{"id":8955,"date":"2021-05-17T18:54:51","date_gmt":"2021-05-17T10:24:51","guid":{"rendered":"https:\/\/www.exitinternational.net\/?p=8955"},"modified":"2021-05-30T20:40:56","modified_gmt":"2021-05-30T12:10:56","slug":"the-new-yorker-weve-had-great-success-extending-life-what-about-ending-it","status":"publish","type":"post","link":"https:\/\/www.euthanasia.net\/exit\/the-new-yorker-weve-had-great-success-extending-life-what-about-ending-it\/","title":{"rendered":"The New Yorker: We\u2019ve Had Great Success Extending Life. What About Ending It?"},"content":{"rendered":"

The New Yorker: We\u2019ve 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.<\/p>\n

\u201cJaundice\u201d was common, as was \u201cApoplex,\u201d an old word for a stroke, and \u201cDropsie,\u201d which meant swelling. Other entries seemed to answer the question \u201cHow did he die?\u201d with descriptions\u2014\u201cDead in the Streets\u201d or \u201cStilborn\u201d or \u201cSuddenly\u201d\u2014instead 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 \u201cAged\u201d (thirty-two victims) and \u201cConsumption\u201d (sixty-five) to \u201cScalded in a Brewers Mash\u201d (one).<\/p>\n

For the same reasons that today\u2019s 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 \u201cthe places which are therewith infected, to the end such places may be shunned and avoided.\u201d 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 \u201crare, and extraordinary in the week current.\u201d He didn\u2019t consider this to be odd or unseemly. Death, after all, was the most basic fact of life.<\/p>\n

Eventually, though, Graunt began to wonder if the Bills could be put to \u201cother, and greater uses.\u201d 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 \u201cthe fitness of the Country for long Life,\u201d he believed that it was in its deaths that he would find answers.<\/p>\n

In \u201cExtra Life: A Short History of Living Longer\u201d (Riverhead), Steven Johnson credits John Graunt with creating history\u2019s first \u201clife table\u201d\u2014using death data to predict how many years of remaining life a given person could expect. (One Dutch contemporary, a proto-actuary, took Graunt\u2019s tables a bit too literally, writing confidently to his brother, \u201cYou will live to until about the age of 56 and a half. And I until 55.\u201d) In fact, Graunt\u2019s estimates were more of a guess than a calculation: when he wrote his treatise, in the sixteen-sixties, the Bills of Mortality didn\u2019t record people\u2019s age at death, and they wouldn\u2019t 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.<\/p>\n

Johnson calls this phenomenon \u201cthe long ceiling.\u201d 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: \u201cHuman 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.\u201d<\/p>\n

That began to change in the eighteenth and nineteenth centuries. In what the economist Angus Deaton has named \u201cthe great escape,\u201d 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.<\/p>\n

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.<\/p>\n

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\u2014even 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, \u201cThe Ghost Map,\u201d about the disease detectives who investigated a cholera outbreak in the early days of germ theory. Yet he cautions that it\u2019s shortsighted to think of these advancements in terms of a few brilliant geniuses having eureka moments.<\/p>\n

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\u2014the creation of public institutions that could systematically track health data, require that drugs be tested and regulated, or enforce simple safety measures.<\/p>\n

From the Mother of an Incarcerated Son<\/strong><\/p>\n

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, \u201cabout 36 of them die before they be six years old.\u201d 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 \u201cperhaps but one surviveth 76.\u201d 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, \u201cbeing a child was to forever be on the brink of death.\u201d<\/p>\n

And the peril was universal. Before the advent of proper hygiene and effective medicine, the children of the \u00e9lite 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 \u201cmedical\u201d 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\u2014and he died at age eleven.) Extra life was one thing money could not buy.<\/p>\n

But that equality of loss would soon change. Deaton showed that the great escape was accompanied by another trend, which is now known as \u201cthe great divide.\u201d In the past couple of centuries, as changing conditions increased life expectancies within wealthy nations, average life expectancies in poorer ones\u2014the ones bearing the brunt of imperialism, resource extraction, and disease imposed by the wealthy\u2014got 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. \u201cOf all the forms of inequality,\u201d Martin Luther King, Jr., said in 1966, by which time the divide was entrenched, \u201cinjustice in health is the most shocking and the most inhuman.\u201d 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.<\/p>\n

Johnson includes a few caveats about all those extra days (their unequal distribution; their effect on our overburdened planet), but he can\u2019t help being dazzled by the numbers\u2014that 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\u2019s not. He\u2019s interested in the transhumanism enthusiasts of Silicon Valley, and the possibility that epigenetics may soon allow us to \u201cturn off\u201d the aging process in our cells, giving us ever more years of life\u2014\u201cthe Moore\u2019s Law of public health.\u201d 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 \u201cbetween the rich and the poor, the immortals and the mortals.\u201d But it\u2019s 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?<\/p>\n

\"The<\/a><\/p>\n

The New Yorker: We\u2019ve Had Great Success Extending Life. What About Ending It?<\/strong><\/em><\/p>\n

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<\/strong><\/a>.<\/p>\n

Exit, as it\u2019s 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, \u201cThe Peaceful Pill Handbook<\/strong>,\u201d which offers details and advice about various methods for ending one\u2019s life.<\/p>\n

The founder of the group\u2014who is often compared to Jack Kevorkian\u2014and various of its members, scattered all over the globe, are among the central characters of Katie Engelhart\u2019s \u201cThe Inevitable: Dispatches on the Right to Die<\/strong>\u201d (St. Martin\u2019s). 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, \u201cIt would be hard to exaggerate how many people told me that they wish simply for the same rights as their cherished dogs\u2014to be put out of their misery when the time is right.\u201d<\/p>\n

