There’s no denying that caring for a dying loved one is a heart-wrenching experience. Through specialized quality care, however, patients and their families can continue to share meaningful moments, despite a terminal diagnosis.
Every year, hospices and palliative care centers across the nation unite to raise awareness of available options for end-of-life care. How does hospice and palliative care work? Hospice and palliative care maximize the quality of life of people with advanced or life-limiting illnesses through pain management, symptom control, psychosocial support and spiritual care, among other means.
What can you do to help?
Understanding what to expect and what you can do to increase a patient’s comfort level can help ease their suffering. Consider their unique physical, emotional and psychological needs.
• Re-adjust pillows beneath their head to help with labored breathing.
• Be calm and reassuring. Remind your loved one where they are and who is present. Seek help from a medical team if significant agitation occurs.
• Maintain a comfortable room temperature. Provide warm blankets in case of a chill or install a humidifier in a moisture-deprived room.
• Encourage your loved one to communicate unsaid thoughts. Ask open-ended questions about their beliefs or meaningful life moments.
• Seek clarity about the type of care your loved one wishes to receive, in case they can no longer speak for themselves.
• Invite family members and close friends to show their support and say their farewells.
Is someone close to you facing a serious or life-limiting illness? Visit www.nhpco.org for caregiver assistance and resources.
Patients who have low levels of health literacy are more likely to seek intensive curative treatment at the end-of-life, as opposed to choosing hospice care. In addition to disparities in hospice utilization associated with race or ethnicity, a patient’s understanding of their condition and the available treatments may also be a contributing factor, according to a recent study in the American Journal of Hospice & Palliative Medicine.
Health literacy is the degree to which individuals can obtain, process and understand basic health information and services needed to make appropriate health decisions, according to the Institute of Medicine. A health illiterate patient may have a strong overall ability to read or have an advanced education but have a limited understanding of information specific to health care.
“Medicare beneficiaries who resided in low health literacy areas were likely to receive aggressive end-of-life care,” the study indicated. “Tailored efforts to improve health literacy and facilitate patient-provider communications in low health literacy areas could reduce end-of-life care intensity.”
Patients who lack an understanding of health care information or terminology, do not understand their own illnesses, or who misconstrue the nature of hospice or palliative care may lack the necessary tools to make an informed decision about their end-of-life wishes
For the study, researchers conducted a retrospective analysis of nearly 650,000 Medicare fee-for-service decedents who died between July and Dec. 2011. They used a Health Literacy Data Map to calculate health literacy scores by ZIP code. For the purposes of this study, a score of 225 or lower was defined as low health literacy. Aggressive end-of-life care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last six months of life, and/or in-hospital death.
Close to 83% of decedents in low health literacy areas pursued aggressive end-of-life care, compared to about 73% in high health literacy ZIP codes. Patients in low health literacy areas were also much less likely to utilize hospice.
Low health literacy is very common in the United States, often impacting older adults. As many as one-third of Medicare enrollees have a low-level of health literacy, and research indicates that this increases across-the-board health care costs by as much as 5% annually.
“Elderly managed care enrollees may not have the literacy skills necessary to function adequately in the health care environment,” a Journal of the American Medical Association study found. “Low health literacy may impair elderly patients’ understanding of health messages and limit their ability to care for their medical problems.”
People spend their entire lives fighting back against death as part of the human condition. Some doctors may fear death, too, but physicians need to talk with patients about their end of life wishes especially during the pandemic, she says.
When patients come in for annual physicals, Dugdale asks if they want to talk about their end of life wishes — and most people say no.
“However, when we get talking, people realize that this is something important, that dying well is very much wrapped up in living well,” she says. “And in order to die well, we have to make some active decisions now while we’re healthy.”
Many people want someone to open the door to this conversation but don’t know how to start it themselves, she says.
The pandemic has raised concerns about ventilators and dying alone in the hospital. One of the biggest obstacles of this challenging time is providing dying people with community and family despite COVID-19 precautions, she says.
In her book, Dugdale shares some forgotten wisdom from the 14th century bubonic plague outbreak. Historians estimate that the “enormously devastating” outbreak killed as many as two-thirds of Western Europeans, she says.
In the 1300s, people approached the possibility of death in some eerily similar ways compared to today.
Some people decided to live large and indulge in hedonism without fretting over the looming possibility of disease and death. This group is comparable to travelers who faced criticism for going on spring break trips early on in the coronavirus pandemic, she says.
Others didn’t leave their house or engage with their community at all during the plague in hopes of earning “divine retribution,” she says. People didn’t know that bacteria caused the plague, but they understood venturing outside could result in getting sick. During the coronavirus pandemic, some people similarly haven’t left their houses at all or only a few times.
The final group of people tries to strike a balance between living life and recognizing the inevitability of death. These individuals continue to engage with society in a wise, prudent way to protect themselves and others, Dugdale says.
“Whether it is plague or pandemic or famine or war, we all are facing our mortality,” she says. “Death has been and always will be 100%.”
Here & Now host Tonya Mosley’s grandmother always taught her that death is a part of life. Dugdale writes that conversations around death should mirror the birds and the bees chat, but she sees generational differences around talking about death in her patients and family members.
Dugdale’s grandfather returned from fighting in World War II and immediately secured cemetery plots. He made ongoing jokes for years about his relationship with the undertaker and threatened to write people out of his will depending on matters such as getting a tattoo he didn’t like, she says.
“But this idea that we need to, just as a matter of practical import, get ready for death is something that really feels like we’ve lost in the younger generations,” she says.
