By March 2020, amyotrophic lateral sclerosis (ALS), the incurable illness also known as Lou Gehrig’s disease, had already ravaged Ron Deprez’s once-strong body with particular cruelty. He needed help with one last thing: to die. It fell to his daughter Esmé to make it happen.
Esmé E. Deprez was Ron Deprez’s only daughter. She also is a senior reporter for Bloomberg Businessweek magazine who specializes in longform narratives which demand “proactively identifying good story threads that require a lot of time and immersive reporting,” she told me.
Ron Deprez, 75, lived in Maine. The state had only recently legalized medical aid in dying, allowing mentally competent people with no more than six months to live to obtain life-ending drugs via prescription. He would be one of the first to take advantage of it.
His journey, escorted by his daughter, was chronicled in “How I Helped My Dad Die,” a 5,000-word narrative published in January 2021. With tragic granularity, Esmé Deprez twins a naked personal essay about her relationship and final role with her father with a deeply reported investigation of the state of access to assisted death in America and the world.
“I had a front-row seat and played an active role, so I could demystify it for people in a way that’d never been done before,” Deprez said. “Writing about my dad and sharing his story with the world felt like a way to honor him and how much of a pioneer he was in death, just as he had been in life.”
A serendipitous encounter with Rick Schine, a senior editor at Bloomberg, helped her see how she could make that happen.
“We were casually catching up about our lives and I told him what had happened with my dad. ‘Wow, have you thought about writing about that?’ he asked me. I told him I hadn’t pursued anything because I needed someone to come along with me on that journey, from conception to pitch to reporting to writing. He expressed interest in being that person, and an incredible collaboration ensued.”
Deprez believed the story should not just be about her father, but “focus on health policy, end-of-life-care, the right to retain control/autonomy as death nears and about dying gracefully amid the chaos of COVID-19.”
She spent most of her reporting trying to grasp how societies around the world have viewed, shaped, legislated and litigated the end of life and the hastening of death. That meant devoting long stretches talking with historians, aid-in-dying advocates and opponents, health-care economists and palliative care doctors, and reading relevant research to ground the story in science and economics. Her story was a finalist in 2022 National Magazine Awards essays-and-criticism category.
“Writing about my dad and sharing his story with the world felt like a way to honor him and how much of a pioneer he was in death, just as he had been in life.”
—Esmé Deprez
Deprez is meticulous with her research and reporting, bouncing facts and conclusions back to experts for verification. Editors have been her teachers: One has urged her to write first drafts without looking at her notes; the advice of others filled a Word document with tips that regularly influence her work.
The method Ron Deprez used to die is now legal in 10 states and Washington D.C. Opponents call it “physician-assisted suicide.” Advocates prefer “death with dignity.” As Maine’s bureaucracy initially delayed permission, Deprez described ways she and her husband considered how to support his wishes: leaving him alone with his Glock, using morphine left by a hospice nurse or taking him to Switzerland, the only country that allows easily accessible assisted death for nonresidents.
Ultimately, the roadblocks lifted. After describing the positions of supporters and opponents (religious groups chiefly), the story reaches its inevitable climax. Equipped with a $365 drug cocktail prescribed by her father’s primary care doctor, she, her husband, Alex, and her older brother, Réal, gave Ron the sendoff he chose, which included a rendition of “Mr. Bojangles” by David Bromberg, a special Irish whiskey and a photo of his late mother. An epilogue inspired by a poem she later found on her father’s nightstand concludes the story with a line that echoes the lead. It’s worth waiting for, so no spoilers here.
Nieman Storyboard interviewed Deprez about her decision to write in the first person, the way she organizes extensive research and how she handled privacy issues over her father’s condition and assisted death. Our conversation has been edited for length and clarity, and is followed by an annotation of the story.
Why did you write your story in the first person?
There are plenty of stories where you have that conversation with yourself: Does it make sense to insert myself as a character? This was never one of them. I conceived of it from the very beginning as a deeply personal story in which my dad and I would be the main characters. I was too close to it to do anything different.
Did your father know you were going to chronicle his life and death? If so, what was his reaction?
He didn’t know and I didn’t ask him because, when he was alive, I wasn’t thinking about the possibility of writing about this. The last year of his life coincided with the first year of my daughter Fern’s. Every day was just survival. It didn’t occur to me that I would write about his death, let alone in such an expanded format, until I’d begun to gain some perspective in the months following.
I’ve wrestled with what I think his reaction would be. Part of me is scared he would be mad — he turned so inward in his final year, not wanting to see his friends or disclose his condition or physical decline. But that was a lot about ego and he knew it. Ultimately I convinced myself that a bigger part of him would be proud of me — proud that I confronted his death and my grief about it in a very head-on way. I also thought about how he was a policy guy at heart, having devoted his life and career as a public health epidemiologist and consultant to developing and advancing health reforms in his backyard of rural Maine and as far away as West Africa. I think he’d be happy that his story could illuminate the real-world impact of a government policy of growing significance and help shape the way people see and feel about it.
You tell two stories — your father’s and the death-with-dignity movement. How did you stay organized?
With separate documents for each vein of reporting, such as legislative history, interviews, COVID angles, death/loss in general, etc. I also kept a diary of sorts, with observations and memories that I jotted down as they came to me, and a separate document of notes from conversations with editors as my understanding of things evolved.
What craft lessons did writing the story teach you?
This story compelled me to devote more time and effort into the craft of writing than I usually do, in part because I felt the pressure of having not just my name on the line, but my dad’s, too. This story felt like my life’s most important work, so I wanted to give it absolutely everything I had.
And now to go meta: Nieman Storyboard’s examination of a personal essay by Chris Solomon articulated the power of “temporal cues.” That inspired me to contrast the scene of my dad’s last day to the renewal and rebirth of spring in nature outside, and of his losing the ability to walk just as my daughter was gaining it. A Storyboard Q&A with Melissa Fay Greene highlighted the value of using objects in someone’s home to illustrate who they are, so I sought to do that, too. Another trick I used over and over again was changing up the font size and type of the text during writing and revising. It helps me see the story in a new light.
What surprises did you encounter along the way?
