Being Mortal considers the various residential options that people can choose in their last phase of life—like remaining with family, moving to an assisted living facility, or living in a nursing home—and why these options often seem unappealing. One of the key patterns Gawande finds across these options is that elderly people have to give up autonomy in the name of safety, but this makes older people feel as if they have no control over or meaning in their lives. The book thus suggests that there are more important things in end-of-life care than safety: namely, providing people independence and control over their own lives and maintaining a sense of purpose.
Throughout history and across the globe, it has been most common for an elderly person whose health is deteriorating to live with their children, but this arrangement can rob both adult children and their aging parents of their autonomy. Gawande introduces the topic through his grandfather, Sitaram, who was a farmer in a rural village in India. Sitaram lives to 110, and even in his last years, he tours his farm on horseback every day and is revered for his wisdom. But he is only able to live this way by staying with and receiving care from family at all times. And he gets in tense battles with the younger generations over control of the finances, property, and even basic decisions about how they can live. For example, Gawande’s father moves to America to pursue economic opportunity—but he can only do so because other siblings remain behind to care for Sitaram, thus robbing them of that same opportunity. To protect Sitaram’s safety, both Sitaram and his children have to forgo some degree of autonomy over their lives.
Lou Sanders and his daughter Shelley experience the same tension. As an 85-year-old widower, Lou begins to have falls in his home, his memory wanes, and he is diagnosed with Parkinson’s disease. Concerned for Lou’s safety, Shelley brings him to live with her. But as a result, Shelley has to care for her father in addition to having a full-time job and caring for her two teenage children. The demands on her are many; meanwhile, Lou no longer has control over the food he eats, the volume of the television, or when he can have friends over to visit. The situation becomes impossible for them and they begin to look for nursing homes, illustrating the at times untenable nature of living with family because of how it impacts a patient’s ability to make their own decisions.
Because nursing homes prioritize safety and care, they are often no better at providing elderly people with independence. Gawande’s wife, Kathleen, has a grandmother named Alice Hobson. Alice is very independent and lives alone until she is 84, when she begins to become confused easily and starts to fall. Despite her hesitation, she moves to a retirement home that also has the capacity for round-the-clock care when she needs it. But she is miserable there—it doesn’t feel like her home. After a few more falls, Alice breaks her hip and moves into a skilled nursing unit. There, she has even less autonomy: she eats, bathes, and dresses when the nurses tell her to. Soon after, when Alice develops abdominal pain and vomits blood, she decides not to tell the nurses, and a day later, she passes away. This story suggests that Alice’s safety came at the expense of her control over her life and feelings of meaning and purpose, to the point where she no longer had the will to live.
Bella Silverstone faces similar obstacles toward the end of her life, as she loses her vision and cognitive function and ultimately falls and breaks both legs. She needs intense nursing care, so she moves to the nursing home floor of her retirement home. The staff provides greater safety and care there, but Bella’s husband, Felix, describes how the staff tends to her “more as a patient than a person.” They treat her like a rag doll as they dress and bathe her, essentially depriving her of any control over her life and body. Felix has Bella moved back to their home for the remaining six weeks of her recovery, where she receives less assistance. Even though she may have been theoretically less safe with Felix at home, it makes Bella much happier because she feels more control over her own life.
The third option the book offers is assisted living facilities, which attempt to restore autonomy to seniors by making them feel much more purposeful and in control—and as a result, they are much happier. Keren Brown Wilson, one of the originators of the concept of assisted living facilities, wanted to create a place where people could maintain their autonomy despite physical limitations. She gave people private apartments with doors that locked, allowed them to have control over temperature settings, food, and who came into their apartment. A study of Wilson’s first facility showed that this arrangement didn’t negatively impact their health and safety. In fact, it actually increased patients’ satisfaction, as well as their physical and cognitive functions. Thus, autonomy doesn’t have to come at the expense of safety—having autonomy can actually make people safer as well as happier. Gawande returns to Lou Sanders, who lives for a brief period in a typical facility and is miserable. He then moves into an innovative assisted living facility, which has single rooms, looks like a home, and gives residents control over when they eat, bathe, and sleep. The fact that Lou can determine his own activities makes him feel that “he still [has] a place in this world.” The approaches to elderly care that prioritize safety—living with one’s children or living in a nursing home—are deeply unsatisfying for most patients, which speaks to the idea that safety alone isn’t enough to give life meaning. In contrast, assisted living can be so successful—and often so beloved by its residents—because it helps elderly people maintain a sense of purpose and autonomy.
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Safety vs. Autonomy Quotes in Being Mortal
You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. 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. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.
The fascinating thing is that, over time, it doesn’t seem that the elderly have been especially sorry to see the children go. Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own. Instead, with growing economies, a shift in the pattern of property ownership occurred. As children departed home for opportunities elsewhere, parents who lived long lives found they could rent or even sell their land instead of handing it down. Rising incomes, and then pension systems, enabled more and more people to accumulate savings and property, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability. The radical concept of “retirement” started to take shape.
Their apartment was only a floor away. But somehow that made all the difference. Exactly why can be hard to pinpoint. Felix still ended up hiring an around-the-clock staff of nurses and aides. And the remaining six weeks until the casts could come off were physically exhausting for him. Yet he was relieved. He and Bella felt more control over her life. She was in her own place, in her own bed, with him beside her. And that mattered tremendously to him. Because four days after the casts came off, four days after she’d begun walking again, she died.
But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hospitals lobbied the government for help, and in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing an extended period of “recovery.” That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes.
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.
Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. […] The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home. Just to take an overnight trip with her family, she had to hire someone to stay with Lou, and even then a crisis would scuttle the plans. One time, she went on a Caribbean vacation with her husband and kids but had to return after just three days. Lou needed her.
Fifteen years later, when she was a scholar, the experience led her to formulate a hypothesis: how we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, you believe you will live forever. […] When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity and other attributes of “self-actualization.” But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.
“He agreed, with the indifference of a person who knows he will soon be gone,” Thomas said. But he began to change. “The changes were subtle at first. Mr. L. would position himself in bed so that he could watch the activities of his new charges.” He began to advise the staff who came to care for his birds about what they liked and how they were doing. The birds were drawing him out. For Thomas, it was the perfect demonstration of his theory about what living things provide. In place of boredom, they offer spontaneity. In place of loneliness, they offer companionship. In place of helplessness, they offer a chance to take care of another being. […] Three months later, he moved out and back into his home. Thomas is convinced the program saved his life.
The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.
Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.
If to be human is to be limited, then the role of caring professions and institutions—from surgeons to nursing homes—ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.
