If you scan the media, it looks like half the world is trying to live forever and the other half is fighting for the right to die.
By Jeanette Cooperman, Illustration by Jesse Lenz
She was beautiful. They hadn’t expected that. Lung disease and severe rheumatoid arthritis had laid their claims, making it hard for her to breathe or walk even a few steps. But she had a peaches-and-cream complexion, barely wrinkled, and her thick, wavy white hair fell longer than most women in their late seventies can manage. The two volunteers from the Final Exit Network had arrived a little late after navigating the twisting two-lane road, and she hugged and kissed them with relief.
Her last wish was a few moments alone on her small redwood deck, surrounded by forest. Take as long as you like, they said, watching through the window as she lit one cigarette, then another. She’d already lost about 80 percent of her lung capacity—it didn’t matter anymore.
The moments stretched. The volunteers took slow breaths, fighting to squash the worms of impatience that wriggled through their bodies. Not just impatience, worry: The longer their rental car sat outside, the greater their chance of arrest. And she still had to manage the procedure—were her hands too gnarled and stiff? She’d lit the cigarettes with the grace of long habit...
They wouldn’t say a word to rush her. This was her time.
And she was calmer than they were.
She wore pearl earrings and a long dress, heavier than a nightgown but white, hand-embroidered. Her kids had already come to say their goodbyes; after six months of watching her struggle with every day’s basic needs, they were no longer actively fighting her wishes. She didn’t yet have a life expectancy of six months or less, so hospice wasn’t an option; if she’d lived in one of the five states where a lethal drug can be prescribed, she wouldn’t have been eligible. But she didn’t want to hobble along, unable to tend to herself, gritting her teeth against the pain, wondering how much longer she’d have to wait—and how little breath she’d have left.
Final Exit volunteers used to agree when a member begged them not to notify family members, who might object, but the organization had learned some important lessons in the decade since its founding. Trouble came only when a relative felt shocked and excluded, with no chance to make amends or say goodbye. So one of the new rules was that although a member’s immediate family didn’t have to embrace the decision, they did have to know about it.
She had everything organized and laid out on the table—loving notes, practical arrangements, a jangle of keys. She’d worked out when her body would be discovered (not too soon, lest she be revived and live on, brain-dead) and by whom (so it didn’t shock a stranger, and so her plan didn’t leak to someone who might try to stop her).
She wanted to be in front of a window, looking out at the forest she’d hiked so many times. Her last words, one of the volunteers told me later, were “I’m ready to do this. I’ve been ready for a long time. And I’m at peace with my decision, and I just want to thank you again for being with me.” She knew exactly what to do, they said, and she was unconscious in five minutes, gone in 20.
They waited—they always do, to be sure the person has died and, although it wasn’t necessary in this case, to remove the equipment. They don’t like to give details about that equipment (although it’s all over the Internet and in the book Final Exit), because for someone who’s suffering from depression, suicide can be contagious. (Also because the method’s easy to mock—and becoming less readily available.) They made sure they’d left no fingerprints. Then they sped away.
After we turned 50, my friends and I started cracking bleak jokes about how we’d eat poisoned pudding rather than go to a nursing home; how we intended to walk off a cliff but—wait!—what if we had dementia and forgot to jump? Threaded through the jokes is our terror of a shuffling, drooling decade at the end of life. We’re afraid we’ll wind up helpless and alone—most of us don’t have kids, and we’re traumatized by all those “I’ve fallen and I can’t get up!” commercials. Finally, there’s a sharp awareness of scarce resources; we’re not oblivious to the fact that our generation will either drain the country’s coffers or be denied care.
One evening, I happened on to a 2010 Frontline documentary called The Suicide Tourist and couldn’t turn it off. The man who flew to Switzerland to end his life had such calm, such cool resolve. Could I muster that kind of courage? Will I reach that kind of despair? Or will my “quality of life” (the shorthand that means something different to each of us) change gradually enough that I can keep redefining it?
Medical advances—the kind we’re desperately grateful for, until we’re not—helped create this dilemma. Used to be, our bodies caught up with us faster. At best, people lived long enough to become “senile” and totter around the house for a few years. My mom remembers her grandfather walking with breath-held caution, holding a tablespoon out in front of him, sure there was an egg on it that he must not break.