One woman, an Upper West Side Manhattanite whom Engelhart calls Betty, was inspired to read the \u201cHandbook\u201d after watching an old friend live into his nineties; in her eyes, he was suffering and depressed, and doctors, whose only philosophy was \u201cSave a life! Save a life! Save a life!,\u201d weren\u2019t 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\u2019s 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 \u201cpull the little-old-lady cover\u201d 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\u2019s time.<\/p>\n

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 \u201ccompression of morbidity\u201d 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 \u201cexpansion of morbidity\u201d 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<\/strong> 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 \u201cpredominantly through the technological advances that have been made in extending the life\u201d of people who were sick, and experiencing various degrees of suffering. As Engelhart writes, \u201cIncreases in life expectancy have been accompanied by more years of age-induced disability. Aging has slowed down, rather than sped up.\u201d This was exactly what Betty and her friends had hoped to avoid.<\/p>\n

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 (\u201cWell, Dad, I love you,\u201d 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\u2019s own terms. \u201cMaybe that was a good death,\u201d Engelhart reflects when it\u2019s over. \u201cOr a good enough death. Or the best there is.\u201d<\/p>\n

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 \u201cright\u201d?) 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 \u201cmodern medicine\u2019s original sin: believing that we can vanquish death.\u201d<\/p>\n

Avril<\/strong> 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. \u201cMy body served me obediently for eighty years,\u201d she writes, \u201cbut is now, quite suddenly, in every sense, unserviceable and well past its sell-by date.\u201d 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<\/strong>, 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\u2019ll know that the time has come to buy a plane ticket.<\/p>\n

Another subject, Debra<\/strong>, has dementia, a diagnosis with uncertainties of timing and competence that generally keep it outside the laws governing assisted death. She\u2019s so afraid of her growing confusion that a friend suggests a note for her bathroom mirror\u2014\u201cDEBRA, YOU ARE DEBRA. THIS IS YOUR HOME. YOU ARE SAFE\u201d\u2014but instead she asks a volunteer \u201cexit guide\u201d (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<\/strong>, 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\u2019s update of its assisted-dying law. \u201cIt\u2019s a no-win situation here,\u201d Adam\u2019s father tells Engelhart. \u201cI lose my son or I watch my son suffer.\u201d<\/p>\n

Adam\u2019s story is particularly fraught\u2014he has declined some treatments, and seems to be driven, in part, by a desire for attention and by feelings of personal disappointment. (\u201cA life of mediocrity is not worth living,\u201d 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.<\/p>\n

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\u2019s existing discrimination\u2014and from an expectation that they will make use of what one advocate dismisses as \u201ca medical treatment for feeling like a burden\u201d? 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 \u201cwould never want to live like that,\u201d 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, \u201cthere 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.\u201d<\/p>\n

That word \u201crationality\u201d comes up again and again. Doctors who specialize in aid in dying often distinguish between \u201cdespair suicides,\u201d the most familiar version, and \u201crational suicides,\u201d 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\u2019s 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 \u201cdignity\u201d (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\u2019s 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.<\/p>\n

And they worry, especially, about money, which crops up repeatedly as Engelhart\u2019s subjects weigh the options that are available to them. Maia says that one of the main reasons she wants to \u201cexit,\u201d as she calls it, is \u201cthe pure socioeconomics of MS\u201d: 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 \u201cif I had money and people who I cared about and cared about me,\u201d but she\u2019s working with the choices she has, in the society where she lives.<\/p>\n

Given our profit-driven health-care system, highly unequal economy, and hole-riddled social safety net, Engelhart finds herself wondering how often \u201crational suicide was just a symptom of social and financial neglect, dressed up as moral choice.\u201d The great escape and the great divide, still intertwined.<\/p>\n

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.<\/p>\n

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\u2019s known as \u201covertreatment\u201d 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, \u201coften 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.\u201d<\/p>\n

America spends more per capita on health care than any other nation\u2014much of it in the final year of patients\u2019 lives\u2014but 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 \u201cdeaths of despair\u201d are soaring; suicide rates are higher for the elderly than for any other demographic; doctors report plenty of what one calls \u201cpseudo-conversations,\u201d in which suffering patients ask for sleeping pills or painkillers that both parties know, but do not acknowledge, are for another purpose.<\/p>\n

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\u2019t be extricated from a right to care. One of the doctors Engelhart interviews\u2014an oncologist in Belgium, where euthanasia laws are widely supported, and aid in dying is legal even for psychiatric patients who request it and qualify\u2014tells her that America is not ready for such laws. \u201cIt\u2019s a developing country,\u201d he says. \u201cYou shouldn\u2019t try to implement a law of euthanasia in countries where there is no basic healthcare.\u201d<\/p>\n

Johnson\u2014in the midst of his excitement about that graph of life expectancy, climbing ever upward\u2014pauses 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.\u00a0♦<\/p>\n

Published in the print edition<\/a> of the May 17, 2021, issue, with the headline \u201cGood Years.\u201d<\/em><\/p>\n

Brooke Jarvis is a contributing writer for the Times Magazine.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

The New Yorker: We\u2019ve 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 […]<\/p>\n","protected":false},"author":2,"featured_media":8960,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0},"categories":[1,30],"tags":[],"yoast_head":"\n\n\n\n\n\n\n\n\n\n\n\n\t\n\t\n\n\n\t\n