May 17, 2021
The New Yorker: We’ve Had Great Success Extending Life. What About Ending It?
Brooke Jarvis, The New Yorker
The New Yorker: We’ve Had Great Success Extending Life. What About Ending It? – Throughout most of the seventeenth century, residents of London could buy, from street hawkers who fought one another for sales territory, a peculiar sort of newspaper. It cost a penny, sold about five or six thousand copies a week, and consisted of a single page. On one side, readers would learn how many of their neighbors had died the previous week, in each parish. On the other, readers would learn what was believed to have killed them.
“Jaundice” was common, as was “Apoplex,” an old word for a stroke, and “Dropsie,” which meant swelling. Other entries seemed to answer the question “How did he die?” with descriptions—“Dead in the Streets” or “Stilborn” or “Suddenly”—instead of actual causes. The deaths were usually assessed and recorded by pairs of older women, who were employed by parishes to go to the local church whenever its bell tolled a death. During one February week in 1664, these searchers, as they were known, recorded three hundred and ninety-three burials across the city. Death causes and counts ranged from “Aged” (thirty-two victims) and “Consumption” (sixty-five) to “Scalded in a Brewers Mash” (one).
For the same reasons that today’s newspapers report coronavirus case numbers on their front pages, the London papers, known as Bills of Mortality, became particularly popular when disease swept through the city. During the 1665 plague, Samuel Pepys wrote in his diary about feeling saddened or cheered by the latest numbers from the Bills, while a contemporary named John Bell noted that the Bills allowed people to know “the places which are therewith infected, to the end such places may be shunned and avoided.” But most of the time, according to the London merchant John Graunt, the Bills were little more than matters of curiosity, especially if there were deaths that were “rare, and extraordinary in the week current.” He didn’t consider this to be odd or unseemly. Death, after all, was the most basic fact of life.
Eventually, though, Graunt began to wonder if the Bills could be put to “other, and greater uses.” He painstakingly collected and organized decades of the death records, creating long tables of numbers. These first known tabulations of population-level health data are now widely recognized as the birth of epidemiology. Graunt pored over them. What types of death were most common? Which groups did they afflict? Why did some causes spike at certain times, while others stayed fairly constant? And, most of all, what could a lot of separate, individual deaths, taken together, tell him about the society in which they occurred? Although Graunt wanted, as he put it in a treatise, to understand “the fitness of the Country for long Life,” he believed that it was in its deaths that he would find answers.
In “Extra Life: A Short History of Living Longer” (Riverhead), Steven Johnson credits John Graunt with creating history’s first “life table”—using death data to predict how many years of remaining life a given person could expect. (One Dutch contemporary, a proto-actuary, took Graunt’s tables a bit too literally, writing confidently to his brother, “You will live to until about the age of 56 and a half. And I until 55.”) In fact, Graunt’s estimates were more of a guess than a calculation: when he wrote his treatise, in the sixteen-sixties, the Bills of Mortality didn’t record people’s age at death, and they wouldn’t for another half century. Yet his guesses about survival rates for different age groups turned out to be remarkably accurate in describing not just London at the time but humanity as a whole. For most of our long history as a species, our average life expectancy was capped at about thirty-five years.
Johnson calls this phenomenon “the long ceiling.” Analysis of ancient burial sites, of modern people living in hunter-gatherer societies, and of pre-industrial city dwellers all tell a similar story, Johnson writes: “Human beings had spent ten thousand years inventing agriculture, gunpowder, double-entry accounting, perspective in painting, but these undeniable advances in collective human knowledge had failed to move the needle in one critical area.”
That began to change in the eighteenth and nineteenth centuries. In what the economist Angus Deaton has named “the great escape,” average life expectancies broke the ceiling: what had been a very long, flat line finally rose, at first gradually and then dramatically. Between the Spanish flu of 1918 and the coronavirus pandemic of 2020, global life expectancy doubled. These developments, Johnson argues, should be printed in newspaper headlines and hawked on street corners like the old Bills of Mortality. Extra, extra: The average human has received thousands and thousands of extra days in which to live.
Johnson tries to account for those days. Which scientific or civilizational advancements should we thank for them? He groups innovations by those which have saved millions of lives (this list begins with the AIDS cocktail, anesthesia, and angioplasty), hundreds of millions of lives (here the roster goes from antibiotics to pasteurization), and, finally, billions of lives, a small but illustrious pantheon of three: artificial fertilizer, hygienic plumbing, and vaccines.
Johnson gives a hasty tour of the stories behind a few of these life-giving innovations. He explains how centuries-old practices in China, India, and the Middle East eventually inspired a vogue for smallpox variolation among the British aristocracy in the eighteenth century—even then, you needed an influencer to start a trend. And he returns to the same well, or, rather, pump handle, that featured in his 2006 book, “The Ghost Map,” about the disease detectives who investigated a cholera outbreak in the early days of germ theory. Yet he cautions that it’s shortsighted to think of these advancements in terms of a few brilliant geniuses having eureka moments.