I’ve always considered myself a reporter — never a writer. I absolutely love to report stories, whereas the writing is usually the most difficult, if not downright disagreeable, part! But the writing of this story played out differently. It was still really hard, but the right kind of hard. And dare I say, at times, enjoyable. As I was writing out onto the page how everything with my dad had unfolded and contextualizing it with what I’d learned from my reporting, I was simultaneously making sense of it all for myself.
Were there writers, books or stories that you drew on for inspiration as you worked on the story?
In the lead-up to pitching the story, I went back to a 2010 Bloomberg Businessweek investigation by Amanda Bennett, about her and her cancer-stricken husband’s quest to prolong his life at whatever cost, physically and monetarily. My dad had chosen the exact opposite. Revisiting Amanda’s story helped me think about what other ingredients the magazine might want in a story born from such a personal premise. Convincing myself I’ve found a story to tell, and that others will agree, can sometimes feel more daunting than actually reporting and writing it.
A piece by Lauren Collins in the New Yorker about her dad’s death also gave me courage.
As I was reporting I read, and ended up quoting in the story, Atul Gawande’s book, “Being Mortal: Medicine and What Matters in the End.” It helped me as a reporter and it helped me as a grieving human.
And while writing, to placate my nerves about how the rest of my family might feel about the story, I kept this quote from Anne Lamott (in “Bird by Bird: Some Instructions on Writing and Life”) pasted at the top of my draft for a long time: “You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”
Annotation: Storyboard’s questions are in red, Deprez’ answers in blue.
How I Helped My Dad Die
His body wrecked by ALS, my father insisted that his death, like his life, was his to control.
By Esmé E DeprezJanuary 27, 2021, 3:00 AM PST
I was finishing up breakfast in New York when my dad sent me a text message. He was ready to die, and he needed me to help. You get to the meat of the story immediately in two sentences of varying lengths. There would seem to be an array of possible openings. Why did you choose this one? This was practically verbatim the lede I wrote in my pitch. Ledes often strike me at the strangest times — as I’m about to fall asleep, or driving down the road or eating dinner — and I have to stop whatever it is I’m doing and write them down immediately or I’ll forget. In general I think ledes should grab readers by the throat right away, and this felt like a way to do that.
The request left me shaken, but that’s different than saying it came as a shock. I’d begun to grasp that something was really wrong 10 months before, in May 2019, when he’d come to California from Maine. He was there to meet his first granddaughter, Fern, to whom I’d recently given birth. But he couldn’t bend down to pick her up. He was having trouble walking, and he spoke of the future in uncharacteristically dark terms. We’d traveled to see him in Maine four times since then, and each time he’d looked older: his face more gaunt, his frame more frail.
At first, he’d walk the short distance to go to the bathroom. Then he needed someone to help him stand and use a portable urinal. Where once we’d all gather around the candlelit dinner table to eat, a ritual on which he’d always insisted, he now sat with a plate in front of the television. Eventually he started sleeping in a mechanical hospital bed on the first floor so he could avoid the stairs. He refused the wheelchair and walker, and kept falling as a result. I hated my growing hesitancy to place Fern in his lap, but sensed his fear of dropping her. Were you concerned about violating your father’s privacy? I thought hard about how, as a journalist, I ask strangers to share with me the most intimate details of their lives. It felt hypocritical to approach this any differently. Half-assing the details wouldn’t have served the story and a half-assed story wouldn’t have served the readers or my dad. If I was going to write this, I was going to go all in.
By the time my dad texted me, on March 12, 2020, amyotrophic lateral sclerosis, the incurable illness also known as Lou Gehrig’s disease, had ravaged the 75-year-old body to which he’d so diligently tended—the body of a disciplined athlete and restless traveler who’d run 18 marathons, summited mountains across North America, and navigated remote stretches of Africa. It felt both cruel and kind that his “condition,” as he called it, spared his mind—the mind he’d used to become a Harvard-trained epidemiologist, preach the power of public policy, recite William Wordsworth from memory, and extemporize about Rousseau, Marx, and Krishnamurti. ALS had robbed him of his most prized ideals, independence and freedom, and trapped him in a brown leather recliner in his girlfriend’s living room. “Trapped” is such a vivid action verb. How did you choose it? It just kind of flowed out while writing the first draft. And as soon as it did, it felt like a powerful summation of what ALS had done to him: trapped him against his will. I liked the action it implied, how it takes ALS from passive affliction to active villain. He was staring down quadriplegia. Ronald David Deprez had had enough. In 340 words, you balance the harrowing and granular description of your father’s adventurous life and accomplishments and the ravages of ALS. Could you describe its construction, rewriting and revision? Frontloading the story with all this info about my dad so was partially my way of trying to reel the reader in. I was very conscious of the fact that 99.9% of readers would be learning about my dad for the first time, so I felt compelled to try to convince them right away that he was worth investing their time in. Otherwise why bother to read this long story about some random stranger?
I had come to New York with Fern and my husband, Alex. It was an absurd time to travel there: Coronavirus case numbers had begun to spike, and the city was shutting down, leaving the streets eerily empty. But I had work to do and plans to go see my dad afterward. I’d feared the pandemic might soon ground domestic air travel, stranding me across the country from him for who knew how long.
Maine had only recently legalized medical aid in dying, allowing people with terminal illnesses and a prognosis of six remaining months or less to obtain life-ending drugs via prescription. In April my dad became the second Mainer to make use of the new law. As you wrote the piece, how conscious were you of the reader’s need to orient themselves in time, when things were happening? Very conscious, and I still worry about the amount of time travel that I ask the reader to do. But I had to trust that if my editors didn’t flag it as problematic, the reader would be fine. My journalism roots are in breaking news and quick-turn news-driven enterprise. Back in those days, I could use indirect ledes only sparingly and when I did, they had to be short and judicious and build to the bigger point/issues within a couple grafs if not sentences. So now anything longer than that feels inherently indulgent, and I’m mindful of not abusing the privilege.
