How I Helped My Dad Die

His body wrecked by ALS, my father insisted that his death, like his life, was his to control.


Ron Deprez with his daughter, Esmé, and son, Réal, in Maine in the late 1980s.

By Esmé Deprez

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.

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.

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. He was staring down quadriplegia. Ronald David Deprez had had enough.

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.

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.

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. His life testified to the notion that if you work hard enough, you can do just about anything.

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.

He wasn’t going to beat ALS. No one does. But neither was he willing to let it beat him.

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.

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.

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. 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: Medicine and What Matters in the End, “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.”

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.

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. 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.

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. 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.

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.

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.”

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.

Aid-in-dying is legal in all or parts of nine countries, and a 10th, New Zealand, will make it legal in November. Belgium and the Netherlands take the most liberal approaches. There, assisted death is available to adults and minors faced with constant and unbearable suffering, be it physical or mental. 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.

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.

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.”

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.

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.) 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.

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. 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.

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.

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.”

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 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, 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. 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. 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.

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. 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.

relates to How I Helped My Dad Die
Ron Deprez smoking a cigar and drinking a dirty vodka martini after a hard day’s work, on his porch in Deer Isle, Maine, in 2016.

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 dead
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.

I’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.

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.”

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.

Complete Article HERE!

Discussing Death with Dignity

When both of my parents entered medical crisis in a short span of time around age 90, I realized that the end of their lives was in the foreseeable future. I had never envisioned what the end of life process would be like, but I knew that I would not allow them to suffer, and that I would protect their dignity. One of my greatest concerns was whether or not I could deliver their wishes for a dignified peaceful death.

I had heard of death with dignity, but honestly I did not know what it was. I had only heard what others said: that it offered a suicide pill, that it was risky to allow people to kill themselves, that there would be no regulation and that it would become too easy to access. I quickly realized that the words chosen were, at minimum, emotional and sometimes escalated to highly charged.

Curious, I attended a presentation a friend delivered for local college students studying geriatrics. I was stunned at what I learned about the medical aid in dying (MAID) program that she was spearheading. The program was not any of the things that I had heard. The guidelines were strict, the oversight even stricter and the eligibility criteria very specific and demanded proof of the patient’s mental capacity.

Most surprising to me was the fact that approximately 30 percent of patients never take the medication. They either die of natural causes before the medication has been delivered or before their planned administration date, or they change their minds as they didn’t experience the anticipated decline in the quality of their life and chose to die naturally. In essence, the program gave the patient control over their own end-of-life experience.

Then recently, I listened to Deborah Kan interview Kelly Bone, who has been diagnosed with early onset Alzheimer’s and who hopes to utilize the services provided by death with dignity, which is currently unavailable in the United States to those diagnosed with dementia. The interview illuminated the misunderstanding and inaccurate terms that surround the topic of death with dignity: euthanasia, assisted suicide and medical aid in dying.

Euthanasia is performed, and medication administered, by a trained professional with explicit consent and is illegal in most countries, including the United States. Assisted suicide is a process during which the patient plans for administering a medication to themself. Death with dignity, also referred to as medical aid in dying, allows terminally ill adults to request and, after being deemed qualified and mentally capable, receive a prescription for medication that they may choose to take to bring about a peaceful death.

Dr. Grube, National Medical Director for Compassion and Choices, wrote in a column titled, Ten Facts About Medical Aid in Dying, “Language matters: medical aid in dying should not be called ‘suicide,’ or ‘assisted suicide’.” He continued, “Legally, in all jurisdictions where medical aid in dying is authorized, ‘it is not suicide, homicide, euthanasia, or mercy killing’.’”

While those opposed to the service tend to define it based on who administers the life-ending medication, the medical community defines it on the characteristics of the people who take those actions.

In the Ten Facts article, David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who (die by suicide) resulting from mental illness from those of terminally ill persons who request medical aid in dying.

