Terminally ill people should be offered choice on assisted dying, says doctors’ group

Clinicians tell committee procedure can be introduced in ‘safe and fair manner’

By Sorcha Pollak, Patsy McGarry

Irish society has a responsibility to offer the choice of medically assisted dying to those suffering with a terminal incurable illness, a network of 100 doctors has said.

In its submission to the Oireachtas justice committee which is considering Dying with Dignity Bill, the Irish Doctors supporting Medical Assistance in Dying (IDsMAiD) group writes that medically assisted dying can be introduced in a “safe and fair manner”. It argues that in cases of terminal illness, “patients deserve to have their choice respected”.

The Bill tabled by People Before Profit TD Gino Kenny, which seeks to legalise assisted dying, passed to committee stage last October after a vote in the Dáil.

Members of the Irish Palliative Medicine Consultants’ Association (IPMCA) have criticised the wording of the bill saying its definition of what constitutes a terminal illness is too broad.

IPMCA chair Dr Feargal Twomey said “the bill as it stands was very open to significant misuse and abuse”.

However, the IDsMAiD submission, signed by 100 doctors across Ireland, states the bill’s criteria for qualifying for assisted dying is appropriately “conservative and restrictive” and that the safeguards proposed are “conservative, balanced and fair”.

Comprehensive regulation, monitoring and reporting of assisted dying must take place if the Bill passes to ensure accountability, transparency and to foster trust in the public, says the group.

However, it argues that the “hypothetical fears” that such legislation would harm Irish society are “insufficient reason to condemn people with terminal illness to unnecessary suffering”.

While palliative care can control and alleviate the symptoms of many patients, it “cannot eliminate all pain and suffering for all patients”, states the submission. “MaiD should be seen as complementing palliative care rather than any attempt to diminish it,” it states.

The group supports the bill’s provisions which state that assisted dying would only apply to competent adults, residents in Ireland and people with a terminal illness that is “progressive and incurable”.

It notes that a person should not qualify for assisted dying on the basis of a mental illness alone and further research is required before this is considered. Legislators should follow Canada and Victoria in Australia by excluding mental illness as qualifying as a terminal illness to “eliminate any doubt or confusion on this issue”, it says.

Access to assisted dying for patients with advanced dementia remains an “evolving issue due to the need for advanced consent”, it adds.

Dr Brendan O’Shea, a Kildare GP who helped draft the submission, says assisted dying will never be relevant to most people who die in Ireland but that for a small number, it is a “vitally important” option. Dr O’Shea, assistant adjuvant professor in public health and primary care at Trinity College Dublin, said the Bill was currently “short on detail” but that he believes all missing elements would be drafted in as the legislation passes through the Oireachtas.

“We feel most strongly that details around regulation need to be discussed,” he said, adding that medical practitioners, scientific experts and the public should be consulted during the process.

Ireland should be guided by evidence from other countries who have had similar legislation in place for years, said Dr O’Shea. The Canadian model is “well-funded, well regulated and conservative in its approach” while the Dutch approach should also be carefully examined, he said.

Dr Brian Kennedy, who was also involved in the submission, says his views were shaped by his time working as a palliative care doctor. “For the vast majority it is enough and most people in most circumstances can reframe to coping with live with their illness. But there are circumstances the patient, family and healthcare workers have to deal with which are simply too terrible for all concerned.”

Dr Kennedy believes offering the choice of assisted dying to terminally ill patients would help with Irish people’s “death anxiety” and is about putting the patient “front and centre”.

In other submissions to the committee, both the Catholic Church and the Presbyterian Church in Ireland have come out strongly against measures in the Bill.

In its submission, the Catholic bishops said the Bill failed “to recognise the reality that many patients who request assisted suicide are depressed and “to require care givers to provide adequate palliative care for the terminally ill person.”

This meant “someone might decide to end his or her own life without ever having experienced what palliative care has to offer and, thus, making this decision without being fully aware of the other options available to them,” they said.

They found it “unsatisfactory” that the Bill “gives more weight to the irreversibility of the condition than to treatments which, even temporarily, relieve the symptoms. This leads to an unacceptably loose understanding of terminal illness.”

In their submission, the Presbyterian Church said the Bill would “leave vulnerable members of our society open to abuse, duress or the weight of a perceived expectation that they will relieve others of the burden of caring for them.”

Former moderator of the church Rev Dr Trevor Morrow, who had been minister at Lucan Presbyterian Church in Co Dublin for 31 years, said “our experience as pastors is that the components that contribute to a peaceful and dignified death are social, emotional, financial and spiritual. By focusing so restrictedly on the physical aspects of dying, this legislation fails to take account of these factors which can help to mitigate, or exacerbate, human suffering and distress”.

Complete Article HERE!

When dying is a feminist issue

— Report reveals why terminal illness, their own or loved ones, hits women hardest

by

Dignity In Dying Scotland will publish Dying In Scotland: A Feminist Issue tomorrow, outlining that current laws on assisted suicide are failing the female population.

At present, UK law does not allow people to choose their right to die. Those who wish to end their life are forced to travel to clinics such as Dignitas in Switzerland, where assisted dying is legal.

