AUGUST 2, 2015
The following essay is part of the Los Angeles Review of Books special series “No Crisis”: a look at the state of critical thinking and writing — literary interpretation, art history, and cultural studies — in the 21st century. Click here for the full series.
THE NO CRISIS SERIES asks us to think about the interpretative work of the humanities. Doing so has made me think about a broader topic: the interpretive work of being human.
It was a late summer night when my elderly mother called the police to report a man in her basement. They responded in force but found no evidence of an intruder lurking behind the furnace. That night might have offered up just another zany Mom story (the latest in a long and entertaining history) had my mother not asked the officers on their way out: “The man — don’t you see him? He’s standing right next to you.” It was off to the emergency room for her, where she was eventually diagnosed with chronic dehydration and UTI, a urinary tract infection common in elderly women and known to make one more than a little loopy. A one-two punch of antibiotics and rehab will bring her back to baseline and back to her old self, the doctor assured us. Unless, he added casually, her baseline was actually dementia and the infection simply made the neurocognitive disorder worse — only time will tell. Say what?
One year, two hospitalizations, and months of in-home elder care later, my mother’s “baseline” has become more obvious and her basement a whole lot more crowded. As the weather turned cold her imaginary subterranean dweller brought his whole family to gather around the warmth of her furnace. Lately he has ventured upstairs late at night to sit on my mother’s recliner, keeping watchful company as she sleeps. In return, she leaves blankets and food for “the people downstairs,” helping them survive in greater comfort. It’s a Dickensian tale writ small, playing out in the mind of a kind, befuddled woman no longer able to remember her children’s names but determined to help a hungry and homeless family.
My mother’s dementia did not appear overnight. The signs had been there, but neither myself nor my siblings — despite our combined learning, despite my own training in interpretation — knew quite how to read them: some rotting food in the refrigerator, occasional dirty clothes on the floor, and (we eventually discovered) months of unpaid bills, undeposited checks, and an expired credit card. She had lost some weight, but that appeared to be a good thing. She wasn’t telephoning her children anymore, but when we asked why she explained she was quite busy. When her speech problems emerged, along with an inability to remember names, we wondered if that mysterious fall last year was actually a small stroke. We had a dozen reasonable explanations for her changes in personality and odd behavior. Dementia had never crossed our minds.
So it came as a shock when her general care practitioner informed us that indeed my mother had dementia and she needed immediate round-the-clock supervision. She should not be allowed to walk unaccompanied (what if she fell?), nor should she be alone at night (again, what if she fell?). Had we considered assisted living or a nursing home? The message was delivered with all the subtlety of a judge’s gavel: “the name of the game is safety,” and it was time for we children to wake up, take control, and decide our mother’s future. A crisis was at hand.
How did Mom feel about all this? She certainly didn’t feel she was “in crisis.” Nor did she feel or behave like an invalid. Overall, her lifestyle was, and still is, a happy and healthy one. She spends her mornings eating nutritious brunches and perusing the newspaper, her afternoons reading magazines or napping, and her evenings enjoying all things HGTV. The center of her day, and reason for getting up in the morning, is her beloved dog Daisy, whose companionship gives her unending joy. Aside from some benign hallucinations and not so benign anxiety late in the day (known as “sundowning”), she likes her life and cherishes her independence. At this point she welcomes help with bills and food shopping, generally manages her day with no trouble, and hates being patronized. Hello, hello she chastises every time a doctor presumes to talk over her head to address us instead. I’m right here.
My mother is not unaware of what is happening to her — her loss of memory, difficulty with names, confusion with numbers, bouts of agitation. Sometimes even she wonders if those people taking up residence in the basement might be delusions. Most heartbreaking to me are her moments of absolute clarity: “I’m me but I’m not me.” Yet, while her “not me” moments have sometimes made her more anxious, they have not made her suddenly helpless. So who are we to take her independence away from her? Is either assisted living (which she can’t afford) or nursing home living (which she can’t imagine) really the best or only option? Why should safety be prioritized over everything else, including happiness? Is an institutional life of restricted physical mobility, reduced personal liberties, and rigid daily schedules — in other words, a world stripped of all life’s homier pleasures — really worth living?