“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”

I wondered about the difference between suicide, the intentional taking of one’s own life usually as the result of mental illness and often with a feeling of hopelessness, and consciously choosing to end your life once certain criteria have been met, such as functional limitations, in order to preserve dignity during the end of life process. Medical aid in dying does not involve suicidal tendencies or the desire not to live. It cannot be executed spontaneously but instead requires due diligence by multiple medical practitioners, under strict legal purview, and the legal prescription of medication prepared by a licensed pharmacist. 

One is an event involving isolation, desperation and trauma, resulting in physical death. The other may be inclusive, allowing the patient to be surrounded by family and love, and is aimed at creating a peaceful transition at the end of life. The decision to suicide is final, while the decision to pursue medical aid in dying provides an option, not a mandate. Even after having received life-ending medication, the patient can change their mind if their personal criteria are unmet, such as declining physical or intellectual health that the patient perceives would cause a loss of dignity.

Because Bone is ineligible for death with dignity in the United States, she was asked whether she considered suicide as an alternative. She said, “To me, that is not dying with dignity. Going and doing it somewhere in my house all clandestine, not being able to say goodbye to my husband and leaving him with all that guilt, having him find the body and things like that, that to me is not a good way to go. It’s not fair to my family members.” 

To Bone, “dignified” is consciously making the decision and discussing it with her family members and doctors. During a personal call with Bone, she added: “I don’t want to suicide — I love my life!”

In the end, the option for medical aid in dying is all about dignity. Dignity is the state of being worthy of honor or respect. To provide dignity is a kind of grace, a kindness or mercy. When one wants to die with dignity, is it not really the grace and the mercy it offers that is sought?

I wasn’t interested in understanding the language surrounding death with dignity until I had taken the walk to the end of life with several loved ones, while fearing that I could not deliver the dignified death they desired. Understanding the words doesn’t mean that I have to like or dislike the option, only that I now have the clarity to make informed decisions that fit my beliefs. It grants me the compassion to accept the reasons why someone else might want to make that choice. I understand that all Kelly wants is to have the option for a peaceful end of life if her disease progression doesn’t allow for it. 

I think that everyone wants a peaceful end of life. I don’t know what decisions I will make when I am faced with my end of life, but I know that the end of life deserves the dignity, as well as the grace and mercy, that our culture so readily denies it.

Complete Article HERE!

Death by Appointment

What the reviewers said: ‘I found this book highly thought provoking, and would recommend it for all nurses, not just those working in palliative care’

By

‘Death by Appointment’ – a stark title for a book – but far from a work of fiction. The book, written by two experts in the field, informs the reader about the complexities of the ‘assisted dying’ debate, from a wide aspect – spanning from legal to medical, and a whole range in between.

This book does not pull any punches. Issues of ethics, morals, the psychosocial, the burden on both professionals and patients, and safety are dealt with head on and are highly thought provoking.

The facts are conveyed in a clear manner, inviting you to make your own measured conclusions. This would benefit an audience way beyond only health professionals.

What were the highlights?

As a starting point and to help dispel myths, it is very helpful to have clear explanations of the terminology of the law in the UK currently, and the definitions of physician-assisted suicide and physician-assisted euthanasia.

The referenced evidence from the global picture where laws in ‘assisted dying’ have changed, and the impact that will make on our decision making, result in powerful reading.

The clear, systematic description of the countries examined, the potential burden on doctors for decision making, and the dilemmas for caring professionals and for families informs the reader of the complexities of the topic. Reference to the role of nurse practitioners in decision making in Quebec sharply brings relevance to nurse readers.

The descriptive elements of the value of expert clinical palliative care were reassuring. The reminder of the recent valuable contribution of palliative care to those patients suffering with the effects of Covid-19 made this book highly topical and as well as relevant.

It was surprising – and concerning – to learn how changes in the current legislation may impact not only the terminally ill, but also those with chronic illness.

Strengths and Weaknesses?

A major strength of this book is the ongoing theme of the recognition of respect for the reader’s views.

With two authors of different but extensive experience in the ‘assisted dying’ debate, there is a good balance with alternatively written chapters, which successfully engages the reader to carry on reading. This also enables a widely based audience to learn, influence practice and make informed choices.