But research by the campaign group, which has long sought a change in the law to give terminally ill people the right to end their own lives, suggests the impact of current legislation on women is huge – and that the status quo should be challenged.

Dignity In Dying’s research involved speaking to women who had either been given a terminal diagnosis or who were caring for or had cared for a terminally ill loved one. And their tales of experience, worrying about how their lives will end or watching people they love suffer, highlights the need for change.

The group says 80% of women are in favour of changing current legislation.

Recent figures show that more than half of Scotland’s 759,000 adult carers are female.

Many have had to nurse relatives with terminal illnesses towards the end of their lives and spoke about the pain and suffering they witnessed, and how they wished there was something they could have done to end the suffering, or ensure a peaceful, dignified death.

The report also highlights that 82% of NHS nurses are female, meaning more women are exposed to the effects of lack of end-of-life choice.

And in Scotland, with women being paid on average 15% less per hour than men, access to a clinic such as Dignitas, which costs £10,000, is less viable for females.

The report says just 6% of the female population think the UK’s ban on assisted dying is working well – and that women need to be listened to, to bring Scotland into line with progressive countries around the world.

Ally Thomson, Dignity In Dying Scotland director, said: “Women have made their point clear – the law in Scotland is not working for them. They witness needless suffering at the end of life and are anxious about their own deaths given the lack of choice available to them in Scotland.

“They also overwhelmingly support a change in the law on assisted dying for terminally ill adults. We need to listen to women when they tell us that the current options available to people facing a bad death are not in any way suitable alternatives to safe and compassionate laws that allow people a dignified death.

“We know the lack of choice is forcing dying people to contemplate unimaginable, traumatic ways to end their life. At Dignity In Dying we have heard horrific stories about what dying people have had to resort to in order to end their pain and the impact this has on their loved ones.

“Our MSPs must see the ban on assisted dying does not work; it merely drives the practice overseas and underground with disastrous consequences for Scots families. There will be a new bill in the next session of the Scottish Parliament to introduce safe and compassionate assisted dying for terminally ill Scots.

“Assisted dying will be an issue in this year’s Holyrood election and we urge all candidates to listen and pledge their support to end needless suffering and give women the peace of mind they so desperately need.”

Norma Rivers, from Ayr, is terminally ill with myeloma and, while chemo is keeping her alive, she knows it’s only a matter of time before her health will decline.

Having lost her mum, dad, gran and brother to cancer, Norma hates to think of leaving her husband, daughter and grandchildren with bad memories of her death.

“I have seen it first hand. It was horrific,” said Norma, 68. “I wouldn’t wish it on anyone. I am not willing to let my family go through that. I can’t. There’s no debate there.”

Norma was diagnosed with blood cancer in 2016 when she fainted after giving blood.

“It came completely out of the blue,” she said. “I had been seeing the doctor because I felt exhausted all the time but because of my age, they kept checking for thyroid problems.”

The gran of three was eventually sent to hospital for further tests, and the next day she got a call from her GP to say she had blood cancer.

“The prognosis was five years,” said Norma. “They said it was terminal.”

The former airport VIP lounge host endured targeted chemotherapy, followed by a stem cell transplant in 2017. For 18 months she was free of cancer but in November 2019 the myeloma returned.

“Now I’m back on chemo and, while it is keeping my cancer at bay, my body isn’t tolerating it,” said Norma. “I’m scared now that I’m running out of options. When the time comes, if I could, I would go to Dignitas for help but if the only other option is to do it myself then I will. This is the only viable option for me.

“I come from a family that has experienced cancer and the end has been awful for most.

“None of them had a good death, but my dad’s was the worst. And that’s the image of him that sticks in my mind. If only he had the option to go peacefully. I can’t put my family through that.

“I fully support the Dignity in Dying campaign to have assisted dying made legal here.

“When someone is dying and they want to die with dignity, that is their choice. There should be no question about it.”

Dignity In Dying’s campaign has the backing of former Scottish Labour leader Kezia Dugdale.

She said: “Most will be familiar with the maxim that ‘The personal is political’. Often this is spoken about with regards to how we live, but rarely with regards to how we die. This report focuses on the voices of women, telling us how the current laws around dying affect them and why those laws need to change.

“We now know women’s experiences are too often dismissed and their wishes overlooked. We must examine how gender affects all elements of health – and this includes end-of-life care and choices.

“Change comes when the voices of people who live under the injustice of a bad law come together to expose its cruelty. This is the lesson we learn when we look back on the past – on women’s suffrage and civil rights, as well as recent reforms on equal marriage and reproductive rights.

“In Scotland, we have a system where healthcare professionals and parliamentarians hold the power over how women die. We accept as a society that some end-of-life practices are opaque – but this ultimately disempowers dying people and their families, and we must be bold in challenging the status quo.

“It takes movements of people to shift the power balance back to dying people and their loved ones. But the movement for the right to die with dignity is strong – rooted in compassion and empowerment, and I believe assisted dying will be Scotland’s next progressive reform. Scottish women want change, and Scottish parliamentarians have the responsibility to take action.

“I’d never thought about dying as a feminist issue, but after reading this report it’s clear to me that the law in Scotland is failing women.”

Complete Article HERE!

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!