Instead, the innovations that have saved the most lives are the product of piecemeal improvements, built on networks of support and inspiration, and spread by social movements. Most were not blockbuster therapies or expensive medicines but unsexy, low-tech ideas, like water chlorination or better techniques for treating dehydration. Almost none, he points out, came from profit-seeking companies. And many were just advancements in basic bureaucracy—the creation of public institutions that could systematically track health data, require that drugs be tested and regulated, or enforce simple safety measures.
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The most effective changes have to do with saving the lives of children. When Graunt analyzed London deaths, he estimated that, for every hundred children conceived, “about 36 of them die before they be six years old.” Twenty-four more died before reaching the age of sixteen, fifteen more before turning twenty-six, and so on, the rate of attrition falling slightly with each decade until “perhaps but one surviveth 76.” For much of human history, our early years were so stalked by disease and infection and diarrhea that between a third and a half of us never escaped our own perilous childhoods. Especially in the long years before smallpox was eradicated, Johnson writes, “being a child was to forever be on the brink of death.”
And the peril was universal. Before the advent of proper hygiene and effective medicine, the children of the élite died just as often and just as early as those of the poor. The rich may even have died more often, since they could pay for the treatments of the time, which generally did them more harm than good. (Readers are given grim descriptions of the illnesses of George III and his foe George Washington, both of whom were made sicker by the “medical” care they received, and reminded that George III became king only because the Stuart line had ended with Queen Anne, a half century earlier. Despite her wealth and power, and despite eighteen pregnancies, only one of her children survived past the age of two—and he died at age eleven.) Extra life was one thing money could not buy.
But that equality of loss would soon change. Deaton showed that the great escape was accompanied by another trend, which is now known as “the great divide.” In the past couple of centuries, as changing conditions increased life expectancies within wealthy nations, average life expectancies in poorer ones—the ones bearing the brunt of imperialism, resource extraction, and disease imposed by the wealthy—got shorter. Eventually, average lives lengthened around the world, narrowing the gap, but they still lengthened substantially more for some people, in some places, than for others. “Of all the forms of inequality,” Martin Luther King, Jr., said in 1966, by which time the divide was entrenched, “injustice in health is the most shocking and the most inhuman.” Even in modern American cities, people born into poor neighborhoods can expect to live as many as thirty years fewer than people who are born in affluent ones across town. And that was before the covid-19 pandemic further widened our existing gaps.
Johnson includes a few caveats about all those extra days (their unequal distribution; their effect on our overburdened planet), but he can’t help being dazzled by the numbers—that impressive slope as the line on the graph climbs ever upward. When he suggests that the charts imply an unstoppable increase, on the way to an average life expectancy of a hundred and sixty years, it seems at first as if he were joking. He’s not. He’s interested in the transhumanism enthusiasts of Silicon Valley, and the possibility that epigenetics may soon allow us to “turn off” the aging process in our cells, giving us ever more years of life—“the Moore’s Law of public health.” This would transform nearly everything about the structure of the world as we know it, he grants, and create a breathtaking new level of inequality “between the rich and the poor, the immortals and the mortals.” But it’s clear what choice he expects society would make if it had the option. Why would anybody, given the chance to live longer and longer, say no?
The New Yorker: We’ve Had Great Success Extending Life. What About Ending It?
In October of 2016, a small group of people, many of them elderly women, attended a seminar and a potluck lunch outside Wellington, New Zealand. On the drive home, they were stopped by police officers who seemed to be checking for drunk drivers. The roadblock turned out to be a trick, a way to identify members of an organization called Exit International.
Exit, as it’s known to those involved, is a nexus for coffee chats and workshops, online forums and local chapter meetings. Its members, according to the group, have an average age of seventy-five, and many of them are owners of its manual, “The Peaceful Pill Handbook,” which offers details and advice about various methods for ending one’s life.
The founder of the group—who is often compared to Jack Kevorkian—and various of its members, scattered all over the globe, are among the central characters of Katie Engelhart’s “The Inevitable: Dispatches on the Right to Die” (St. Martin’s). A remarkably nuanced, empathetic, and well-crafted work of journalism, it explores what might be called the right-to-die underground, a world of people who wonder why a medical system that can do so much to try to extend their lives can do so little to help them end those lives in a peaceful and painless way. Engelhart writes, “It would be hard to exaggerate how many people told me that they wish simply for the same rights as their cherished dogs—to be put out of their misery when the time is right.”