For example, there are references to previous evidence-based reports which ably and systematically outline the impact of the changes where the law relating to ‘assisted dying’, under certain jurisdiction, is permitted. Ripe with statistics, this can at times be overwhelming; nonetheless, revealing and surprising.

This is well balanced by the qualitative narrative which successfully probes beneath the surface, relating it to professional ‘hands on’ care in the UK.

Descriptions are given as to how co-ordinated interdisciplinary team work in palliative care can help to alleviate fear in the management of end of life. This makes for reassuring reading by someone who may not be aware of provisions that are already in place.

There can be no doubt that the marrying up of the authors’ chapters works well to convey a strong message of caution in any change in the current law. Their jointly written chapters summarise succinctly the complexities of the topic.

The impact of changes in the law elsewhere in the world and the potential additional burden on the patient in their decision making cannot be ignored.

The length of the book makes it imminently readable. The chapter headings make it a useful reference guide.

Who should read it?

This guide is a compelling read for a wide audience. The public, politicians and policy makers would benefit. It is certainly not confined to medical, nursing, social and health care professionals.

It is a welcome contribution to the debate. On a topic that ultimately is one of safeguarding for us all in the future, it cannot fail to be thought provoking.

Complete Article HERE!

Words Matter

— Discussing Death with Dignity

When both of my parents entered medical crisis in a short span of time around age 90, I realized that the end of their lives was in the foreseeable future. I had never envisioned what the end of life process would be like, but I knew that I would not allow them to suffer, and that I would protect their dignity. One of my greatest concerns was whether or not I could deliver their wishes for a dignified peaceful death. 

I had heard of death with dignity, but honestly I did not know what it was. I had only heard what others said: that it offered a suicide pill, that it was risky to allow people to kill themselves, that there would be no regulation and that it would become too easy to access. I quickly realized that the words chosen were, at minimum, emotional and sometimes escalated to highly charged.

Curious, I attended a presentation a friend delivered for local college students studying geriatrics. I was stunned at what I learned about the medical aid in dying (MAID) program that she was spearheading. The program was not any of the things that I had heard. The guidelines were strict, the oversight even stricter and the eligibility criteria very specific and demanded proof of the patient’s mental capacity.

Most surprising to me was the fact that approximately 30 percent of patients never take the medication. They either die of natural causes before the medication has been delivered or before their planned administration date, or they change their minds as they didn’t experience the anticipated decline in the quality of their life and chose to die naturally. In essence, the program gave the patient control over their own end-of-life experience.

Then recently, I listened to Deborah Kan interview Kelly Bone, who has been diagnosed with early onset Alzheimer’s and who hopes to utilize the services provided by death with dignity, which is currently unavailable in the United States to those diagnosed with dementia. The interview illuminated the misunderstanding and inaccurate terms that surround the topic of death with dignity: euthanasia, assisted suicide and medical aid in dying.

Euthanasia is performed, and medication administered, by a trained professional with explicit consent and is illegal in most countries, including the United States. Assisted suicide is a process during which the patient plans for administering a medication to themself. Death with dignity, also referred to as medical aid in dying, allows terminally ill adults to request and, after being deemed qualified and mentally capable, receive a prescription for medication that they may choose to take to bring about a peaceful death.

Dr. Grube, National Medical Director for Compassion and Choices, wrote in a column titled, Ten Facts About Medical Aid in Dying, “Language matters: medical aid in dying should not be called ‘suicide,’ or ‘assisted suicide’.” He continued, “Legally, in all jurisdictions where medical aid in dying is authorized, ‘it is not suicide, homicide, euthanasia, or mercy killing’.’”

While those opposed to the service tend to define it based on who administers the life-ending medication, the medical community defines it on the characteristics of the people who take those actions.

In the Ten Facts article, David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who (die by suicide) resulting from mental illness from those of terminally ill persons who request medical aid in dying.

“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”

I wondered about the difference between suicide, the intentional taking of one’s own life usually as the result of mental illness and often with a feeling of hopelessness, and consciously choosing to end your life once certain criteria have been met, such as functional limitations, in order to preserve dignity during the end of life process. Medical aid in dying does not involve suicidal tendencies or the desire not to live. It cannot be executed spontaneously but instead requires due diligence by multiple medical practitioners, under strict legal purview, and the legal prescription of medication prepared by a licensed pharmacist.

