The first thing Dr. Lonny Shavelson thought when he stepped into the room was This is a bad room to die in. It was small and stuffy and there weren’t enough chairs. He would have to rearrange things. He would start by pulling the hospital bed away from the wall, so that anyone who wanted to touch the patient as he died would have easy access to a hand or an arm or a soft, uncovered foot. But first, there were loved ones to greet. They all stood stiffly by the doorway, and Shavelson hugged each of them: the three grown children, the grandson, the puffy-eyed daughter-in-law, and the stocky, silent friend. Then he sat down on the edge of the bed.
“Bradshaw,” he said gently, looking down at the old man lying under the covers. Bradshaw Perkins Jr. blinked and stared vacantly at the doctor. “You don’t know who I am yet, because you’re still waking up,” Shavelson said, buoyantly. “Let me help you a little bit. Do you remember that I’m the doctor who is here to help you die?”
Bradshaw blinked again. Someone had combed his gray hair back, away from his forehead, and he wore a brown T-shirt over age-spotted arms. “It’s the prelude to the final attraction,” he said at last.
This would be Shavelson’s 90th assisted death. Everyone said that no doctor in California did more deaths than Shavelson. He would say that this had little to do with him and more to do with the fact that other doctors refused to perform assisted deaths, or were forbidden to do them by the hospitals and hospices where they worked. Sometimes, Shavelson told me, he got quiet phone calls from doctors at Catholic health systems. “I have a patient,” the doctors would say. “Can you help?”
This patient was dying of cancer. In the past few years, the disease had spread with a kind of berserk enthusiasm from Bradshaw’s prostate to his lungs and into his bone marrow. His body began to ache. At the nursing home just outside Sacramento, California, where the retired veteran had lived for more than a year and had been happy enough—watching TV, eating takeout KFC, flirting with his nurses—he had grown restless, bored, and despairing of the hours before him. When his son Marc came to visit, he would find his father staring at the wall.
Three years earlier, when Bradshaw was living with Marc and growing sicker, he had tried to gas himself to death in the garage. Later he would claim that he’d sat in the driver’s seat for an hour, waiting to die, but that nothing had happened. He had messed something up. Marc wasn’t sure if his father had really meant to die that day. “Hard to say,” Marc told me. “He always claimed he was never depressed and that it wasn’t an issue. He was just tired of life.”
In May 2018, doctors told Bradshaw that he likely had just two or three months left to live. Marc was in the room and thought he saw his father smile. “People try to help me,” Bradshaw said. “But I think I am done needing help.” Bradshaw told Marc that he had lived a good life, but that after 89 years, the bad was worse than the good was good. “I want to pass,” he said. He didn’t want to wait.
“Whoa-kay,” Marc said. And right there, he took out his phone and Googled assisted dying + California.
Marc found a page describing the California End of Life Option Act, which had passed in 2015 and legalized medical aid in dying across the state. It seemed to him that Bradshaw met the requirements: terminal illness, less than six months to live, mentally competent.
Bradshaw said he had already asked his nurses, twice, about speeding up his death, and that each time the nurses had said that they couldn’t talk about it, because it was against their religion. When Marc called the hospice chain that managed Bradshaw’s care, a social worker explained that while the company respected Bradshaw’s choice, its doctors and staff members were prohibited from prescribing drugs in aid-in-dying cases. It was the hospice chaplain, Marc said, who took him aside and told him to look up Dr. Lonny Shavelson.
When Marc searched Shavelson’s name, he saw that the doctor ran something called Bay Area End of Life Options. The medical practice was the first of its kind in California, if not the whole country: a one-stop shop for assisted dying. Many articles praised Shavelson as a medical pioneer—but others were less kind. Some said that physician-assisted death was morally wrong and incompatible with a physician’s duty to heal. To do no harm. Others worried about how assisted dying would affect the physicians, like Shavelson, who performed it. They imagined doctors becoming ethically broken and ontologically confused.