One woman, an Upper West Side Manhattanite whom Engelhart calls Betty, was inspired to read the “Handbook” after watching an old friend live into his nineties; in her eyes, he was suffering and depressed, and doctors, whose only philosophy was “Save a life! Save a life! Save a life!,” weren’t thinking about what that meant for him. Wanting more agency to decide when she was finished with living, Betty travelled to Mexico, following the manual’s advice, to buy a stockpile of a lethal drug. She seems excited to tell the story of her illicit adventure: how she bought the drug at a pet store, prepared to “pull the little-old-lady cover” if police stopped her; how she and her two best friends have made a pact for how to use it if and when they decide that it’s time.
In recent decades, the increase in life expectancy has triggered a debate among gerontologists: Would the extra years people were living be years of health and well-being? This scenario is known as the “compression of morbidity” theory, according to which improving health would mean that the primary pains and diseases of aging could be squeezed into an increasingly short period at the end of life. The other possibility, known as the “expansion of morbidity” theory, hypothesized the opposite: that more years of life would be achieved mostly through more people spending more time living with pain and disease and dementia. By the turn of the twenty-first century, an editorial in the journal Age and Ageing had noted that the latest trends seemed to be favoring the second theory, with extra years being achieved not through better over-all health but “predominantly through the technological advances that have been made in extending the life” of people who were sick, and experiencing various degrees of suffering. As Engelhart writes, “Increases in life expectancy have been accompanied by more years of age-induced disability. Aging has slowed down, rather than sped up.” This was exactly what Betty and her friends had hoped to avoid.
In the United States, physician-assisted suicide is permitted in a slowly growing number of states, but only to ease the deaths of patients who fit a narrow set of legal criteria. Generally, they must have received a terminal diagnosis with a prognosis of six months or less; be physically able to administer the drugs to themselves; have been approved by doctors as mentally competent to make the decision; and have made a formal request more than once, including after a waiting period. In California, Engelhart attends the planned death of an eighty-nine-year-old man named Bradshaw, who is dying painfully of cancer. Bradshaw takes a fatal drug cocktail in the company of his family (“Well, Dad, I love you,” his daughter says uncertainly, as they wait) and a doctor who specializes in just this part of medicine: not saving lives but, instead, helping them end on something a little closer to a patient’s own terms. “Maybe that was a good death,” Engelhart reflects when it’s over. “Or a good enough death. Or the best there is.”
Even in this regulated world, there are lots of difficult questions. (If doctors bring up assisted death with their patients, is that discussing options or influencing their choice? How does aid-in-dying interact with hospice? With organ donation? How does anyone really know when the time is “right”?) But Engelhart finds that the world of people who would like doctors to help them die is far larger, and much more complex, than what current laws cover. Venturing into, and beyond, the legal fringes of the assisted-dying movement, she finds people who do not officially qualify for a medically assisted death but long for it, anyway. All feel abandoned by a medical system that they believe ignores their suffering because of what one palliative-care doctor describes as “modern medicine’s original sin: believing that we can vanquish death.”
Avril is a woman in England who, entering her eighties, suffers nearly constant pain and the indignities of age but is not actually dying of anything more diagnosable than the slow collapse of her body. “My body served me obediently for eighty years,” she writes, “but is now, quite suddenly, in every sense, unserviceable and well past its sell-by date.” She obtains the same drug that Betty did, and begins to tell her acquaintances of her plans to die. Then, late one night, the police burst through her front door. Medical professionals eventually deem her mentally competent, but the police still confiscate a bottle they find. Maia, a young woman with a severe and painful form of progressive multiple sclerosis, does not qualify; although she has received a terminal diagnosis, her death is not considered imminent enough, regardless of how she feels about the bearability of her suffering. She applies for admission to a death clinic in Switzerland, where laws are more permissive, but then wonders, for years, how she’ll know that the time has come to buy a plane ticket.
Another subject, Debra, has dementia, a diagnosis with uncertainties of timing and competence that generally keep it outside the laws governing assisted death. She’s so afraid of her growing confusion that a friend suggests a note for her bathroom mirror—“DEBRA, YOU ARE DEBRA. THIS IS YOUR HOME. YOU ARE SAFE”—but instead she asks a volunteer “exit guide” (affiliated not with Exit International but with another group, the Final Exit Network) to help her die before she becomes someone she fears and does not recognize. A fourth subject, a Canadian named Adam, live-streams videos of himself on the Internet, talking about his plans to take his own life; he wants his pain, which results from mental illnesses rather than physical ones, to be included in Canada’s update of its assisted-dying law. “It’s a no-win situation here,” Adam’s father tells Engelhart. “I lose my son or I watch my son suffer.”
Adam’s story is particularly fraught—he has declined some treatments, and seems to be driven, in part, by a desire for attention and by feelings of personal disappointment. (“A life of mediocrity is not worth living,” he writes on his blog.) Engelhart eventually becomes so uncomfortable with her role as a journalist in his life that she cuts off communication with him. But she also finds that all such situations are complicated in their own ways, are their own unique versions of unwinnable.
