Gawande acknowledges that death and illness are uncomfortable topics for most people, as people tend to avoid confronting their own mortality. And yet, he illustrates how vital it is to talk openly about these issues, so that people aren’t completely caught off guard as they reach old age. Part of the book’s aim, then, is to demonstrate that death, illness, and aging are all normal, and to destigmatize discussing these topics with family. The book illustrates that only through this acknowledgement that death is a normal part of life, and honest discussion about what happens when people reach that time, are people able to identify their priorities and die in the way that they wish.
The book’s opening chapters describe the process of aging very specifically, illuminating how it is an inevitable process. Gawande spells out how medicine has changed our lives fundamentally: instead of dying quickly from a particular disease, many people fall victim to the “accumulated crumbling of one’s bodily systems.” The book spells out the different ways in which our lungs, eyes, joints, heart, and brains all age, and Gawande emphasizes how these processes are completely normal. But these processes of decay are not appealing, which is why people so often avoid the topic. This avoidance has huge consequences, not least of which is that avoiding the topics of death and illness gives us unrealistic expectations of aging. People often promote unlikely examples of maintaining vitality in old age, like a 97-year-old who runs marathons, as if those examples are accurate representations of what old age will look and feel like for most people. As a result, Gawande writes, “when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for.” Because people so often refuse to acknowledge the reality of death, death can often feel like failure to both patients and doctors, which then leads people to try to avoid the topic even further.
But while people may want to avoid the topic of death, being proactive about discussing illness and death can markedly improve how people live and die. The book discusses palliative care and hospice care, which are medical options that specifically alleviate suffering either in addition to or in place of traditional surgeries and treatments. In one study of stage IV lung cancer, half of participants received oncology care, while the other half received oncology care and had discussions with a palliative care specialist. Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice earlier, experienced less suffering, and lived 25 percent longer than those who didn’t see the specialist. As Gawande concludes, “If end-of life discussions were an experimental drug, the FDA would approve it.” In other words, the actions people take after discussing their wishes for the end of their lives can both lessen suffering and help them actually live longer.
In 1991, the town of La Crosse, Wisconsin, widely implemented a simple form for people to fill out when they are admitted to hospitals, nursing homes, and assisted living facilities, asking patients about their wishes in the event of needing severe medical interventions to keep people alive (e.g., intubation and mechanical ventilation). The form ensures that people have thought and/or talked about what they want for their end-of-life care before they reach a crisis. As a result, La Crosse has unusually low end-of-life costs, and patients spend half as many days in the hospital as the national average in their last six months of life—but their life expectancy outpaces the national average by a year. Again, the study indicates that confronting mortality, though uncomfortable, helps people make more fulfilling decisions that improve their health.
Gawande acknowledges how difficult these discussions can be—particularly when he has to discuss death with his own father—but facing the topic of death can ultimately lead a patient (and their family) to have more fulfilling final days. Gawande’s colleague, Susan Block, is a palliative care specialist whose 74-year-old father, Jack, discovers that he has a tumor growing in his spinal cord. Though the subject is uncomfortable, Susan asks her father what quality of life is tolerable to him, because they worry that surgery may leave him paralyzed. He explains that if he can still watch football and eat ice cream, he would want to continue living. Block recounts later that she is glad to have had the conversation, because when complications arise in the surgery, Block uses her father’s guidance to instruct the surgeons to save his life, as they tell her that he’ll still be able to watch TV and eat ice cream. Without that conversation, Block might have made the wrong decision: she might have let her father go too soon or condemned him to a life he didn’t want. Only by discussing difficult topics does Jack get to live out his final days as he wishes.
The same situation happens with Gawande’s own father, who also develops a tumor in his spinal cord and must undergo surgery. Gawande’s father insists that he doesn’t want a life of paralysis: he is more afraid of being quadriplegic (paralyzed in all four limbs) than dying. This conversation becomes crucial, because his surgery also has complications, and Benzel (the surgeon) asks Gawande how to proceed. When Gawande learns that his father is more likely to become quadriplegic if they don’t continue the surgery, he instructs Benzel to continue. As a result, his father recovers from the surgery and doesn’t lose any major mobility. Gawande later relays that helping his father through this difficult moment was “simultaneously among the most painful and most privileged experiences of [his] life.” The book acknowledges that while death never becomes comfortable, facing these difficult topics is crucial to helping people live out their last days in the way that they want.
Destigmatizing Death and Illness ThemeTracker
Destigmatizing Death and Illness Quotes in Being Mortal
What worried us was knowledge. While we knew how to sympathize, we weren’t at all certain we would know how to properly diagnose and treat. We paid our medical tuition to learn about the inner process of the body, the intricate mechanisms of its pathologies, and the vast trove of discoveries and technologies that have accumulated to stop them. We didn’t imagine we needed to think about much else. So we put Ivan Ilyich out of our heads.
Yet within a few years, when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.
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 progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before. Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs. We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for.
But the dismal finances of geriatrics are only a symptom of a deeper reality: people have not insisted on a change in priorities. We all like new medical gizmos and demand that policy makers ensure they are paid for. We want doctors who promise to fix things. But geriatricians? Who clamors for geriatricians? What geriatricians do—bolster our resilience in old age, our capacity to weather what comes—is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.
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.
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.
The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter. Nonetheless, when she was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
I asked Marcoux what he hopes to accomplish for terminal lung cancer patients when they first come to see him. “I’m thinking, can I get them a pretty good year or two out of this?” he said. “Those are my expectations. For me, the long tail for a patient like her is three to four years.” But this is not what people want to hear. “They’re thinking ten to twenty years. You hear that time and time again. And I’d be the same way if I were in their shoes.”
The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.
“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he was faced with a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
In truth, neither type is quite what people desire. We want information and control, but we also want guidance. The Emanuels described a third type of doctor-patient relationship, which they called “interpretive.” Here the doctor’s role is to help patients determine what they want. Interpretive doctors ask, “What is most important to you? What are your worries?” Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities.
I realized then that my father had already told us what to do, just as Susan Block’s father had. My dad was more afraid of becoming quadriplegic than of dying. I therefore asked Benzel which posed the greater risk of his becoming quadriplegic in the next couple months: stopping or proceeding? Stopping, he said. We told him to proceed.
We witnessed for ourselves the consequences of living for the best possible day today instead of sacrificing time now for time later. He’d become all but wheelchair bound. But his slide into complete quadriplegia halted. He became more able to manage short distances with a walker. His control of his hands and his arm strength improved. He had less trouble calling people on the phone and using his laptop. The greater predictability of his day let him have more visitors over. Soon he even began hosting parties at our house again. He found that in the narrow space of possibility that his awful tumor had left for him there was still room to live.
When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.
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.
When I was a child, the lessons my father taught me had been about perseverance: never to accept limitations that stood in my way. As an adult watching him in his final years, I also saw how to come to terms with limits that couldn’t simply be wished away. When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and most privileged experiences of my life.