Today we see the misery of Alzheimer’s, cancer, and neuro-degenerative diseases going on for years and years, and we want to smash that egg. Science has extended our lives well beyond the old concept of “a natural death,” creating a blurry gray zone that can last for decades as chronic conditions pile on top of one another and require decision after decision. The rude shock of someone “dropping dead” has come to seem a blessing.
So why does someone deciding to die—or helping someone who wants to die—rouse any protest at all? Partly it’s instinct: The will to live is fierce, and not as selfish as it might seem. We like to save each other. But the main answer is traditionally religious: We do not own our lives. They are gifts from a creator far wiser than we are, and we don’t get to dispose of them as we choose.
There’s secular hesitation, too: Most of us, at some point, have felt ready to give up—and seen how temporary that feeling can be. We’re a little scared to be given permission. And we’re even more scared to think that someone else might nudge us along. Who gets to decide when hope’s useless? Who says when a life’s no longer worth living? That’s why we want physicians involved: to make sure we’re not just depressed and to assure us that there’s no reliable hope of recovery.
Physician-assisted suicide (or, more gently, “physician-assisted dying” or “death with dignity”) is now legal, under certain strict conditions, in Oregon, Washington, Montana, Vermont, and one county in New Mexico. In Massachusetts, a death-with-
dignity initiative was defeated by only 2 percentage points in 2012, thanks largely to the quiet but forceful opposition of the Catholic Church. This year, similar laws have been proposed in 26 states—including Missouri, where Rep. Kimberly Gardner, a Democrat from
St. Louis who’s both a nurse and a lawyer, wrote a bill last session modeled on Oregon’s law. When it went unheard, she vowed to refile it.
Politicians and authorities are far warier than the general public: Poll after poll shows that a majority of Americans want it to be legal for a physician to help them die. (Gallup’s most recent poll found 68 percent, up 20 points in the past two years.) But those who disagree do so passionately, and they don’t mince words. A recent Charisma News headline asked whether physician-assisted suicide was “The Next Antichrist Agenda to Hit America?”
Among proponents, the comfort zone seems to be a six-month prognosis and a prescription for a drug that you then have to swallow on your own. Many of those advocates are appalled by FEN’s loosened criteria, its insistence that people who are not labeled terminal have a right to choose death, too. And for many FEN members, it’s voluntary euthanasia (legal in Belgium, the Netherlands, Luxembourg, and Colombia) that’s the slippery slope. With voluntary euthanasia, you die at the physician’s hand and not your own.
It’s already happening, all of it. Physicians press vials of morphine into spouses’ hands, in case you need this. The American Academy of Hospice and Palliative Medicine acknowledges “an underground practice that remains largely unstudied.” Back in 1998, in an anonymous survey published in the New England Journal of Medicine, more than 3 percent of U.S. doctors said they’d written a prescription for a life-ending medicine and almost 5 percent said they’d given a patient a lethal injection. And a quick Facebook query yielded an account of a prestigious St. Louis physician who, his family is sure, sped his beloved wife’s death to ease her suffering.
“If you have enough influence and money, this happens easily, in your own home, with your own doctors,” says Ann Mandelstamm, a member of the St. Louis chapter of FEN. “We want everybody to have that option.”
What FEN does is bitterly controversial and lies far outside the pale. It has since 2004, when the first 15 “exit guides” in the U.S. were trained at the Marriott St. Louis Airport hotel. Now based in Florida, FEN offers its services in 50 states; it’s the only right-to-die organization in the U.S. that will help people who have not been told they’ll be dead in six months. FEN works outside the law, but carefully, and uses its own experts—including a physician who once taught ethics at Johns Hopkins University—to evaluate applicants’ medical records and statements.
Why don’t they just wait until that magical six-month window during which so much of the public resistance drops away?
“Because we believe it’s a basic human right to end your life on your own terms,” says Mandelstamm, a retired English teacher. We meet in a quiet pub, and she comes in wearing jeans, her short hair blond, a sweater thrown around her shoulders. She’s healthy, energetic, and busy with a million volunteer projects, but she knows that won’t last forever. And she’s seen enough protracted misery to take this up as one of her many causes. “People with neurodegenerative diseases like ALS or Huntington’s can suffer for years,” she says. “There is pain no medication can touch, like deep bone pain from cancer or trigeminal nerve pain in the face. There are people who can no longer function or care for themselves, and they’re terrified of the suffering that lies ahead of them.”
