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!

Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By Mikkael A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

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“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article HERE!

These conversations are among the hardest I have had as a doctor

Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

By Julia Corfield

It’s a cold Saturday morning in Melbourne and I am a doctor at work in a palliative care unit. I have just reviewed one of my patients, whose body is beginning to reveal some of the tell-tale signs of dying.

His son stands over him and sadly remarks that “this is a bad time to die”.

With strict visiting restrictions firmly in place across Melbourne, there is a very real chance that his father will die alone and he knows it. This is the new normal.

In a state of disaster, there are a set of rules and visiting restrictions for families and friends of those dying in a hospital setting. These restrictions vary slightly between health services, but the message is the same: as few visitors as possible, for as short a time period as is reasonable.

For months now, hospital staff (myself included) have been chanting the mantra of seemingly arbitrary visiting windows, maximum numbers of visitors per patient and numbers of visitors permitted at the bedside.

In recent times, I have found myself asking questions such as “do all six of your siblings need to visit?” or “could your grandchildren say their goodbyes via FaceTime?”. These conversations are among the hardest I have had as a doctor.

Many find these new rules unacceptable, and with good reason. Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

However, these are not normal times, and a balance must be struck between compassion and safety. Across the world, and now in Victoria, we know that many people with COVID-19 are dying alone; but so are those without COVID-19. Both are tragic realities.

Under normal circumstances, achieving “a good death” is laden with obstacles, let alone in a pandemic. An inherent challenge is that a good death is an individualised experience, reflecting the diversity of the human person.

There are some commonalities across what constitutes a good death, and the company of friends and family features almost universally.

A current patient comes to mind — a woman in her 70s dying of lung cancer — who tells me almost daily that her breathing is bad but the feeling of loneliness even worse. She would like to see her grandchildren, but no children are allowed in the hospital.

Her brother visits, but the allocated two-hour visiting window is not long enough to fill the void created when faced with one’s own mortality. And so on. Her story is not unique.

Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human. Death is normal, but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.

Ultimately, how we live and how we die tells us about society as a whole. Today, people die alone to protect society and this at least may be a small source of solace. Their strength and determination to push forward and adapt to this strange new world is a testament to the human spirit.

I hope, though, that those dying in this COVID-19 world know that their sacrifice has not gone unnoticed. Every day, their struggles are seen and felt. Many have had to forgo the so-called good death, and that is the undeniable truth.

Complete Article HERE!

Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

End-of-Life Experts Call for Expansion of Patient-Centered, Goal-Concordant Care

By Holly Vossel

A deadly worldwide pandemic has helped to expose pitfalls in a broken health care system, drawing increased awareness and attention around the delivery of serious illness and end-of-life care, according to hospice and palliative care experts speaking at End Well’s Take 10 virtual conference.

The virus has claimed more than 1.6 million lives globally since its onset, according to a recent World Health Organization report which stated that the United States continues to bear the brunt of the pandemic’s effects, accounting for 86% of new deaths worldwide in the last week alone. According to a number of health care stakeholders, the government and the health care system itself hasn’t sufficiently adapted to meet patients’ needs during the crisis.

“We’ve been putting our elderly and disabled in solitary confinement for months, and that was understandable during the first few weeks where we didn’t understand anything about the virus or how to keep people safe. We saw entire units where elderly people and disabled people died, but now we know how to keep people safe,” said Atul Gawande, M.D., a surgeon, writer and public health leader, at the End Well event. “I myself have family with serious health issues and they need long term care, but we’re told we have to sign away the possibility that we’d ever see them again, that we’d ever hug them again and that’s just unacceptable. They won’t provide the [personal protective equipment (PPE)] and the training to make such things as possible, and that is outrageous.”

Gawande is founder and chair of Ariadne Labs, a joint center for health systems innovation, and of Lifebox, a nonprofit organization aimed at making surgery safer globally. He is also co-founder of the Massachusetts Serious Illness Care Coalition and serves as board chairman of Haven Healthcare. Gawande is among the providers calling for fundamental changes to the health care system.

A key component of that change would be to promote end-of-life and goals-of-care conversations among patients and families. Gawande cited surveys conducted by the Massachusetts Serious Illness Care Coalition, an organization he founded, which indicated that only about 50% of people who have a serious health condition have discussed their wishes with their loved ones. Only 25% have had such conversations with their clinicians.

“When they have those conversations they’re not at all confident that those wishes will be followed. That should be an outrage,” Gawande said.

COVID-19 has disrupted the health care system as providers faced lack of protective resources, staffing issues and revenue losses. Hospices have been pummeled by the disease’s spread, taking hits to operations and finances and facing difficulty accessing facility- and community-based patients.