One is an event involving isolation, desperation and trauma, resulting in physical death. The other may be inclusive, allowing the patient to be surrounded by family and love, and is aimed at creating a peaceful transition at the end of life. The decision to suicide is final, while the decision to pursue medical aid in dying provides an option, not a mandate. Even after having received life-ending medication, the patient can change their mind if their personal criteria are unmet, such as declining physical or intellectual health that the patient perceives would cause a loss of dignity.

Because Bone is ineligible for death with dignity in the United States, she was asked whether she considered suicide as an alternative. She said, “To me, that is not dying with dignity. Going and doing it somewhere in my house all clandestine, not being able to say goodbye to my husband and leaving him with all that guilt, having him find the body and things like that, that to me is not a good way to go. It’s not fair to my family members.”

To Bone, “dignified” is consciously making the decision and discussing it with her family members and doctors. During a personal call with Bone, she added: “I don’t want to suicide — I love my life!”

In the end, the option for medical aid in dying is all about dignity. Dignity is the state of being worthy of honor or respect. To provide dignity is a kind of grace, a kindness or mercy. When one wants to die with dignity, is it not really the grace and the mercy it offers that is sought?

I wasn’t interested in understanding the language surrounding death with dignity until I had taken the walk to the end of life with several loved ones, while fearing that I could not deliver the dignified death they desired. Understanding the words doesn’t mean that I have to like or dislike the option, only that I now have the clarity to make informed decisions that fit my beliefs. It grants me the compassion to accept the reasons why someone else might want to make that choice. I understand that all Kelly wants is to have the option for a peaceful end of life if her disease progression doesn’t allow for it.

I think that everyone wants a peaceful end of life. I don’t know what decisions I will make when I am faced with my end of life, but I know that the end of life deserves the dignity, as well as the grace and mercy, that our culture so readily denies it.

Complete Article HERE!

‘I don’t want to compete with this disease’

— What physician-assisted death is like for a family

Margaret Handley wrote the essay so her children understood their grandmother’s experience and to help others learn about physician-assisted dying.

By Meghan Holohan

It started with weakness and pain when walking. Then Jacqueline Shapiro had a deep lesion on her leg before she broke it, oddly, and doctors struggled to set it. The pain medications caused her to have bad reactions and her energy waned. Eventually doctors learned that the 85-year-old had lymphoma. She underwent three grueling months of surgery, radiation and chemotherapy, but it only left her exhausted and feeling worse.

“It can cause delusions and a sort of psychosis. And it just was horrible, just horrible. And it was really hard for her to get her pain stabilized,” Margaret Handley, her daughter who is an epidemiologist living in the San Fransisco Bay area, told TODAY. “If you looked at those episodes medically, they were going well, but it was just part of an escalating discomfort for her. She increasingly felt like ‘I don’t think this is a good place for me to be.’”

Shapiro worried about spending the rest of her life undergoing painful treatments that might not even cure her cancer.

“She didn’t want to be lying there dwindling while people take care of her,” Handley said.

When a palliative care doctor visited Shapiro to discuss her pain, they started talking about California’s End of Life Act. People with terminal illnesses, who meet a certain criteria, can request drugs to aid dying, according to the California Department of Public Health. Similar legislation exists in eight other states. Compassion & Choices, a nonprofit working to improve patient rights and individual choice at the end of life, recently reported that Brittany Maynard’s advocacy of “death with dignity” inspired the passage of medical aid dying laws in Washington, D.C, Colorado, Hawaii, New Jersey and Maine.

Shapiro met those requirements. Hearing about the option of medically assisted death seemed to lessen her burden.

Handley shared more about her mother’s death in an article in the Annals of Family Medicine.

“She told me right away after the doctor left, ‘That’s what I’m going to do — physician-assisted dying. I don’t want to compete with this disease — that’s not what I want to do with the rest of my life,’” she wrote. “I sat with her and my sadness and then, over the next few days, we set upon the logistics to put her right-to-choose into motion.”

