Top Quotes: “Being Mortal” — Atul Gawande
Background: Gawande, a prominent physician, walks us through the experience of being an elderly person today and how that has changed over time. He offers an alternate vision for elderly people in which they continue to live with the chance to make their own choices, make mistakes when they want to, etc. rather than having every aspect of their lives controlled by others. A great read for medical nerds and regular folks like me ;)
Now vs. Then
“For most of human history, those few people who actually survived to old age were cared for in multigenerational systems, often with three generations living under one roof. Even when the nuclear family replaced the extended family (as it did in northern Europe several centuries ago), the elderly were not left to cope with the infirmities of age on their own. Children typically left home as soon as they were old enough to start families of their own. But one child usually remained, often the youngest daughter, if the parents survived into senescence. This was the lot of Emily Dickinson in the mid-1800s. Her elder brother left home and started a family, but she and her younger sister stayed with their parents until they died. As it happened, Emily’s father lived to 71, by which time she was in her 40s, and her mother lived even longer. She and her sister ended up spending their entire lives in their parental home.”
“It was understood that parents would just keep living in their home, assisted by one or more of the children they’d raised. In contemporary societies, by contrast, old age and infirmity have gone from being a shared, multigenerational responsibility to a more or less private state — something experienced largely alone or with the aid of doctors and institutions. How did this happen? One answer is that old age itself has changed. 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 household until death. In many societies, elders not only commanded respect and obedience but also led sacred rites and wielded political power. So much respect accrued to the elderly that people used to be pretend to be older than they were, not younger. People have always lied about how old they are — demographers call the phenomenon ‘age heaping’ and have devised complex quantitative contortions to correct for all the lying in censuses. They’ve also noticed that, during the 18th century, in the U.S. and Europe, the direction of our lies changed — we began to understate our ages.”
“In America, in 1790, people 65+ constituted less than 2% of the population; today, they’re 14%. In Germany, Italy, and Japan, they exceed 20%.”
“As for the exclusive hold that elders once had on knowledge and wisdom, that, too, has eroded, thanks to technologies of communication — starting with writing itself and extending to the Internet and beyond. New tech also creates new occupations and requires new expertise, which further undermines the value of long experience and seasoned judgment. At one time, we might have turned to an old-timer to explain the world. Now we consult Google, and if we have any trouble with the computer we ask a teenager.”
“Increased longevity has brought about a shift in the relationship between the young and the old. Traditionally, surviving parents provided a source of much-needed stability, advice, and economic protection for young families seeking pathways to security. And because landowners also tended to hold on to their property until death, the child who sacrificed everything to care for the parents could expect to inherit the whole homestead, or at least a larger portion than a child who moved away. But once parents were living markedly longer lives, tension emerged. For young people, the traditional family system became less a source of security than a struggle for control — over property, finances, and even the most basic decisions about how they could live.”
“Global economic development has changed opportunities for the young dramatically. The prosperity of whole countries depends on their willingness to escape the shackles of family expectation and follow their own path — to seek out jobs wherever they might be, do whatever work they want, marry whom they desire. So it was with my father’s path from an Indian village to Ohio. He left the village first for university in Nagpur and then for professional opportunity in the States. As he became successful, he sent ever larger amounts of money home, helping to build new houses for his father and siblings, bring clean water and phones to the village, and install irrigation systems that ensured harvests when the rainy seasons were bad. He even built a rural college nearby that he named for his mother. But there was no denying that he had Left, and he wasn’t going back.”
“The traditional old age that my grandfather was able to maintain was possible only because my father’s siblings had not left home as he had. We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it. The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone.”
“Life expectancy, which was <50 in 1900, climbed to more than 60 by the 1930s, as improvements in nutrition, sanitation, and medical care took hold. Family sizes fell from an average of seven children in the mid-1800s to just over three after 1900. The average age at which a mother had her last child fell too — from menopause to 30 or younger. As a result, vastly more people lived to see their children reach adulthood. In the early 20th century, a woman would’ve been 50 when her last child turned 21, instead of in her sixties a century before. Parents had many years before they or their children had to worry about old age. So what they did was move on, just like their children. Given the opportunity, both parents and children saw separation as a form of freedom.”
