupils. I felt it in my bones that doctors were giving false hopes and dad was dying. I wanted a way to reduce his suffering. And I was also worried, and ashamed to be worried, about the financial consequences of this long stay in the ICU. Till when would my insurance last? But then, could we really be sure that dad was irrecoverable?
Dad ultimately died one week later at home, barely three hours after he was taken off the ventilator at hospital and put on a bipap (a kind of portable ventilator with less support). Death is not a tragedy but an inevitable reality. But this was the first time that I had been through the process of dying. It was as if he had just drifted further in that deep sleep, and slipped into oblivion.
The man who had died was not the man I had known all my life. My father had left his feudal household and town when young in search of life and career. He was beholden to books and poetry and ideas, and had nurtured his mind with free inquiry. Friends, conversation and laughter gave his life colour. Freedom - physical, financial, intellectual, spiritual - defined him. Seeing such a fiercely independent, alive, non-conformist man die such an ordinary, degrading death broke me. Was this how we are all condemned to end?
Till I read Atul Gawande’s Being Mortal, however, I did not know that any alternative ending was indeed possible. But, clich├ęd as it may sound, just there is an “art of living”, there may well be an “art of dying” as well.
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In retrospect, the trajectory of my dad’s last two years, and further last three weeks, had a pattern that has become all too familiar in the modern context. In at least the more affluent classes of the world, a profound change has happened in the last fifty years - we live longer and die slowly.  
We have a great deal to thank modern medicine for extending the limits of mortality so significantly that we take much of it for granted now. Till about a century back, life expectancy was under fifty throughout most of the western world, while still being under thirty in lesser developed countries. As Gawande puts it, “It didn’t matter whether you were five or fifty. Every day was a roll of dice.” Mortality was common and sudden. A simple infection was enough to end you in a day or two. 
What it meant was growing old was a rarity and a privilege. Old people occupied positions of high honour and prestige, and were treasured for their experience and wisdom. This began to change dramatically from 1930s onwards, with the average life expectancy steadily increasing globally. As a consequence, more than eighty years later now, in many developed nations, people aged more than sixty five now form more than twenty percent of the population. This is an inevitable condition for all countries, even ours, which boasts of a “young population” as of now. 
The dynamics of longer lives along with more mobility has meant that old age has lost its reverence and more individuals are living alone. This may seem an absolute disaster to family-oriented Indian lives, and a Western phenomenon. However, interestingly, cross-cultural research has shown that, East or West, given the opportunity, people have preferred to abandon the older way for the new. Family life may have suffered, but individual aspirations have got a new lift with this independence.   
This phenomenon of living alone, without kids, however starts costing us as we grow older, and gradual wear and tear of the body sets in. There is apparently no one reason, “no single common cellular mechanism”, why our bodies break down. But there is a common enough set of major/minor fixing of the body that almost everybody beyond a certain age goes through now - cataracts removal, false teeth, prostate, knee/hip replacements, dialysis, pace makers, et al. And as our physical and mental capacities shrink, we find it increasingly difficult to stay put and manage simple daily matters of living. Quality of life, as we know it, goes on a steadily downhill path.
Our experience of ageing, much more pronounced in the developed world, also shows that we have not accepted or adopted to these new conditions very well. In our long history of settled life, after all, this “new condition” is still not more than half a century old. Popular culture addresses it with plain denial, with attempts to negate all it’s overt manifestations in hair, teeth and skin. It feels so much better to declaim that spring of youth is eternal than worry about the ravages of old life. But this denial and not thinking about old age has ultimately led to creation of social and institutional mechanisms - old age homes, nursing homes, ICU support - that are medically designed and not keeping the affected people in mind. 
Nursing homes are the most representative of these institutions. They were essentially created to empty out the hospital beds since hospitals were unable to cope with the increased elderly who could not take care of themselves. Key priority was, and remains, safety of the elderly, maintained through a strict enforcement of well-defined rules and procedures. Gawande’s descriptions of these places - small, shared rooms with bare essentials, white-fresh linen, spotless corridors with sputtering, barely walking people, manicured lawns, precisely defined times and areas for sleeping, eating and playing - evoke the dystopian, depressing and ultimately totalitarian world of a Stanley Kubrick movie quite magnificently. Getting into a nursing home seems akin to losing all privacy and autonomy, and the likeness to prisons and mental institutions is rather hard to miss.
The end, when it comes, happens typically in forlorn ICUs in prolonged agony, whose experience Atul Gawande captures poignantly, “Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realising that you will never leave this borrowed, fluorescent place.”
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The premise of “Being Mortal” is deceptively simple, and addresses this modern scourge head-on - can life be lived meaningfully till the end, under physically and mentally dwindled circumstances?