And others had more specific complaints. They accused Shavelson of running a boutique death clinic. He charged $3,000 and didn’t take insurance, and he didn’t offer refunds if people changed their minds.
Marc did some research and found that neither Medicare nor the Department of Veterans Affairs would pay for Bradshaw’s assisted death. Under the 1997 Assisted Suicide Funding Restriction Act, Congress had banned the use of federal funds for “causing or assisting in the suicide, euthanasia, or mercy killing of any individual.” Many people who want an assisted death have to pay privately, and many can’t. One Oregon oncologist, Devon Webster, told me that she met patients who qualified but who couldn’t afford the medications, and in some cases couldn’t even afford gas money to get to the pharmacy. “I guess I’ll take out my rifle and shoot myself,” one of those patients told her. When aid in dying was first legalized, some opponents worried that poor people would be bulldozed into early deaths, but sometimes things worked the other way. Poor patients had to live while richer patients got to die.
Marc didn’t care about the politics. And he could pay. He sent an email to the address on Shavelson’s website: “We would like to enlist your services in this regard.”
Bradshaw formally requested to die on January 9, 2019, starting the clock on California’s mandated 15-day waiting period. Afterward, Shavelson’s nurse sent over the paperwork. Bradshaw had to sign a form pledging that he was “an adult of sound mind” who was making his request “without reservation, and without being coerced.” Bradshaw told Marc that he wanted to sign his name perfectly—but midway through, his handwriting gave way and looped upward into a wispy scrawl.
At their first consultation, it seemed to Shavelson that if Bradshaw let the cancer take its course, it would probably kill him in a few weeks. It was hard to say exactly what that death would look like. It’s possible that he would feel some pain. He might pass through a period of “terminal restlessness” or “terminal agitation,” which can include confusion, paranoia, and hallucinations. Some dying people dream that they are underwater and are trying to swim to the surface to tell someone something, but they can’t get there. Many dream of travel: planes, trains, buses. The metaphors that fill a dying man’s dreamscape can be crude and obvious.
Benzodiazepines could help with the unrest and anxiety. Antipsychotics could ease the visions. Drugged or not, Bradshaw would likely fall into a coma. After a few days or weeks, he would die. The cause of death would technically be dehydration and kidney failure, but the death certificate would recognize his cancer as the underlying killer. Perhaps his children would be at his bedside, but perhaps they would have gone home for the night to get some sleep. One hospice nurse told me that many men let go after their wives leave the room for a bite to eat. People die while nurses are adjusting their bodies, to ease pressure off their bedsores. They die when they get up to pee. Death is not poetry.
After Shavelson graduated from medical school at UC San Francisco in 1977, he went into emergency medicine. He liked the idea of being able to save people quickly and decisively and then, at the end of a shift, forget all about them. He trained himself to forget his patients’ names. It was only later that Shavelson started thinking about people who did not want to be saved.
Shavelson read what he could about dying. He was especially moved by The Enigma of Suicide, published in 1991 by the journalist George Howe Colt, who ridiculed the notion that suffering at the end of life was an opportunity for spiritual ennoblement, and that it was “a person’s duty to stay alive because others insist that pain is good for him.” When he finished reading, Shavelson sent notes to hospice workers around San Francisco, asking for quiet introductions to their patients—so that he could meet them and, later, interview them.
Read: Why I Hope to Die at 75.
In 1995, Shavelson published A Chosen Death: The Dying Confront Assisted Suicide. In it, he told the stories of five suicides, all of them people he had followed in the last weeks of their lives. One chapter was about a profoundly disabled man who tried and then tried again to starve himself to death—until finally, at his rabid insistence, his mother agreed to drug him and hold a plastic bag over his head.