“Whenever the elderly have the financial means, they’ve chosen what social scientists call ‘intimacy at a distance.’ Whereas in early 1900s America 60% of those over 65 resided with a child, by the ’60s, the proportion had dropped to 25%. By 1975 it was below 15%. The pattern is a worldwide one. Just 10% of Europeans 80+ live with their children and almost half live completely alone, without a spouse. In Asia, where the idea of an elderly person being left to live alone has traditionally been regarded as shameful, the same radical shift is taking place. This is actually a sign of enormous progress. Choices for the elderly have proliferated.”
“An Arizona real estate developed popularized the term ‘retirement community’ in 1960 when he launched Sun City, a Phoenix community that was among the first to limit its residents to retirees. It was a controversial idea at the time. Most developers believed the elderly wanted more contact with other generations. Webb disagreed. He believed people in the last phase of their lives didn’t want to live with family underfoot. He built Sun City as a place with an alternate vision of how people would spend what he called ‘their leisure years’ with a golf course, a shopping arcade, and a rec center, and offered the prospect of an active retirement of recreation and dining out with others like them to share it with. His vision proved massively popular, and in Europe, the Americas, and even Asia, retirement communities have become a normal presence.”
“For those who had no interest in moving into such places, it became acceptable and feasible to remain in their own homes, living as they wanted to live, autonomously. That fact remains something to celebrate. There’s arguably no better time in history to be old. The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so much as share it. Modernization did not demote the elderly, it demoted the 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 may be gone, but not because it’s been replaced by the veneration of youth. It’s been replaced by the veneration of the independent self.”
“There remains one problem with this way of living. Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?”
Aging
“Even as our bones and teeth soften, the rest of our body hardens. Blood vessels, joints, the muscles and valves of the heart, and even the lungs pick up substantial deposits of calcium and turn stiff. Research has found that loss of bone density may be an even better predictor of death from atherosclerotic disease than cholesterol levels. As we age, it’s as if the calcium seeps out of our skeletons and into our tissues. To maintain the same volume of blood flow through our narrowed and stiffened blood vessels, the heart has to generate increased pressure. As a result, more than half of us develop hypertension by the age of 65. The heart becomes thicker-walled from having to pump against the pressure, and less able to respond to the demands of exertion. The peak output of the heart therefore decreases steadily from the age of 30. People become gradually less able to run as far or as fast as they used to or to climb a flight of stairs without losing their breath.”
“Even our brains shrink: at the age of 30, the brain is a three-pound organ that barely fits inside the skull; by our 70s, gray-matter loss leaves almost an inch of spare room. That’s why elderly people are so much more prone to cerebral bleeding after a blow to the head — the brain actually rattles around inside. The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized. As a consequence, memory and the ability to gather and weigh multiple ideas — to multitask — peaks in midlife and then gradually declines. Processing speeds start decreasing well before age 40 (which may be why mathematicians and physicists tend to do their best work in their youth). By age 85, working memory and judgment are sufficiently impaired that 40% of us have textbook dementia.”
“It turns out that inheritance has surprisingly little influence on longevity. Only 3% of how long you’ll live, compared with the average, is explained by your parents’ longevity, by contrast, up to 90% of how tall you are is explained by your parents’ height. Even genetically identical twins vary widely in life span: the typical gap is more than 15 years.”
“If our genes explain less than we imagined, the classical wear-and-tear model may explain more than we knew. Human beings may fail the way all complex systems fail: randomly and gradually. As engineers have long recognized, simple devices typically don’t age. They function reliably until a critical component fails, and the whole thing dies in an instant. But complex systems — power plants, say — have to survive and function despite having thousands of critical, potentially fragile components. Engineers therefore design these machines with multiple layers of redundancy: with backup systems, and backup systems for the backup systems. The backups may not be as efficient as the first-line components, but they allow the machine to keep going even as damage accumulates. Within the parameters established by our genes, that seems to be exactly how humans work. We have an extra kidney, an extra lung, an extra gonad, extra teeth. The DNA in our cells is frequently damaged under routine conditions, but our cells have a number of DNA repair systems. If a key gene is permanently damaged, there’s usually extra copies of the gene nearby. And if the entire cell dies, other cells can fill in.”