While her oncologist thought there was a possibility that the cancer could go into remission, Shapiro wasn’t sure if she could endure more treatment. Then she spoke with a doctor from the physician-assisted dying group, who described how the process works. He noted that many people request the drugs but don’t ultimately go through with it. Handley felt impressed by how all three doctors acted when advising her mother.

“I don’t think that (the doctors’ input) affected her decision,” Handley said. “But it was also much better that she heard them and witnessed them doing their work and felt like she was part of the narrative, not outside of it.”

Shapiro loved nature and the forest. As a young woman, she spent her summers at Yosemite and lived in the Sierra Nevada mountains until age made a remote living situation a little tougher. She had a garden with plants from the forest and an ornery cat name, Darcy, named after Mr. Darcy from “Pride and Prejudice.” While she was sick, she worried about his well-being. Making the decision for physician-assisted death put her mind at ease about what would happen to her pet, her plants and her life. This allowed Shapiro to say goodbye to her family the way she wanted, watching nature shows and cat videos, enjoying one another’s company.

“We were lucky to know it was coming and to be able to say let’s have these moments together,” Handley said.

Handley and her brother sat with their mother, with Darcy on her lap. As Handley read the poem, “Evening” by Rainer Maria Rilke, her mom passed away.

“It was a really powerful experience to be able to sit with someone who is making this choice,” Handley said. “That was a good experience for us to share.”

Handley said she wrote the essay because she felt there were so few personal stories about what physician-assisted death is really like. She also hoped that by sharing the experience her three children would also better understand her mom’s choice and experience.

“I wanted to write down what happened with my mom’s decision-making so that they would understand,” she said. “I thought this was just adding a little more real personal experience of what (physician-assisted death) looks like in one given situation.”

Complete Article HERE!

The “good death” revolution

—Companion animal euthanasia in the modern age

Home euthanasia sets a peaceful, more relaxed tone.

A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team

By Kathleen Cooney, DVM, CHPV, CCFP

Animal euthanasia has come a long way in the past 15 years. With the increased attention given to the human-animal bond, particularly during COVID; the emotional complexity of animals; and the recent and welcomed focus on veterinary wellness, the importance of a good death has risen to center stage. In forward-thinking veterinary practices, the euthanasia appointment is no longer an unpleasant burden in the day, but rather a rare gem of connectedness and intimacy so many of us look for in our professional lives. It provides teams the chance to slow down, to listen to stories, to take deep breaths in quiet reflection in an otherwise chaotic schedule. Euthanasia, while sad and heartbreaking, can lead to rich personal satisfaction when performed well. When love is at the heart of our work, the veterinary profession finds peace, even when life is lost.

Good euthanasia has evolved past the simple “one step” of giving an injection. It orbits around consistent components such as the right timing, compassionate staff, skillful techniques, and loved ones gathered close. The focus has been shifting to ensure the pet’s last moments are comfortable and peaceful, rather than just getting it over with as soon as possible—quality over quickness, in most cases. When it comes to euthanasia, if it’s worth doing, it’s worth doing right, especially since there are no do-overs.

To understand the scope of the “good death” revolution, we need to explore some key game-changing influences that have brought about the shift. The first worth mentioning is the attention paid by the American Veterinary Medical Association (AVMA) and other governing bodies to euthanasia techniques and animal welfare. Numerous revisions have been made to AVMA’s Guidelines for the Euthanasia of Animals, most recently in 2020. The document highlights the value and significance of proper technique choices and the ethical considerations we all must weigh, regardless of the species in question. Are they perfect? No, but they are extremely well-thought-out and closely match peer-reviewed literature. They will improve as research progresses and as society dictates.

A second influencer then has to be society’s demand on veterinary professionals to deliver a death worthy of the life itself. It is well understood pet owners largely view their animals as family members or loving companions. As evidenced further on in this article, loving pet owners regularly view the euthanasia appointment as a modest funeral. More and more are seeking those special touches that pay added respect for their companion.

