Being Mortal: Illness, Medicine and what Matters in the End

“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.” 

Throughout the book, Gawande works towards establishing a more plausible, coherent vision for how people might live life in a meaningful way right up until they die. He thinks the main barrier to achieving this plan is modern society’s reluctance to really face death and express the wishes and fears that we have about that process.

“In the past, surviving into old age was uncommon and those who did survive served a special purpose as guardians of tradition, knowledge and history. They tended to maintain their status and authority as heads of the household until death.” 

Gawande’s grandfather remains a revered elder until his death at age 109. He makes family decisions, conducts business, and comes and goes as he pleases. This, Gawande acknowledges, is quite the opposite of how elders are treated in modern American society. Alice Hobson is a more typical example of an American elder who lives alone for as long as she can until being placed in a nursing home, so her family can find peace of mind knowing others are caring for her around the clock.

“Modernization did not demote the elderly. It demoted family. It gave people—the young and the old—a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elders is gone but not because it has been replaced with the veneration of youth. It’s been replaced by the veneration of the independent self.” 

Gawande notes that the retirement-community boom occurred not simply because the younger generation attempted to exile their elders to a separate living space. Instead, he references Del Webb’s marketing strategy for his very first retirement community, which played heavily on appeals at independence,telling elders they didn’t have to be under foot and could have the satisfaction of living their own autonomous lives.

“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.” 

Gawande notes that contemporary ideas on aging have drastically changed, informed now by constant medical advances that work to try and solve any and all health conditions. Bodily decline is harder to accept but remains inevitable. We look to modern medicine to stave off decline and struggle accepting when true irreversible decline arrives.

“Partly, this has to do with money—incomes in geriatrics and adult primary care are among the lowest in medicine. And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly.” 

From talking with Felix Silverstone and watching Juergen Bludau work, it is clear to the author that more geriatricians are needed if American society is going to deal with aging and death more honestly and productively. However, he notes that applications to programs in geriatrics have sharply decreased over the years, while specializations such as radiology and plastic surgery have increased. According to Silverstone, one of the problems is the lack of heroics in the field. Geriatricians cannot “save” their patients; instead, they work with them to cope with the complications of old age. 

“The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world.” 

Bludau’s advice to Gawande is poignant and runs counter to much of what Gawande observes in his professional life. While Bludau and other geriatricians try to promote active engagement in the world for their patients, Gawande observes other doctors undertaking risky procedures simply to get more time for their patients, even if those patients end up living only on ventilators with no real presence of mind.

“The geriatrics teams were doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications […] They looked for worrisome signs of isolation and had a social worker check that the patient’s house was safe.” 

Gawande notes the services geriatricians provide that other physicians would overlook, such as making sure patients are eating square meals and are living in environments that are safe for them. It is not just physical health that matters but also mental health, as geriatricians keep an eye out for indications of loneliness and isolation in their patients.

“Geriatric psychiatrists, nurses and social workers are equally needed and in no better supply.” 

Felix Silverstone admits his occasional feelings of depression to Gawande, but the author worries how many elders feel this free to express emotional concerns. In addition to more geriatricians, Gawande wants more specialists who focus on the process of aging from a mental-health and quality-of-life perspective.

“As fewer of us are struck dead out of the blue, most of us will spend significant periods of our lives too reduced and debilitated to live independently. We do not like to think about this eventuality. As a result, most of us are unprepared for it.” 

Gawande posits that true conversations about aging and dying are taboo because most people do not want to face the inevitability of fading health that awaits most of us. Because we do not want to have this conversation, we are ill prepared when true illness and decline finally arrive.

“For Alice, it must have felt as if she had crossed into an alien land that she would never be allowed to leave. The border guards were friendly and cheerful enough […] but she just wanted to live a life on her own.” 

Gawande is sympathetic to the situation of Alice Hobson, who is finally moved to an assisted-living facility after a few falls and moments of foggy memory. Though her new caregivers are kindly enough, she is despondent and declines precipitously. Alice is used to an independent life and becomes depressed by her new existence in which her every action is monitored, and every decision is made for her.

“For most of our species’ existence, people were fundamentally on their own with sufferings of their body […] Medicine was just another tool you could try, no different from a healing ritual or family remedy and no more effective. But as medicine became more powerful, the modern hospital brought a different idea.” 

Gawande notes that medicine’s primacy over human health is relatively new. As hospitals began to spring up in more places, people began to think of them as establishments where they could go to be healed of any ailment at all. 