In the midst of our fretful family conversations, Atul Gawande’s Being Mortal: Medicine and What Matters in the End arrived like a gift from the elder care gods. If such a class of divinities existed, Gawande, a Boston cancer surgeon and staff writer for The New Yorker, would be a modern Apollo, Greek god of both healing and poetry and an oracle deserving of the name. Winner of a MacArthur “genius” fellowship, Gawande plays for high stakes. All four of his published books address ambiguous medical situations and what to do about them, whether it’s how to deal with surgical surprises (Complications), how to make sound life and death decisions (Better), or how to use simple checklists to avoid harming others or ourselves (The Checklist Manifesto). Being Mortal, which brings a bracing levelheadedness to complicated end-of-life questions, is his latest and most successful attempt to show doctors how to stop making preventable mistakes, and patients how to start making informed decisions. It’s a winning combo.
Gawande is a terrific writer with a rare gift: communicating hard truths in a way people can actually hear. This talent is on full display in Being Mortal, a beautifully conceived, remarkably helpful, and unexpectedly delightful book on the realities of infirmity and old age. Gawande has a powerful message for doctors and patients alike: even the frailest among us have the right to live a fulfilling, satisfying life right up to our last dying breath. And for the families of those too weak and infirm to continue as they have, his message is even more pointed: our role is not to take away our loved one’s options but to determine how he or she wants to live given their limitations. The choice must be theirs; our job is to do what we can, within our own limitations, to make that wish a reality.
Such advice may sound commonsensical, even obvious, but it is rarely heeded. People have always hoped to die where they live, but, as Gawande notes, by the 1980s only 17 percent of deaths occurred in the home. In the past half-century the majority of Americans died in nursing homes or hospitals, largely because advances in science have led us all to believe that mortality is fundamentally no longer a human experience but a medical one. Even now, despite the rise of hospice facilities, in-home care, and other attempts to make humane improvements to end-of-life treatment, we are far more likely to die amongst medical professionals than our own family. Gawande acknowledges that historically there is no better time than the present to be old. But it is not at all clear that there is no better time to die. Dying away from home and surrounded by strangers is hardly anyone’s definition of a good death.
Some readers may be surprised to learn that dying of old age is actually a relatively new historical experience. Gawande explains that as recently as 200 years ago death rarely waited for the natural wearing down of the body and its attendant loss of muscle mass, lung capacity, and motor neurons. You were lucky to make it to age 30 at a time when dying of old age was an uncommon event, and the elderly, as a result, were deeply revered. Now, as the average life span in America zooms past 80, we have in effect lived well beyond our expiration dates, and the end is not yet in sight. According to the government’s 2010 census, the elderly population will double in the next 35 years.
Are we prepared to care for so many aging citizens? Not even close. The most startling fact reported in Being Mortal, a book that responsibly takes pains to marshal its evidence, is that while the number of seniors in this country has grown exponentially, the number of geriatricians has actually fallen (more than 25 percent in the past couple of decades). To his great credit, Gawande, who also teaches at Harvard Medical School, gives a completely candid diagnosis of how and why medical schools are failing the elderly: geriatrician incomes are amongst the lowest in medicine; doctors tend not to appreciate patients who compromise their reputations as skilled healers by routinely dying on them; old people, who may be deaf, blind, forgetful, or just plain ornery, can be tough to work with and take up considerable office time; and end-of-life care is not exactly the sexiest field in modern medicine, lacking the star power of specialties like cardiology or plastic surgery. Perhaps the greatest culprit is that in a culture that worships youth, nobody, not even a doctor, enjoys constant reminders of the stark reality of aging and the inevitability of mortality. Ninety-seven percent of medical school graduates have not taken even a single course in geriatrics, which is why it’s already too late to produce a new generation of geriatricians to handle the tsunami of elder care coming our way. Thankfully though, Gawande does have an elegant solution: send some of our current specialists in geriatrics into every medical school, nursing school, and school of social work to train a whole range of medical professionals to begin working together to provide quality healthcare for one of our most vulnerable population groups.