In an especially aching chapter, Shavelson told the story of a 32-year-old trapeze artist named Pierre Nadeau, who was gay and had AIDS and had fallen into a cavernous depression. Through Pierre, Shavelson connected with a shadow network of AIDS sufferers who, “isolated by a society that had rejected them … were making their own rules, and helping one another to die.” Shavelson heard of AIDS patients who bequeathed leftover prescription drugs to other dying AIDS patients, so they could use them for planned overdoses; gay men who, at the first sight of purple skin lesions, started exchanging recipes for suicide cocktails. In Shavelson’s telling, these networks were careful and self-regulating. Nevertheless, their methods sometimes failed them. Some assisted deaths were not completed, or they were agonizing, or they took hours—and sometimes panicked bystanders resorted to pillows, or knives, or guns.
It made sense to Shavelson that AIDS patients were the first to organize in this way. San Francisco was full of young and beautiful men who had watched other young and beautiful men die. Their suffering was immense and their fates were fixed. And yet, for many, just having a lethal drug—or knowing they could get one—appeared to make them feel better. The access was itself a kind of cure. It let a sick person look away from his pain and move on with life, for a while.
Twenty years after A Chosen Death was published, California became the fifth state in America to legalize medical aid in dying. In 2016, 191 Californians received lethal prescriptions under the new law. In 2019, the most recent year for which we have data, that number was 618. What happened in California, advocates knew, would be decisive for the movement. If things went well, it could inspire legislators in other powerhouse states, such as New York. In 2018, I bought a used copy of Shavelson’s book online. I read it through and then I called Shavelson, and then I flew to California.
On my first day there, we sat in his home office in Berkeley, by a window that looked out on a birdcage filled with doves. And then Shavelson, who had written more lethal prescriptions than almost anyone else in the country, spent hours telling me all the ways that the California law was a “shitty law.” The right-to-die lobbyists weren’t willing to say so, Shavelson said, because their objective was simply to pass more laws. But I would see it for myself. “Just sit here and listen.”
The day Bradshaw was scheduled to die, the nursing-home parking lot was full, so Shavelson pulled into a space next door, which belonged to the Christ Fellowship Church. “We’ll tell them we’re just going to kill someone,” he told me brightly. Marc was waiting outside, a middle-aged man with a broad frame and black rectangular glasses. He squinted at us, uneasy.
Inside Bradshaw’s room, someone had hung photographs on the wall: collages of children and grandchildren, close friends and their grandchildren. On the countertop were half-eaten bags of Halloween candy and half-used bottles of hand sanitizer and a plastic cowboy hat—maybe left over from some nursing-home theme night. “Hi, sweetie,” said Cheryl, Bradshaw’s daughter, sitting at the edge of her father’s bed. The others stood around the room.
Shavelson could see that Bradshaw was a more diminished man than he had been just a few days earlier. Opponents of aid in dying imagined that plucky cancer patients would march into their oncologists’ offices to demand lethal drugs, but that wasn’t what Shavelson saw. Most of his patients were almost dead by the time he helped them die. Sometimes, this was because their primary doctors had dragged their heels—delaying the process for weeks or months. About a third of people didn’t make it through the state’s waiting period, because they died naturally or lost consciousness. Or because, when the day arrived, they were too disoriented to fully consent to their own death.
Shavelson had warned the family that confusion could set in. “Let’s put it this way,” he said: “Almost everybody, when they get really close to dying, is demented.” Even so, he had to be convinced that Bradshaw knew what was going on. He didn’t need to know the month of the year or the name of the president, but he had to remember what he was sick with and what he had asked for—and he still had to want it.
“What are you dying from?” Shavelson asked. Then again, louder.
“I’d like to know myself,” Bradshaw said.
“Dad, you have to be serious,” Marc said. Bradshaw said nothing for a while and then recalled that something was wrong with his prostate.
“Okay,” Shavelson said, smiling, “We have a bit of paperwork to do.” Bradshaw groaned. “As you can imagine, the state of California doesn’t let you die easily.”