Careful not to encourage suicide, FEN members are nonetheless determined to make sure that people have the information they need—and don’t have to die alone. Accounts of “exits” sound a bit furtive, almost cultish. They have to be. FEN volunteers never know whether they’re being set up by law enforcement; whether they’ll be seen trashing evidence; whether they’ll be sued by angry relatives or prosecuted years later. They risk ruining their own lives every time they “guide” someone who is suffering unbearably from an irreversible, lethal disease—and is fully rational, and has tried every possible remedy—to a longed-for death.
Still, they’d gone more than a decade and never been convicted of a felony. That changed this June, when a Minnesota jury found FEN guilty of assisting in a 2007 suicide.
The organization had always felt that if it only answered questions—which ought to be free speech, right?—and didn’t provide the means or physically assist in any way, it hadn’t assisted. But the Minnesota jury determined that this sort of speech was not protected under the First Amendment, because it “enabled” someone to commit suicide.
FEN intends to file an appeal this November. Its attorney, Rob Rivas, hopes that the case goes all the way to the U.S. Supreme Court: “I want to see this matter decided on a national level.”
FEN volunteers are afraid that the Minnesota decision could end their efforts altogether. “There’s now a precedent for other states to change or reinterpret their statutes,” says Mandelstamm. “Not only that, but personal injury lawyers could have a field day coming after individuals in Final Exit Network in civil suits. This could shut us down.”
Which is exactly what the Georgia Bureau of Investigation set out to do six years ago, when it launched the investigation that unearthed the Minnesota case.
In the winter of 2009, the GBI set up a sting—an investigator pretending to be suffering with pancreatic cancer. After he’d gone through the application process and been approved, it was agreed that FEN volunteers would come to his home on Burnt Mountain at 2 p.m. on a Wednesday afternoon, February 25, and would stay with him until he died.
At the last minute, agents burst in and arrested the volunteers, triggering the execution of 12 search warrants around the country. At 2:30 p.m. Central, a St. Louis Metropolitan Police Department tactical operations team busted through the doors of a single-story duplex on Oleatha in South St. Louis.
“The target is a 71 year old white male,” the operations plan stated. Six-one, 180 pounds, blue eyes, gray hair. No “weapons or gang affiliations” noted.
Dalton Baker, a retired aeronautical engineer who was FEN’s treasurer, lived on one side of the duplex and looked after his brother George, who lived on the other side and had dementia. Dalton had taken George on an outing, so neither man was home when the team seized Dalton’s iMac, cellphone, three green plastic crates containing Final Exit training documents, and binders and boxes full of membership records and tax returns.
Dalton went on with his life, volunteering for Final Exit and a local hospice, playing senior softball, and tutoring kids in robotics. But in between, he was making anxious calls to lawyers, giving depositions, worrying that he’d wind up in prison and no one would be there to take care of his brother. (George died the next year, and this past January, Dalton died—suddenly and alone, not in an “exit.”)
For all his worry, friends say, Dalton never questioned his actions. He was famous for his gentle precision—“You would’ve wanted him to be your accountant!” says Rivas—and his habit of always asking, “Is this right?” He believed staunchly that people had a right to end their own suffering, peacefully and painlessly, at the time they chose. Years earlier, when his mother and sister had died miserably painful deaths of diabetes and cancer, he’d told himself, “There’s got to be a better way.”
The warrants executed at his duplex and 11 other locations yielded the names of about 523 people who’d asked FEN for help over the years—and 181 who were believed to have received it. The GBI sent out hundreds of letters to law enforcement agencies, warning that deaths attributed to natural causes might have been assisted suicides.
One of those names was Doreen Dunn’s. And the Hastings, Minnesota, prosecutor went after the case.