To understand this book however, we first need to know something about the person behind it. Atul Gawande was born of immigrant parents, both doctors, in America. He is a practicing surgeon, and when he first started writing about his experiences, his fellow surgeons were disconcerted by his frankness. For one, he did not shy away from talking about his fears, anxieties, or even failures on the job. In one of his early pieces for New Yorker, he admitted to “nearly killing a woman on his operating table because of inattentiveness.” To his colleagues, it revealed too much about the uncertainties of a profession that usually has a God-like aura around its invulnerability. Philosophy and politics are his other interests, besides medicine, for which he has an abiding passion. He is curious with a healthy irreverence towards the omniscience of science and progress.
 “Being Mortal” is his fourth, and most ambitious, work so far. In this book, he turns the complex issues of ageing on its head by bringing the usually passive, individual subject at the centre. Although meticulous in his research, his primary method of argument is that of the narrative. It critiques the medical way of approaching old age, and says, “The problem with medicine and and the institutions it has spawned for the care of the sick and the old is not that they have an incorrect view of what makes life significant. The problem is that they have had almost no view at all.” 
This view, if any, is governed, in the main, by the priorities of keeping the elderly safe. This sounds noble enough from the perspective of the care-givers. It is also given strong philosophical underpinnings by Maslow’s highly influential “theory of needs” that places safety and survival as the most basic of all human needs. Seen from the eyes of the people being cared for however, it reduces life to a ship whose moorings are forever lost from their hands. 
Karen Armstrong has shown, in remarkable books centered on religion, myth and spirituality, that human beings are a curious, meaning-seeking creatures. We often willingly forego “safety and survival” to do things that we see as larger than ourselves - nation, community, even small personal projects. This “theory of loyalty”, as also propounded by the philosopher Richard Dworkin, does not fit the mainstream narrative of self-interest guiding all our rational choices, and is thus looked upon with suspicion when it emerges in different forms.
In Being Mortal, Gawande argues persuasively that for us to retain meaning in our lives, we essentially need the freedom and autonomy to shape our respective stories. This comes out fundamentally in terms of choices that we leave for our elderly and sick, even as they rely more on their care-givers to perform basic functions.
As Gawande shows, particularly when it comes to treating terminally ill patients, the focus of modern medicine is persistently to do more - surgeries, experimental treatments, critical care - with the basic aim to avoid mortality. On the other hand, research shows that priorities of people with serious illness are much more than prolonging life, such as “avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.”
This is of course a difficult argument to make, and can easily slip into asking for an “easy death” rather than struggle for “better life”. Gawande’s argument is more subtle though. It focuses on the softer aspects of critical care in which hard conversations, rational choice, and reduction of suffering have as important a role to play as the actual treatments – and where doctors help their patients interpret the choices they need to make. The choice is not between life and death. It is to do with prioritizing what is most important for the critically ill at the end of life, and choosing a better course.
And these are the kind of discussions that my father would have liked. When his dialysis started, we knew that time before him was finite. Dialysis is not a cure. It is only an artificial support that replaces what kidney does - remove waste and excess water from the blood. All that we understood was that this was the only option with dad’s both kidneys failing, and that people survive for years with dialysis. That it is but a minor distraction, and life would move on as usual.
But it all started falling apart from the beginning. Dad did not take very well to lying straight for four-five hours in the hospital, and have his blood flow through tubes to get cleansed. He was so tired by the time it ended each time, that he had to be literally carried up to our third floor home. He was no longer able to read, think, go out, and after some time, even sit up in bed without support. When the frequency increased to thrice a week, more than once, he expressed his frustration and desire to quit - that we of course never took seriously.
I believe that at that point, it would have helped if his doctors (along with family) were to have a frank discussion with dad on following lines. What are his most important priorities? How much is he willing to suffer for prolonging life? What would make living not worthwhile for him anymore?
These are difficult conversations, but Gawande shows, with both proven research and personal stories, that successful resolution of these questions have helped make end of life better. “Palliative care” is one of the specialised medical care that Gawande illustrates as one of the alternatives to improve quality of life in the end. Palliative care is a multi-disciplinary approach, with goals that are not curative but focused on relieving the patients of pain, tiredness, physical stress and making their lives as active as possible. It involves giving up aggressive treatment, and may seem to quicken death. But a landmark 2010 study for the terminal cancer patients showed astonishingly that those who saw a palliative care specialist “stopped chemo sooner, experienced less suffering at the end, and lived longer.” It surely does not result in dying in a diffused state on a ventilator.
In spite of having a strong western social and healthcare context, Being Mortal offers valuable insights for the world we are moving towards, and is deeply affecting and moving. It is a marvelous meditation on the limits imposed by the human body, and what social and moral pathways are required to address it. In spite of the deeply morbid and sometimes depressing subject matter, it ultimately has a supremely positive outlook towards the possibilities of life. 
Being Mortal also reminds us that our stories have to end well to be truly meaningful to ourselves. And this is a real possibility even in modern life.

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