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Lingering, not living

How do we face the burden of mortality? Three recent books question the medicalization of old age.

By Julie McGonegal

My great-aunt Milly Clement died two summers ago. A feisty woman who had led a self-sufficient life in rural Ontario, she felt deeply the shock of adjusting to a sterile nursing home. Feistiness is an admirable trait in the young, but the elderly are often dismissed as cantankerous. Milly was considered a troublemaker in the seniors’ home. “Let me die alone in the bush,” she would rage. Instead she spent nearly a decade exclusively indoors.

I was reminded of my aunt’s futile protests as I read And the Birds Rained Down. Jocelyne Saucier’s bewitching novel, a contender for this year’s CBC Canada Reads, tells the story of three octogenarian men who fiercely reject the old-age home for the open backcountry, escaping into northern Ontario’s hinterlands to live out their remaining days on their own terms. The men play a cunning trick on society, erasing all evidence of their former identities in a valiant effort to protect their freedom. As readers, we rally behind them, cheering their plan to write the stories of their own lives and to make choices according to their own priorities. We laugh along with them, “giggling like kids at the idea of this blow against all the social workers of the world who wanted to lock up old men in old folks’ homes.”

But deep down, we are terrified by the knowledge that we will likely have our autonomy taken from us as we age. Saucier’s premise draws on the cultural fantasy of fleeing the all-but-inevitable — the dependency and decrepitude of old age. This fantasy indicates something disturbing about today’s reality: the medicalization of sickness and aging is paradoxically costing us our humanity.

In Being Mortal: Medicine and What Matters in the End, Atul Gawande wrestles with this quandary. “The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit,” he laments. “They are spent in institutions . . . where regimented, anonymous routines cut us off from all the things that matter to us.” Mortality, he contends, is a medical experiment — one that is utterly failing.

Gawande’s eloquent history of the modern treatment of aging is shot through with anecdotes drawn from his professional experience as a Boston-area surgeon and his experience of losing a parent to cancer. Stories of people ridden with incurable diseases, with months to live at most, persuaded to undergo dangerous and invasive procedures that stand no chance of giving them what they want — their strength, their dignity, their previous life — dovetail with stories of professionals unable to speak the truth to their patients or to face the limits of their own capabilities. 

Tolstoy’s classic novella The Death of Ivan Ilyich, in which the titular character suffers an unknown affliction, is instructive for Gawande. “What tormented Ivan Ilyich the most,” Tolstoy wrote, “was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result.” Gawande’s claim that such deception is at the heart of our contemporary medical system may at first seem far-fetched. By the end of his treatise, it does not.

How did we come to perpetuate this myth? In the same way that old age isn’t the experience of a single challenge but the burden of many cumulative losses and shortcomings, our society’s treatment of aging confounds simple explanation. Rising life expectancies and scientific advances play a role, but so too do the erosion of the multigenerational family, the veneration of the independent self, the shortage of geriatric doctors and so on. The so-called solutions we’ve devised — hospitals, nursing homes, assisted living — aren’t thoughtfully engineered responses to a complex situation but rather knee-jerk reactions to other kinds of social problems. As Gawande puts it, “The modern nursing home developed . . . more or less by accident.” 

We have ended up where we are in our treatment of aging because of an absence of public imagination. Any alternative visions rooted in the desire to make life worth living have been diluted or destroyed by a well-intentioned but misguided emphasis on safety and survival above all else. Safety is important, but so too is sustenance of the spirit. It is precisely in treating people’s medical needs without attending to their human needs that our modern experiment with mortality is a failure. 

While an overhaul of the current system is urgently needed, there are things one can do to enhance individual care. Gawande wholeheartedly endorses patient discussions with physicians, family and friends about end-of-life preferences, which lower the likelihood of an invasive procedure and heighten the chance of hospice care.  

What his practical optimism conceals is the reality that the good death is ultimately an illusion. The protagonists of Saucier’s novel come to understand as much. The narrative’s utopian plot gradually turns dystopian; love is unexpectedly found, but in a subversion of the Romeo-and-Juliet story, we learn that tragedy lies not only in the senselessness of death, but also in its inevitability. 

Such too is Eve Joseph’s insight in her exquisite book In the Slender Margin: The Intimate Strangeness of Death and Dying, a collection of scattered musings that shine a poetic eye on personal loss and the author’s two decades of experience working in palliative care: “There is no promise of a good death — with or without somebody to help us in our last days; there is only our perception of what our death might be. In the end, there are no definitive answers.” The great mystery of death makes it rich terrain for philosophers and artists, but an unsolvable problem for medical practitioners.

Julie McGonegal is a writer and editor in Barrie, Ont.

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