As a home-euthanasia specialist, I’ve had many families over the years attend the euthanasia of their pet wearing suits and ties. Even though no one would see them, they dressed up to honor the life and the loss. Jessica Pierce, PhD, bioethicist and purveyor of the good death revolution, advocates for what she refers to as the sixth freedom: the freedom to die a good death. She adds this freedom to the already well-known five freedoms of animal welfare. “A good death is one that is free of unnecessary pain, suffering, and fear; it is peaceful; and it takes place in the presence of compassionate witnesses. It is, above all, a death that is allowed its full meaning.” The euthanasia of a family pet is significant and for many, will be their first experience with death.

A third major influence was/is the recognition by many in the veterinary profession that death needed to be more meaningful. The kind of experience we are talking about here is one that leaves the entire veterinary team feeling they provided the best medicine possible and supported the client throughout. Approximately 20 years ago, a small number of veterinarians and technicians throughout North America found just how enriching full devotion to the euthanasia experience can be. They shifted their appointments to focus on the bond as much as the act of euthanasia itself.

Early adopters had numerous things in common. They:

  • Took time to preplan and provide highly individualized care
  • Increased euthanasia appointment times
  • Offered home services
  • Provided sedation or anesthesia to all pet patients
  • Elevated bereavement support

In return for these specialty touches, clients showered them with thank you cards and told other pet owners about the wonderful care they had received. Through eventual collective sharing of their successes in advanced euthanasia work, other veterinary professionals joined in and the modern revolution began. Since 2011, at least seven books have been written focusing entirely on companion animal euthanasia (or contain chapters on the subject), more end-of-life care guidelines are available, and the number of pet bereavement organizations has skyrocketed. Today, there are more and more veterinarians specializing in euthanasia work, many of which offer animal hospice services as well. Animal hospice is a philosophy of care aimed at providing emotional and medical support for the dying pet and caregivers. As of early 2020, the International Association for Animal Hospice and Palliative Care (IAAHPC) touts more than 800 members, a number sure to grow in the coming years.

Have you ever thought about how much really goes into a euthanasia appointment? If you start to explore all the components of a good death experience, it’s no wonder euthanasia appointments are lengthening.

Here is a list of 14 essential components of companion animal euthanasia as developed by the Companion Animal Euthanasia Training Academy (CAETA).* Spelling out “good euthanasia,” each aspires to minimize stress for the pet, provide emotional support for the caregiver, and streamline the actions of the veterinary team.

G: Grief support materials provided
Examples: Printed pet loss guides, books, or direct links to online resources.

O: Outline caregiver and pet preferences
Examples: Talk about what’s important to the caregiver and pet. Match what they need.

O: Offer privacy before and after death
Examples: Make sure a family has time to be alone with their pet if requested.

D: Deliver proper technique
Examples: Always use the most efficient and appropriate technique based on the pet’s health and available supplies.

E: Establish rapport
Examples: Slow down and emotionally connect with the caregiver and pet before proceeding.

U: Use of pre-euthanasia sedation or anesthesia
Examples: Sleep before euthanasia reduces anxiety and pain, and increases technique options.

T: Thorough, complete consent
Examples: Every euthanasia must be properly documented in records.

H: Helpful and compassionate personnel   
Examples: Engage staff to assist who are naturally empathetic. The use of a “euthanasia attendant” is strongly encouraged (more about this later).

A: Adequate time
Examples: Slow down, block out enough time to complete all 14 components.

N: Narrate the process
Examples: Describe what each step of the process looks like, being mindful to keep language simple and uncomplicated.

A: Avoid pain and anxiety   
Examples: Be gentle when handling the pet, use sedation whenever possible, and go slow to reduce anxiety.

S: Safe space to gather   
Examples: Consider using a quiet room in the hospital or performing the euthanasia at home.

I: Inclusion of loved ones
Examples: Talk to caregivers about who should to be there, including other household pets bonded to the one being euthanized.

A: Assistance with body care   
Examples: Preplan with families around what’s important to them and carry out their wishes as if the pet were your own.