Engelhart gives eloquent voice to different sides of the intricate arguments that ensue when societies decide whether and how and to whom medical assistance in dying should be available. Does excluding people like Maia discriminate against them, as Maia argues, or does it protect them, as many disability-rights advocates contend, from society’s existing discrimination—and from an expectation that they will make use of what one advocate dismisses as “a medical treatment for feeling like a burden”? If people with dementia were allowed aid in dying, at what point in their decline would they be considered competent to make the decision? For that matter, whose choice would we listen to: the earlier, cognitively intact person who insisted that she “would never want to live like that,” or the current one, who may no longer remember feeling that way, and may seem to still find plenty of pleasure in life? And what about mental illness? One psychiatrist, noting that oncologists will eventually acknowledge that nothing further can be done to stop a cancer, wonders why her field keeps trying ever more rounds of treatment, as if it could not come to terms with its own therapeutic limits. During her education, she notes, “there was no discussion at all about whether a wish to die could ever be a rational response to any illness, let alone a mental illness.”
That word “rationality” comes up again and again. Doctors who specialize in aid in dying often distinguish between “despair suicides,” the most familiar version, and “rational suicides,” those sought by people who have, in theory, weighed a terminal or painful or debilitating diagnosis and made a measured, almost mathematical choice about how best to deal with it. In practice, though, Engelhart finds that it’s hard to isolate pure rationality; many emotional factors always seem to tilt the scales. People worry about their lives having a sense of narrative integrity and completion. They worry about autonomy, and about “dignity” (this is another word that comes up a lot, and when Engelhart digs in she finds that many people define it quite specifically: control over one’s own defecation and mess). They worry about what other people will think of them. They worry about who will take care of them when they can no longer take care of themselves.
And they worry, especially, about money, which crops up repeatedly as Engelhart’s subjects weigh the options that are available to them. Maia says that one of the main reasons she wants to “exit,” as she calls it, is “the pure socioeconomics of MS”: the expensive treatments, her inability to work, being rejected by Medicaid, reading about how often people with similar disabilities end up living in poverty, watching her funds dwindling away. Debra, who is at risk of losing her home because of a reverse mortgage her late husband signed after their medical bills mounted, sends Engelhart articles about the cost of long-term-care homes, and worries about what sort she might end up in. She grants that her decision about leaving the world would be different “if I had money and people who I cared about and cared about me,” but she’s working with the choices she has, in the society where she lives.
Given our profit-driven health-care system, highly unequal economy, and hole-riddled social safety net, Engelhart finds herself wondering how often “rational suicide was just a symptom of social and financial neglect, dressed up as moral choice.” The great escape and the great divide, still intertwined.
John Graunt is remembered today as the father of data-driven epidemiology, but you could argue that his greatest insight was simpler, and deeper: that you could tell a lot about how people lived within a society by the way they died. He also realized that seeing those patterns offered an opportunity to try to change them.
Engelhart cites a survey showing that today about half of Americans feel that patients have too little control over the medical decisions that will determine how their lives end. What’s known as “overtreatment” is a real problem; though most people report a desire to die peacefully at home, one in five among the elderly has surgery in a hospital in the month before death, “often supported by loved ones who would do anything to help and who have come to see any option short of do everything as a kind of terrible abandonment.”
America spends more per capita on health care than any other nation—much of it in the final year of patients’ lives—but our inequality and our failures in other areas of public health keep our over-all life expectancy well below that of other rich nations. Health-care-related bankruptcies and what Angus Deaton and Anne Case, his collaborator and spouse, call “deaths of despair” are soaring; suicide rates are higher for the elderly than for any other demographic; doctors report plenty of what one calls “pseudo-conversations,” in which suffering patients ask for sleeping pills or painkillers that both parties know, but do not acknowledge, are for another purpose.
People like Betty take a long look at this system and then decide to stockpile barbiturates from foreign pet stores. Behind every fraught ethical debate about physician-assisted suicide stands this inescapable reality: there are many people for whom the way we do things is not working. The right to die can’t be extricated from a right to care. One of the doctors Engelhart interviews—an oncologist in Belgium, where euthanasia laws are widely supported, and aid in dying is legal even for psychiatric patients who request it and qualify—tells her that America is not ready for such laws. “It’s a developing country,” he says. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.”
Johnson—in the midst of his excitement about that graph of life expectancy, climbing ever upward—pauses for an acknowledgment. If you poll people about their hopes for their own lives, the answer is that most do not actually want to live longer than current natural limits allow. What they want, in the time available, is to live better. ♦
Published in the print edition of the May 17, 2021, issue, with the headline “Good Years.”
Brooke Jarvis is a contributing writer for the Times Magazine.