Atul Gawande’s father died a few years ago, and his book (Being Mortal: Medicine and What Matters in the End) may have been an attempt to come to grips with the experience. He begins with The Death of Ivan Ilyich, and the dilemma posed by Tolstoy: although the illness isn’t amenable to any treatment, that’s all the physicians focus on as Ilyich gets more and more miserable. “He lives in mounting anguish and fear of death.” Being Mortal is a look at the state of caring for the elderly and frail, how it has been medicalized, and the more humane approaches that have emerged in the last few decades.
The general thesis is that medical care sprang up in the last century and was quickly “institutionalized” in hospitals. Nursing homes followed when hospitals realized they couldn’t house the elderly and debilitated. Assisted living began as a noble experiment but has also drifted back to regimented schedules, serving the staff and the rules rather than offering a humane situation. But recently hospice care, palliative care, and shared decision making which takes a person’s goals into consideration are moving in a better direction.
He notes research that with hospice care, even though people tend to have less procedures, stop chemo sooner, fewer visits to the emergency room, they live longer on average. Even more paradoxical is that the same is true simply based on whether providers have discussed the patients goals and wishes. Discussion alone extends life.
“Scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals.” Later, “This experiment of making mortality a medical experience is just decades old.” A recurring theme is that a person needs to have autonomy in the sense of deciding the direction of their life. Gawande is careful to parse the idea of autonomy, separating out the above from the idea of “doing anything you want.” Aging and disease will inevitably prevent a person from climbing mountains, or maybe even getting out of bed.
“As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did.” But the hospice movement is shifting this back to the home, and (though he doesn’t mention it in the book) the movement for home care will do the same.
Death is seen as the enemy by medicine, still, even after decades of recognizing that it should be addressed sensibly. Medical professionals are still given almost no training in hospice, palliative care, or end of life processes.
In the first chapter he tells the story of his grandfather in India who lived to the age of 110, living surrounded by several generations who revered him, waited on his every need. But then Gawande turns this typical story and notes that the young and the elderly choose independence when they can. As comforting as the story of a large home and generations is, when there is choice people do otherwise. “Rising incomes, and then pension systems” allow people “to maintain economic control of their lives in old age… the radical concept of “retirement” started to take shape.”
It’s hard to realize that the first “retirement community” was created in my lifetime, 1960, Sun City in Arizona. The further developments, like assisted living, hospice, the green house movement, and palliative care are within the period of my professional career starting in the eighties. They are so new that the professions, education, and institutions haven’t been able to keep up.
The second chapter, “Things Fall Apart,” is the most depressing. Gawande pulls no punches in detailing how brutal the end of life usually is. This is also a necessary corrective to the techno-optimism of the immortality crowd. For all the possibility that there will be radical life extension, even in our lifetime, even in a decade, its hard to believe it will be available to everyone right away.
“The story of aging is the story of our parts.” The slow decline of body systems is described in detail. He also puts forth a different idea from the longevity movement: “The classical view is that aging happens because of random wear and tear. The newest view holds that aging is more orderly and genetically programmed.” The idea “that living things shut down instead of wearing down…” On the other hand, “only 3 percent of how long you’ll live, compared with the average, is explained by your parents’ longevity.” Inheritance doesn’t have much to do with it.
When visiting a geriatric clinic, he learns that falls are more important to focus on than anything else, even a tumor on a vital organ. Falls often precipitate a rapid decline. There are three predictors of falls: balance, muscle strength, and the number of medications you’re taking. Of those who fall and break a hip, “40 percent end up in a nursing home, and 20 percent are never able to walk again.”
Gawande presents multiple kinds of evidence that simply addressing the question of frailty, reduced functions, and what a person wants improves the situation – even in the absence of specific physical therapies or changes. The implication is that both providers and patients change their approach to the situation, and make adjustments, rather than medicalizing it. It’s a call both for geriatrics as a practice, and acknowledging the realities of aging. “When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.” Again, current reality pushing against the fad of life extension.