Dunn’s physician, Dr. Lisa Anderson, had listed her diagnoses in writing: central pain syndrome after a myelogram dye reaction, coccydynia, occipital neuralgia, degenerative disk disease of the entire spine, bilateral thoracic outlet syndrome, sympathetic nerve trunk damage, gastroparesis, pudendal neuropathy, pelvic floor dysfunction, a prolapsed cystocele, and osteoporosis resulting from inactivity. She couldn’t stand for more than 10 minutes at a time, Anderson noted. A surgically implanted pain pump had done nothing.
“I can’t get away from the pain,” Dunn wrote to Final Exit. She was spending her days on a sofa in a darkened room—nights, too, because lying in bed hurt too badly. All she could envision was years in a nursing home. “As of yet,” she wrote, “I have no organ failure.”
According to the Ethical and Religious Directives for Catholic Health Care Services, “patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”
When I interview the Rev. John Paris, a Jesuit bioethicist at Boston College who’s written and spoken on assisted suicide hundreds of times, he exclaims, “If as a society this is what we want, why don’t we go back to having the public executioner? It’s rooted in the American fantasy of autonomy. My students believe that the great philosophical insight is John Stuart Mill: that over his body, every individual is sovereign. That’s utter nonsense. We live in communities, and our actions affect others. My students will say, ‘It’s my body, my right. No one else is involved.’ Well, let’s try your mother.” He blows out air, exasperated. “When you examine this, it gets very fuzzy at the edges.
“The real issue,” he continues, “is how you control this. Once you open it up, how do you put limits on it? If it’s about autonomy, why should you have to be in intractable suffering?” In Oregon, people who ask for the lethal prescription don’t even cite pain as their primary reason, he points out. They want a “death with dignity”—and in traditional religious terms, that is hubris, a self-centered attempt to take God’s power into your own hands.
I ask how much of the issue might be rooted in fear, rather than arrogance. “I suspect a lot of it,” he says. “There’s a certain irony: They fear death, so they want death. It’s Hamlet: ‘If it were done, then t’were well it were done quickly.’”
I know the feeling. I remember whispering in our beloved dog’s curly ear, “Don’t worry, baby, we won’t let you suffer one more minute.” We stroked him and thanked him and the lovely peaceful drug took effect and he fell asleep for the last time. Why should humans have to gulp bitter liquid and try not to vomit, or find elaborate ways to cut off air to their brain? Why can’t we have such a peaceful end?
“Because persons have a greater dignity than animals,” Paris replies. “They are created by God. Well, all the animals are—but they don’t have these rational characteristics.”
So does our rationality, our ability to infuse experience with meaning, oblige us to endure suffering that we would never ask of a less complicated being? Or is it that we’re so caught up in the abstract that we’ve forgotten the simple truths of the body, and we see them far more clearly in the animals we love?
On impulse, I call our longtime veterinarian, Dr. Bill Stehnach, to ask whether he sees a difference. He confides that he used to worry even about euthanizing animals, and at one point he asked his Episcopal priest, “Is God OK with me taking life this way?” The priest told him that he was responsible for protecting life—and that also meant protecting life from suffering. That, and 30 years of fervent thank-you notes from his patients’ families, eased his mind. And then he watched his mother’s slow and painful death, and all he kept thinking was “I would never let one of my patients suffer like this.”
For Dr. George Benson, a St. Louis psychiatrist and psychoanalyst, words were a magician’s doves. He talked his patients back to sanity, and his “Benson rounds” were famous for their emphasis on patients as whole human beings.
But 11 years ago, Benson went into the hospital with a urinary tract infection, seemed a little disoriented, and was given a neurological exam. “He flunked that puppy flat,” says his wife, Virginia Benson. The diagnosis: dementia.
“He was desperately unhappy as his symptoms got worse,” she says. “He would weep—‘I can’t talk. I can’t think.’ I had a regular litany: ‘You’ve helped thousands. You can quit achieving now.’ But there’s a switch that people turn on, and he wanted to turn it off.”
When he needed residential care, she fought to move him from a floor where all the patients’ heads lolled, eyes empty of thought. Then he began to sit in that slumped daze. “He started eating again—his body betrayed his mind,” she recalls, “but he was more and more cognitively impaired. His speech had cadence and a few linking phrases, but the rest of it was gobbledygook.”