In addition to veterinarians carrying out the medical act of euthanasia, vital support staff help ensure everything goes well. Empathetic veterinary technicians, veterinary social workers, assistants, receptionists, and grief support personnel work together to ensure the pet is Fear Free and the client is carefully looked after. CAETA advocates for use of what it calls the euthanasia attendant. This person is responsible for guiding the family unit through the appointment from beginning to end. While many people may be involved in the pet’s care, one consistent person increases the likelihood that everything flows smoothly.

If you’ve been watching for change, you’re sure to have noticed the increase in specialty mobile euthanasia services around the world. According to online directory In Home Pet Euthanasia, nearly 600 mobile services have been listed since 2009 as providing home euthanasia services in Canada, the U.S., and England. Nearly 80 percent specialize in euthanasia work or the broader field of animal hospice, including euthanasia services. The shift toward home euthanasia is well-founded and necessary for many families. Pets feel safer at home. And for loving owners, being at home for their pet’s euthanasia provides them privacy and reduces the challenges of driving and interacting with others while in the midst of grief.

A good death is achieved by advocating for, and acting on, what is safest for the pet and what is most meaningful for the caregiver.

Home euthanasia has proven extremely rewarding work for those who offer it. It’s also gaining in popularity, with one service reporting its team of veterinarians assisted upward of 50,000 pets in the home setting in 2019. That’s an impressive number and indicates the trend of home euthanasia is here to stay.

Like any other progressive movement, advanced euthanasia did not happen overnight. And there are lingering obstacles that continue to stifle necessary change. Number one is the old paradigm that if it’s not broke, don’t fix it. It can be hard for veterinary teams to make lasting change around euthanasia. Reshaping a hospital’s culture takes time and commitment, but it can be done and done well.

Consider the following steps to create lasting change:

  • Dedicate one month a year to euthanasia-related discussions
  • Get everyone’s input on desired improvements
  • Create a euthanasia manual and refer to it regularly
  • Hold euthanasia rounds to review successes/challenges
  • Have multiple team members obtain advanced euthanasia training

These days, the veterinary profession recognizes the value of appropriate self-care. In this respect, self-care with regard to euthanasia begins long before the appointment. It is becoming standard practice to discuss a veterinary team member’s professional limits around euthanasia. North American Veterinary Community (NAVC) and the Human Animal Bond Research Institute (HABRI) human animal bond certification program focuses on this concept in its euthanasia module. It describes how veterinary teams should take time to determine who enjoys (yes, enjoys) euthanasia work, to write down how many euthanasias one can help in a day, week, etc., and how the team plans to practice self-care. Examples include team outings, fun food days, and setting limits on the amount of time worked in a day. The likelihood of compassion fatigue is high if care is not properly taken from the onset of euthanasia-related work.

As far as we’ve come, there is always room for growth. New techniques, improved euthanasia education opportunities, and better client support tools are on the horizon. We continue to hone our skills around gentle animal handling and pay increased attention to where we gather for euthanasia. This has never been truer than during the COVID pandemic. Veterinary teams have shifted the delivery of care, ensuring euthanasia remains an essential procedure. Creative approaches to preplanning, social distancing, technique selection, and appointment timing have played vital roles in protecting the human-animal bond. The veterinary profession dealt with these necessary modifications swiftly and compassionately. And it’s important to mention that while this article has been focused on euthanasia, death is a process, not always just a moment in time. Good death also refers to the meaningful journey leading up to death, be it natural or via active euthanasia. In the words of Benjamin Franklin, “Well done is better than well said.” To help the good death revolution flourish, we must act accordingly. A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team. If you haven’t already, how will you join the revolution?

Complete Article HERE!

The essential role of music therapy in medical assistance in dying

By Amy Clements-Cortés and Joyce Yip

In Western society, we spend a lot of time celebrating and welcoming new life, but very few cultures celebrate when a person dies. While death is not as taboo as 50 years ago, death is still a topic that many individuals are not comfortable speaking about in conversations. Even more off-limits, people are less likely to talk about physician-assisted suicide in their social circles. There are many reasons to this phenomenon such as religious beliefs, personal beliefs, and advocacy for life. In fact, an ethical challenge is the conundrum of ending a life, as these professionals strive to enhance the quality of life and cure or alleviate illness, rather than to end it.