The chapter on Dependence starts out “It is not death that the very old tell me they fear. It is what happens short of death – losing their hearing, their memory, their best friends, their way of life.” In describing one couple that are aging fast, the husband says: “I try not to think too far ahead. I don’t think about next year. It’s too depressing. I just think about next week.” Gawande notes, as we have, that even though this is common, it backfires into crisis, emergency room visits, and sudden change from being independent to lying in an institution surrounded by medical professionals.
The history of homes for the poor and disabled (poorhouse, or almshouse) go back centuries. “If you were elderly and in need of help but did not have a child or independent wealth to fall back on, a poorhouse was your only source of shelter. Poorhouses were grim, odious places to be incarcerated – and that was the telling term used at the time. … their function was to put the ‘inmates’ to work for their presumed intemperance and moral turpitude.” A 1912 report describes on as “unfit to decently house animals…. Nothing provoked greater terror for the aged than the prospect of such institutions.” An attitude that continues today with nursing homes, perhaps fed by talks with grandparents from that time. Gawande describes a similar place he visited in India today, and despite the goodwill and efforts of the staff, says “it was as close to a vision of hell as I’ve experienced.”
Then came Social Security in 1935. Medicine surged forward with antibiotics, blood pressure drugs, heart surgery. In 1946 the Hill-Burton Act funded hospitals, so that by the sixties there were 9,000 new facilities in the U.S. (There are 6,000 today). The unexpected consequence was that the sick and disabled began to be cared for in hospitals, which they weren’t prepared for. So in 1954 funding was created for 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.” By 1970, 13,000 nursing homes had been built.
Gawande’s conclusion is that the institutions were not created to be patient-centric, to take the problems and needs of the persons into consideration. They were solving problems of the institutions or caregivers. This pattern continues today.
Irving Goffman used the term “total institution” in his book Asylums to describe places cut off from larger society: “all aspects of life are conducted in the same place and under the same central authority…. [daily activities happen] in the immediate company of a large batch of others, all of whom are treated alike and required to do the same thing together. … the day’s activities are tightly scheduled.” Gawande goes on to point out that “nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight – important medical goals, to be sure, but they are means, not ends.” “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 not making life worth living for them.
Chapter 4 describes the evolution of assisted living. Gawande notes that “taking care of a debilitated, elderly person in our medialized era is an overwhelming combination of the technological and the custodial.” The notion that all you need are caring family members at the bedside is no longer valid, because the means that will be employed include everything from hospital beds to single-use catheters, sophisticated walkers, compression stockings, and multiple medications.
The model for an assisted living facility was created by Karen Brown Wilson in the 1980s as a goal of eliminating nursing homes. “She’d wanted to build an alternative, not a halfway station.” A place where people could live with freedom and autonomy. She did it because her mother asked; and the defining concept is a place that is like home, where “you decide how you spend your time, how you share your space, and how you manage your possessions.”
These became private apartments, but with the added services of a nurse for urgent assistance. When staff went in, “they were entering someone else’s home, and that changed the power relations fundamentally.” The goal “was that no one ever had to feel institutionalized.” It worked. Health and cognitive function improved, depression fell, and costs went down.
This raises the question of “what makes life worth living.” Gawande cites Maslow’s hierarchy, but then cites research showing that goals shift over a lifetime – in particular, moving away from achievement and toward spending time with known friends and family. “They focus on being rather than doing.” The hypothesis of Laura Carstensen brings our perception of time into our goals: “how we seek to spend our time may depend on how much time we perceive we have.” Whether because of a terminal illness at 30 or because of the narrowing window at 90, our goals change. Perspective is the important element, not age or culture.
Assisted living often fails to achieve the goals that Wilson set out because “it’s difficult to make caregivers think about what it really entails. Dressing someone is easier and quicker than letting them do it themselves. “The tasks come to matter more than the people.” Often assisted living facilities are built to impress the children of the aged who are touring and making decisions.
Enter Bill Thomas and the evolution of the “green house” movement. He was the medical director of a nursing home in upstate New York, and tried to “attack what he termed the Three Plagues of nursing home existence: boredom, loneliness, and helplessness.” He brought in lots of animals and plants, including a colony of rabbits and a flock of laying hens. A study “found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular.”