He’d always said he’d sooner disappear into the woods with his Glock than end up on a ventilator or a feeding tube, alone in an institution. The law provided a more palatable path. Opponents call this method of dying, which is now legal in eight other states and Washington, D.C., physician-assisted suicide. Advocates prefer the term death with dignity. It’s an extreme act, not suited to most people. But it sits at the outer edge of a continuum of health-care options that allow people to retain control over how and when their lives might best end. And for the majority of Americans—who surveys show would, if faced with terminal illness, prefer to forgo aggressive interventions and die at home—more alternatives exist along that continuum than ever before. You do a masterful job of presenting complicated matters in accessible writing. How big was that concern as you wrote and revised your story? Very kind of you to say. I try to balance the need to write with authority with the need to be conversational and accessible. The reader is already working hard by digging into a long, complicated story. I don’t want to make their job harder, or I’ll lose them. I tend to report the crap out of stories, which typically involves going down tons of rabbit holes so I can get a better sense of how everything is connected — or not. I don’t have a beat, so with each story, I’m often approaching subjects as a beginner with fresh eyes for the first time. I’m trying to make sense of things for myself, which I do by explaining them on the page in the simplest and most straightforward ways possible. And then, while fact-checking, I consult with actual subject matter experts to make sure the ways in which I’ve distilled my reporting is accurate and makes sense.
The second-youngest of four children, my dad was raised primarily by his mother, who worked as a hotel chambermaid. After co-captaining his college football team, he went on to found a public-health research and consulting firm and a nonprofit. He became an amateur photographer, expert cook, and self-described Buddhist. He could wire a house, tile a floor, bag a duck, skin a deer, ride a motorcycle, and helm a boat. I love this litany. Usually, the rule of threes prevails, but you double it to great effect. Were you conscious of that, and how did you decide which of your father’s many accomplishments to highlight. How much drafting and revision did it take to create this? This list came almost directly from the obituary I wrote for him. (I had waited a good few weeks after his death to write it, and then it just flowed out of me.) He could seemingly do everything! And I was desperate to do that (do him) justice, so the rule of three never even felt like an option here. I remember how daunting it was to try to sum up his life and marveling at all his various skills and interests, so I just began listing a bunch out, and I liked the way it sounded. His life testified to the notion that if you work hard enough, you can do just about anything. Again, you braid the reality of death with dignity, exemplified by Maine’s law and the changing attitudes towards it and then shift to reveal more about your Dad’s life before ALS. What was your plan for structuring the story? How did you implement it: outline, use notecards, a whiteboard? My former editor Steve Merelman, who’s shaped me more than any other, used to tell me to write without my notes: “You put in placeholders for quotes and facts you know exist. You’ll remember the important stuff. Then, after the first draft, you go back and fill in details and flesh out the skeleton. This is a trick that forces your writing brain out of the thicket of facts and makes it assemble a coherent narrative, the sort you’d tell on a bar stool. It works.” I have a Word doc full of advice from him and others and reference it often. I’ve developed my own haphazard process rooted in this advice: Early on in the reporting, I begin charting a rough outline of stream-of-consciousness notes to myself about what I want the story to include/say and in vaguely what order and then keep adding to it and moving things around as I do more reporting. If I do it right, it means that by the time I’m done reporting and am staring down my deadline, I don’t have to begin with a blank screen, which makes it feel so much less daunting. I just have to graft the meat onto the skeleton with the reporting from my notebooks. This means by definition that I’ve already spent a ton of time thinking about structure, how one thing is going to flow into the next.
Then came ALS, a force he couldn’t bend to his will. The disease would cause his nerve cells to degenerate and die, turning his muscles to mush and depriving his brain of the ability to voluntarily control the movements involved in talking and swallowing. He’d lose his ability to walk and grow prone to choking, labored breathing, and pneumonia. He’d be dead within three years of the onset of symptoms, maybe five, after his body suffocated itself. What did you draw on to compose the effects of ALS in such vivid fashion? How difficult was it to write this about your father’s prognosis? I read a lot of medical literature and talked to doctors to understand exactly what ALS does to the body. I knew early on I didn’t want to just say how the disease evolves generally — I wanted to put this in the context of what it would do to my dad’s body in particular, because I thought it would feel more personal and powerful that way. I think it proved easier to write than you might expect because my dad, in choosing aid-in-dying, avoided a lot of the worst of what I describe. So as I learned more about the awful ravages of end-stage ALS, I felt grateful he hadn’t had to endure a lot of it. He wasn’t going to beat ALS. No one does. But neither was he willing to let it beat him. I admire the way you vary and pace sentence length, giving them massive impact. How did you learn to take that approach? I’ve surely just learned through osmosis by reading writers I admire: Eli Saslow, Katherine Boo, Michael Kruse, etc. I often have a Nick Paumgarten story on my desk when I’m writing, and I’ll read bits of it as I go for inspiration and to try to harness his pacing and tone. Also I think this is a natural part of writing in a way that aims to feel conversational. I always read drafts aloud to myself to catch errors and refine the flow. We don’t talk in same-length sentences, so there’s no reason to write in them either.
Perhaps there’d been early indicators, easy to dismiss in the moment. While hiking with my husband in Morocco’s Atlas Mountains in 2013, Dad wobbled precariously on the boulder-strewn trails. During a trip he and I took to Beirut and Cairo in 2017, painful cramps wracked his legs in the night. That winter, walking across the parking lot after a day of skiing in the Sierra Nevada, a spill left him splayed out on the asphalt amid his gear. When did you start writing the story? How long did it take from reporting, focusing, structure, drafting, revision and editing to publication? I first connected with Rick Schine in July and we pitched the story to the magazine in September 2020, but I was juggling three other features at the time that would run by year’s end, so I reported in spurts throughout the fall. I tried to devote the last two weeks of November to just writing, and filed my first draft to Rick on Nov. 30. By this time I was pregnant again, with my second daughter, and due to give birth in February, so we had a hard deadline. The story published on Jan. 27.
Neurologists at Massachusetts General Hospital were the first to suggest ALS, in the summer of 2018. Dad refused to follow up as recommended, didn’t share the news for many months, and brushed it off when he did. Instead, he convinced himself and us that orthopedic surgeries would help him overcome what he cast as the typical fate of an aging athlete. But a knee replacement in September 2018 failed to improve his balance. Neck surgery in March 2019 didn’t halt the weakening and atrophying of his right arm, left him perpetually exhausted, and set in motion a downward spiral. Since he kept the news of his condition a secret, how did you learn about the tentative diagnosis and his symptoms? He was very open about his symptoms; it was just the initial neurologist’s suggestion that they could be caused by ALS that he wasn’t quick to share. And as I note, he dismissed its validity. Given he was the health care expert, who was I to argue? I’ve since come to attribute this to his being in a state of denial. I couldn’t see that at the time; I wanted to believe it wasn’t ALS as much as he did. But eventually it grew clear that none of the other possible explanations for his body’s decline stacked up to reality.
