Death, Life, and The Right to Draw Your Own Line

Can the right to die breathe more life into one’s final weeks, months, and years?
By Ruth Dixon-Mueller

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.”

“Deborah was not willing to wait until she was already dying to request a ‘death with dignity.’ When might that be?”

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 65, Debora was not old, by most 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 college 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?

“We have the freedom to request medical aid-in-dying, but we have no right to receive it. If we’re determined to make a decision about how to end our lives, we need to manage it ourselves.”

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 American Medical Association goes further: 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.

THE THEMES OF EMPOWERMENT and autonomy 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.

“Deciding in advance that I will end my life does not mean that I am depressed or in need of rescue: It means that I am ready to depart this life willingly, on good terms.”

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 willingly, on good terms. To me, selecting a departure date rather than struggling with uncertainty until the medical battle is 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.

“PLAN AHEAD,” 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 “self-deliverance” 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.

“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’?”

On the practical side, we should know what our state laws 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,” will interview us to ensure 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.

LILLIAN WAS 89 WHEN SHE first told me of her plans. 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?”

“As I conjure my own end-of-life story, I’m imagining a different ending that keeps me closer to home: I could follow the footsteps of my friend Lillian.”

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 and decided to use helium. After buying the plastic turkey-roasting bag, an athletic band to hold it around her neck, clear plastic tubing, and tape, she purchased two 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.

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. For more, listen to our interview with Ruth in episode 11 of The Edge A Completed Life.”

From the Summer 2021 issue of California.
Image source: Iride Pieretti / Eyeem
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Comments

Thank you for this article. It covers concepts I’ve been thinking about for a long time (and I’m not depressed—I’m actually a joyful person). I am 79 years of age and experiencing my third adventure with cancer, which is currently in remission…for how long? No one knows. I grew up in a funeral home, so I might have different perceptions about death. A copy of your article has been printed and placed in my file. My two daughters have copies, and we have discussed my end-of-life options in great detail. I am grateful to you for a well-written, lucid presentation of what you so beautifully refer to as “voluntary death.”
Like fellow octogenarian Ruth Dixon-Mueller, I’ve long felt this final avenue of leaving life should be available to all. During a lecture on suicides, I learned physicians had a higher rate of suicide success towards the end of expected lifespan than the general population. The curve for aged physicians was definitely higher than that for the general population. I learned the common thread laid behind some terminal illness, and they had the access to drugs and the knowledge of accomplishing suicide successfully. I thought how unfair this was. Why should the general population be deprived of a tool physicians can access easily. Thus, when the Hemlock Society to assist suicide was born in 1980, I was an early financial supporter. I continued to support them even after they’d morphed into Compassion and Choices, champions of current right-to-die legislation in California and several other states. I understand some who’re against this because of personal moral conviction but can’t understand why their choice should impede another from deciding otherwise. To each his own. But please don’t deter me from seeking this avenue when I’ve chosen to do so.
To WWwong, Many thanks for your past support of The Hemlock Society. Derek Humphry and several of our original founders are with The Final Exit Network, a successor of The Hemlock Society. Check us out at https://finalexitnetwork.org/
Final Exit is a dangerous and unapproved organization which has enabled the suicide of many otherwise healthy people, according to the PBS documentary. “Deborah”, who committed suicide with the help of Final Exit, according to the writer, was not terminally ill, and would not qualify for the CA End of Life Option Act. The California Legislature has debated this issue and put a law into place with the input from many stakeholders. As a Certified Specialist in Estate Planning, Trust, and Probate Law of the State Bar of California I deal with these issues daily. Please do not carelessly publish the opinions of one person which advocate extreme positions on issues of this magnitude. The writer has ample opportunities to write to her legislators on the current law, but it is irresponsible to recommend organizations which seek to circumvent the law.
Lynn, thank you for providing some balanced perspective to this controversial topic, as there is much to chew on here.
Final Exit is a service for people who choose to end their lives on their own terms. California, along with other states, refuse to recognize chronic depression and other mental illnesses as qualifying illnesses for dying with dignity. The brain is an organ like every other organ in the body and is sometimes irreparably defective. Isn’t it better to inform loved ones of your decision and go out with dignity instead of letting them find your brain splattered on the walls of a bedroom suddenly and with no explanation? At least people have time to get their affairs in order before they go and mitigate some of the emotional damage of a surprise.
Thank you for the thoughtful article. The topic is one most of us struggle with the older we get. I’m currently 78 and have had the discussion with many at various stages of their lives as a part of the estate plans. I recall my undergraduate days at Cal when the access to the Campanile and Barrows Hall were restricted during finals, but quickly restored thereafter. My take away from that was that if we could get people past a crisis, they would be okay. Sixty years later, the contours of the dilemma have changed some what but remain fundamentally the same: trying to find the right space between the finality of the act and the inherent and unavoidable uncertainty about the timing and appropriateness of the decision. I appreciate the thoughtfulness of the article and its contribution to the discussion
This article resonated with my longtime thoughts and beliefs. I don’t plan to die anytime soon (I’m 61), but I want my death to be my choice, especially after watching my mother die at 67 after radiation and chemotherapy for lung cancer. A long and painful illness before her death was *not* what she wanted. (And I certainly don’t want to burden my family with costly, long-term care.) At the very least, I appreciate conversations about “normalizing ” death since it’s going to happen to all of us.
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