“We wear down until we can’t wear down anymore. It happens in a bewildering amount of ways. Hair grows gray, for instance, simply because we run out of the pigment cells that give hair its color. The natural life cycle of the scalp’s pigment cells is just a few years. We rely on stem cells under the surface to migrate in and replace them. Gradually, however, the stem-cell reservoir is used up. By the age of 50, as a result, half of the average person’s hairs have gone gray.”
“Inside skin cells, the mechanisms that clear out waste products slowly break down and the residue coalesces into a clot of gooey yellow-brown pigments known as lipofuscin. These are the age spots we see in skin. When lipofuscin accumulates in the sweat glands, they cannot function, which explains why we become so susceptible to heat stroke and heat exhaustion in old age.”
“The eyes go for different reasons. The lens is made of crystallin proteins that are tremendously durable, but they change chemically in ways that diminish their elasticity over time — hence the farsightedness that most people develop beginning in their 40s. The process also gradually yellows the lens. Even without cataracts (the whitish clouding of the lens that occurs with age, excessive UV exposure, high cholesterol, diabetes, and smoking), the amount of light reaching the retina of a healthy 60-year-old is one-third that of a 20-year-old.”
“The single more serious threat most elders face is falling. Each year, about 350,000 Americans fall and break a hip. Of those, 40% end up in a nursing home and 20% are never able to walk again. The three primary reasons for falling are poor balance, taking more than 4 meds, and muscle weakness. Elderly people without these risk factors have a 12% chance of falling in a year. Those with all three have an almost 100% chance.”
“Even in an average retirement community, rent runs $32k/year. Entry fees are typically $60-$120k on top of that. Meanwhile, the median income of people 80+ is only about $15k. More than half of the elderly living in long-term-care facilities run through their entire savings and have to go on government insurance — welfare — in order to afford it. Ultimately, the average American spends a year or more of old age disabled and living in a nursing home (at more than five times the yearly cost of independent living), which is a destination many are desperately hoping to avoid.”
“He was most concerned about the changes in his brain. ‘I can’t think as clearly as I used to,’ he said, ‘I used to be able to read the New York Times in half an hour. Now it takes me an hour and a half.’ Even then, he wasn’t sure that he understood as much as he did before, and his memory gave him trouble. He made use of methods that he once taught his patients. ‘I try to deliberately focus on what I’m doing, rather than to do it automatically,’ he told me, ‘I haven’t lost the automaticity of action, but I can’t rely on it the way that I used to. For example, I can’t think about something else and get dressed and be sure I’ve gotten all the way dressed.’”
“Creating geriatric specialists takes time, and we already have far too few. In a year, fewer than 300 doctors will complete geriatrics training in the U.S., not nearly enough to replace the geriatricians going into retirement, let alone meet the needs of the next decade. Geriatric psychiatrists, nurses, and social workers are equally needed, and in no better supply. The situation outside the U.S. appears to be little different. In many, it’s worse. Yet we still have time for another strategy: directing geriatricians toward training all PCPs and nurses in caring for the very old, instead of providing the care themselves. Even this is a tall order — 97% of med students take no geriatrics courses, and the strategy requires that the nation pay geriatric specialists to teach rather than to provide patient care. But if the will is there, it would be possible to establish courses in every med school, nursing school, school of social work, and internal-medicine training program within a decade. ‘We’ve got to do something. Life for older people can be better than it is today.’”