What constitutes a good death? To answer this question, several common responses include: being surrounded by family and friends, avoiding the prolongation of death, not being in pain, and achieving control. But what happens to the patient when the suffering becomes too much? Who determines the suffering is great enough to warrant suicide? How does the medical community ensure an individual is cognizant of their choice to end their life? These questions can be considered in conversations about Medical Assistance in Dying.

Medical Assistance in Dying (MAiD), as;described by Noushon Farmanara, is a process that permits individuals with grievous and incurable physical or psychological suffering to voluntarily end their life in the presence of medical and health professionals. At present, MAiD is legally available in Europe, South America, Australia, and North America. Particularly in Canada, the passing of Bill C-14 on June 17, 2016 permitted MAiD as a legal procedure for Canadians who meet rigid requirements. Although Bill C-14 advocates the legalization of assisted suicide in Canada, there are ethical implications to consider in the perspective of the patients, the medical and healthcare professionals, as well as the community, who may be affected by the legislation.

Music therapy, an allied healthcare discipline that is growing in its awareness and significance in hospice and palliative care, is essential in helping patients explore the meaning of a good death as they move through their decline. Music therapists may be called to provide music and holistic care for the patients prior to MAiD, as it is a logical extension to include music therapists in the discussions and procedures of MAiD.

The clinical interventions facilitated by certified music therapists are spread across a continuum of passive to active interventions such as lyric discussion and analysis, songwriting, improvisation, guided imagery and music, and musical life review. The techniques that assist in the realization of patient-directed goals exist in spiritual, psychosocial, cognitive, emotional, and physical domains. As well, patients can create legacy songs to convey an important sentiment for their loved ones to cherish and listen to after their passing, such as “I love you.”

Music can also offer potential interventions which can keep a patient calm and relaxed at the time of injection. While Bill C-14 does not include music therapists as a valid healthcare professional in MAiD, having these holistic approaches can allow the patient to feel safe and celebrate their life. In fact, the absence of music therapy could increase the potential for harm as music therapy can contain and support emotions that might be very intense at this time.

A hypothetical case example followed a patient in a Canadian public-hospital who was considering live music by a music therapist during her MAiD procedure. As her physical symptoms worsened and despite the intake of medications, music therapy potentially offered healing and autonomy for her physical suffering in this difficult time. As music is non-invasive, it provides a creative outlet for patients to document their internal feelings, relationships, and stories prior to their death.

When integrating music therapy with MAiD, ethical considerations should be explored, such as recommended policies and guidelines that could promote music therapists as an essential to legalized death. As these professionals use music as a holistic intervention to clients, the facilitator may experience emotional hardship similar to the medical professionals in MAiD. This may result in immediate replacements and strain in the client-healthcare relationship. Further, limited resources are currently available to healthcare professionals to engage in circumstances around MAiD.

To provide these viable solutions, a team of music therapists and psychiatrists have written a set of clinical guidelines for music therapists to effectively engage with patients interested in MAiD. These guidelines explore the potential of music therapy in MAiD through an evidence-based methodology of qualitative studies and recommended practices that were designed to address the dynamic nature of Bill C-14 and the Code of Ethics of the Canadian Association of Music Therapists. This included suggested interventions and clinical goals for the patient, as well as supportive roles in the music therapy sessions. Further, annual hospital training and education for re-certification of any healthcare profession may be viable options to explore resources available for patients at their time of death.

Music therapy is a natural fit with MAiD as this healthcare discipline has demonstrated significant impact in work with the dying. In Canada, while Bill C-14 has provided patients with a degree of autonomy, it has created ethical concerns for the medical and healthcare professional and their community. To address these concerns, policies and guidelines have recommended music therapy as a crucial practice in the dying process and have provided viable solutions to combat these restrictions through empirical research. By continually creating resources about MAiD, the conversations about this topic will diminish its taboo and, ultimately, visualize death as a celebration of life and care.

Complete Article HERE!