Back in the 1970s, when my dad embodied his progressive politics with a full head of curly brown hair and a bushy mustache, he helped craft health policy inside the halls of Maine’s statehouse. Why did you include his physical appearance here? How big of a role did family photos play in reporting and writing your story? This was my way of being able to inply that he was a hippie without saying it outright. My dad was a lifelong photographer and his house is plastered with old photos of him and our family, and I worked on this story while living at his house, so that infused the reporting and writing quite a bit. Decades later, within days of his neck surgery, lawmakers there proposed a radical shift in the state’s approach to life’s end: the Maine Death with Dignity Act. At least seven similar attempts since 1995 had failed. This one passed, by a single vote, making Maine the ninth state where assisted death is legal. (Oregon was the first, in 1994.) The timing proved propitious for my dad, its approval and implementation unfolding as he inched closer to needing it.
He was born in 1944, part of a generation that experienced waves of scientific progress and technological breakthroughs that have enabled people to overcome acute diseases and manage chronic conditions. These advances have allowed people to live longer, making those 65 and older a larger share of the population than at any point in history.
A health-care system designed to prolong life at whatever cost, however, often fails to let it end. “We’re giving people interventions they don’t want and treatments that are painful and make them lose control over their own destiny and well-being at end of life,” Laura Carstensen, who teaches psychology and public policy at Stanford and is the founding director of its Center on Longevity, told me. “And with Medicare costs soaring, we’re going broke along the way.” This last point is true not just as a matter of government budgets, but on the personal level as well. As Atul Gawande wrote in his 2014 book, “Being Mortal,” “More than half of the elderly in long-term care facilities run through their entire savings and have to go on government assistance—welfare—to be able to afford it.” Do you think in terms of nut or context sections? This strikes me as one, a passage that enables the reader to understand the situation, why they should read the story, and then ends with the powerful supporting quote from Gawande. The years I spent covering big breaking national news stories hammered into me the importance of nut grafs and the crucial role they play in spelling out for the reader why we’re writing this story now and why they should care. I put a lot of effort into grounding the personal tale of my dad within the bigger picture to give the story context and relevance beyond the individual.
The pandemic has forced people to confront and consider death on a daily basis. Experts such as Carstensen say that’s not all bad: Conversations about dying and disease and end-of-life care can be uncomfortable, but research shows that they make it more likely for people to die in ways that honor their wishes, save money, and soften the heartache for those left behind. What role did your editors play in the development and completion of your story? My editor Rick Schine was a friend, therapist and story-shaper from the very beginning, helping to ponder and refine and ultimately execute our conception of what the story could and should be. I was very cognizant that this would not be a typical Bloomberg story, and had my bosses Bob Blau and Flynn McRoberts in the back of my mind when pushing myself to think hard about how to expand this beyond the personal and make it relevant to a wider, business-news reading audience. Once I began getting words onto the page, Rick and Dan Ferrara pushed me to really lean into the personal and intimate details and gave them a deft polish.
The idea that patients should have a say in their own end-of-life medical care has been fought over for decades. Like many his age, my dad had signed a legal document spelling out his wishes that health-care providers withhold life-prolonging treatment such as artificial nutrition or hydration should he become irreversibly incapacitated. Here you merge flashes of your father’s story within historical context. Why did you choose this approach and was it a challenge to achieve? My editor Rick wisely encouraged me to weave in bits about my dad wherever possible, so the reader never strays away from his story for too long. It took a lot of revision to accomplish — time and effort very well spent. The first such document wasn’t proposed until 1967, and it would be decades before directives of that nature gained prominence and legal recognition nationwide. Only after Congress passed the Patient Self-Determination Act in 1990 were hospitals and other providers required to inform patients of their rights under State law to make decisions concerning their medical care, including the right to refuse treatment. That same year, in its first right-to-die case, the U.S. Supreme Court ruled that a competent person has a constitutional right to refuse lifesaving hydration and nutrition. The court later decided that the Constitution doesn’t ensure the right to an assisted death, but it left states to make their own laws. You clearly did a tremendous amount of research to write about the policy issues around the right-to-die movement. I became totally obsessed with this topic. So yes, I read a ton and talked to a ton of people — historians, physicians, health-care economists, palliative care experts, aid-in-dying advocates and opponents, etc. One thing that really helped was to construct a timeline —a trick I learned from T. Christian Miller — because at some point most stories are going to flow chronologically. I added key legislative and cultural moments to the timeline, as well as key moments in the progression of my dad’s illness. This helped me identify evolution and patterns and make associations that could tie various elements of the story together.
Assisted-dying laws go beyond the right to die passively by refusing food, water, and care. They allow people like my dad to proactively hasten the end. Some 71 million Americans, or 1 in 5, now live in states where assisted death is possible. Where did you get this statistic? I used a map from Death with Dignity National Center to list the states, looked up census data on their populations, and added it up. While the number of people using the laws has grown over time, their ranks are still small: fewer than 4,500 cumulatively, according to data compiled by the advocacy group Death with Dignity National Center. In 2019, 405 died this way in California, the state with the highest number that year.
The broader principle of allowing people to control their final days has been shown to have clear benefits. It’s a top goal of palliative care, for example, a growing interdisciplinary approach that emphasizes discussions between seriously ill patients and their care providers about how to better manage their symptoms. Studies show it can result in less aggressive treatments, improved quality of life, and reduced spending. Hospice care, which begins after curative treatment stops and death is near, can also cut hospital use and costs.
Maine’s law requires navigating a maze of mandates and built-in delays intended to discourage all but the most motivated candidates. As the process dragged on longer than he’d anticipated, my dad grew increasingly pessimistic that he’d gain access to this option. So in a desperate attempt to reassure him he could die on his own terms, I found myself in the disturbing position of contemplating other ways to help him end his life. How did you approach the story, knowing that you were dealing with an intimate first-person through-line while conveying a lot of content in traditional journalistic style? I knew I’d have to lean heavily into the first person. That felt odd and uncomfortable given my lack of experience doing that. My editor Rick gave me plenty of pep talks to drive home the idea that this could be a beautiful and important story that only I could tell. At the same time, I wanted to heed advice given to me by Businessweek editor-in-chief Joel Weber: that an ability to find distance from the subject could take this story to the next level. Also, I felt very strongly about not veering into advocacy journalism. This was tricky: I’m a hard-news reporter at heart and believe strongly in the importance of not taking sides. But of course this issue was always going to be an exception: Aid-in-dying is what allowed my beloved dad to have the “good” death he wanted. That made it even more important that the facts couldn’t be compromised.
