Older woman crying into her hands

Dementia — the inexorable erosion of memory that erases the mind and eventually robs the body of its most basic abilities — is growing to epidemic levels as America ages. It brings the same fear today that a cancer diagnosis did a half-century ago, and maybe more.

The road ahead with dementia leads only backward, through potholes of loss for both patients and their loved ones. Despite the frantic efforts of the research world, hopes for prevention, treatment or cure remain mere glimpses on a far-distant horizon. That leaves many looking for a way off that road.

Journalist and author Katie Engelhart

Katie Engelhart

That’s the world Katie Engelhart stepped into for “Her Time,” the extraordinary story of an Oregon woman’s underground journey to die on her own terms before dementia left her unable to take the needed action when she was ready. Even in states like Oregon — the first in the U.S. to pass a right-to-die law for people with terminal illness — people with dementia are excluded under the strict terms of legally assisted suicide.

Faced with official blockades, more of them are choosing autonomy, bypassing the strictures of legislatures, medical offices, hospital ethics committees and a controversial subject that most people shy from.

That has left dementia patients to fend for themselves. “Something is obviously happening that isn’t being acknowledged or talked about,” Engelhart told me.

Suicide among them is on the rise. But attempts can be unreliable, and the process — whether successful or not — can be  devastating for their loved ones. That is leading to a rise in groups that advise and assist, but try to stay within the strict parameters of the law. “Her Time,” a 7,400-word narrative published in March 2019 in California Sunday Magazine, follows the journey of Debra Koosed, a 65-year-old widow diagnosed with dementia and dealing with the diminishment of her previous life. Engelhart braids that with the history of the right-to-die movement and the contentious debate about whether patients with dementia should be allowed the legal right to die, with assistance, before they are deemed incompetent.

And therein lies the rub.

A profile within a book

Enter the Final Exit Network, a volunteer organization of activists who tiptoe along the edges of the law, offering people like Koosed the ability to choose the time and manner of their death. That introduces readers to the other main character in “Her Time:” Brian Ruber, a 77-year-old who serves as Koosed’s “exit guide.”

Koosed is one of four sufferers—the others wanted to die because of old age, chronic illness and mental illness — profiled in Engelhart’s new book, “The Inevitable: Dispatches on the Right to Die,” released this week. The book also features a California doctor who opened a clinic specializing in assisted death and an Australian physician who lost his medical license for teaching how to “exit” at “DIY Death” seminars.

Engelhart draws on their stories to explore the moral and legal questions around the right to die. “It was ethically tangled,” she told me. “Every part of the reporting process required me to think deeply about whether my project was moral and decent and safe. I would spend years reporting on an aspect of the ‘right to die’ only to end up more uncertain than I was at the start. I took a lot of pleasure in that. There aren’t many subjects, in my experience, that allow that depth of searching.”

“Her Time” is largely told in what Engelhart calls “third person over-the-shoulder.” She gained access to Koosed’s thoughts through phone calls, texts and a lengthy visit to her home, and backed her interviews with medical research and Koosed’s personal records. “She knew that she would be dead soon, and that she wouldn’t see the product of my work anyway,” Engelhart said. “So if I wanted to speak to her, fine, she would speak to me.”

Engelhart is a Canadian-born writer and documentary filmmaker and fellow at New America who has worked in the U.S. and overseas for NBC News, VICE News and Maclean’s, Canada’s largest newsmagazine. She won a Canada National Magazine Award for coverage of Ukraine’s Euromaidan Revolution. Last month, her essay about the plight of nursing home patients with dementia was published in The New York Times.

In response to Storyboard’s questions, Engelhart discusses structuring a complex story, juggling a personal narrative with complex social and legal issues, and the ethical challenges and emotional toll of writing about people in despair. An annotation of “Her Time” follows the Q&A.

How and why did you get interested in the subject of self-determined death?
I started researching the so-called “right to die” when I lived in London and was working as a reporter at VICE News. In 2015, the British government was debating whether or not to pass a law on physician-assisted death, and I was asked to look into the subject. The debate, in London, was vehement — but it was also boring and fairly obvious. People on one side spoke of respecting the autonomy of sick and dying patients. People on the other side warned of a slippery slope — a slide toward forced death and Nazi-style killings.

Through that assignment, however, I learned that many people, in Britain and beyond, are not waiting for legislators to change the law. They are taking matters into their own hands: meticulously planning their final hours with bottles of veterinary medication from Mexico; powdered drugs ordered online; help from loved ones, and help from strangers on the Internet. I learned of what some advocates call the “euthanasia underground:” a loose network of semi-clandestine groups that help people to die (painlessly, they say) without the approval of doctors or lawyers or lawmakers. In 2015, I started work on my book about assisted dying.

I was interested in the subject, in part, because of this very strange dynamic that I observed in my reporting. There remains an incredible unwillingness to discuss the practicalities — the sometimes dark and dirty specifics — of advanced aging and dying. And yet, everywhere I went, I met people who were desperate to discuss it. Near strangers would pull me aside to confess the most intimate things about deaths they had witnessed — deaths that were sometimes long or painful or embarrassing or confusing. I met hundreds of people who told me stories of people they knew who had, in some way, hastened their endings. Something is obviously happening that isn’t being acknowledged or talked about. And doctors, who have over the last century worked to colonize the dying process (many of us now die in healthcare institutions, attached to machines), have missed a trick.

You obviously developed a close relationship with  Debra Koosed, the main character in “Her Time.” How and when did you find her?
I met Debra at the very start of 2018, in a roundabout way. I had started researching the Final Exit Network. I spoke with several dozen volunteers who are or were associated with the network, in addition to network clients and the family members of previous clients. A few months in, I met Brian Ruder, a so-called “exit guide.” We spoke for a long time and, through him, I met Debra.

Why did she agree to cooperate with you?
I think Debra was very, very alone in her final months and knew, at some level, that she had been failed. By her doctors. Her community. Big Medicine. The system, whatever that means. Maybe she thought her story would be useful to someone else. She wondered if other people with dementia were going through what she was going through.

I think at another level, she probably just didn’t care that much. She knew that she would be dead soon, and that she wouldn’t see the product of my work anyway.

What toll did telling Debra’s story and writing the book take on you?
I’m not sure. I always thought I was doing OK, but then I’d misplace my keys and cry for an hour.

Were there any models of writers or journalists you drew on for inspiration?
Where to start? I read a lot of Atul Gawande and a lot of physician books — by Henry Marsh, Siddhartha Mukherjee, Sherwin Nuland, Sheri Fink, Louise Aronson and more. I read books about death: “The Denial of Death,” by Ernst Becker (which Bill Clinton has oddly described as a favorite) and “The Worm at the Core.” I read a wonderful book by the philosopher Jennifer Michael Hecht about suicide, called “Stay.” And a book called “Dignity” by the philosopher Michael Rosen. The philosopher Margaret Pabst Battin was very helpful.

I read or reread my favorite narrative nonfiction works: “Random Family,” by Adrien Nicole LeBlanc; “Evicted,” by Matthew Desmond; “Strangers Drowning,” by Larissa MacFarquhar. I read a lot of Janet Malcolm because I wanted to read books in which the author was really engaging, in text, with the ethical process of her reporting. I read “Nothing to Be Frightened Of, “by Julian Barnes. I liked it so much that I threw it across the room when I was finished; I was so jealous of how clever and pretty and tidy it was.

