Last Will

Debora ended her life on a clear spring night in a Japanese hotel in San Francisco.

She had sent her farewells to a few of us— close friends and her sister’s family—and left final instructions on the table beside the bed. Just after midnight, she drank two small bottles of the barbiturate, Nembutal, washed down the bitter taste with fruit juice, fastened a plastic bag over her head, and lay down on the bed to die. She knew it would be quick. “Please don’t call it suicide,” Debora wrote in a note she left for the coroner. “Call it a voluntary death.” Two days later the coroner telephoned Debora’s sister in Italy. “I’m sorry,” he told her, “I have to check suicide as the cause. But you should know that she did everything right. She gets an A-plus.”

Debora would have been pleased. She had been planning her death for years: not morbidly, not out of depression, but out of a calm conviction that she could choose her own time to die. “So how much is enough?” she had written to us earlier. “Is living every single breath worth of life until the bitter end the right way? Can I be totally in love with this day of fall and not feel like I need to see every fall from now on? … Will my loved ones get it that I may be done and that my passing is not personal? Has anyone ever heard me say, ‘I want to grow old’?”

At 6 5, D e b o r a wa s n ot o l d , by m o st counts, nor was she ill. But she was a passionate advocate for personal autonomy in how she chose to end her life, just as she had been for women’s reproductive rights and LGBT causes. In the colleg e town down the coast where she lived, she collected signatures for California’s medical aid-in-dying law, the End of Life Option Act. The card she passed out was as direct as she was: DEATH & DYING 101. Death cafés, group discussions. End of Life paperwork presentations. Death with Dignity.

The California campaign appealed to Debora’s sense of righteousness.

Based on Oregon’s 1997 Death with Dignity Act, the 2016 End of Life Option Act allows certain terminally ill persons to end their lives with a lethal medication prescribed by a physician. Colorado, Hawaii, Maine, New Jersey, Vermont, Washington, and the District of Columbia have similar laws.

But, as committed as she was, Debora knew it wouldn’t work for her. She was not willing to wait until she was already dying to request a “death with dignity.” When might that be? Her mother, long lost in a fog, died in a nursing home at age 99. Nor was she willing to leave it up to doctors to decide: it was her body, her choice.

The leading advocacy organization for medical aid-in-dying laws, Compassion & Choices, cites “empowerment” and “autonomy at life’s end” as key values and organizing principles. The word “patient” alerts

us to who’s in charge, however. How much autonomy do we, as patients, really have?

To be eligible, we must be a legal resident of a state with a medical aid-in-dying law; solicit the sponsorship of our primary care physician plus another physician, psychiatrist, or psychologist; and be certified as having fewer than six months to live. In California, at least, we must demonstrate that we are aware of—and have tried or refused—all other options such as surgery, radiation, or fluids that might keep us alive, and have tried or refused palliative or hospice care. And we must show that we are lucid and not acting out of coercion, impaired judgment, depression, or other mental illness. If we get this far, we can request a prescription for the lethal drug. But we must do this on two separate occasions, at least 15 days apart, both orally and in writing. We must sign a consent form in front of witnesses, and be capable of consuming the drug without assistance. If we’re approved, and are still alive by then, we’ll be given a prescription to fill and pay for—if, that is, our physician and/or health care facility does not refuse to comply “for reasons of conscience, morality, or ethics.”

And there’s the rub: Death with Dignity laws protect the rights of individual providers and entire healthcare systems to refuse to honor our request on grounds of individual or institutional conscience. The Americ a n Me d i c a l A s s o c i a t i o n g o e s f u r t h e r : according to its Code of Medical Ethics, “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.” As patients, we have the freedom to request medical aid-in-dying, but we have no right to receive it. If we’re determined to make an autonomous decision about how to end our lives, we need to manage it ourselves. run through much of my writing and international consulting on women’s rights and population policies. The theme is a personal one as well: I have thrived on the capacity to make choices in my life. Now, at age 83 and in good health, I refuse to accept the prospect of losing that independence. Dementia poses a particular threat: I need to have all my wits about me to die peacefully, on my own terms, when, and how I want to. The high-rise senior living community in which I live offers the best in lifetime care. But the cascade of small indignities— currently a trickle—will become a torrent. “For most people,” writes Atul Gawande in Being Mortal: Medicine and What Matters in the End, “death comes only after long medical struggle with an ultimately unstoppable condition—advanced cancer, dementia, Parkinson’s disease, progressive organ failure … or just the accumulating debilities of very old age.” And then? “In all such cases,” he says, “death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost.” Deciding in advance that I will end my life by a specific birthday, or when certain signs of cognitive or physical decline appear, does not mean that I am depressed or in need of rescue. Quite the contrary: It means that I am ready to depart this life