Shavelson held up a document. “This little paper here is called the ‘Final Attestation.’ The state of California wants you to sign, to say that you are taking a medication that will make you die.” Bradshaw closed his eyes.
“Dad,” Marc urged. “Dad, you have to stay awake for a few minutes … Daddy, you need to sign, right?”
“Dad,” Cheryl said. “Sign your name.”
Bradshaw opened his eyes and signed.
At the sink, Shavelson opened a small lockbox that was filled with $700 worth of respiratory and cardiac drugs. He mixed the first powdered drug into a bottle of juice and passed it to Bradshaw, who drank it quickly. “You did good,” Shavelson said. In half an hour, Bradshaw would drink a second cocktail. Shavelson noted that the time was noon.
Shavelson had warned everyone that he didn’t know how long the death would take. Some patients died in 20 minutes. Others took 12 hours. Once, a patient in Oregon took more than four days. Patients are always asking for “the pill,” Shavelson said, but there is no magic death pill. In fact, it’s surprisingly hard to kill people quickly and painlessly; the drugs aren’t designed for it and nobody teaches you how to do it in medical school. Sometimes, Shavelson had these little-old-lady patients—they were so weak, they looked like a gust of wind might shatter them—and he would give them crazy amounts of toxic drugs, and still they would take hours and hours to die. Even the frailest life clung to itself.
The combination of drugs most commonly used today for assisted deaths was developed in Seattle in 2016, by a small group of physicians and one veterinarian with experience euthanizing animals. Before then, there was no standard protocol; doctors used different drugs, to slightly different effects. That was the thing with the California law; it legalized a new kind of dying, but didn’t specify exactly how the deaths should be accomplished. The goal of the Seattle physicians had been to create a cocktail of readily available medicines that together would end life reliably and quickly and could be made inexpensively at specialty pharmacies. So-called compound drugs, they knew, had a particular advantage; they would not be subject to FDA regulation, which meant if the doctors came up with a formula they liked, they could just start using it.
In the years since, Shavelson had sought to improve the protocol. He had never worked in experimental pharmacology or research, or even in palliative medicine, but he started tinkering: making small modifications and using a pulse oximeter and an electrocardiograph to monitor the effects on his patients’ dying bodies. He tried giving people one of the cardiac medications before the others. He replaced one drug with another. Then he doubled the dose and added an antidepressant that he liked because of its ability to “irritate the shit out of the heart.” Shavelson kept meticulous track of his research but was careful not to call it “research.” Proper research required institutional oversight, and Shavelson didn’t want to deal with that.
Some other doctors in California heard about Shavelson’s amateur maneuvering and were disturbed. What if he got things wrong? One palliative-care physician told me that he saw Shavelson’s work as “pseudo-science”: imprecise and lacking in scholarly rigor, and fundamentally dangerous. Others were just confused by Shavelson’s obsessive quest to shorten his patients’ death times, even if it meant complicating the process. What did a few hours matter, if the patient was unconscious anyway? But Shavelson insisted that speed mattered. People wanted to die quickly. That was literally the point.
At the bedside, everyone was teasing Bradshaw about the women he was going to kiss in heaven. “I hope he gives all the girls a kiss,” Bradshaw’s other son, Sean, said.
“Well, that’s a given,” said Marc’s wife, Stephanie, who couldn’t stop crying. Bradshaw’s flirting had always been a source of family embarrassment. Even in his final years, he was forever hitting on his nurses. Now, on the day of his death, the old humiliations had softened into a hokey inside joke.
“Well, Dad,” said Cheryl, her voice honeyed and uncertain, “I love you. And I’ve enjoyed being your daughter.”
Bradshaw nodded. “You’re the most glorious girl.”
“I know we didn’t always get along,” said Marc, now weeping, “but I always knew that you loved me.”
“I always have and I always will,” Bradshaw said.
“When you get up there,” Marc said, “if there’s a way to let me know, I want you to do it.”
“I’ll try,” Bradshaw said.