Most beneficial, maybe, were all the books I read by authors who were sick or dying or in the early stages of dementia. I read Donald Hall on aging — “Essays after Eighty;” “Carnival of Losses,” etc.). Philip Larkin (“Why aren’t they screaming?” he writes, of old people, in his poem ‘The Old Fools.”). I read the essays that Jenny Diski wrote in the London Review of Books when she was dying, and also her book “On Gratitude.” Christopher Hitchens. Melanie Thernstrom on chronic pain. Lily Bailey on Obsessive Compulsive Disorder.

How, if at all, did your work as a documentary film producer influence the reporting and writing of “Her Time” and your book?
I think that working in film has helped me to see things in scenes when I’m reporting, and then to string those scenes together in a way that feels vivid and motivated. Other writers know how to do this instinctively, but I’m not sure I’m one of them. I needed to learn.

“Her Time” was published in the now-defunct California Sunday Magazine in March 2019. Did the story lead to the book, or was it part of researching the envisioned book?
I had already started the book when I published the California Sunday piece. The story appears, in a much more expanded form, in the book.

What role did editors play in “Her Time?”
My editor, Kit Rachlis, really helped to shape the piece. If it had been up to me, I probably would have included several thousand boring words about legislative proposals and legal challenges. Kit always gets to the heart of the matter.

Has your work on this story and your book led you to a position on assisted suicide for people with dementia?
I’m not a policy advocate or any kind of aspiring policymaker. What I think is this: we have to do something for people with dementia who are frightened and want a way out. Polls have shown that many people fear dementia more than anything else, more even than death. I can’t tell you how many times people have taken me aside and told me — jokingly but also not so jokingly — that they have made promises to their parents or grandparents to kill them if/when they develop Alzheimer’s. They have pledged to smother their parents, or drug them to death, or shoot them in the head. Are these pledges for real? Or just a way for people to communicate that they are scared? I don’t know. Many people told me, over the course of my reporting, that they would welcome a right-to-die law that allows people in the early stages of dementia to end their lives in order to avoid a full descent into the disease.

THE ANNOTATION: Storyboard’s questions are in red; Engelhart’s’ responses in blue. To read the story without annotations, click the gray quote boxes throughout the story.

Person in wheelchair

 

Her Time

Debra Koosed was diagnosed with dementia at 65. That’s when she decided she no longer wanted to live.

By Katie Engelhart
March 20, 2019
The California Sunday Magazine

It was  early January 2018 when Debra Koosed started working on her taxes. Or was it mid-January? She knew it was January. She knew that she would get confused and would need the extra time. Months, even. Soon, Debra was spending several hours a day bent over the paperwork, her soft body in the heavy wheelchair, pulled up to the round kitchen table that looked out on the Oregon coastline.

Why, Brian wanted to know, was she so intent on filing her taxes anyway, given what she planned to do? The opening paragraphs raise all sorts of questions: Why is Debra confused? Why does she need more time to complete her taxes? Who is Brian and what is she planning to do? You subtly imply with these hints — showing rather than telling — but without saying outright that Debra is dealing with dementia and seriously contemplating suicide.  Why did you choose to hold back and open the story this way? I wanted to start inside Debra’s mind, and I wanted both the language and the structure of the lede to reflect that perspective. Was it early January or mid-January? Debra could never remember. And so I made her uncertainty a part of the story. I made it into our uncertainty. I wanted the reader to begin by feeling off-kilter.

Because she wanted her affairs to be in order. Because she did not want things left unfinished. “I am tying up loose ends,” she told him. But when Debra looked down at the tax forms, it was as if the pages lost their outer borders and the words danced away. This is a lyrical description of dementia. How did you learn about its symptoms? And if Debra told you, why didn’t you quote her? I read a lot about dementia, and memoirs written by people in the early stages of the disease. There aren’t many, but there are some, and they were very helpful. Most important, I spoke with Debra at length about how she was experiencing her mind. I think my words sum up what she was feeling in a vivid way. I have never believed that quoting someone directly is always more true.

Her small home was quiet, save for the beeps and vibrations coming from her late-husband David’s cellphone: alarms reminding her when to eat, when to take her medications, when to water the plants. In the mornings and evenings, there were alarms to open and close the curtains in the living room and, at regular intervals throughout the day, alarms prompting her to use the bathroom because she did not always remember to go and would sometimes have accidents. Debra imagined that David’s cellphone was David himself, re-embodied, a year after his death, and ministering to the needs of her failing body and rotting mind. This is such a heartbreaking passage. How were you able to catalog the alarms on her late husband’s cellphone? Debra told me all about the alarms. Her dementia was mild, and people with mild dementia can still have very cogent conversations. Often, we assume that they can’t, and don’t bother asking them questions. That’s our mistake and our great loss. Also, I spent time with Debra in Oregon and heard all the alarms going off.

“I used to be a Maserati,” she liked to say. “Now I’m a clunker.”

The neuropsychologist had used another word, which was “dementia.”

At Debra’s appointment, a few months earlier, he had told her what she already knew: Things were not all right. MRIs showed that the frontal and parietal lobes of Debra’s brain had atrophied — were atrophying. The atrophy was already at a “moderate” stage. The gripping main action of the story takes place between January and April 2018 with the rest told in flashbacks, such as the description of this appointment and Debra’s reaching out to the Final Exit Network (FEN) in the fall of 2017. Was that a decision based on the narrative structure you wanted, or to indicate when you were present to report vs when you reconstructed events? This structure made the most sense to me. I always start the story in the messy thick of things, not at the chronological beginning. And I often blend on-the-ground reporting with reconstruction.

During the appointment, Debra could recite the alphabet and count to 20, but she could not recall the day of the week or where exactly she was. She was 65. Why mention her age here? I don’t think it makes sense to hide the age of a character! Also, 65 is awfully young to be in the throes of dementia. Her age was important to the story.

After the appointment, Debra started having visions of life in a nursing home, lost and unglued. Doctors would ignore her, and nurses wouldn’t know how to position her in just the right way so that she wouldn’t be in pain. She would forget how to think. She would forget how to chew and swallow. The other patients would cry and moan, and they would feed off one another — each patient nudging the next into ever more hysterical and demented states. It would not be a nice facility because Debra could not afford a nice facility. In Debra’s vision, things would be worst at night. “Strangers are touching me. People are going through my personal life. Touching me in a way that might be inappropriate.” If it happened, would she even know that she was being hurt? This passage reveals how deeply you inhabited Debra’s interior life as she faces her future. What reporting techniques made you confident you could be so specific about her thoughts and fears? I’m not sure I used any reporting techniques here beyond deep conversation. Deep conversation over long periods of time. I wrote only what Debra told me (often, over and over and over again).

Debra said that if she were a dog, someone would have put her down long ago. She had euthanized sick dogs before, dogs she loved, and even as a child had understood the act to be merciful. “I thought, Wow, this is such a wonderful thing, that I am able to ease the suffering and pain of my beloved.” When Debra watched her grandmother die, she wished “there was something we could do for humans.” The previous graf is told in the omniscient voice that characterizes most of the story, but ends with Debra speaking. How do you decide when to switch between the narrative approaches? I think the voices are the same in both grafs. An over-the-shoulder third person. Several times you quote Debra without indicating who she’s talking to. Why? I suppose I thought it was obvious. I don’t think I needed “she told me” after every quote.

Sometimes the question was if. Usually, though, it was when. Debra said that she would kill herself before she lost herself completely. She would wait for as long as she could because she did not want to die, but she wouldn’t wait too long. This is the first time we learn of Debra’s intentions. When did Debra tell you this? About one minute after we began our first phone conversation.