Perhaps my husband and I could carry him and his gun down the hill behind his house and leave him? Or take his rowboat out into the ocean and push him overboard? Smother him with a pillow while he slept? I was willing to consider the emotional and potential legal burden that came with these options, but they also horrified me. A hospice nurse had left a “comfort pack” of drugs in the fridge that included a vial of morphine. I researched how much would likely cause an overdose—more than we had. I looked into something called voluntarily stopping eating and drinking, or VSED. It sounded like torture, and my dad thought so, too. I explored what it would take to transport him to Switzerland, the only country that allows easily accessible assisted death for nonresidents. That could have taken months to organize. This must have been a tremendously painful time for you and your husband. How did you cope? I threw myself into working to get my dad qualified for Maine’s law as an attempt to gain some kind of control over the horrendous situation. Diving deep and hard is what I know how to do; in giving me purpose, it brings me peace. Also, in the days following my dad’s death, my older step-sister Martha, who lost her 36-year-old sister Meredith in 2006, told me, “Fern will get you through.”
I later learned of popular how-to books such as Final Exit, by the founder of the modern American right-to-die movement, Derek Humphry. It became a No. 1 New York Times bestseller after it was published in 1991 and has been translated into 13 languages and sold 2 million copies worldwide. (“The book’s popularity is a clarion call, signaling that existing social and clinical practices do not give Americans the sense of control they desire,” a New York state task force wrote in a report after the book’s publication.) In 2004, Humphry co-founded a group called Final Exit Network. According to its newsletter, its volunteers “go anywhere in the country to be with people, at no charge, who desperately seek a peaceful way to die,” even those “who are not necessarily terminal, including those suffering from early dementia.” Did you consider taking advantage of these volunteers to help your father die? I didn’t learn about these volunteers until after he died, when I was reporting this story.
Plotting ways to off my dad felt absurd. The assisted-death movement aims to save people from that predicament. Ludwig Minelli, the lawyer who founded the Swiss assisted-death organization Dignitas in 1998, saw himself as a crusader for “the very last human right.” Jack Kevorkian, who helped about 130 people die and was convicted of murder for one of those deaths, believed people should be able to choose to end their lives even if physical death isn’t as imminent as some U.S. state laws now require.
People with dementia and nonterminal conditions, such as severe depression, can qualify. Most countries with assisted-dying laws allow for euthanasia, which is when a doctor physically administers the drugs, usually by injection. All U.S. states forbid euthanasia and require patients to ingest life-ending drugs on their own. In this country, patients with dementia and severe depression are effectively barred from aid-in-dying methods. How did you master the reasons why the U.S. differs so radically from other countries with more liberal attitudes towards aid-in-dying? What do you think about the differences? I became very invested in learning about how and why U.S. aid-in-dying laws came to be so relatively narrow and distinguish between physical and mental (in)competence. My editor and I decided this story wasn’t the right venue to unpack all that, but I got the chance to do so in a follow-up story I published later in the year.
Most Americans support giving terminally ill individuals the choice to stop living. Gallup says solid majorities have done so since 1990 (ranging from 64% to 75%, up from 37% when it first polled on the issue in 1947). Majorities of all but one subgroup, those attending church weekly, are in favor, including Republicans and conservatives. Significantly, one-third of Americans who obtain prescriptions for lethal drugs don’t end up using them, which advocates say underscores how much comfort and peace people can find in just having the option. What was the biggest writing challenge as you wrote these passages? Deciding how much or little to include. I filed my first draft at close to 10,000 words (plus more in comments in the margins), in large part because I was so obsessed with and excited by everything I was learning and wanted to include it all. My editor and I haggled at length about what to cut and streamline, so the reader would have enough context and history but not get bogged down by it.
In the U.S., opposition has come mainly from religious groups that consider assisted death akin to suicide—to a sin—and from disability-rights advocates, who warn of the potential for abuse, coercion, and discrimination. The American Medical Association, one of many health-professional groups that has also fought the legalization of aid-in-dying, argues that the practice is “fundamentally incompatible with the physician’s role as healer.” Having gone through this experience, would you mind commenting on this opposition? I couldn’t find any credible evidence of abuse/coercion/discrimination. People have a right to oppose aid-in-dying and to not choose it for themselves. I’ll be forever grateful that my dad had the right to embrace it.
The hospice and palliative-care fields might seem like natural allies of assisted death. But Amber Barnato, a physician and professor at the Dartmouth Institute for Health Policy & Clinical Practice who studies end-of-life decision-making, says mainstream medicine has only recently begun to recognize the power of palliative care, and some people in the field worry that participation in assisted deaths might curb its reach. Palliative and hospice care are already wrongly linked with “giving up,” she says, and practitioners are wary of anything that could further that misconception. Research shows, however, that the availability of palliative care hasn’t suffered in places that have legalized assisted dying. And while opponents of Oregon’s law warned it would lead to the legalization of euthanasia, that hasn’t happened either.
Critics would call my dad’s death a suicide. But he wanted to live. He was going to die from his illness, regardless of whether he used lethal drugs to hasten it. The word “suicide” never felt like it fit.
On March 15, Alex, Fern, and I flew from New York to Portland, where my mom and dad raised my older brother, Réal, and me following their split in the mid-1980s. My dad had been living just outside the city with his girlfriend for the past year as he declined. Having just spent five days in what was then the heart of the pandemic, we said a quick, socially distanced hello before making our way to isolate at my dad’s house on Deer Isle, a three-hour drive up Maine’s coast. My husband and I both came down with moderate Covid‑19 symptoms within days. Here you switch again to your father’s story. This is where we begin in earnest the tick-tock of his final days. By this point I felt like we’d given the reader enough context and background to go on and appreciate that journey.