“Alice was left no choice but to move into the skilled nursing unit […] From then on she was confined to a wheelchair and the rigidity of nursing home life. All privacy and control was gone.” 

Gawande is critical of facilities that feel more like hospitals than homes. It is to one of these places that Alice Hobson is eventually confined. There, she is thoroughly nursed and monitored, but the rigid schedule of her institutional life leaves her depressed and without any real will to continue to live.

“Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail you shouldn’t have to submit to life in an asylum.” 

Gawande presents Keren Brown Wilson’s ideas on assisted living as revolutionary and akin to the spirit of his own work. Wilson did not envision an intermediate step between independent living and a nursing home. Instead, she created assisted living as an alternative, as a place where elders could have both control and support as needed.

“Many longtime advocates for the protection of the elderly saw the design as fundamentally dangerous. How was the staff going to keep people safe behind closed doors?” 

Gawande notes that the initial response to Wilson’s idea was lukewarm. Many thought of the plan as unsafe, allowing those with disabilities or memory problems to use knives and alcohol, to eat poorly or smoke. Spaces would not be sterile, as they would be in a hospital setting and odors or bacteria could become a problem. Wilson did not profess to have all the answers and instead charged staff with dealing with issues as they arose.

“Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present rather than the future.” 

Gawande examines the way that priorities and relationships shift as we age. Spending time with loved ones and long-term friends becomes more important. Rather than focusing on what lies ahead, being truly present in the moment matters most.

“This simple but profound service—to grasp a fading man’s need for everyday comforts, for companionship, for help achieving his modest aims—is the thing that is still so devastatingly lacking more than a century later.” 

Gawande references the experiences of Tolstoy’s character Ilyich again to illustrate just what the servant Gerasim does to truly comfort the dying man. Gerasim talks to him when all others ignore him. He helps him remain comfortable and does so without deception or imposing any goals. This kind of care is what Gawande believes far more patients need at the end of their life.

“He wanted to bring in enough animals, plants and children to make them a regular part of every nursing home resident’s life. Inevitably, the settled routine of the staff would be disrupted but then wasn’t that part of the aim?” 

More than anything, innovator Bill Thomas is after culture change. He wanted to shake up the nursing home paradigm in which staid, sterile environments keep patients medically cared for but emotionally and psychologically neglected. His formula for doing so involved incorporating new elements such as pets, plants and children that would breathe new life into the home and into the residents as well.

“Just as safety is an empty and even self-defeating goal to live for, so ultimately is autonomy.” 

Being fully autonomous is a fantasy that few elders can achieve, Gawande contends. Dependency is inevitable and needn’t be viewed as a failure or defeat. A happy medium between autonomy and dependency needs to be available.

“In other words, people who had substantive discussions with their doctor about their end of life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.” 

Gawande cites a Coping with Cancer study that reinforces his view that a conversation about the process of dying is highly important. Though both patient and physician may be reluctant to embark on this discussion, the benefits of doing so are felt by the patient and their family. Gawande reports from his own experience that talking candidly with patients about their wishes and fears about death also helped him become a better physician.

“The lesson seems almost Zen: you live longer only when you stop trying to live longer.” 

Gawande references Medicare findings that report no difference in survival time between cancer patients who entered hospice and those who didn’t. In some instances, hospice care seems to extend survival. This reinforces the author’s idea that major surgery and interventions do little to save patients at the end and may in fact be harmful.

“You agree to become a patient and I, the clinician, agree to try and fix you, whatever the improbability, the misery, the damage or the cost.” 

Gawande believes that society is on the cusp of rejecting the institutionalized version of aging and dying, one in which doctors battle disease no matter how unlikely a positive outcome is and patients surrender all decision-making and bottle up all fears and wishes. Gawande is hopeful that we will get to a better place, one where more open and humane approaches to aging and dying are possible.

“In my career, I have always been most comfortable being Dr. Informative. (My generation of physicians has mostly steered away from being Dr. Knows Best). But Dr. Informative was clearly not sufficient enough to help Sara Monopoli or the many other seriously ill patients I’d had.” 

Gawande believes it is time for doctors to move beyond being simply informative and outlining different options for their patients. He comes to see this tactic as little better than the prescriptive methods of older doctors. Instead, he endeavors to be guidance driven, offering options and then asking patients more about their ideas and concerns so that doctor and patient can map out a right fit together.

“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.” 

Gawande maps out what he believes are the true goals of medicine. It is not about simply surviving and vanquishing illness after illness. It is about maintaining quality of life. In order to do that, he believes that doctors must start to talk with their patients about hopes and fears, about the trade-offs they are willing to make for some more time.