“I have to be cognizant in order to do it,” she told me. Why did you include yourself in the story at this point? I usually reveal myself, briefly, near the start of my pieces. It feels most honest to me. I like to acknowledge, in text, that the story is the product of a journalistic process.

Brian would show her how to do it, but he couldn’t help. “No one can help me because that’s murder. I have to do this on my own, so I have to go at a time when I still feel I know what I’m doing.”

For the moment, there were still good days and bad days — soon, though, a bad day would stay a bad day, and then she would vanish. Among the many things I admire about this story is the way you withhold certain information in a way that creates uncertainty and suspense, such as Brian’s identity and role, but then bring the reader up to speed. What’s the thought process behind these decisions? Again, I really wanted to start the piece with Debra. I wanted to be inside her mind as much as I could be. In the moment. In the thick of things. I wanted to help my readers feel their way into this woman’s chaotic mind. It wouldn’t have made sense, in my view, to interrupt things in order to present context and chronology. All of that can wait, I think. I like to let my introductions breathe.

BRIAN RUDER read through the application package slowly. He had worked with clients like this before — people with fresh diagnoses of dementia — but never someone so young. “I’m writing this letter to request the services of the Final Exit Network in hastening my death,” the applicant, Debra Koosed, had written in her introductory letter. “I’m hoping you can help me … before my brain robs me of ALL my dignity.” Not every would-be client was as circumspect. Sometimes people got scrappy in their pleas for help in a “If you don’t help me, I’ll blow my brains out” kind of way.

Brian read through the application package slowly. He had worked with clients like this before — people with fresh diagnoses of dementia — but never someone so young.

Brian, who is 77, was born to a German Catholic family in Kansas. He was raised to fear God: certain that the taking of one’s life was a mortal sin, a degradation so complete that it fell beyond the bounds of His mercy. As Brian grew older, he shed his faith and acquired, in its place, a firm devotion to the secular tenets of personal autonomy, especially as they concerned the end of life. “I don’t believe in letting doctors decide when I should die,” he told me. Now that he had lost his God, there was no redemption to be found in anguish, no transcendence in pain. There was no purpose to pain at all. “I don’t believe in suffering,” he said. When Brian left his corporate job in Portland, he started volunteering with Compassion & Choices, a national nonprofit group that lobbies state legislatures to legalize physician-assisted death. How do you know these things about Brian’s beliefs? Did you consider quoting him at length, rather than summarizing, although what you wrote expresses them in an eloquent, informed fashion? He told me what he believed. I pieced together his story over many long conversations. I do quote him extensively here — twice in a single graf. Brian is a very quotable man. But I don’t think it’s always necessary or effective or interesting or beautiful to fill a piece with long, extended quotes. It doesn’t make the story more truthful.

Twenty-five years ago, voters in Oregon passed Measure 16, making Oregon the first state in the nation to legalize what was then called “assisted suicide,” but which now, in the vocabulary of political lobbyists who wish to distance their movement from the laden s-word, is often called “medical aid in dying.” In 1994, advocates hoped that Oregon would give other states the moral impetus they needed to pass their own equivalent “death with dignity” laws. Many proponents saw their movement as the logical continuation of other grand progressive battles: for the abolition of slavery, suffrage, and desegregation. Baby boomers, the theory went, had seen their own parents die ugly, protracted hospital deaths and wanted another way.

But the post-Oregon optimism did not quite play out. Over the past quarter-century, dozens of states debated and rejected Oregon-style statutes. Only six states and the District of Columbia have passed them. (In Montana, physician-assisted death was made legal by a state Supreme Court ruling.) Numbers within Oregon have also remained small. In 2018, 249 terminally ill people received lethal prescriptions under the law, and just 168 took the drugs.

To qualify for assisted death in Oregon, a patient must be over 18, mentally competent, and terminally ill and have, in the estimation of two doctors, six months or fewer to live. The patient must also take the medication herself — since only assisted dying (where a patient self-administers lethal drugs, usually by drinking a powder solution) and not euthanasia (where a doctor administers the drugs, usually intravenously) is allowed.

Last year, the great majority of people who used the law in Oregon had terminal cancer (62.5 percent). Left ineligible are other kinds of patients: people with chronic pain that has no likely endpoint, degenerative disorders like multiple sclerosis that don’t fall into tidy six-months-or-less timelines, and physical conditions that leave a person unable to ingest medication. The law also excludes people with dementia — since, by the time a dementia patient is within six months of death, she will likely be too far gone to consent to much of anything. You cogently take about 370 words to describe the history, scope and debates surrounding the assisted suicide movement in America? Would you consider this a nut graf? I hate nut grafs and try not to ever write them. I wouldn’t consider this a nut graf at all — it’s more of a background history.

It seemed to Brian that the Oregon law recognized only a narrow sort of pain. It only helped people who were going to die soon anyway. Here you also introduce the central conflict in Debra’s story — that by the time she is permitted legally to take her life, her dementia may have progressed to the point that making informed consent impossible. What was your intent as you structured the story? You’re right, it is one of the central philosophical tensions of the piece: the gap between what the law (and medicine) allows and what Debra was looking for. It made sense to introduce that early on. We spend the rest of the piece working it out.

In 2015, while researching online, Brian found out about the Final Exit Network (FEN): a network of volunteers who teach people how to kill themselves and then sit with them when they do it so they won’t be alone. This is a blunt description of what FEN volunteers do. You don’t sugar coat it. What’s your thinking process when it comes to presenting blunt information? How do you consider your obligation to the truth of the story, your sources and the readers? I don’t like euphemisms about death and dying. They’re cheesy and sentimental and confusing and dishonest and often coated in religious thinking  — and they distract us from the facts of the matter. I prefer to say things as they are.

FEN had grown out of the Hemlock Society, a right-to-die advocacy group founded in 1980 and named for the poison that Socrates drank before weeping supporters in Athens. The Society led death-with-dignity initiatives in a handful of states, but in the early 2000s, the group underwent a bitter schism; most members went on to form Compassion & Choices, and a much tinier faction reconsolidated as FEN. Brian made contact with FEN and signed up to train as an “exit guide.” It’s interesting to see how effectively you compress the history of the transformation from the Hemlock Society, including the poignant scene of Socrates killing himself. Did this require a lot of revision to get it down to one paragraph? SO MUCH revision! I tell a longer version of this story in my book.

At a two-day training session in San Jose in 2016, Brian was schooled in the FEN protocol. He learned that while FEN guides were there to help people die, they couldn’t help in the literal sense. Though suicide is legal in every state, the act of helping someone commit the act is illegal.

Oregon’s death-with-dignity law excludes people with dementia — since, by the time a dementia patient is within six months of death, she will likely be too far gone to consent to much of anything.

The rule that FEN’s leadership came up with — the rule they hoped would keep the organization free from prosecution — was that exit guides could instruct and advise and sit with but could not touch a client. At the training session, Brian watched a demonstration of the network’s suicide method: inert gas asphyxiation, using a sturdy plastic bag and a canister of pure nitrogen. The process was “not very dignified,” Brian agreed, but all the equipment could be purchased legally and was said to be painless.