Deciding in advance that I will end my life willingly, on good terms. To me, selecting does not mean that I am depressed or in a departure date rather than struggling need of rescue: It means that I am ready to with uncertainty until the medical battle is depart this life willingly, on good terms. lost is an affirmation of my life, not a negation of it. Indeed, it relieves me of anxiety, knowing that I have a plan in place. Cheers me, even. And so, like Debora, I’m writing my own story. urges writer and activist Derek Humphry in his book Final Exit 2020: Self-Deliverance and Assisted Dying for the Terminally and Hopelessly Ill (first published in 1991), “and then enjoy the rest of your life!” We don’t have to be terminal, though—or even ill—to end our lives thoughtfully, “safely,” and in a place of our choosing. Final Exit is filled with ethical as well as practical advice. Share our thoughts with loved ones and close friends, for example: “Do not surprise or shock them with a fait accompli,” even if they don’t know all the details, Humphry advises. Put our legal, financial, and personal affairs in order before we go; do not leave a mess for others to deal with. Select a method of “selfdeliverance” that is safe and certain; do not resort to dangerous or “ bizarre” actions that can leave us damaged but not dead, or harm others. Leave a signed and dated declaration of the voluntary nature of our death, along with evidence of what we have done to accomplish it. Write instructions about what to do for whoever finds us.

The themes of empowerment and autonomy “Plan ahead,”

SLIPPERY SLOPES AND OTHER CONCERNS

A Q&A on the ethics of aid-in-dying with Dr. Guy Micco by Leah Worthington

As of 2016, the California End of Life Option Act offers legal protection to residents suffering from terminal illness who wish to access medical aid-in-dying, also known as physician-assisted suicide. But the law has hardly quelled the controversy. We spoke with Dr. Guy Micco, co-director of the Program for Medical Humanities at Berkeley who has had a longstanding interest in aging and death, about the ethical concerns in legalizing life-ending treatment.

What are the main arguments against allowing aid-in-dying?

Those who believe that we are only caretakers of our own lives, that this life is a gift from God, see it as morally wrong to hasten the end; for God is the only ‘One’ who can properly decide when we die.

Some disability activists find medical aid-in-dying (MAID) an affront to the dignity of those with severe disabilities whose lives might be seen by others as “not worth living.” Such an attitude leads to a discounting of the life of someone with a disability; further, it can be internalized by that person.

Some secular bioethicists, physicians, and others believe that physicians should never be in a position to take life. They point to the fact that good palliative care and hospice are very successful at controlling severe pain, shortness of breath, and other physical symptoms at end-of-life. Further, they may point out that there is a “slippery slope” in play: First, assisted death for the terminally ill, competent person. Then, assisted death for the non-terminally ill, competent person. Then, we move to assisted death for the person who cannot truly give their consent because of, say, dementia or coma. Finally, we become so inured to killing that we have involuntary euthanasia (killing against the will of the person), as seen in Nazi concentration camps.

How do you respond to the fear of a slippery slope?

The slippery slope argument was recently made anew in an editorial in the journal JAMA Internal Medicine (2020) by geriatrician and palliative care physician Diane Meier.

She points out the problem of imperfect safeguards, or the impossibility of safeguards, surrounding the extension of euthanasia beyond terminal illness for a consenting adult; further, she says that this is already happening in the Netherlands. Letters from Dutch physicians, in response to her editorial, claim this is not the case. But having watched the use of MAID in our community, I tend to agree: Safeguards, such as assuring a patient’s consent and desire for MAID, are in place. Abuses can be prevented. However, I do have a lingering concern as articulated by the disability community.

Which concerns do you think are most valid and why?

I am quite sympathetic to the view of disability activists: First give us the right to a decent life, then talk to us about a “right to die.”

Fear of severe disability and age-related illness is nearuniversal, including among physicians. This may result in “the unconscious projection of support for a hastened death” (Meier)—a version of, “Of course you want to die, no one would want to live like you’re living. Let us help you.” If the life of a person with a severe disability is thought not worth living, how easy might it be to push that person toward MAID? The same might be said regarding elders toward the end of their lives: “You’ve lived a good life. Why are you hanging on?”