Bradshaw had raised his three children without religion. They were a family of devout nonbelievers—and now here they were, imagining afterlife reunions. Maybe Bradshaw’s children did believe in heaven, at least a little. Or maybe they just didn’t see another way to talk about what was happening. Sometimes even the firmest atheists revert to old, holy rites: not because they really trust them, but because they are tired and sad and need the anesthetizing structure of ritual. “The road to death,” wrote the anthropologist Nigel Barley, “is paved with platitudes.”
At his patients’ bedsides, Shavelson also liked to think about ritual. Physician-assisted death was a brand-new kind of dying, and any traditions that developed around it would also be new. As it was, everyone did things differently. Once, a family ordered Chinese food while the patient faded away. Another family ate nothing for hours and instead stood quiet vigil, with fistfuls of shaking rosary beads. One family set up rows of chairs in front of the hospital bed, which made the death seem like a spectacle.
Because his patients’ deaths were scheduled, they could also be choreographed. Loved ones could compose their final words. Old family customs could be played out. Everyone could schedule time off work for the death. Most families, in Shavelson’s experience, managed to pull themselves together and be pleasant at the bedside. Only a few times had someone become overwhelmed and freaked out.
Shavelson stirred the second drug mixture, which had the consistency of tomato juice. “This is the important stuff,” he said. He explained that Bradshaw had to drink the medication himself—the law required that he alone lift the cup to his lips. If he spilled, there was no backup. “Ready to roll?”
“Ready to roll,” Bradshaw said.
“Dad, you have to drink again,” Marc said.
“I’ll make it,” Bradshaw said.
In other countries, I knew, none of this would be happening: the juice, the labored sips, the shaking hands. But in America, doctors were in a special bind. In almost every place where assisted death is legal, such as Canada and Belgium, euthanasia is also legal. This means that patients can choose between two kinds of dying: a drinkable solution or an injection, delivered by doctors. Patients almost always choose the injection. They want their doctors to take care of things. Also, the shots are straightforward and quick and always work. No stress about mixing the solution. No chance of vomiting or waking up, which can happen, albeit very rarely, with the liquid drinks.
Legislators in California, Oregon, and other U.S. states, however, had introduced a “self-administration” requirement to their laws, as a way of winning over skeptics who worried that rogue doctors or bad-apple family members might euthanize sick patients against their will. If patients had to drink the drugs, the thinking went, they were less likely to be coerced. The act of swallowing could be taken as final proof of consent.
But not every patient can drink. As Shavelson’s practice expanded, he met people who were too weak to lift a cup to their lips or who had gastrointestinal systems that were ravaged by disease. Some patients with ALS—also called Lou Gehrig’s disease—could not even suck liquid through a straw. For years, many doctors had turned these people away, with wistful references to legal requirements, but Shavelson didn’t want to do that. He hated the idea that, effectively, a man with prostate cancer might have more rights than a man with esophageal cancer, just because the latter couldn’t swallow large quantities of liquids, or that a woman with breast cancer might have more rights than a woman with brain cancer whose tumor prevented her from moving her limbs. He hated the idea that a patient might choose to die before he was really ready to, out of fear that he might lose the strength in his arms.
Shavelson looked for solutions in the language of the law. A patient, it said, needed to “self-administer” and “ingest” the drugs. But what did “ingest” really mean? Shavelson emailed the California Medical Board. A few days later, the board’s executive director wrote back to say that “ingest” meant anything involving the gastrointestinal system. Shavelson decided that he could be more creative.
Soon, he was delivering the drugs directly into feeding tubes, when patients had them. He would load the medication into a plastic syringe and then hand the plunger to the patient, who would press down on it to “self-administer” and “ingest” the drugs. Sometimes, if a patient was weak, Shavelson would hold the plunger himself and place the patient’s hand on top of his. “If I feel you pushing on my hand,” he would say, “we will push together.” These were legal deaths. And often lovely deaths. But in a way, the whole thing was ridiculous.