Over the next few weeks, my dad made the necessary requests for life-ending drugs from his primary-care doctor, Steven Edwards. (The law requires an oral request, then a second oral request and a written one at least 15 days later.) Why do you set off certain sentences within parentheses? I like using parentheses as a way to signal to the reader that here’s some information that I realize might disrupt the narrative flow, but that you need to know in order to understand. I sent him photos from the long walks I took in the woods along the water, Fern strapped to my chest. I could sense how happy it made him that we were enjoying the area and learning the idiosyncrasies of his house. We talked or FaceTimed every day. He told me his limbs felt heavy and hurt.
Much about the coronavirus remained a mystery, but we felt confident that by April 10 we’d no longer be contagious and planned to head south to see him. I’d just sat down to start my workday on the ninth when he texted me: “Es. You may think about coming today.” In the anxious fog of his pain, he couldn’t understand why he hadn’t yet qualified for Maine’s law and needed me to figure it out. We packed up the car and left as soon as we could.
The following day, I took a leave of absence from work to devote myself full time to researching the law’s requirements. I connected with the head of Maine Death with Dignity, the advocacy group that had helped write and pass the legislation. The law had been in effect just six months, and just one person had used it. Dr. Edwards could lose his medical license if he failed to follow its requirements to the letter.
Up until this point, I’d pushed my dad not to give up entirely on medical intervention. I talked up the two Food and Drug Administration-approved drugs for ALS, which can prolong life by a few months. I emailed with Mass General’s chief of neurology about an impending clinical trial for new therapies. I arranged an emergency visit to the Mayo Clinic in Minnesota. My dad wasn’t interested in any of this. He went to Mayo only grudgingly, accompanied by my brother and a family friend, and refused further testing once there. His girlfriend had been providing heroic, around-the-clock care, but as his needs grew, I spoke with assisted-living facilities, nursing homes, and providers of 24-hour in-home care. He shunned those options, too. Every time I pushed, I risked alienating and upsetting him further.
Even as I tried to mask my frustration—how could he not do everything possible to have even one more day with us?—witnessing my dad waste away helped me understand his desire to escape. Being physically capable was essential to him. He was annoyingly militant about eating healthfully. He’d skied and rock-climbed with us into his 70s and had bigger biceps and firmer abs than anyone I knew close to his age. He’d also worked hard to build his retirement savings, part of the legacy he’d leave to his children and grandchildren. Particularly important to him was the Deer Isle house, which he’d spent the past decade turning into a home. The last thing my dad wanted to do was to deplete his bank accounts by paying people to care for him past the point he could enjoy living.
He hadn’t given up in the face of his decline. He kept doing what exercises he could, getting acupuncture, and meditating. Nor did he let his appearance go, insisting on a daily shave and putting on real pants instead of sweats, with help from the home health aide who came in a few hours a day. But he didn’t want to be remembered as a frail, dependent shut-in. ALS had snatched away the vitality that had given his days meaning. He no longer recognized his life. Perhaps that would make it easier to leave behind. This is such a poignant passage. What did you draw on to write it and could you describe its composition? Was revision a large part of the process? The decision to choose aid-in-dying is still an uncommon one, so I felt the need to really explain for the reader what I understood to be my dad’s headspace at the time, so they’d be positioned to understand why he did what he did. I had in my mind this quote from Atul Gawande: “The battle of being mortal is the battle to maintain the integrity of one’s life — to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.” The passage changed slightly in edits but the thrust remained the same.
ALS patients make up the second-largest share of people opting for assisted deaths in the U.S., after those with cancer, data show. There’s no one test to identify ALS. Doctors conclude someone has it based on what’s called a “diagnosis of exclusion,” which is to say they systematically rule other things out. This characteristic of the disease, and my dad’s refusal to follow up with neurologists upon the first suggestion that it could be the cause of his body’s decline, had fed his denial that he had ALS. As I deciphered what remained to be done to get my dad qualified under Maine’s law, that denial emerged as the biggest hurdle. He didn’t have an official diagnosis, and his doctor couldn’t proceed without one. I scrambled to secure an emergency telemedicine appointment with a Mass General doctor my dad had seen back in 2018. As his iPad camera captured how difficult it had become for him to walk and raise his arms—evidence of the disease’s progression—she confirmed ALS without hesitation. That worked. Mercifully, I wouldn’t have to take drastic measures to help my dad end his life.
On April 17, I found myself behind the wheel of his black truck, driving the 20 minutes to a pharmacy in Portland, the only one in the state that sold the necessary drugs. I paid $365 and clutched the white paper bag like a precious heirloom. “… like a precious heirloom.” What a fine simile! Did it occur to you immediately or come to you during drafting or revision? This odd achievement of having finally obtained the actual drugs was so momentous. I originally wrote: “driving to the pharmacy to pick up the drugs he’d use to end his life.” But that didn’t feel like it invoked enough due drama, so I reworked it during the editing process.
In it was the latest protocol, called D-DMA: one brown glass bottle containing powdered digoxin, which is normally used to treat irregular heartbeat but causes the heart to stop at extreme doses. And another with a mixture of diazepam, commonly known as Valium, which is usually used to treat anxiety but suppresses the respiratory system at high doses; morphine, an opioid pain reliever and sedative that also suppresses the respiratory system; and amitriptyline, an antidepressant that stops the heart at high doses. Where did you get the specific information about contents of the drug cocktail? I called the pharmacy that had supplied the drugs and asked them to walk me through the formulation and email me the information sheet that I recalled having come with, but that I hadn’t thought at the time to save. I’d done a lot of reporting by this time on the evolution of various drug formulations used by aid-in-dying doctors over the years so wanted to nail this down. Listing out and defining the actual drugs one by one served the greater goal of demystifying this whole process for people.
The next day was my birthday, and Alex and I had persuaded my dad to let us take him for a walk outside in his wheelchair. “So we’ll go to Deer Isle tomorrow,” my dad proclaimed at one point out of the blue. No fanfare. It wasn’t a question. It was his way of saying it was time. This is a gut punch of a paragraph. Was it difficult to write? I’ve covered a lot of awful news events, and there’s an amount of compartmentalization that needs to happen, I think, between doing the job — as in, getting the news out — and however it might make you feel. I lead-wrote Bloomberg’s coverage of the Sandy Hook massacre, for example, and it wasn’t until a couple weeks after that the unfathomable sadness and evil of it all hit me in a way it hadn’t prior — Oh my god that really just happened, a guy murdered 20 little helpless carefree kids in cold blood — and I burst out crying. But in the moment it was just go-go-go get the news out as fast as you can. Obviously writing this story about my dad wasn’t breaking news but I think harnessing that practice of compartmentalization helped me get details like this out onto the page.