Poorhouses & Nursing Homes
“Unless family could take the elderly in, they had virtually no options left except a poorhouse, or almshouse. These institutions went back centuries in Europe and the U.S. If you were elderly and in need of help but didn’t 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 at the time. They housed poor of all types — elderly paupers, out-of-luck immigrants, young drunks, the mentally ill — and their function was to put the ‘inmates’ to work for their presumed intemperance and moral turpitude. Supervisors usually treated elderly paupers leniently in work assignments, but they were inmates like the rest. Husbands and wives were separated. Basic physical care was lacking. Filth and dilapidation were the norm. The men and women in one Illinois poorhouse lived without any attempt at classification by age or needs in bare 10x12 foot rooms infested with bedbugs, rats, flies, and no bathtubs. A 1909 Virginia report described elderly people dying untended, receiving inadequate nutrition and care, and contracting tuberculosis from uncontrolled contagion. In one case, a warden, faced with a woman who tended to wander off and no staff to mind her, made her carry a 28-pound ball and chain. Nothing provoked greater terror for the aged than the prospect of such institutions. Nonetheless, by the 20s and 30s, two-thirds of poorhouse residents were elderly. Gilded Age prosperity had sparked embarrassment about these conditions. Then the Great Depression sparked a nationwide protest movement. Elderly middle-class people who’d worked and saved all their lives found their savings wiped out. In 1935, with the passage of Social Security, the U.S. joined Europe in creating a system of national pensions. Suddenly a widow’s future was secure, and retirement, once the exclusive provenance of the rich, became a mass phenomenon.”
“Economic growth is breaking up the extended family without yet producing the affluence to protect the elderly from poverty and neglect in India.”
“In the middle part of the 20th century, medicine was undergoing a rapid and historic transformation. Before that time, if you got seriously ill, doctors usually tended to you in your own bed. Whether you survived or not depended on the natural history of the disease itself. Medicine made little or no difference.”
“From WWII onward, the picture shifted radically. Sulfa, penicillin, and then numerous other antibiotics became available for treating infections. Drugs to control blood pressure and treat hormonal imbalances were discovered. Breakthroughs in everything from heart surgery to artificial respirators to kidney transplantation became commonplace. Doctors became heroes, and the hospital transformed from a place of sickness and despondency to a place of hope and cure.”
“Communities could not build hospitals fast enough. In America, in 1946, Congress passed the Hill-Burton Act, which provided massive amounts of funds for hospital construction. Two decades later the program had financed more than 9,000 new medical facilities across the country. For the first time, most people had a hospital nearby, and this became true across the industrialized world.”
“The magnitude of this transformation is impossible to overstate. For most of our species’ existence, people were fundamentally on their own with the sufferings of their body. They depended on nature and chance and the ministry of family and religion. Medicine was just another tool you could try, no different from a healing ritual or a family remedy and no more effective. But as medicine became more powerful, the more hospital became a place where you could go saying, ‘Cure me.’ You checked in and gave over every part of your life to doctors and nurses: what you wore, what you ate, what went into different parts of your body and when. It wasn’t always pleasant, but for a rapidly expanding range of problems, it produced unprecedented results. Hospitals learned how to eliminate infections, remove cancerous tumors, reconstruct shattered bones. They could fix hernias and heart valves and hermorrhaging stomach ulcers. They became the normal place for people to go with their bodily troubles, including the elderly.”
“Meanwhile, policy planners had assumed that establishing a pension system would end poorhouses, but the problem didn’t go away. In America following the Social Security Act of 1935, the number of elderly in poorhouses refused to drop. States moved to close them but found they could not. The reason old people would up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help.”
“Hospitals became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. But hospitals could’ve 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 has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem.”
“When Medicare passed in 1965, the law specified that it would pay only for care in facilities that met basic health and safety standards. A significant number of hospitals, especially in the South, couldn’t meet those standards. Policy makers feared a major backlash from elderly patients being turned away so the Bureau of Health Insurance invented the concept of ‘substantial compliance’ — if the hospital came ‘close’ to meeting the standards and aimed to improve, it would be approved. The category was a complete fabrication with no legal basis, though it solved a problem without major harm — virtually all of the hospitals did improve. But the bureau’s ruling gave an opening to nursing homes, few of which met even minimum federal standards such as having a nurse on-site or fire protections in place. Thousands of them, asserting they were in ‘substantial compliance,’ were approved, and the number of nursing homes exploded — by 1970, some 13,000 had been built — and so did reports of neglect and mistreatment. That year in Ohio, a nursing home fire trapped and killed 32 residents. In Baltimore, a salmonella epidemic in a nursing home claimed 3 lives. With time, regulations were tightened. The health and safety problems were finally addressed. Nursing homes are no longer firetraps. But the core problem persists. The place where half of us will typically spend a year or more of our lives was never truly made for us.”