Later, Shavelson started administering the drugs rectally for patients with disturbed intestinal systems. He would snake a catheter up the rectum, load the drugs, and then hand the plunger to the patient. When I asked Shavelson if he thought that these deaths were dignified, he looked at me strangely. “It’s not undignified at all.”
Bradshaw had to sip the drink a few times before he could finish it. Afterward, he coughed and gave a thumbs-down because the taste was bitter. “So far, so good,” he said. Then he closed his eyes and his forehead went slack. A few minutes later, he started breathing in a raspy way, and then in a gurgling way. Shavelson said that everything was normal. This was just the way that dying sounded.
For a long time, I had been dismissive of idealized deathbed scenes—at least the ones rendered in many novels and films. Solemn and meaningful. Often transformative. Real-life deaths, I knew, don’t always look that way. But at least Bradshaw was dying with his three children in the room. At least he had known when it was time for last words and could mumble something sweet to his daughter. Maybe this was a good death. Or a good-enough death. Or the best there is.
A half hour passed, and then an hour. Bradshaw’s lips turned beige. Cheryl leaned over to smooth the front of his T-shirt. “It’s a great thing you do,” Stephanie said, turning to Shavelson. “How many states allow this?” Marc asked. “Seven,” Shavelson said. “And D.C.” (That number is now nine.)
“This is peaceful,” Cheryl said. Marc said he wished they had done it earlier. “He hadn’t wanted to be sick.” Then, nearly two hours after the whole thing began, Shavelson looked down at the cardiac monitor. Flatline.
Shavelson listed Bradshaw’s time of death as 1:45 p.m. In the hallway outside, he sat on a bench and called the funeral home. He said that he had a death to report and that it was a medical aid-in-dying death. “Is that legal?” the woman at the funeral home asked.
Within 30 days, Shavelson would have to send an “Attending Physician Follow-Up Form” to the California Department of Public Health. He would answer a series of questions about his patient’s motivations. Had Bradshaw worried about “a steady loss of autonomy”? Or “a loss of dignity”? Shavelson thought the form was silly. How could he really know what Bradshaw had been thinking? How could any doctor know that about any patient? One question asked about “persistent and uncontrollable pain and suffering.” That wording didn’t make sense, Shavelson said, because “pain and suffering” were different things.
On the way out, Shavelson told Marc that the family should all go for a walk. Go for lunch, he said. Go for a drive. Just try not to be there when the funeral-home workers arrived with their transport bags.
I asked Shavelson about his other patients. Most told him that they wanted an assisted death because they didn’t want to die slowly, but some told him other things. One man had terminal cancer but said he wanted to die now for financial reasons. He was a Vietnam War vet, he said, and he couldn’t stop thinking about the Agent Orange attacks. He wanted all his savings to go to Vietnamese victims—not to pay his way through some awful American nursing home. Another had ALS and didn’t want to lose her mobility. She “hated her disability and she died early,” Shavelson said. “She was still walking.”
Sometimes, Shavelson felt like he was refining the eligibility rules as he went. What if, for instance, a 103-year-old wanted to die but didn’t have a specific illness or condition? Could you assume that he had just six months left to live? Sure, Shavelson thought, as long as he scored high enough on a “frailty index” test. What about a cancer patient who was predicted to live another two years—but who refused food and water? Could she qualify, once she was so starved and dehydrated that she was days from death? Shavelson had thought hard about that one and decided that he wouldn’t treat someone who starved herself into a terminal state. If he did, where would it end? A healthy young person could qualify, or an anorexic person.
Sometimes, patients tried to convince Shavelson that he should help them die because of their mental illness. “Here’s their argument: ‘I’m depressed. I’m going to kill myself because of my depression. Therefore, I have a terminal illness. Therefore, I qualify for medical aid in dying.’” There was a certain logic to it, Shavelson said. “But we say no, obviously.”