Everyone has a role to play in talking about living and dying well, she says. One common misconception around talking about death is that the conversation should occur close to the end of someone’s life.
People need to prepare to die well when they’re still healthy, she says. For some people that means fulfilling medical wishes such as do-not-resuscitate orders or planning to die at home. If someone wants to die at home surrounded by loved ones, Dugdale says to question if they’re investing in those relationships now.
Death also brings questions about the meaning of life and what happens afterward. Trying to seek answers on your deathbed is difficult, so Dugdale advocates for taking some cues from the Middle Ages.
“We should do this work now,” she says. “And so even engaging these questions of living and dying well — about what life means in the context of our communities over the course of a lifetime — is the best way to work toward a good death.”
Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
Patients’ preferences around death should be respected when discussing palliative care options.
Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.
Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1
Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.
Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.
“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.
“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”
Why Dying at Home Can Lead to Improved End-of-Life Care
While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.
Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.
“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”
Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.
She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.
Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2
Reduced Cost of Care
Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3
“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.
Need for Patient Planning Around End-of-Life Care
Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”
For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.
“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.
What This Means For You
Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.
Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.
“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”
>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”
This is especially true for seniors with cognitive impairment, she says.
“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.
“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”
Deborah Carr, professor and chair of the sociology department at Boston University, has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life.
“When I started writing what I knew about things like pain and suffering at the end of life, it dawned on me that we need to interrogate: What is end of life?” Carr said. “We don’t actually have a clear definition.”
At the Gerontological Society of America’s annual scientific meeting last year, Carr proposed that “dying” or “end of life” should be considered a new life course stage. In an interview with Next Avenue, she discussed the merits of the idea.
Q: Why do you consider end of life its own life course stage?
Deborah Carr: The end-of-life period is longer than it ever was historically. A hundred years ago, people would die suddenly or shortly after becoming sick. Unfortunately, we are actually seeing an uptick of that short duration with COVID-19. But for most other leading causes of death among older adults — cancer, heart disease, chronic obstructive pulmonary disorder — there can be a very long time period between becoming sick and dying.
If we think about the end-of-life stage as something that we can have some agency over … it may demystify it.
As I started thinking about this expanded period, I realized that end of life is like any other life course stage. There are developmental tasks — things we should do — during this stage to ensure smooth transitions.
Just as we learn, as children, how to be a teenager and then how to be an adult, maybe we need to learn how to prepare for the end-of-life stage.
What are the other life course stages?
The main stages are infancy, childhood, adolescence, young adulthood, midlife and old age. Even though these stages make sense to us now, some of them are actually pretty new.
For example, the notion of adolescence didn’t even exist until the very early twentieth century because many would go from being children to adults before high school and college were widely attended, and when child labor was common.
Likewise, midlife, or middle age, is a pretty modern construction.
How does the end-of-life stage differ from old age?
I think it’s important that, culturally, we move away from the notion that old age equals death, because that is ageist.
Obviously, old age is among the most powerful risk factors for death, but about twenty-five percent of all people who die each year are under age sixty-five.
And many older adults are perfectly healthy; they aren’t in the end-of-life stage unless something happens like they get COVID and die a week later, for instance.
When does the end-of-life stage begin?
Some life-course stages have biological or legal markers. For example, adolescence generally correlates to puberty; in most states, people are legally considered adults at age eighteen; old age is typically thought to start at sixty-five when most people become eligible for Medicare and Social Security.
End of life is different in that the starting point is unclear. We can’t definitely state when the end-of-life stage starts, because illness trajectories are uncertain.
The important thing is that, once they start developing major chronic illnesses, people — whether they expect to continue living for one year or four years or ten years — should think about how they want to live during that stage of life. I’d encourage them to discuss the topic with family members, embrace it and take the steps that one needs to do in order to have that stage of life be as pain-free and peaceful as possible.
People could critique this idea on the grounds of ‘Well, how do you prove someone is in the end-of-life stage?’ I’m not out to prove anything, but just really to reshape our thinking of how we can prepare for, rather than avoid thinking about, the inevitable.
You mentioned ‘developmental tasks’ that need to occur at the end of life. What’s on the to-do list at this stage?
Just as you tell kids to eat their vegetables so they will be healthy as an adult, there are things that we can encourage people to do to prepare for the end of life.
Talk about what kind of funeral rites — if any — match your personal preferences. Talk to your loved ones about how they will survive financially without you. Encourage couples to have conversations about how the surviving spouse will manage finances and household tasks.
All of these preparations are things that I hope people are doing already. But often they don’t, because we as a society fear death. If we think about the end-of-life stage as something that we can have some agency over, something we can control to the best of our capacities, it may demystify it and really destigmatize it a bit.
Advance care planning is something that one should do early in life to help facilitate the transition to end of life. Have those conversations early and often because your preferences are likely to change over time.
Oftentimes, people do advance care planning too little, too late. For instance, when someone is given an opportunity to do a living will after they arrive at the hospital and is already dying or in severe discomfort, that’s not the optimal moment to do planning because the patient and family may be in distress.
So, we can think about advance care planning as something that we do earlier in life that helps to have a more satisfactory end-of-life period that accords with one’s wishes. It also can make the end-of-life period easier for loved ones.
It’s really hard emotionally to make a decision for someone else’s end-of-life care. It helps when people who are in that stage of life have already brought their family members on board and talked about what their preferences, values and fears are.
Not to trivialize, but in some ways it’s like those old anti-drug ads: “Just talk to your kids about drugs.’ Just talk to your loved ones about end of life because it will help you all prepare.
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.”
His body wrecked by ALS, my father insisted that his death, like his life, was his to control.
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.
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
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.