“It seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.”
“How we seek to spend our time may depend on how much time we perceive ourselves to have. When you’re young and healthy, you’re willing to delay gratification — to invest years, for example, in gaining skills and resources for a brighter future. You seek to plug into bigger streams of knowledge and information. You widen your networks of friends and connections, instead of hanging out with your mother. When horizons are measured in decades, 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.”
“In a study, the younger the subjects were, the less they valued time with the people they were emotionally close to and the more they valued time with people who were potential sources of information or new friendship. However, among the ill, the age differences disappeared. The preferences of a young person with AIDS were the same as those of an old person. In another experiment, when subjects were asked how they’d like to spend a half-hour of their time, the age differences in their preferences were again clear. But when asked simply to imagine they were about to move far away, the age differences again disappeared. The young chose as the old did. Next, the researchers asked them to imagine that a medical breakthrough had been made that would add 20 years to their life. Again, the age differences disappeared — but this time the old chose as the young did. Cultural differences were not significant, either. The findings in a Hong Kong population were identical to an America one. Perspective was all that mattered. As it happened, a year after the team had completed its Hong Kong study, the news came out that political control of the country would be handed over to China. People developed tremendous anxiety about what would happen to them and their families under Chinese rule. The researchers recognized an opportunity and repeated the survey. Sure enough, they’d found that people had narrowed their social networks to the point that the differences in the goals of the young and old vanished. A year after the handover, when the uncertainty had subsided, the team did the survey again. The age differences reappeared.”
“Even when a sense of mortality reorders our desires, these desires are not impossible to satisfy.”
Assisted Living
“The simple but profound service — to grasp a fading man’s need for everyday comforts, for companionship, for help achieving his modest aims — is the one that is still so devastatingly lacking. But with the concept of assisted living, Karen Brown Wilson had managed to embed that vital help in a home.”
“The idea spread astoundingly quickly. Around 1990, based on Wilson’s successes, Oregon launched an initiative to encourage the building of more homes like hers. But a distressing thing happened along the way. The concept of assisted living became so popular that developers began slapping the name on just about anything. The idea mutated from a radical alternative to nursing homes into a menagerie of watered-down versions with fewer services. Wilson testified before Congress and spoke across the country about her increasing alarm at the way the idea was evolving.”
“Assisted living most often became a layover on the way from independent living to a nursing home. It became part of the widespread new idea of a ‘continuum of care,’ which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent movement conditions that would trigger ‘discharge’ to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again. Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms. A survey of 1,500 assisted living facilities in 2003 found that only 11% offered both privacy and sufficient services to allow frail people to remain in residence. The idea of assisted living as an alternative to nursing homes had all but died.”
“What bothered Shelley most was how little curiosity the staff members seemed to have about what her dad cared about in his life and what he’d been forced to forfeit. They didn’t even recognize their ignorance in this regard. They might have called the service they provided assisted living, but no one seemed to think it was their job to actually assist him with living — to figure out how to sustain the connections and joys that most mattered to him. Their attitude seemed to result from incomprehension rather than cruelty, but what’s the difference in the end?”
“Assisted living places tout their computer lab, their exercise center, and their trips to concerts and museum — features that speak much more to what a middle-aged person desires for their parent than to what the parent does. Above all, they sell themselves as safe places. They almost never sell themselves as places that put a person’s choices about how they want to live first and foremost. Because it’s often precisely the patients’ cantankerousness and obstinacy about the choices they make that drive children to bring them on the tours to begin with. ‘We want autonomy for ourselves and safety for those we love.’ That remains the main problem and paradox for the frail. ‘Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.”