“We’re winging it here, because that’s what we’ve been doing from day one,” Shavelson said. “I am inventing an entire new field of medicine. I’m not trying to exaggerate this.”
Gary Pasternak, a hospice doctor in San Mateo, told me that he was initially wary of the California law. “I felt like, well, if the patients really need to do this, then somehow palliative medicine has failed them.” But then one of his patients, a nice gentleman with metastatic bladder cancer, shot himself on the patio of his apartment. Afterward, Pasternak thought, “There must have been some other way this could have been handled.”
When the law came into effect, Pasternak said, he resolved to perform an assisted death and see how it felt to him. His first case was a woman in her 90s with lung cancer. Cantankerous. A retired lawyer. “Here’s the plan,” she told Pasternak. “You’ve got to help me do this.”
“All right,” he said. “I’ll try.” Just before Pasternak prepared the lethal medication, and after the woman’s children said their final goodbyes, he asked the woman softly, “Do you have any words of wisdom for us?”
“What the hell are you talking about?” she said. “Just get on with this.” She swallowed the drink and died 20 minutes later. Pasternak decided that it was among the most peaceful deaths he had ever seen.
Still, Pasternak thought it was his job to push back a little, to not let patients die too easily. Sometimes people were more uncertain than they understood themselves to be. Recently, he treated a cancer patient who was sure that she wanted an assisted death. She kept asking when he thought she should die. “Do you think today is the day?”
“Well,” Pasternak would say, “is today good enough to have another day?” She would say that it was. In the end, Pasternak said, “it was good enough every day.” She died a natural death. It was a good death, he thought, apart from “some mild delirium and confusion.”
Many doctors acknowledge that people are dying in physical pain and that the medical profession is sometimes to blame. Doctors promised things they couldn’t deliver: an end to sickness, then an end to aging badly, then an end to aging at all. They treated and overtreated, until their mission to extend life transformed into a system for prolonging dying. And yet, many still insist, helping patients die is not the right way to atone for this historic transgression. A large number of hospice doctors (and the National Hospice and Palliative Care Organization) oppose the aid-in-dying movement.
Shavelson is exasperated by these doctors. After all, they routinely do things that seem to fall just short of euthanasia—what some ethicists call “passive euthanasia.” They help patients turn down lifesaving or life-prolonging care: another round of chemotherapy; a surgery that might help, but might not. They advise families who want to switch off life support for comatose relatives. They clear the way for death and sometimes help speed it up.
And some go further, administering such high doses of morphine that their dying patients fall unconscious and never wake up again. In 1997, the Supreme Court ruled that there was no constitutional right to physician-assisted death—but at the same time, it affirmed that dying people had the right to as much pain-relieving medication as they needed, even “to the point of causing unconsciousness and hastening death.” From then on, “palliative sedation,” which had always occurred behind the scenes, became a mainstream medical intervention. Today it’s hard to say how often palliative sedation is used. Estimates from the national hospice organization are comically imprecise; it says that the “prevalence of the use of palliative sedation in terminally ill patients has been reported between 1% and 52%.”
No national protocols advise doctors on exactly what drugs to use for palliative sedation and how to use them—and no consumer guides tell patients which doctors offer what interventions. A patient has no way to know until she is on her deathbed. Some doctors use palliative sedation only to relieve pain, while others use it to settle restlessness, delirium, and existential distress. Some doctors ask patients if they want to be sedated; others just sedate.
Most controversially, while some doctors will sedate only in a proportional way—titrating drugs slowly, as needed—others, in dire situations, administer a large amount of medication at once, with the express intention of drugging a patient unconscious. For the patient, the distinction between “palliative sedation” and straight-up euthanasia can seem awfully thin. Either way, he ends up dead—maybe right away, or maybe after a few days of sleep, during which he is dead to the world anyway.