Some of the roadblocks to quality end-of-life and serious illness care often stem from social determinants of health, lack of awareness around hospice care, and racial divides in accessible care. While these issues are gradually coming to the forefront of discussions in the end-of-life space among clinical, business and policy leaders, stakeholders are renewing calls to accelerate a reorientation of the health care system towards patient-centered, goal-concordant care.

“We all deserve a system that we’re not just tolerating,” said Mark Ganz, president and CEO of Cambia Health Solutions at the End Well Take 10 event. “Let’s resolve as we accelerate out of this curve called 2020 that we take some of the difficult things we’ve seen and talked about and we turn it into a thing of light. We have the opportunity to invent the systems that allow us to truly see the patients and their loved ones in a new way. We need to act and act now.”

Complete Article HERE!

What you need to know if you or a loved one requires end-of-life care

By Ben Poston, Kim Christensen

Conceived as an end-of-life option for terminally ill patients, hospices provide palliative care, medications, nursing services and counseling for those diagnosed with six months or less to live.

The number of U.S. hospices has roughly doubled in the last 20 years, as more for-profit providers vie for a share of $19.2 billion a year in Medicare spending that covers hospice care. More than 1.5 million Medicare beneficiaries now receive care from some 5,000 hospices, nearly a quarter of them in California.

While hospice has been a godsend for millions of dying Americans and their families, a Times investigation found that intense competition for new patients has spurred billing fraud and other illegal practices, including falsified diagnoses and kickbacks to unscrupulous doctors and recruiters who target prospective patients at retirement homes and other venues.

The Times also found hundreds of instances in which California hospice patients were harmed, neglected or put at serious risk, their mistreatment sometimes exacerbated by serious gaps in government oversight.

What are the benefits of hospice care?

Hospice is intended to provide comforting, compassionate care and a range of support services for terminally ill patients and their families. In addition to nursing and medical care that includes pain management, prescription drugs and supplies, patients receive spiritual and emotional support, help with personal hygiene and respite care for family caregivers.

Most hospice patients receive care in their homes, including assisted-living settings and nursing facilities.

How do I choose a hospice?

There’s no set formula for choosing a hospice, although experts suggest discussing options with your personal physician and seeking recommendations from friends and relatives whose loved ones have had good experiences.

You should also interview any prospective hospice, asking questions about its licensing, which is required by the California Department of Public Health; whether it is certified by Medicare; when it was last inspected and whether violations were found; the range of available services; the makeup of the hospice care team and the roles of its doctors, nurses and others; and the role the hospice expects family members to play in a patient’s care plan.

Several industry and advocacy groups offer online guidance, including the National Hospice and Palliative Care Organization, which provides a worksheet and a list of questions.

How do I know if a hospice is reliable?

There is no one place where consumers can go to make a comprehensive comparison of local hospices — a gap that patient rights advocates have long criticized.

A variety of online sources provide information about hospice care, but each has limitations. Medicare’s hospice comparison site allows consumers to search for providers by ZIP Code or name, but has scant information about quality-of-care issues and inspections.

The California Department of Public Health has a searchable tool called Cal Health Find Database, which provides users with inspection reports when serious violations are uncovered back to 2017. It also allows consumers to compare quality metrics of up to three hospices at a time, but it doesn’t provide a rating system for providers. The results of inspections by accrediting agencies are not included on the site — a significant problem for consumers in California, where more than 80% of hospices contract with accrediting agencies rather than the state to conduct certification inspections once every three years.

Another resource that is more difficult to navigate is an interactive site maintained by the Centers for Medicare and Medicaid Services. The site includes copies of complaint investigations and a look-up function that allows users to compare the number of serious violations at hospices in California and other states.

What red flags should I look for?

Be on the lookout for any hospices that have been cited in recent years with serious violations. In the language used by Medicare, these include “condition-level” deficiencies or “immediate jeopardy” situations, which are considered the most severe. Also, hospices can be cited for failing to certify that patients are terminally ill, which is an indication of possible fraud.

If you have the name of a hospice administrator, which can be found on the state public health department’s website, you can find out if that person has been excluded from receiving federal healthcare payments on a site run by the U.S. Department of Health and Human Services’ Office of Inspector General.

If I’m not happy about my hospice, where do I complain?

If you can’t resolve your issues with the hospice, the California Department of Public Health investigates complaints, which can be filed online — but not necessarily with satisfying results.

You may also file a complaint about Medicare providers directly with the federal agency or with the California Senior Medicare Patrol, a federally funded statewide hotline to help Medicare beneficiaries prevent, detect and report fraud.