More and better education for us all regarding disability, old age, and the meaning of “quality of life,” along with appropriate safeguards for MAID, go a long way toward alleviating my concerns. But in the end, the question is one for society to answer: Should the value of autonomous decision-making take precedence over safeguarding the lives of the most vulnerable? And, if so, what safeguards must be in place to prevent abuses?

On the practical side, we should know what our state law s say about suicide, autopsies, insurance policies, and related matters. Although the laws differ by state, nowhere in the U.S. is taking your own life illegal, nor is it illegal for someone to tell us how to do it, or to be with us when we do. But directly helping someone to die—by fixing a plastic bag over the head, say, or lifting a glass up to the mouth or giving an injection—is a crime almost everywhere. Asking others to do this for us can put them in jeopardy.

Final Exit explains in detail how to manage things ourselves: what methods are “safe” (i.e., effective and quick), where to obtain them, and how to supplement, prepare, and use them to ensure a calm departure. It recommends having someone accompany us when we take the final step. If we’re reluctant to ask this of anyone we know personally, but don’t wish to be alone, we can contact the Final Exit Network—a national organization Humphry founded in 2004—for help. Trained volunteers, called “exit guides,” w i l l i n t e r v i e w u s t o e n s u r e that we have explored all other avenues and that our wish to die is purely voluntary. They can advise us about making final arrangements, how and by whom our body should be discovered, and how the death will be reported. They can tell us what to procure, and where, but cannot provide or touch it. And if all goes well in the interview, they can be with us at the end to ensure that our leave-taking is a smooth one.

As I conjure my own end-of-life story, I fantasize about flying to Switzerland on a one-way ticket. In a village near Zurich, the nonprofit organization Dignitas offers what it calls an “accompanied suicide” as a means to “self-determination … at life’s end.” I doubt that they’re likely to take me if I’m not seriously ill or in pain, however, no matter how determined I may be. And so I’m imagining a different ending that keeps me closer to home: I could follow the footsteps of my friend Lillian. We were drinking a glass of wine in her San Francisco condominium with a glorious view of the bay and the Golden Gate Bridge.

“You know, I was going to do it earlier this year,” she confided in me. “I’ve been saving sleeping pills and have quite a stash.

But I was afraid. What if it didn’t work? What if I didn’t take enough? What if I threw up? And here I am, about to turn 90. Now what?” Lillian had written about her intentions—and what she hoped she would have “the courage to do.” “Why at this advanced stage of old age do I have to add to my anxieties because we have neither social policy nor a culture that permits us to die when we say, ‘I’ve had enough’?” she wrote. “I ask my doctor to give me a prescription for pills that will make my death easy. He thinks about it, and then with a look I can’t read—sheepishness? regret?—he says, ‘Sorry, I can’t do it.’ I assure him that I don’t plan to take my life immediately; I only want to be in control when it happens, to know I won’t have to leave it to people like him to make a decision that should be mine.” When she turned 90, Lillian contacted the Florida-based Final Exit Network. She had read about the options beforehand “Why at this advanced stage of old age and decided to use helium. After buying do I have to add to my anxieties the plastic turkey-roasting bag, an athletic because we have neither social policy band to hold it around her neck, clear plas-nor a culture that permits us to die tic tubing, and tape, she purchased two when we say, ‘I’ve had enough’?” small tanks of helium online packed with balloons from a party store. At home she assembled the kit and practiced opening and shutting the valves. Two Final Exit Network volunteers were with her at the end. They had interviewed her earlier to make sure she knew what she was doing and had everything ready: that her daughter knew of her plans; that her affairs were in order; and that she was not depressed. And when the time came, Lillian did everything right. She died the way she wanted to, peacefully—even proudly—in her own bed. Lillian was not ill, at least not terminally, but she was old. She had lived a full and creative life, but was no longer the person she used to be, or wanted to be, or wanted her friends and family to see. She was certain about that. “My big question,” she had written earlier, “is only: Will I be able to translate that certainty into action?” Yes, she was. And she did. It was an autonomous choice, just as she planned it. 

Lillian was 89 when she first told me of her plans.

Ruth Dixon-Mueller, ’64, Ph.D ’70, taught sociology at UC Davis for 18 years before moving to Costa Rica, where she spent another 18 years growing coffee and organic pineapples. She lives in Oakland.