FEN’s primary goal, Brian learned, was not to change the law, but to help people who suffered outside of it, because they lived in states where assisted dying was illegal or because their symptoms didn’t match the law’s eligibility criteria. According to FEN rules, clients didn’t need to be terminally ill or even dying, in the immediate sense, as long as they were suffering “intolerably” and “unbearably.” Within six months, Brian had attended his first suicide. The client was a man whose partner kissed and embraced him before leaving the room because he could not bear to watch. Once again, I’m struck by the way you write with such concision and understated compassion. How much work do you do to describe these situations that, to me at least, are horrific, yet stated matter-of-factly. I didn’t grow up with any kind of religious or spiritual upbringing. My parents are among the most matter-of-fact, blunt people I know — totally allergic to euphemism and imprecision. It’s very natural for me to describe things as they are. It’s pretense and avoidance and confounding metaphors that confuse me. I don’t think I aim to be “blunt,” but rather, specific. Precise. I live for tiny details. I’ll spend hours talking to someone just to get one tiny, specific, delicious detail. What do you hope your work achieves? I don’t always have a clear objective when I set out to report a story. I want to expose a conversation that is happening just below the surface of polite conversation because I think the hidden nature of the conversation leaves people feeling alone who needn’t feel alone. I want readers to consider larger ideas about dignity and respect and autonomy, as they apply to their own lives and to our larger social contracts.

“Without the heroism involved, we operate more along the nature of the Underground Railroad,” Janis Landis, FEN’s president and a former IRS employee, told me. “Which is to say, that until the law is passed, we have to deal with the people who are suffering now. We have to show them a path that brings them out of harm’s way.” How do you decide which quotes to use from your interviews? I knew I’d use this one the very second that I heard it.

Debra learned about FEN on the internet. One day, when she was researching ways to die, she found a site that listed all the normal methods of suicide and explained why each one was imperfect: the cramps, the mess, the awkwardness. Debra read that many people try to kill themselves and fail — because they lose their resolve, or because they choose the wrong poison, or artery, or open window. Others succeed but die slowly or painfully. Debra had thought about using the handgun holstered to the side of her wheelchair, but the website said that suicide by bullet was risky. Why does she have a handgun holstered to the side of her wheelchair? I don’t really know. Because she lived alone, I think, and felt safer with a gun. Debra had a very longstanding fear of being ambushed by strangers and sexually assaulted.

“You can miss shooting yourself,” Debra said. “You can become a veg… you know what I mean.” It was harder to kill yourself than she had imagined if you wanted a foolproof method that was pain-free. One internet search led to the next until, eventually, she came across the Final Exit Network. Son of a bitch, she thought.

Even Brian would admit that FEN was a peculiar organization. The network has a Facebook page, a janky website,  I’ve never seen “janky” before but love its informality and reference to software. Why did you select it as an adjective? My editor and I talked a lot about this adjective. He didn’t love it, but I did, and in the end, he let it be. It’s such a good word. And sometimes, very occasionally, I like my word choice to be jarring — to just shake us right out of the constructed beauty of the prose. Also, at the time, I was hanging out a lot with my friend Elise Coker, a wonderful filmmaker, and she uses the word ‘janky’ at least 10 times a day. Elise thinks everything is very janky. a formal hierarchy, and a claim to several thousand paying members. Why did you qualify this? I didn’t have a copy of their membership list. It is a 501(c)(3) registered nonprofit whose donations are tax-deductible. On the other hand, FEN guides work discreetly and without oversight. Barbara Coombs Lee, the president of Compassion & Choices, has referred to FEN’s plastic-bag suicide hoods as “sort of the end-of-life equivalent of the coat hanger.” It appears that this quote is drawn from a secondary source. What was it? It was from a 2009 Associated Press article.

The network has also been the subject of a multistate undercover sting operation, and its volunteers have been charged in three states with assisting suicides — once, after the death of a 58-year-old woman who, it turned out, was not physically sick at all but had fabricated pathologies in her FEN application because she was depressed and delusional. In 2015, the network received its first and only felony conviction, in Minnesota, for assisting in the suicide of a 57-year-old woman with chronic pain — after the Supreme Court of Minnesota defined the word “assistance” to include “speech” that “enables” a suicide. The network was fined $33,000. It appealed the decision, pointing out that the information the group gave the woman “is readily available.” Under this interpretation, it argued, a librarian could be convicted for handing a patron a book about suicide if that person later kills himself. The appeal was denied.

When Debra called FEN in fall 2017, she was put in touch with a woman named Janet Grossman, who told Debra that she would serve as the “coordinator” on her case. Debra learned that she would have to submit medical records showing proof of her diagnosis and a specific account of how her list of pathologies made her suffer. From there, a panel of doctors would review the application and decide whether Debra could be helped: whether she was truly sick and whether her suffering met FEN’s criteria for intolerable and unbearable. If she met the criteria, they could move forward with what Janet called, slipping into FEN vernacular, Debra’s “exit.”

On the phone, Debra told Janet about the forgetting and the losing herself. Janet was sympathetic. Her late father had suffered from congestive heart failure and her mother from dementia. In 2012, Janet’s father had stepped outside the independent-living home that he shared with Janet’s mother and placed a plastic sheet on the concrete surface of the parking lot and brought his wife to lie on it. He had called 911 and told the paramedics to expect gunshots and that he wanted his body donated to science. He then shot his wife of 64 years and shot himself. Shortly after, Janet discovered FEN and started volunteering. As it happens, these sorts of deaths are not uncommon: elderly couples dying in suicide pacts to escape Alzheimer’s or men killing their demented wives of many years because the women are losing their memories and want to die, or because their husbands assume they would want to die, if only they could remember to want it.

Sometimes, the men are prosecuted afterward and sometimes the judges forgive them — because, they say, the men acted out of mercy. The writing style is so detailed and, for a complicated and painful subject, especially accessible. How much time did you spend drafting and revising? I spend an enormous amount of my time outlining and planning — picking quotes, arranging facts, sketching out nice sentences. Each chapter of my book took weeks and weeks to outline. That way, I can write through things in a more fluid way.

In late 2017, Janet called Debra to tell her that she had been approved, and Debra wept on the line. “It meant everything,” she said. On the phone, Janet told her that she should be careful about whom she told. If the wrong person found out, Debra could end up under lockdown suicide watch. Janet also warned her that she had a “window of opportunity.” Debra should live as long as she liked, but if she waited too long to act, she might lose the ability or the will to die, and then FEN would have to drop her case. Do you use any outlining aids: whiteboard, index cards, software? I don’t use any technology, and I don’t use index cards. I always mean to try, but I don’t really know how to use them in a productive way. Before I begin my outline, I always force myself to leave my laptop and my notes for a while and spend an hour or two just free-writing thoughts and observations from memory. I try to ask myself: What is the point of this all?

“It looks like she can enjoy many more months of a pretty decent life, and she may,” said Brian, who was assigned to be one of Debra’s two exit guides. Brian, who describes himself on LinkedIn as a “Chief Happiness Officer,” told me that FEN was hearing more and more from people with dementia. The population was growing and aging, and the ranks of the dementia sufferers were swelling. In Brian’s civilian life, he heard people say all the time that if they got dementia, they’d kill themselves or get someone else to kill them — that they were not going there. OK then, he would think, so what is your plan? In this section, you step back from Debra’s story to put it in the larger context: an aging population searching for a preferred way of dying. How did you settle on placing this information at this point? In this story, we learn about context and law and history through Brian Ruder. As Brian learns things, we learn things. That way, it feels organic, and we learn at a pace that feels interesting but not overwhelming. Also, Debra’s story doesn’t make sense without this larger context. Yes, she was a woman with a unique perspective and life. But also one of millions of Americans with dementia who are suffering and adrift.