The average American spends a year or more of their so-called golden years in a nursing home — the very name enough to inflict terror in people of any age. To this day my image of a nursing home is colored by May Sarton’s deeply affecting 1973 novel As We Are Now, an unforgettable and chilling portrait of the sad indignities of living and dying in a home for the aged. Spurred on by the birth of Medicare and Medicaid in 1965, the nursing home was America’s answer to the horrors of the almshouse, charitable dumping grounds for the poor and the elderly. But Sarton viewed the soon-infamous “Park and Die” facilities as no different than other failed institutions: they are jails only worse since there is no hope for release; they are orphanages where accidental falls are treated as misdemeanors and punishment comes in repeated acts of infantilization; and they are asylums where everyday emotions like anger or irritation are immediately read as symptoms of senility. In Sarton’s self-proclaimed J’accuse, the nursing home is our national shame: “a concentration camp for the old.”
Sarton melodramatically ends her novel with the elderly protagonist deliberately blowing up her nursing home, with herself and everyone else in it. Surely there are better ways to make a dreary and dismal institution disappear. Gawande is somewhat reassuring on today’s nursing homes, which he believes are not the Dickensian places they used to be. Even the poor, he writes, can expect from a nursing home regular meals, doctor visits, and physical therapy. But are such anemic environments really adequate? Do they feed the soul or stimulate the imagination? What could be worse at the end of a full life than losing all privacy, not to mention control over things we have always taken for granted, like when to wake in the morning, take a shower, go for a walk, or retire to bed? Institutions are institutions. They run according to the convenience and schedules of the professionals who work there, not the people they serve.
And here is where Gawande’s brave and lucid book shines most. Despite the best of intentions and a wealth of dedicated and compassionate medical caregivers, we have somehow produced homes for the aged that bear no resemblance at all to what we normally call living. Sure, physical safety is important, but the medical mania for keeping the elderly from ambulating and possibly breaking a hip can actually restrict and impoverish a life rather than bolster or extend it. It’s not the mere fact of existence that brings true purpose to our lives but rather our lifelong loves and interests, our hobbies and habits, our pets and our family. Why do we assume, Gawande reasonably asks, that the only question that matters in elder care is how to keep the aged safe rather than the more meaningful question of how to make their lives worth living? Forced participation in sing-alongs or crafts, be they in nursing homes or the unfortunately named Adult Day Care Centers, may well have a number of cognitive or psychological benefits for those who enjoy them, but it isn’t how I would like to spend my final years. Like my mother, I hope to keep reading or listening to audio books, enjoy slow meals, care for my pets, write if I can, and spend as much time with family and close friends as possible. If Gawande’s sane and sensible book translates into actual policy, we might all someday be able to control our own thermostats or get up and go to bed exactly when we want. Why should any of us have to give up being a real person, no matter how brittle our bones may be? Gawande’s philosophy is simple: “Let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them.”
Make no mistake about it, in its own quiet and generous way Gawande’s latest book is no less a call to arms than his previous The Checklist Manifesto. The right to retain one’s personhood should never stop at the nursing home door. It’s not in fact too late to establish more affordable in-home care for seniors who need it, or to transform even the most sterile nursing homes into places that are more than mere shelters or way stations to the beyond. In Being Mortal’s most inspiring chapter, Gawande tells the story of an upstate New York nursing home director who suddenly realizes that the missing ingredient in nursing home life is life itself. To give his residents something to live for he offers them something to care for: rabbits and hens outside the home, two dogs and four cats inside the home, and a parakeet in every room. He plants vegetable and flower gardens on the lawn to bring in the seasons. And he establishes on-site playgrounds, childcare, and after-school programs to bring family life into the facility. This one visionary doctor had the brilliant idea to put the “home” back into “nursing home.” The results of his revolution were dramatic: mortality rates fell 15 percent annually and drug expenses fell to a mere 38 percent of comparable costs at peer institutions (thanks in particular to the reduced use of antipsychotic drugs like Haldol to treat anxiety and agitation). It is perhaps unsurprising to be given notice that the elderly and infirm, needing more than a roof over their heads and food on the table, crave normal lives and a reason to live. What is truly remarkable is that it has taken the rest of us so long to finally read the memo.