She came to want his death as much as he had. “I thought, ‘Y’know, I’ve got a whole lot of oxycodone from various surgeries,’” she says, “and then I thought, ‘Shit. He’s giving his body to the medical school. They’ll know, and I’ll go to jail.’” So she waited in a kind of suspended animation: “He’s here, but he’s not. I’m married, but not really. He’s alive, but not fully.” “Quality of life” had to be recalibrated with every week’s losses.
Now, “George is cognitively impaired enough that most of the time, he’s content,” she says. “Sort of. I know he wouldn’t want this—he told the doctor he would never want life support or to be fed through a tube. But I have learned—and it’s no goddamned help at all—that there is a quality of life for him. He eats; he’s gained weight. There is some kind of communication that goes on between us. Not always. But I can’t wish death upon him now.
“I guess maybe I’ve let go of all the possibilities that he might get better,” she adds with a sigh. “My view on this dying thing has undergone a sharp shift. I no longer feel the urge to free him.” A beat. “But I still pray for him to die.”
She looks out the window for a minute. “I’m very much alone with this,” she says. “Everybody’s scared to talk about it. And they are doubly scared if someone has dementia—as will half of us who reach 85. There’s not a soul in that place who would not, if they had their wits about them, say, ‘I want out. I want out.’ And I do believe we need a way to be able to opt out, some legal framework. But then, how do you know? When do you know? Who decides? Because George can’t decide anymore. I have power of attorney, but I don’t have the right. If he has a physical illness and a full dose of morphine will put him at rest, I’m going to say, ‘Go for it’—but this is not that simple.”
The flashes of understanding that still pass between the Bensons are exactly what Dr. Jeffrey Bishop means when he talks about the “moments of grace” possible even in late-stage Alzheimer’s. “As a culture, do we really want to close off those possibilities?” he asks.
FEN would say yes, if the person makes his plans while still rational. Mary Ann Tipton, a member of the St. Louis chapter, thinks that the real tragedy is the people who put off making arrangements for their death until the dementia takes over.
But Bishop, director of the Albert Gnaegi Center for Health Care Ethics at Saint Louis University, says Christianity’s gift to healthcare is its insistence on the human dignity in every life, its confidence that “even in your dying [or suffering, or disability, or incoherence], something of importance and meaning and beauty is possible.”
Physician-assisted dying is “inevitable societally”—he’s sure of that much. “It’s going to happen. The question is whether it should happen, and my opinion is that it shouldn’t.”
Medicine can ease most pain and can support someone with neurodegenerative disease, Bishop continues. “The thing we can’t do is create a way for those people to feel that their lives are worth living. The question is, what in society makes them feel their lives are not worth living? Rather than saying, ‘Let’s just off these people,’ maybe we should be wondering what’s wrong with us.”
Bishop worries that if the possibility of assisted suicide “is framed as ‘You are too costly’; if it is framed as ‘You are useless to society’; if it is framed as ‘You are a burden to your loved ones’; then many people will say, ‘Oh, OK, yeah, that’s right.’ And if you make it legal, that fundamentally changes the way it will be perceived and deployed in culture. Legalizing it seems to be giving doctors just one more tool in their black bag, only to be deployed in extreme instances in which the patient is suffering terribly. However, physician-assisted suicide is not just one more tool. It fundamentally reframes all the other choices in that black bag.” Soon, he says, people will have to justify why they shouldn’t die—“first to themselves, then to their families and even to doctors who are wondering, ‘Gee, why doesn’t he just end this?’”
I ask whether he agrees with those who’d rather see assisted suicide stay underground, out of the reach of the courts and bureaucracies, purely a question of individual judgment and relationship.
“First of all, I think it’s morally wrong all the time,” he replies, fast, “but if people are so certain this is the most correct thing to do, I still want the sword of Damocles hanging over the doctor’s head. I’ve had people tell me about some pretty shitty situations in which they really felt they had no other option. OK. If it’s true, then risk something.”
The Rev. Hans Küng, a renegade Catholic priest who’s been forbidden to teach theology, has Parkinson’s disease. And when it advances, he fully intends to avail himself of a physician’s assistance. Yes, he says, God gives us life, “but God has made me responsible for this gift.” In an interview with Germany’s Spiegel Online, Küng described “a god of compassion and not a cruel despot who wants to see people spend as much time as possible in a hell of their own pain. In other words, assisted suicide can be the ultimate, final form of helping in life.”