It made sense to Brian that the search for an alternative path was happening beyond the official gaze of the courtroom and the hospital ethics committee.

People were scared, and they could find nobody to hold their hands and help them find a way out. Were you at all concerned that people with dementia might be inspired to kill themselves after reading this story? No.

But didn’t Debra still seem OK? I asked Brian. “It’s her choice,” he said. In addition to working as an exit guide, Brian volunteered at a suicide-prevention hotline: trying to keep strangers alive for a few more hours until the crisis passed and “usually, they realize that they don’t want to die.” Brian knew how to talk a person out of it. Debra, however, had thought things through. So who were we to judge whether her cognitive decline was sufficiently severe? Who were we to say that it needed to be severe for the exit to be — what, worth it? Are these questions raised by Brian or you? Both of us, in conversation.

“She doesn’t want to lose her selfhood,” Brian said. “She sees it happening.” Brian believes that nobody wants to die, only sometimes they can’t live this way.

DEBRA GREW UP in a spiritually unmoored home, in a known-for-nothing town in California. This is a great description, but I wondered why you didn’t identify the town. I don’t like to clutter a piece with details that aren’t significant.

When she was small, she was baptized as a Catholic and then, a few years later, when her father changed his mind, rebaptized as a Protestant. He changed his mind again, and the family stopped going to church altogether. It was an unhappy household. Debra’s father drank himself stupid at night and yelled a lot. Sometimes, after he was done yelling, he would go into Debra’s bedroom and sexually abuse her, and she would lie still and try her best not to breathe. It would be many years before she could admit to herself what he had done. For all of her girlhood, Debra imagined that it was a monster that made the nighttime visits. When her parents divorced, Debra moved in with her mother. How long did it take for Debra to reveal this painful part of her past to you? In general, how do you persuade subjects to do that? I  would never attempt to persuade someone to relive an experience of traumatizing sexual violence. This was completely initiated and directed by Debra. It was a really important part of her story and Debra wanted me to understand how it had shaped her perspective. We discussed the matter on a number of occasions so that I could be absolutely sure that Debra meant to tell me what she was telling me, and was OK with my later use of the material.

Debra got a job at a phone company near Anaheim, first as a typist and then as a manager. She rose as high as a person could without a college degree, which was pretty high, she thought, for a woman. She was the point of contact for hundreds of people. Debra did not consider herself to be clever, but she was good at her job and she was proud of how hard she could work. On Friday and Saturday nights, she and some of the other company girls would go out to TGI Fridays and hang out by the bar. They’d spend hours swaggering around the place with their fresh, ’80s, second-wave boldness: all acrylic nails and hair combed up into Q-tip puffs. This is such a vivid image. What did you base it on? And was the language yours or hers? My language. Her recollections. She talked a lot about the old days at the phone company. She really loved talking about the phone company.

When Debra met David — who had red hair and a big, earnest mustache — she told him that she was no Betty Crocker. I love your word choices. What’s an “earnest mustache” and where did the description come from? It just occurred to me right away when I saw pictures of David. As for “earnest?” I don’t know, a big floppy mustache that is completely sincere and entirely devoid of irony.

David was not like the creeps at work who sometimes grabbed at Debra or the old boyfriend who urged her to turn down a promotion because he thought the job of secretary suited her just fine. David supported her. He would ask to hear stories about the phone company, and he would repeat them at parties to Debra’s astonishment. “My wife is the only person in the company who does this,” he would boast. “She designed this!” David had been an antiques trader before going into construction, and his house was filled with old things. Sometimes, Debra and David imagined that they had known each other in the Victorian era but that their relationship had been cut short for reasons they didn’t know and that God had sent them back to earth to meet again.

It was Debra who, in 2000, suggested that they move to Pacific City, on Oregon’s central coast. Neither had close family. Neither thought they needed anyone but the other. In Oregon, they could start their lives anew and build a house by the water. When they did, they filled it with things they loved: crystal figurines, bouquets of plastic flowers from their wedding, old biscuit tins, imitation Tiffany lamps, and bookshelves lined with hardback thrillers, arranged alphabetically by author.

They pasted vintage posters of Kellogg’s cereal and Cadbury powdered chocolate in the kitchen and hung David’s collection of old fedoras and pageboy caps on the living room wall. They made it perfect.

It was a few years later that, in Debra’s telling, she died. Why do you write “in Debra’s telling?” Well, I don’t think she actually died and went to heaven. But she said she did. “I was in a catastrophic, deadly accident in 2008,” she said often. She wouldn’t remember much, except that she had just steered the van over the crest of a mountain when things went dark. Debra’s car hit a tree at 60 miles an hour, throwing her body into the dashboard, ripping out her knee implants, and, somehow, tangling the bones of her foot around the pedals. How can you be sure of these details? Did you have access to Debra’s medical records or just rely on her recollections? I had access to many of her medical records and verified facts with one of her healthcare providers. Other times, she told me things and I chose to believe her.

Debra said that when she died, she crossed over into a place of brilliant light where she was free from pain and where her mother was waiting for her. The women stood together, but when Debra tried to walk farther into the light, her mother barred the way. She needed to go back, for David. “The next minute, I’m awake, and I’m in a helicopter.… Someone is pressing on me.” Paramedics had performed CPR and resuscitated her. Most of the major bones in Debra’s body were broken, and doctors told her that she would have to use a wheelchair. As her body repaired itself, Debra found that her godless idea of death had been remystified — made enchanted and otherworldly. Debra thought constantly about the bright, beautiful place in the sky and knew that she was not afraid to return.

After the crash, Debra and David spent most of their time taking care of each other. They went out less. They saw fewer people. David helped Debra with her pain pills and swore that the wheelchair didn’t bother him one bit. He became Debra’s arms and legs. Debra tended to David through the blood clots and the heart surgery and the cancer. Debra spent hours researching his various maladies. Each time she presented David’s doctors with a suggestion for a new treatment, she felt certain that she had saved his life.

It was only after David died that Debra began to see herself as she was. The confusions and forgetting, which she had brushed aside, now lay in view. It was also after David died that Debra finally read the terms of the reverse mortgage that he had signed to cover their medical bills. Debra wondered if she would lose her home. She was stunned by how little money she had left.

It was hard to think about money, though, because it was getting harder to think in straight lines. Debra’s thoughts felt like seeds that never germinated. This is such a terrific simile. Do they spring fully-formed as you draft the story or are they the product of reporting? What is the value of this literary device? I just liked it. It felt specific. When I was writing, I searched and searched for a description that was vivid. I tried and tried, wrote sentences and deleted them. And then, this appeared.

Her attention was flighty; her stories lost their narrative thread. Sometimes, when she was at her computer, she’d come to suddenly and find that she had typed a page of gibberish. “I call them brain farts, for lack of a better description.” She said her brain was “bleeding,” that it was “oozing something every day.” She took a memory test online and scored poorly. “Proof I’m worse than I thought,” she said. Once, on the phone with me, Debra cried and said that she didn’t recognize herself anymore. “I loved my brain.”

When she finally saw the neuropsychologist, after putting the appointment off for years, she was almost relieved to hear him say dementia. At least the thing had a name. But Debra grew cold when she read the doctor’s notes after their meeting. “It is strongly recommended,” he wrote, “that Ms. Koosed explore possible alternative care environments such as an adult foster home. Until an appropriate care environment is located, Ms. Koosed will require in-home assistance on a regular basis.”