Exactly how has a surgeon’s book on the bleak subject of end-of-life care (a book still on The New York Times hardcover bestseller list after more than 10 months) managed to bring both sound medical science and humane practical solutions to one of the most painful and delicate conversations any family is likely to face? Gawande has succeeded in large part by bringing a humanist perspective to a problem assumed to be simply medical or technological. While some scientists have dismissed the humanities for the apparent sins of subjective thinking and uncertain grounds, Gawande intuits exactly how much medical research needs humanistic inquiry if we are truly to understand what living a life, even in extremis, actually means. Being Mortal, a book chock full of important scientific information, also reads like an absorbing short story collection, with interlinked dramas taking up the great themes of modern literature (life, death, love, family). Historical knowledge, cultural awareness, personal empathy, and ethical action inform every chapter, as Gawande gently persuades us that our personal journeys into that good night will never simply be a matter of what medications to take or institutions to live in.
Reading this profoundly humanistic science book on aging makes me wonder if the intellectual work of the humanities, the study of what makes us human, has always been a bit like old age. Close reading, careful listening, and patient thinking (often about complex subjects that indeed rarely have clear answers) are deeply reflective practices that slow us down and educate not just our minds but also our emotions. In Being Mortal, Gawande engages in all three critical practices, returning to the core Aristotelian question that founded the humanities: what is a good life? It is the humanist in the scientist who recognizes that “living is a kind of skill.” At the same time, it is the scientist in the humanist who reminds us “old age is not a diagnosis.” In this book, the sciences and the humanities are neither at war nor in crisis. They are in intimate and productive collaboration.
Being Mortal draws on the strengths of both the humanities and the sciences to demonstrate one of life’s harder lessons: how to really listen to someone and how to ask the right questions in the first place. Now, as my mother’s dementia progresses, we are becoming appreciative close readers of the stories she shares. Every tall tale, every fictitious memory, every hallucination tells us something important about what makes her uneasy and what makes her happy. The strange man in the basement who increasingly keeps her company while she sleeps tells us that she is afraid to be alone at night. But from her description of this man we can also see that she takes enormous solace in the company of a ghost bearing a distinct resemblance to the father who once doted on his only child and made her feel safe. My mother is a storyteller — that is her truth. As her life narrows she invents stories that help her to not only hold on to the values and activities she finds deeply meaningful but also restore to her world the people and things she has lost. We should all have such a gift.
In the end my siblings and I followed Gawande’s sage advice and asked my mother what she wants to do now that she needs more help. Six years ago my mother moved into my New Jersey home and stayed several years as she recovered from hip and knee surgery. Regaining her health and wanting her independence back, she returned to Cape Cod, where my nearby brother and his family took a turn helping her manage the demands of living alone. Now that her infirmities have become more debilitating, my sister has stepped up and answered the call, buying a new home with her own retirement in mind and creating an attached in-law space. My mother is thrilled to soon be moving to Down East Maine and spending more time with her eldest daughter and family. Such a choice may not be for everyone; Gawande’s research reveals that most elderly parents do not wish to live with their children, and they can still feel lonely or anxious when they do. But while my mother may have dementia, she has been utterly clear about her priorities: she doesn’t wish to be by herself anymore, but nor does she want institutional living (bingo and socials, she says, are not for her). She wants to decide for herself how to spend her time, organize her meals, and walk her dog, and she’s willing to risk accidental falls to do it. Her deepest wish at the end of her life is simply to be, and preferably in the company of family close by. Turns out that the one thing that makes her life most worth living is us.