“What a bunch of shit,” Shavelson said, when I asked him about this distinction. He thinks the whole thing is a sellout that gives doctors a cover, letting them do whatever they want while mollifying their own moral queasiness: “Doctor knows best.” Why did a patient have to wait until he was almost dead and suffering terribly—and sometimes unable to express his own desires—before he could get relief? And once a doctor was committed to providing relief, why go through an elaborate charade of titrating morphine until the patient fell asleep? Why couldn’t the patient just ask for what he wanted and get it?
When Shavelson first started thinking about assisted death, he read the work of the philosopher Margaret Pabst Battin, who argued that the physician’s pledge to do no harm was about more than not hurting; it meant actively working to relieve suffering. Maybe it even meant staving off future suffering. “Which is the greater evil, death or pain?” Battin wrote. “It is the patient who must choose.”
It seems obvious now that the coronavirus pandemic, in making us encounter death so intensely—in showing us so much death, and such awful death, and at such a close range—has made us think more specifically about our own inevitable ending. What will it look like? There is a thought, among some physicians, that COVID-19 might inspire more interest in assisted dying: a greater yearning for planned and scheduled deaths. Whether or not this comes to pass, Shavelson will not be there to help.
In August, Shavelson stopped accepting new patients. He had always intended to recruit enough doctors to the aid-in-dying cause that his own clinic would become redundant. But in fact, he wrote in a closing announcement, “the success of our practice has worked against our mission.” Many health systems found it easier to refer people to Shavelson than to train their own staff to help dying patients. It was time to bow out. Shavelson hopes that with him gone, others will step in. He hopes that his absence won’t leave frightened, dying people on their own and adrift.
But even if someday plenty of California doctors are willing to do this work, there will still be people who feel abandoned by the system. What I needed to understand, Shavelson said, was that there are rules about who can be helped and who can’t, and sometimes they don’t make sense. Sometimes suffering isn’t enough. Sometimes, a doctor’s hands are tied.
“Everything is going downhill,” said Robert—a pseudonym. He was 81 and looked like a standard-order old man: soft and loose and balding.
Shavelson looked down at his medical records. Robert had cancer, but it was in remission. “It doesn’t look like the cancer is going to kill you,” Shavelson said. He had some heart disease too, “but it’s not going to kill you either.” At least not within six months. Robert felt himself dying, but in the eyes of the law, he wasn’t dying enough.
“You have some memory changes,” Shavelson said. “I understand that this is the most frustrating thing you’re experiencing in the moment.”
Robert nodded. “I really don’t want to live anymore,” he said. “I’m not finding it an interesting thing. Everything is closing in and there is not much left to be looking forward to.” He paused. “I don’t want to make people unhappy in any way. But I don’t want to make me unhappy. I spend more and more time in bed. Trying to be sleepy. Trying to be asleep. What’s going to happen if I get up? … I really don’t want to go and jump off a bridge. I would much rather take a pill and just go out of it like that.”
Shavelson coughed. “So I’m going to tell you what may be bad news for you, based on your desire that you just want a pill and don’t want to jump off a bridge … Unfortunately, we cannot help you at this point to die legally.”
Shavelson thought that Robert should see a geriatric psychiatrist who could talk to him about his sadness, and a physical therapist who could help with his walking. Robert’s husband, on the couch beside him, told Shavelson that they had already consulted with several therapists, but that Robert always refused to do the exercises.
“It’s going to be frustrating,” Shavelson said. “You’re going to be an older, frail man. And sometimes you have to come to terms with that.”
“I don’t really want to come to terms with it,” Robert said. “I’d like to stop it.”
“Well, at this moment, as the doctor who does aid in dying, I cannot help you stop your life.”
“Okay,” Robert said.
“Any other questions, or are we okay?”
“If you were going to prescribe a pill,” Robert said slowly, “what would it be called?”
Shavelson sighed. “It’s actually not a pill.”
This article has been adapted from Katie Engelhart’s new book, The Inevitable: Dispatches on the Right to Die.
Source link