Debra promised the doctor that she would start looking at nursing homes — because she worried that he might call some kind of housing authority and get her committed to an institution if she didn’t — but she knew she wouldn’t really. Instead, she started reading blogs about how awful and expensive most long-term-care homes were. She sent me links to articles. “Up to over $97K/year! Ouch!” she wrote in one message. “Where will the $$ come from? I feel sorry for the thousands of Baby Boomers who didn’t plan for this.”

Once, I asked Debra what she thought it would be like to be demented — this thing she would rather die than experience. But Debra didn’t seem to know. She wasn’t sure if she would feel anxious and depressed, or if she would forget to feel either of those things. She didn’t know if she would even feel. Debra did wonder if she would find the state of dementia to be undignified. She thought she probably wouldn’t, that she would have no self-respect left, by then, to offend. But still, she believed that some part of her would continue to hurt from all the small indignities of life in an institution where nobody loved her. How would you describe your relationship with Debra? Did you ever feel you were taking advantage of her situation? What ethical questions did you confront? I did not think I was taking advantage of her situation — at least not more than any journalist, by definition, takes advantage of her subjects and their situations. Just because someone has early stage dementia does not mean that they are out of their minds — that they are incapable of understanding their best interests, much less acting on them. Debra was very clear and very certain. She knew what she was doing. Of course, I could have declined to write about her. I could have, I don’t know, decided to protect her from herself? But why would I do that? And what would that accomplish? Would that leave Debra with more or less freedom? Sometimes, I think, in a well-intentioned effort to protect vulnerable groups, we choose not to ask them any questions at all — and thus we silence them. I was very careful. I told Debra, over and over, that I had no stake in the outcome of her story. I told her I was writing about people who are considering assisted death in some way — and that it didn’t matter to me, one way or another, how her story ended. I certainly did not want anyone to die for the sake of a story, or for the sake of my story. I also told her, virtually every time we spoke, that she owed me nothing. If she wanted to stop speaking with me, that was OK. She could let me know or, if it was easier, she could just stop ignoring my calls. I had other people stop answering my calls and I let them go.

Skeptics of medical aid in dying argue that our focus should be on facilitating good lives, not curating good deaths. This, they argue, is because there are no good deaths, or because the quality of our death is largely out of our hands, or because our quixotic preoccupation with engineering the perfect final hour is a disproportionate use of our efforts, which would be better spent improving life.

Once, on the phone with me, Debra cried and said she didn’t recognize herself anymore. “I loved my brain.”

But Debra believed that her ending mattered. She would have to live her ending, after all. Also, endings had a way of bending back on themselves and changing the way that a person’s whole life was remembered. Debra did not want a bad ending. With FEN’s help, she thought, she could script her life story all the way to her final breath.

In some ways, Debra fit the typical profile of the Oregon resident who receives physician-assisted death under the state’s law: white, over 65, professional. The great myth of death-with-dignity legislation, researchers know, is that it exists to relieve people from excruciating pain. In fact, pain is not the number-one reason that people choose assisted death, nor even a top reason. According to the Oregon Health Authority, 90.9 percent of the 1,275 people who used the law between 1998 and 2017 cited “Losing autonomy” as their primary end-of-life concern. Just 25.8 percent identified “Inadequate pain control or concern about it.” Patients in Oregon are more likely to request aid in dying for existential reasons than for physical ones. Could you describe the research you did that enabled you to write with such authority about this myth? I spent five years researching assisted dying. I spoke with hundreds of doctors, nurses, advocates and patients. I came to understand, very deeply, the gap between Death with Dignity laws, as they exist, and the needs of patients on the ground. When it came to examining patient preferences, that was more straightforward. A number of state health agencies publish annual reports, with anonymized medical data on aid-in-dying. The reports draw on lengthy surveys that physicians are asked to fill out.

In early February, Debra called Brian to say that she was ready for the next step. Brian and Lowrey Brown, the other exit guide assigned to Debra’s case, drove west from Portland to Pacific City. When Brian entered Debra’s home, he saw bottles of pills and vitamins, which Debra had arranged on the kitchen countertop because she didn’t want to forget to take them. The exit guides asked Debra to sign a piece of paper acknowledging that she had explored all of her medical options and that she still wanted to proceed. Then Lowrey went through the standard FEN demonstration, using her own equipment, which she had brought from Portland so that she wouldn’t have to touch Debra’s supplies. It didn’t take long, 15 minutes maybe. It wasn’t — as the guides told Debra, and Debra agreed — “rocket science.” Lowrey showed Debra how to fashion a hood out of the plastic bag, how to attach the plastic tubing to the gas canister, how to snake the tubing up the bag. Debra practiced pulling the bag over her head and, just for a second, releasing the gas valve. The exit guides wanted her to see that breathing inert gas didn’t feel like suffocating or drowning. It would just feel like normal breathing until, after a minute or so, she wouldn’t feel anything at all.

When they were finished, the guides reminded Debra that she needed to come up with a plan for the discovery of her body. “That’s part of what we do,” Lowrey told me. Why did Brian and Lowery talk to you? Were there concerns about patient privacy that had to be resolved first? Did Debra or the Final Exit Network place any restrictions on you? BrIan  and Lowrey are not ashamed of their work. They want people to understand what they do and why. And, they believe their work to be wholly within the law. They weren’t afraid of getting in legal trouble because, by then, they trusted that I would be careful and accurate in my wording. Debra gave Brian and Lowrey permission to discuss her case with me. When it came to discussing other clients, they were more careful. But keep in mind, exit guides are not formal healthcare providers. They aren’t bound by HIPPA.

“We don’t want somebody accidentally stumbling across a death scene that they’re not expecting.” In many FEN deaths, a loved one was involved: a spouse or child who could call the police — sometimes, in feigned panic — to report the death. FEN volunteers usually insist on this as a way of protecting the network from charges of coercion and also, they say, because it’s comforting for clients to have someone they love there. Debra, though, would be dying alone. The exit guides could close the curtains before they left the house, but they could not be the ones to call the police. Tension builds here as it appears Debra may actually go through with her plan? Did you deliberately withhold that information until now? No, I just wrote about how things unfolded. As the days moved on, Debra’s plans got more… specific. I had no idea, until the very, very end, whether Debra would go through with her suicide. I couldn’t possibly have known.

The most reassuring thing, Debra told me later, was that Brian and Lowrey had listened to everything she said and believed her. Debra’s scattering of friends didn’t always have the same reaction. On the phone, Debra’s friend Robin sometimes told her that she sounded normal. They were all getting older, weren’t they? They all forgot things. Robin thought that Debra’s opioid painkillers, which she’d started taking after the car accident, were slowing her thoughts as much as the dementia was. Did you interview Robin? Yes.

She thought Debra had lost the will to live when David died.

Her friends’ incredulity enraged Debra and tended to provoke frenzied diatribes about the many cognitive screw-ups that she experienced in the course of a day. There were the lost hours. The lost words. The time she forgot how to put on eyeshadow and needed to watch a YouTube makeup tutorial to learn again. Debra didn’t tell Robin what she was planning, though she started leaving hints. She told Robin how she had put down her dog in February because the dog was suffering, and didn’t Robin agree that when you love somebody, you can’t just watch her suffer?

On the phone, Janet of the Final Exit Network told Debra she should be careful about whom she told. If the wrong person found out, she could end up under lockdown suicide watch.

One morning in mid-March, Debra and I sat at her kitchen table eating breakfast burritos. How much time did you spend in person with Debra, as well on the phone and exchanging texts? Nearly a week in person. Lots and lots of time over the phone. We also emailed and texted a lot.