The American Medical Association still finds physician-assisted suicide incompatible with a doctor’s role as healer. But this summer, the California Medical Association became the first state medical association to drop its opposition, and last December, a Medscape Ethics Report found that 54 percent of physicians surveyed approved of physician-assisted suicide.
Dr. Ira Kodner, the Solon & Bettie Gershman Professor Emeritus of Surgery at the Washington University School of Medicine, founded and directed the school’s Center for the Study of Ethics and Human Values. A mild, sweet-faced man, he speaks his mind with unfiltered candor. He specialized in colorectal surgery because nobody wanted to go near patients with holes in their colons. He’s been gently dealing out difficult truths ever since.
“I made a pact with my patients: ‘Just let me know,’” he says. “Every patient with a cancer diagnosis is terrified they are going to die in pain, that they are going to be abandoned by their physicians or caregivers. I promised them that I was always going to give them what they needed to relieve their suffering.” He hesitates. “This was 10 or 15 years ago, in the days when we could bring someone into the hospital and give them major pain relief. But it can be done now, too—usually via hospice.”
Kodner wants to think that hospice and palliative care (aimed at comfort, not cure) are enough to ease our deaths, but he doesn’t oppose physician-assisted suicide. “I think people should have the choice,” he says. “When someone is desperate enough, it just makes a difference for them to have the option. It gives a person an out, when they decide they have suffered enough. In places where physician-assisted suicide is legal, it often isn’t even used. But it’s a huge empowerment.”
In essence, assisted suicide is not that different from what’s called “terminal sedation,” Kodner says, “and that’s done all the time, and no one makes a big deal about it. It happened with my brother.”
Martin Kodner was in the painful last stages of pancreatic cancer, his body weaker by the day as the cancer cells starved his body of nutrition. “He was bedridden and in pain, cognizant but couldn’t take care of his own functions. He was in hospice, and he said, ‘I can’t take the pain anymore.’ I called his doctor that day and said, ‘Martin says he just can’t take it anymore,’ and he said, ‘I understand. I’ll take care of it.’ And they gave him huge doses of pain medication, and he was at peace, and he died the next day.”
That’s perfectly legal, sanctioned even by the Roman Catholic Church because of an ethical test called “double effect.” If a shot of morphine is given primarily to relieve someone of pain and it has the second effect of hastening or even causing death, what matters is that the intent was to relieve pain. Injecting someone with morphine simply because you want to kill them? Different story altogether.
“When hospice runs the way it should, you could make the case that there isn’t really the need for physician-assisted dying,” Kodner says. He thinks Final Exit’s members are overreacting, in their dread of end-stage pain, because in most cases, palliative care can handle it—or up the painkillers.
But what if somebody doesn’t qualify for hospice, I ask. You have to have a life expectancy of six months or less, right?
“You make that prediction,” he agrees evenly, “but no one holds you to it.”
Confused and a little dizzy from the pingpong of opinion, I seek out directors of palliative care programs at local hospitals. Is palliative care enough?
Dr. John “Brig” Buettner directs medical ethics and is developing a palliative care program at St. Luke’s Hospital. Retired from surgery, which he ruefully describes as “a fix-it discipline,” he’s been learning, along with the rest of the medical profession, about the very different approach of palliative care. First recognized as a specialty in 2007, it’s care focused on comfort, not cure. It’s offered in hospice, but it can also be offered alongside more aggressive treatment that is aimed at cure. In Buettner’s opinion, it ought to begin much earlier, so if the “fixing” doesn’t work there’s a less jarring transition to hospice.
Alas, palliative care is not as exciting as curing people, and it doesn’t get reimbursed as fully, and its resignation to the inevitable makes a lot of folks nervous. They think it’s about rationing care, he says, “when really it’s more about effecting rational care.”
He hopes that palliative care docs will get so good at relieving pain and easing fear that the right-to-die movement will, well, die. But he no longer opposes the practice. “I’m starting to be very persuaded that legality, giving a prescription, can be very helpful even if the person doesn’t use it,” he says. “Having that control is enough to enhance their quality of life.” He looks up, his blue eyes clouded. “But I could never write the prescription. I’m not sure a doctor needs to write it. It could be some civil agency or office, once the medical criteria are met…”
He sighs, aware that he, and maybe all physicians, are fast swimming out of their depths. “We’re the intermediaries,” he says. “It’s fallen to us partly because of the secularization of our society—and we have been inadequately trained to deal with these things.”