When morning came, my dad’s girlfriend got him packed and dressed and helped him into his truck. We stood back while they shared an emotional goodbye. The sky was clear as Dad, Alex, Fern, and I pulled out of the driveway.
A few hours later we crossed over my dad’s favorite bridge, suspended above the choppy waters of the Eggemoggin Reach, connecting the island to the mainland. His eyes welled up. We’d made good time and arrived well before dark. Alex carried my dad, piggyback-style, from the car into the house. My brother flew in a few hours later from California.
I slept beside my dad that night in his bed, waking to help him adjust his arms, drink water, and sit up to pee. I dripped blue drops of morphine into his mouth to ease the aches and help him sleep. It was intimate, odd, and beautiful, a role reversal neither of us had foreseen. I opened my eyes in the morning to find his trained upward, through the skylight. “Treat thoughts like clouds,” he said. “Just watch them pass by.” Although it’s painful to read, these descriptions bring to mind something Dan Barry of The New York Times said about the need to “slow down…when it comes down to time — to moments that, when carefully and concisely shared, can add dimension to character development or to a tick-tock. This happened, this happened, this happened — wait, let’s take another beat on this moment — and then this happened and this happened.” Were you consciously slowing the story down as you reached the end of the narrative and your father’s life? When I think back to those last few days, it was like time slowed down — after a period of weeks leading up to that point which felt like they moved very, very fast. Once we had the lethal meds in hand, every interaction I had with my dad was that much more precious, because I knew it’d be among the very last. So those final days always loomed large in my mind, and it felt like it only made sense to have them loom large in the story.
That was Monday, which he’d said would be the day. We gathered around him, seated in the swivel chair I’d helped him pick out years prior to gaze out the windows at the Atlantic Ocean. We rummaged through the plastic storage bins where he’d tossed thousands of old photos over the years. We found a black-and-white print of his father from the 1940s that he hadn’t seen in ages, and it made him beam. We came across fading negatives of a naked woman, and we laughed.
The pharmacy had enclosed precise directions: The drugs had to be taken on an empty stomach. But as the hours wore on, he kept wanting to eat. Sourdough hard pretzels. A chocolate Rx bar. Tinned calamari and crackers with cheese. Soon enough it was dinnertime, and Alex made my dad’s favorite: pasta with clams, freshly dug by a neighbor from the flats in front of the house and dropped off that morning. We sat around the dinner table and drank good wine and talked about the women who’d come and gone in my dad’s life. He asked which one we liked best. The specter of death hung over us, but, after so many months plunged into the mental anguish of his illness, he could live in the now. He no longer feared his deteriorating body, or the prospect of a prolonged death. If only for a day, we had our dad back. The story is so meticulously rendered with dialogue, details and scenes. Were you taking notes, recording? How did you verify the specific facts — especially about the final days of your father’s life? I typed out all the minute details of his last couple days that I could remember on a note on my iPhone the morning after he died. Not because I was thinking about writing it publicly one day, but because I was afraid I would forget, and they’d been such precious moments. I didn’t want to ever forget them. A lot of this section is taken directly from that. My husband later verified various things and provided additional details that I’d forgotten.
The night before, I’d read to him in bed from a book by his favorite poet and fellow Mainer, Edna St. Vincent Millay. I’d opened it to a random page: a poem called, of all things, The Suicide. Tonight it was Mary Mackey poems I looked up on the internet after we couldn’t find the book. I massaged his calves and quads and feet. He thanked me for helping him. I felt thankful, too—that he wanted me there by his side.
Would Tuesday be the day?
He kept us guessing until the end, which was maddening and exhausting and understandable. That morning, a health aide came to give him a sponge bath and a shave. She casually commented how much I looked like him—I was so clearly his daughter, she said—and I beamed with pride. We spent a while listing his favorite poems to share and songs to play at the memorial we’ll hold for him after the pandemic, and it made him smile. I read a letter my brother’s wife had written to him (the pandemic and two kids had kept her at home), and it made him cry. We meditated to the voice of Ram Dass. Fern toddled around in enviable ignorance, A magical phrase. Thank you. I fought to keep this in! figuring out how to take her first steps.
And then, at about 4 p.m., he declared himself ready to begin the process, with an anti-nausea drug. We wrapped ourselves in down coats and wheeled him outside to the front porch, where he used to sip dirty vodka martinis and smoke cigars after a hard day’s work. It would be weeks until the season’s last snowfall, but behind the house, along the forest path heading down to the water, the neon green shoots of fiddleheads were poking up through the earth and fresh spruce tips were emerging from the ends of the branches of the trees.
It started to drizzle, and we headed back inside. Dad asked us to move a framed black-and-white photo of his mother atop the wood stove he’d refurbished years ago. He said he hoped he’d see her. He said he’d miss not skiing with us again and “I’ll be all around you—just look for me,” or something to that effect. When the others stepped away, he turned to me and said he wouldn’t be doing this if he felt like his condition had left him any other choice. It felt like an apology. I told him I understood.
Réal and I stood at the kitchen sink and added water to the first powder—the digoxin that would slowly stop our dad’s heart — in a rocks glass with a redheaded canvasback duck painted on the side. Why so specific? My dad loved ducks and these were fancy glasses he rarely used, so it felt personally significant and I liked the added detail it brought to help the reader visualize this moment. I think it also worked to convey how non-medical, in a way, this kind of death can be.
There would be no turning back after this one. He stared at the liquid for a few moments, then gulped it down. “Only the good die young,” he said with a sly smile. Alex questioned what he meant. “Well, I haven’t been good,” he replied. We followed it with shots from a fancy bottle of Irish whiskey he’d been saving, Redbreast 15 Year Old. Why did you name the whiskey? A version of that old journalism adage: Always get the dog’s name!
He requested David Bromberg’s version of Mr. Bojangles and sang along. He said something about this being such an immensely better way to die than being hooked up to tubes in a hospital bed, and we all nodded. If ever there were a good way to go, Alex practically shouted through tears, this was it. Then we mixed, and Dad swallowed, the sedatives. “That was enough,” he said, leaving a few drops in the glass. “I’m dead.” And then, “Whoa, whoa,” and he closed his eyes for the final time. Is this written from memory? A lot of this comes from that note I wrote to myself on my iPhone the day after he died. My husband recalled the “That was enough, I’m dead” quote after he read the first draft so I added it, too. It struck me as such a ridiculous and darkly comical thing of my dad to say and still makes me smirk in a section that is otherwise incredibly sad.