Even though she had moved the tax forms out of the way, the surface was still cluttered with tablecloths and decorative crocheted coverings and patterned napkins. Debra faced the window, looking out at the water, in a gray tracksuit and dangly silver earrings, her swollen legs propped up on a footstool next to my chair. When her phone beeped, Debra glanced at it briefly and then took two pills from a plastic pillbox in her handbag.

How did she think her friends or far-away cousins would feel when she killed herself? Some would be disappointed, Debra granted. But they’d understand or they wouldn’t, and she wasn’t close to them anyway.

After breakfast, Debra said there was something she wanted to show me, and she slipped an old tape into her VCR and turned on the kitchen television. On the screen, an image of a younger, more made-up Debra appeared. She was in her early 30s and had just been promoted at the phone company and had enrolled in a public-speaking course, which was taped for instructional purposes. In the video, off-screen teachers called out instructions to “Debbie.” Smile more, they said. As the video-screen Debbie began her mock sales pitch, real-life Debra shook her head at the kitchen table beside me. “The first thing I’m doing wrong is I have my hands in my pockets,” she scoffed.

Debra watched the video all the way through, her face turned up toward the screen. “Cheesy,” she whispered, when 30-something Debbie said something hackneyed or cute. I watched Debra, watching Debbie, and said nothing. Why do you think Debra showed you the video? Debra loved reminiscing about old days at the phone company. At the end of the day, I was someone she could reminisce with. Also I think that Debra understood, by then, what I was working on — she understood that I wanted to tell her story in some detail. Maybe she was throwing me a bone.

Before I left, Debra showed me the spot by the living room window where she planned to kill herself: overlooking the beach and the tide. On the phone, Brian had told her that she should start thinking about her final hours in more detail. What kind of music did she want playing? What about a last meal? But all Debra wanted was to have a photo of David beside her and for her last sight to be of the water. Already, Debra was checking the weather forecasts every day and praying for clear skies. But the weeks ahead were filled with rain.

NO AMERICAN state has seriously considered the idea of extending aid in dying to dementia patients, and no major American lobby group is advocating for it. Compassion & Choices CEO Kim Callinan told me that her organization has no interest in expanding the Death With Dignity Act’s eligibility criteria. This is largely a matter of philosophy; Callinan does not think that a person with compromised mental capacity should be helped to die, though she does think that people with dementia should be empowered to refuse, in advance, aggressive medical treatment and even food and water. But it’s also a matter of tactics. “Politically, it’s hard enough to get laws passed that have these requirements,” she said. Compassion & Choices is committed to the enormous task of passing death-with-dignity laws in the states where they do not exist, and in Callinan’s view, this means replicating the tried-and-tested Oregon model. Here, the Final Exit Network is not always helpful. “Talking about death is already hard, so when you start talking about death with gas tanks and plastic bags….”

Advocates also know that any expansion of Oregon’s eligibility criteria will fulfill the darkest prophesies of right-to-die opponents, who warn that after death-with-dignity laws are passed, they will inexorably be expanded to include more categories of patients. It will then be a slippery slope to cheap death or forced killing. Opponents have also hypothesized that a right to die for dementia patients could eventually evolve into a duty to die. Would greedy or distressed family members encourage it? Even if they didn’t, would the selfless patient feel obligated to choose death before she drained the people she loved of money and patience? Given Callinan’s views, did you tell her that you were reporting Debra’s story? Of course not. I don’t tell sources about other sources who I’m speaking with.

When, in 2015, an Oregon legislator named Mitch Greenlick introduced a bill to amend the Death With Dignity Act, extending the terminal prognosis requirement from six months to 12 months, Compassion & Choices lobbied against it. The bill went nowhere. In January 2019, Greenlick introduced another bill that would expand the Death With Dignity Act’s definition of “terminal illness” in a way that, he hopes, could include dementia. Compassion & Choices opposes this proposal, too.

In Belgium and the Netherlands, a patient can qualify under the country’s assisted-dying law on the basis of an early-stage dementia diagnosis — provided that her request is “voluntary” and “well-considered,” and that she is mentally competent at the time of her death. Dr. Peter de Deyn, a Belgian neurologist at the University of Antwerp, told me that when one of his patients is interested in assisted dying, he will meet with her at regular intervals to make sure that she is “still capable of making decisions.” How did you communicate with him? Phone.  Dr. de Deyn promises to say “when the moment is getting doubtful.… But, of course, it’s not an on-off switch. Demented or not demented. It’s a process.” A patient can miss her chance if she waits too long, but once she is approved, there is no such thing, legally, as too soon — and it is not the job of any doctor or bureaucrat to insist that there is still plenty of good time left.

Between 2002 and 2013, 62 Belgians with dementia died this way: “preventatively,” to quote medical reports. Were you able to obtain these medical reports? Yes. The Belgian government publishes this data in annual reports.

But these patients ask something difficult of their doctors. Physicians are, after all, taught to treat symptoms. When the dementia patients ask to die, however, they are often not suffering physically at all — or, not much. If they can be said to suffer, it is from fear of future suffering. The patients are hedging their bets: making guesses about how and when their future selves will hurt. Some Belgian doctors, even ones who approve of physician-assisted death, have said that they want nothing to do with this sort of prophylactic medicine.

In Belgium and the Netherlands, a patient can qualify under the country’s assisted-dying law on the basis of an early-stage dementia diagnosis — provided that her request is “voluntary.”

In the Netherlands, where euthanasia now accounts for more than 4 percent of total deaths in the country, the law goes further. There, a patient with advanced dementia can be euthanized at an agreed-upon moment if she has left written instructions in an advance health care directive. The moment might vary from patient to patient: when she has lost the ability to speak, say, or when she does not recognize her husband. Dutch doctors are allowed to euthanize their patients, by injection, even when they are “no longer able to communicate.”

Many physicians, though, have refused to carry out these pre-authorized euthanasias. In 2017, more than 200 doctors took out an advertisement in a national newspaper to declare themselves opposed to the practice. Some have questioned what constitutes “suffering” in a state of profound cognitive loss. Do deeply demented patients really suffer? Others are distressed by the idea that a competent patient can assume decision-making powers over a future, incompetent version of herself — even as she fades away and the new self comes into being. Dutch doctors debate whether these two versions of the patient — the “then-self” before dementia and the “now-self” with dementia — are even the same person. If they are not, then why does the one get to dictate choices for the other? After all your work on this story, what do you think of this argument? It’s a very smart and also beautifully composed argument. I’m not sure that it’s very compelling to many people with dementia who want a way out.

In Canada, lawmakers are considering whether to expand the country’s 2016 assisted-dying law to patients with advanced dementia and are currently reviewing a 244-page report, written by an independent council of academics, that explores the possibility of “advanced requests for medical assistance in dying.”  When I asked Shanaaz Gokool, the director of Dying With Dignity Canada, whether the tension playing out in Belgium and the Netherlands worried her, she was unequivocal. “You do as much as you can with the information you have to mitigate against harm,” she said, “but you don’t exclude a whole category of patients because there have been some problems in Belgium.” Why did you break away here from Debra’s story to recount legislative action and the situation in Europe and Canada? I think context is important here. An American reader might assume that a “right to die” for patients with dementia is out of the question — a wild fantasy. But such a right exists in Europe and is being considered in Canada. That’s important. It helps us to think about what is possible.