A New Vision
“[After adding cats, dogs, and birds to a nursing home], ‘people who we had believed weren’t able to speak started speaking. People who’d been completely withdrawn and nonambulatory started coming to the nurses’ station and saying, ‘I’ll take the dog for a walk.’ All the parakeets were adopted and named by the residents. The lights turned back on in people’s eyes. ‘The residents are really making my life easier; many of them give me a daily report on their birds.’”
“The inhabitants of Chase Memorial Nursing Home now included 100 parakeets, four dogs, two cats, plus a colony of rabbits and a flock of layin hens. There were also hundreds of indoor plants and a thriving vegetable and flower garden. The home had on-site child care for the staff and a new after-school program. Researchers studied the effects of this program over two years, comparing a variety of measures for Chase’s residents with those of residents at another nursing home nearby. The study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation decreased in particular. The total drug costs fell to just 38% of the comparison facility. Deaths fell 15%. The study couldn’t say why, but Thomas thought he could: ‘the fundamental human need for a reason to live.’ And other research was consistent with this conclusion. In the early ’70s, psychologists got a Connecticut nursing home to give each of its residents a plant. Half of them were assigned the job of watering their plant and attended a lecture on the benefits of taking on responsibilities in their lives. The other half had their plant watered for them and attended a lecture on how the staff was responsible for their well-being. After a year and a half, the group encouraged to take more responsibility — even for such a small thing as a plant — proved more active and alert and appeared to live longer.”
“They live like they would live in their neighborhood. They still get to make poor choices for themselves if they choose.”
“The value of autonomy…lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself.”
“All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties. That’s why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life — to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse.”
End of Life
“People with serious illnesses have priorities besides simply prolonging their lives. Surveys find that their 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 those needs, and the most of this failure is measured in far more than dollars. The question is how we can build a healthcare system that will actually help people achieve what’s most important to them at the end of their lives.”
“In the past, when dying was typically a more precipitous process, we didn’t have to think about a question like this. Though some diseases and conditions like tuberculosis had a drawn-out natural history without the intervention of modern medicine, with its scans to diagnose problems early and its treatments to extend life, the interval between recognizing that you had a life-threatening ailment and dying was commonly a matter of days or weeks. Consider how our presidents died before the modern era. Washington developed a throat infection at home that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes and died within two days.”
“These days, swift catastrophic illness is the exception. For most people, death comes only after long medical struggle with an ultimately unstoppable condition, or else just the accumulating debilities of old age. In all such cases, death is certain, but timing isn’t. So everyone struggles with the uncertainty — with how, and when, to accept that the battle is lost.”
“As for last words, they hardly seem to exist anymore. Technology can sustain our organs until we’re well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, or incurable heart failure dying, exactly?”
“A study asked doctors of almost 500 terminally ill patients to estimate how long they thought their patient would survive and then followed the patients. 63% of doctors overestimated their patient’s survival time. Just 17% underestimated it. The average estimate was 530% too high. And the better the doctors knew their patients, the more likely they were to err.”
“Although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40% of oncologists admit to offering treatments they believe are unlikely to work.”
“A 2020 study had startling findings. The researchers randomly assigned 151 patients with Stage IV lung cancer to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist (specialists in preventing and relieving the suffering of a patients, and to see one, no determination of whether they’re dying or not is required; if a person has serious, complex illness, palliative specialists are happy to help). The ones in the study discussed with patients their goals and priorities for if and when their conditions worsened. The result: those who saw a palliative care specialist stopped chemo sooner, entered hospice far earlier, experienced less suffering at the end of their lives, and lived 25% longer. In other words, our decision-making in medicine has failed so spectacularly that we’ve 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.”
“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy and the enemy has superior forces. Eventually, it wins. And in a war you cannot win, you don’t want a general who fights to the point of total annihilation. You want someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end. More often, these days, we march the soldiers onward, saying all the while, ‘You let me know when you want me to stop.’ All-out treatment, we tell the incurably ill, is a train you can get off at any time, just say when. But for most patients and their families we are asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy.”
“In the Netherlands, assisted suicide has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, 1 in 35 Dutch people sought assisted suicide at their death is not a measure of success. It’s a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.”
“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’d support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are just reassured 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.”
“Technological society has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is among life’s most important, for those dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”