His idea is that living things (animals, plants) provide spontaneity and companionship, and the chance to take care of another being. A goal. A reason for living. Meaning “we all seek a cause beyond ourselves…. The cause could be large (family, country, principle) or small (a building, project, the care of a pet).” Gawande notes the philosopher Josiah Royce, that “The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society.” Psychologists now use the term “transcendence” for this greater goal, beyond Maslow’s self-actualization.
“The problem with medicine and institutions… 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. … Medical professionals concentrate on repair of health, not sustenance of the soul. Yet… we have decided that they should be the ones who largely define how we live in our waning days.” We are “putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.”
So experiments are springing up, like NewBridge on the Charles (Boston), where small pods called “households” have no more than 16 people, and the design avoids a clinical look. Beacon Hill Villages, “a kind of community cooperative … dedicated to organizing affordable services… in order to help the elderly stay in their homes.” The Pioneer Network which advocates for changes in the care of the elderly. The National Green House Replication Initiative.
In terms of autonomy, the notion of being completely free to do anything “is a fantasy.” The more valid idea is that we want the freedom to “be the authors of our lives,” as the philosopher Ronald Dworkin said. “autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest.” Gawande: “All we ask is to be allowed to remain the writers of our own story.”
In the chapter “Letting Go” he addresses the question of facing the (inevitable) end with family and providers. The problem is that the conversation almost always comes too late in the process. And at that time, people with terminal illness “have priorities besides simply prolonging their lives. “… top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete…. Our system of technological medical care has utterly failed to meet these needs.”
Socially and psychologically this situation is new. In the past “the interval between recognizing that you had a life-threatening ailment and dying was commonly a matter of days or weeks.” Choosing hospice isn’t easy. “A hospice nurse enters people’s lives at a strange moment – when they have understood that they have a fatal illness but not necessarily acknowledged that they are dying.” Providers make the same mistake. “Sixty-three percent of doctors overestimated their patient’s survival time…. And the better the doctors knew their patients, the more likely they were to err.”
He also notes that when providers give us hope by saying that a treatment might extend life, it is almost always misinterpreted – as he and his physician father did in their own situation. We think it means 10 or 20 more years, whereas it generally means a few months. “Our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh…. We fall back on the default, and the default is: Do Something.”
Having a discussion and facing the reality also prolongs life. “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.” “A family meeting is a procedure, and it requires no less skill than performing an operation.” These discussions require time. “No one conversation can address [all the anxieties and terrors]. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”
Swedish doctors call it the “breakpoint discussion… when they need to switch from fighting for time to fighting for the other things people value. …Few people have these conversations… They can unleash difficult emotions. People can become angry or overwhelmed.” They need to be done with the family as well, because they are a significant influence. “about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.” In one sense, everyone is a beginner. “People die only once. They have no experience to draw on.”
Discussions with clinicians fall into three general types. The professional can be paternalistic and tell the patient what to do. They can be informative, giving information and leaving the choice up to the patient. The third is called shared decision making, where the professional offers information but also guidance; they help the patient determine what they want, based on the information and options. Further, to challenge their beliefs and priorities.
Palliative care providers follow a strategy of “ask, tell, ask.” “They ask what you want to hear, then they tell you, and then they ask what you understood.”
Finally Gawande confronts the question of assisted suicide, or “death with dignity,” “whether the logic of sustaining people’s autonomy and control requires helping them accelerate their own demise when they wish to.” This already happens in many situations (stopping medications, refusing procedures, turning off a pacemaker). “At root, the debate is about what mistakes we fear – the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize their psychic suffering is often temporary.” But it is different for the terminally ill.
Gawande qualifies his stance here, talking about the larger societal and institutional factors that influence what happens. He notes that the Dutch, who have had assisted suicide in place, have been slower to develop palliative care programs. “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.” Earlier, he says “Our ultimate goal, after all, is not a good death but a good life to the very end.”
He sums up in the epilogue: “Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits… We think our job is to ensure health and survival. But… it is to enable well-being…. Our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life.”
After his father died the family scattered his ashes on the Ganges. He praises his father’s recognition of limits, and looking at them without illusion. But also the larger picture. “He saw himself as a link in a chain of history. Floating on that swollen river, I could not help sensing the hands of the many generations connected across time. In bringing us there, my father had helped us see that he was part of a story going back thousands of years – and so were we.”