ONE COOL MORNING in mid-March, Debra woke up and did not know where she was. “Seconds. The longest seconds that I can imagine.” Then, she remembered. “And then I went, ‘Oh.’ Then I went, ‘Fuck.’ Because you realize what you’re forgetting.” A friend told Debra that she should write a note and tape it to her bathroom mirror: DEBRA, YOU ARE DEBRA. THIS IS YOUR HOME. YOU ARE SAFE.

She said she wasn’t wavering. She said she had taken stock of her life, as it was, and could see only bad omens ahead. Debra started talking to God for the first time in years. “I said, I really need a strong message. You know, one way or the other, I need to know. Either you put a light at the end of the tunnel that says it’s not time for me to go or you point it in the direction that makes me understand that it is time.”

One Saturday, Debra woke up and felt like she was a decade younger. “I was firing on all cylinders.” She could multitask. She did laundry while she watched television. She started writing goodbye letters to the people she knew. Everything was vivid. But then, the next day, she felt like crap again. “I just went from smart to dumb.” Debra thought that God had given her one last good day so that she could see how far she had fallen. She thought the stars were aligning around her choice. “Aligning. Is that how they word it?” It seemed that Debra’s faith had become liquid — able to fill whatever hollows of doubt that opened up as the weeks moved forward.

God was finding new ways to deliver messages to her. The broken boiler was a sign. The bottle of balsamic vinegar that she dropped on the kitchen floor was a sign. The letters from the mortgage company, addressed to David, which Debra nervously sent on to her lawyer, were also signs. How was Debra communicating her state of mind to you? Do you get these details in a single interview? And why summarize rather than let Debra speak directly? My interviews with Debra were usually scattered. She found it hard to follow her thoughts through, to completion. She forgot things and remembered them later. This meant that I often had to piece together her stories, from multiple conversations. These paragraphs are woven together from months of reporting. And how did Debra communicate her state of mind? She just talked. She was capable of speaking — sometimes very elegantly.

By then, Debra was spending up to six hours a day on her taxes. “I’ve lost my way,” she said on March 20.

Most days found her on the phone with TurboTax, waiting on hold and then, when it was her turn, pleading for customer service help. Debra had decided to donate everything she had to the Oregon Humane Society. She wanted her money to help dogs, like all the ones she had loved over the years. “The thing that is keeping me alive, choosing not to exit right now at this moment, is the fact that I am the type of person that will not leave my estate a frigging mess,” she said. The story is moving now to Debra’s intended end. Was this a conscious decision as you organized and wrote the story? I knew, when I started writing, that the story would end with Debra’s end. I don’t know how else I could have written it.

Debra was dismissive of the hypotheticals I often lobbed her way — questions about whether she would stay if David were alive or if she had enough money to keep the home. “If I had money and people who cared about and cared for me, then I would,” she said. “But I don’t.” Another time, she demanded, “How would you feel if you knew that you were no longer going to be you?” Why did you pose hypotheticals? Were you hoping to dissuade her from killing herself? Of course not. Never. I was just trying to understand her intentions. I wanted to understand the conditions under which she might have stayed.

In a safe near the front of her house, Debra had stashed several months’ worth of medication: pain pills that she and David had hoarded over many years by skipping a pill here and there or by refilling a prescription a few days early, when the pharmacist wasn’t keeping track. It had been David’s idea. If there was some kind of national emergency, he said, they could live off their stockpile. Now, Debra had enough medication to keep her going, which meant that she could stop seeing her doctor. When the secretary at the doctor’s office called to remind Debra that she was due for an appointment, she did not return the call.

She started shredding documents and old photographs, deleting emails and text messages from her friends, from FEN. She didn’t want strangers rifling through her business when she was gone. She didn’t want anyone to get in trouble. Debra stopped watching the news in the evenings. Once, she and David had watched television side by side: she, always irritating him by talking over the broadcasts. But now, she didn’t care. Anyway, Debra thought the world was hurtling toward Armageddon. Global destruction. China, Iran, polluted oceans, kids killing kids. Did you journal as you were working on the story and if so, did you use the material in the final product? Yes, I wrote a lot, so that I would remember how things occurred to me when they were fresh and surprising. I used that material in this piece and in the book.

“It’s very difficult for people to understand what I’m going through because what you see and what you hear is not the real me. You see a fake. I put on a face for you,” Debra told me at the end of March. “David was the only one that saw the real me. It’s unfortunate.”

ON APRIL 17, Debra woke early and ate a carton of coconut-flavored Greek yogurt in the kitchen and then spent some time wheeling around the house, looking at all of her belongings. Did you speak to Debra on her final day? Yes.

She looked out the window. For weeks, it had been raining, but now the weather was fine. Debra had taken a Xanax to calm her nerves. She had finished her taxes. Debra’s taxes, in the beginning and end of the story and two other times, are an effective narrative touchstone. Why did you choose them? What a banal thing — taxes. Why was she so obsessed with them, given that she was going to die soon anyway? It was confusing. And yet, Debra was very much preoccupied with her taxes. They were a metaphor for… something, maybe. I gave them the weight and importance that she gave them. Besides, final moments are not always poetic or cathartic or meaningful. Sometimes they are just ordinary.

When Brian and Lowrey arrived from Portland around 8 a.m., Debra had already taped the letters to the front door. One was addressed to Robin, telling her not to come inside and to call the police, and thanking her for her friendship. Robin would find it when she came that day to drop off Debra’s mail. Another letter was addressed to the authorities. Inside, the exit guides saw the bag and the gas canister waiting by the living room window beside a small table that Debra had covered with pictures of David and their dogs. Brian told Debra that she didn’t have to go through with it. She could change her mind. They could leave. No big deal. But Debra said, “Let’s do this.” So Brian and Lowrey both hugged her. They then knelt down on each side of the wheelchair. How were you able to reconstruct Debra’s last day? Conversations with Debra, Robin, Brian, Lowrey, local police officers, healthcare officials and the executor of Debra’s estate. Via Freedom of Information Request, I was also able to obtain the police report detailing the discovery of Debra’s body.

That afternoon, the Tillamook County Sheriff’s Office received a call about a possible suicide in Pacific City. How did you learn of Debra’s death? She called me just before. We talked for an hour. I spoke to Brian and Lowrey afterward.

It took the sergeants and one sheriff a half-hour to drive to the house. It was 2:01 p.m. when they opened the note from Debra, telling them where to find a key to the front door.

When the officers stepped inside, they found yellow Post-it notes on everything. There was a note on the bed frame, explaining that Debra had bought it at an estate sale in California. There was a note on the dryer, indicating its temperature range. There were notes on some of David’s antiques, advising that they were valuable. “Don’t sell it for nothing.”

Lieutenant Jim Horton observed that this wasn’t the kind of thing you run into every day — but then again, he had run into things like this before. After looking through the house for several hours, Horton and his colleagues agreed that nothing looked amiss. It seemed obvious that Debra had known what she was doing and that “she had done it completely independently.”

Later, there was just one strange thing that Lieutenant Horton found hard to shake. It was nice out, but all the curtains were drawn. It’s an unsettling ending because of the mystery of the drawn curtains. What were you trying to suggest? That Brian and Lowrey did it? Or Debra abandoned her plan to die looking out at the water? Or did you leave it to the reader’s imagination? All of the above.

***

Chip Scanlan is an award-winning journalist who spent 15 years teaching at The Poynter Institute. He now writes and coaches writers from his home in St Petersburg, Florida. 

 

 

 

 

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