For hours it looked like he was simply taking a nap. He snored. I sat on the floor holding his hand and rested my head on his upper arm. It wasn’t until around 8:30 p.m. that we felt his pulse finally give out. Strong heart. Strong guy. He would have liked that.
There were few instructions about what to do next—and no need, because it was an expected death, to call the police or an ambulance—so Réal, Alex, and I sat vigil for hours more until we felt ready to ask a funeral home to come to take the body. Can you explain why there was no need to call an ambulance? Originally I thought this was because the law doesn’t require you to call the police or an ambulance for an aid-in-dying death. Later, when I was reporting, an aid-in-dying advocate explained to me that it wasn’t a question of law, but it was because it was an “expected death:” He had a terminal illness and was on hospice and had a prescription for life-ending drugs. In other words, his death wasn’t a surprise, involving no reasonable expectation of foul play. We plowed through an entire box of tissues. Simon & Garfunkel crooned. It kind of looked like Dad was still napping, mouth agape, but also not at all. His skin had grown pale, his body cool. My brother kept saying it wasn’t him anymore. He wasn’t in there.
Although he was born and spent most of his life in Maine, my dad didn’t discover Deer Isle until the 1990s, when he was consulting on a rural health project nearby. He loved it more than any other place in the world. I loved it, too, from my first visit shortly after he bought his house in 2010. It was a shell back then, and Alex and I slept on a mattress on the floor.
My dad always gave me grief about not spending more time there, but he also understood that I had a life and career in New York and then California. After his death, Alex, Fern, and I stayed for six more months. We were working remotely, and Fern’s day care was closed anyway, so we took advantage of the silver lining. As the pandemic worsened, causing lonely deaths in chaotic hospitals with goodbyes and last rites delivered over FaceTime, we came to appreciate even more my dad’s peaceful, graceful, at-home exit.
Sometime during the first week of July, I passed by a framed photo on the living room bookshelf, probably taken in the late ’80s or early ’90s. In it, my dad is dressed in a blue-and-white-striped rugby jersey. His face is young, his wrinkles less deep. I’d walked by it hundreds of times, but it struck me this time. It was almost like I didn’t recognize him, as if he were a stranger. I started to panic. Was I forgetting him already? Moving on too quickly? To see him only in photos and no longer in person was becoming distressingly normal.
It was late, and I climbed into bed and picked up a book he’d left on his nightstand by the Marxist critic and artist John Berger. I’d left off the night before on page 15. On it was a poem called History, the introduction to which my dad had marked with a pen: “The dead are the imagination of the living. And for the dead, unlike the living, the circumference of the sphere is neither frontier nor barrier.”
The pulse of the deadI’d never really understood poetry. Pockets the thrush? Thrushes as in songbirds? I searched the internet and failed to find anything that shed light on what the poem meant and why it might have touched my dad.
as interminably
constant as the silence
which pockets the thrush.
The eyes of the dead
inscribed on our palms
as we walk on this earth
which pockets the thrush.
A few months later, I searched again and up popped an article about Berger on a British website called Culture Matters. It didn’t discuss that particular poem, but I emailed the site anyway.
“Yes well it’s a great little poem, no wonder your Dad liked it,” Mike Quille, the site’s editor, responded the next day. “And understanding it may help assuage your grief at his passing, as it is very much about life and death.” He continued on to explain how in this one, as with many of Berger’s poems, “death is seen and heard in the here-and-now, part of every life-cycle, whether animal or human. … Death and Life work together in Nature. … Earth is both the habitat and sustainer of the living, and the ‘pocketer’ and burial place of dead things. And that’s just what history is, a combination of life and death.”
I thanked him and told him a bit about my dad and the way he’d died. He wrote back once more. “Your Dad sounds like a man who appreciated life well enough to be able to handle death. Which is how you transcend its finality, I guess.” You could have ended earlier, but chose to extend the narrative with your life after your father’s death, meditations about the poem and your email correspondence with the poetry editor. Why? This last section was tacked on at the end of my first draft under the literal header: “if magazine stories had epilogues.” I didn’t know exactly what to do with it, but it was material that felt important and that I wanted my editor to know existed. He liked it, and wisely suggested it become the story’s last section. It just never felt right to think that the story would end with my dad’s last breaths. Many months had passed by the time I sat down to write, and I wanted to include observations I’d made and things I’d learned since. And that interaction with Mike Quille felt so wonderfully random and had brought me such peace that I wanted badly to share it.
Whether it was cleaning the kitchen or building a career, my dad had always told me: If you’re going to do something, do it right. And that independence was freedom, and free was the only way to live. His desire to die on his own terms made perfect sense given how he’d lived. He never hid from controversy. He embraced confrontation. You couldn’t talk the man out of anything: He was a my-way-or-the-highway type, confident in what he did and the way he did it, because it was the right way for him.
It turns out he was teaching me until the end. I couldn’t change my dad’s decision about how and when to die. Nor could I honor his right to be in control without surrendering my own. So I helped the man who’d brought me into this world to leave it. How and why did you decide to end on this note? I place a ton of importance on kickers. You have to reward the reader for getting all the way to the end. In “Out on the Wire: The Storytelling Secrets of the New Masters of Radio,” Jessica Abel explores the importance of articulating, at least to yourself, a really big idea – not just what the story is about and why it might be interesting to some people but the reason a story is interesting to everyone on the planet. Ultimately I decided the big idea, the underlying theme, of this whole story was control. And it felt right to end with what I learned about that — what my dad, and this whole experience, had taught me about control and the importance of surrendering it. Some of this language originally appeared at the end of the first section, but that always felt like it came too early, like it hadn’t yet been earned, because it took time for me to learn this lesson and I wanted the story to reflect that. As soon as I moved it to the end, it clicked.
***
Chip Scanlan was an award-winning newspaper reporter and taught writing at The Poynter Institute for several years. He lives and writes in St. Petersburg, Florida, publishes Chip’s Writing Lessons and a new book “Writers on Writing.”