A debate focused on pain is compelling, because pain terrifies us—but it misses the point. According to the Oregon Public Health Division’s 17 years of data, most people don’t seek assisted suicide because they’re experiencing unbearable pain.
Barbara Coombs Lee is a nurse, physician assistant, and lawyer who’s president of Compassion & Choices, a nonprofit that is working to legalize the right to die. She analyzed Oregon’s data in a 2014 article in the Annals of the New York Academy of Sciences. By then 1,173 people had been written lethal prescriptions and 752 had died by using them. Opponents worry that legalization will result in more deaths among the vulnerable—people with disabilities, minorities, women, people with low incomes. But so far, most of Oregon’s applicants have been white and college educated. Consistently, their top concerns have been loss of autonomy, a decreasing ability to participate in activities that make life enjoyable, and the loss of dignity. After that come losing control of bodily functions and being a burden on caregivers. Fewer than 25 percent listed inadequate pain control; fewer than 3 percent raised financial concerns.
The people who obtained prescriptions were described by their families as “individuals for whom being independent and in control is important.” They attached high importance to controlling the circumstances of their deaths and to dying at home; they worried about the loss of independence and feared a poor quality of life in the future, pain, and the inability to care for themselves.
Ninety percent were enrolled in hospice at the time—and the research shows that hospice patients who did not request a lethal prescription reported more pain, depression, anxiety, labored breathing, and fear of the process of dying than did those who did request one.
Does that mean we should work toward giving people as much control over their bodies’ fate as possible? Or is the craving just a symptom of a shallow society whose members feel that they can’t depend on each other? Are people who want the right to die so obsessed with autonomy that they can’t stand to be humbled by its loss—or just clear-eyed enough to refuse to cling to a life that’s no longer productive or enjoyable?
FEN member Mary Ann Tipton watched her great-grandmother spend four years in a nursing home. “I saw her life…” She slants her hand, a slow coast down a ramp. “That long goodbye.” Tipton shudders, like a terrier getting rid of hated bathwater. “Oftentimes you are described as selfish if you only want a full life—but I’ve really lived a good life, and my idea of a good life is not being incapacitated.”
The palliative care proponents say they’ve got this: They can keep us comfortable enough that we won’t want to die before our time (a phrase that, like “a natural death,” has lost its meaning). I want to believe this. I keep thinking that if we could just remove people’s fear of dying alone, in pain, and “useless” in the world’s eye, we could ease this craving for a scheduled death. I exhale a long breath, relieved to arrive at this conclusion.
Then I talk to Ann Mandelstamm again.
“We’re huge fans of hospice,” she says. “It’s the first thing we talk about when people call. But sometimes I think doctors think it’s a lot better than it is.” She recounts example after example of times when hospice and palliative care fell short. People who couldn’t qualify, or whose pain couldn’t be relieved, or who were terrified of the suffocation ahead of them. Hospices that were understaffed and underfunded (they receive a flat $145 a day reimbursement, regardless).
“My hope is that some farsighted state will eventually pass physician-assisted death legislation in which the main determining factor will be unbearable suffering, to be determined by the patient and physician,” she says. “That would allow the poor souls who have illnesses such as ALS, MS, Huntington’s, dementia, terrible unmitigated nerve pain, or heart and lung conditions where they feel like they’re suffocating to have relief if desired.”
Another member of FEN’s St. Louis chapter, Joann Stephan, has felt that dying should be a right since she was 15 years old, standing by her mother’s hospital bed almost every day for a year and watching cancer eat her away bit by bit. The palliative care would be better today, but there’s still a point when alertness has to be pawned to buy relief, she notes, “and I don’t know if six months in a drug-induced haze is really quality of life.”
Compassion doesn’t make this debate any easier; it leans in both directions. I ask Kodner for another interview, even though I have barely any questions left. We sit staring at each other over coffee.
“Just remember,” he says, “that there is no right answer. What matters is that we talk about it. This is going to be the overriding issue of our time.”
