A fundamental principle of organ donation is the dead donor rule: donors must be dead prior to recovery of organs, and organ recovery must not be the cause of death. A lack of evidence about how long to wait before declaring death creates a tension: if doctors wait too long after the heart stops, the quality of organs begins to decline.
On the other hand, not waiting long enough introduces the risk of going ahead with organ recovery before death has actually occurred.
Our interdisciplinary team of doctors, bio-engineers and experienced clinical researchers has spent the past decade studying what happens when a person dies after their heart stops. We focused on patients in the intensive care unit who died after life support was withdrawn, since these patients may also be eligible for organ donation.
Our recent study, published in the New England Journal of Medicine, presents observations of the dying process of 631 patients across Canada, the Czech Republic and the Netherlands who died in an intensive care unit. All patients’ families consented to participate in the research.
In addition to collecting medical information about each patient, we built a computer program to capture and review heart rate, blood pressure, blood oxygenation level and respiratory patterns directly from bedside monitors. As a result, we were able to analyze end-of-life flatline patterns for 480 out of 631 patients — including looking at whether and when any circulation or heart activity returned after stopping for at least one minute.
As it turns out, the classic flatline of death is not so straightforward. We found that human heart activity often stops and restarts a number of times during a normal dying process.
Out of 480 “flatline” signals reviewed, we found a stop-and-start pattern in 67 (14 per cent). The longest that the heart stopped before restarting on its own was four minutes and 20 seconds. The longest time that heart activity continued after restarting was 27 minutes, but most restarts lasted just one to two seconds. None of the patients we observed survived or regained consciousness.
We also found it was common for the heart to continue to show electrical activity long after blood flow or pulse stopped. The human heart functions as a result of an electrical stimulation of nerves that causes the heart muscle to contract and contribute to blood flow — the pulse you can feel in your arteries and veins.
We found that the heart rate (electrical stimulation leading to movement of the heart muscle) and pulse (movement of blood in the veins) only stopped together in 19 per cent of patients. In some cases, electrical activity of the heart continued for over 30 minutes without resulting in any circulation of blood.
Why understanding death matters
The results of our study are important for a few reasons.
First, the observation that stops and restarts of heart activity and circulation are often part of the natural process of dying will be reassuring to doctors, nurses and family members at the bedside. Intermittent signals on bedside monitors can sometimes be alarming if observers interpret them as signs that life is unexpectedly returning. Our study provides evidence that stops and starts are to be expected during a normal dying process without CPR, and that they do not lead to regained consciousness or survival.
Our results will be used to better inform policy and guidelines for the practice of organ donation internationally. For donation systems to work, when someone is declared dead, there must be trust that the declaration is really true. Trust allows families to choose donation in a time of grief and allows the medical community to ensure safe and consistent end of life care.
This study is also important for improving our broader understanding of the natural history of death. We have shown that figuring out when dead is really dead is perhaps not so simple. It requires careful observation and close physiologic monitoring of the patient. In addition, it requires an understanding that, just as in life, there are many patterns that the dying process can take.
Our work is a step towards appreciating the complexity of dying and suggests we must move beyond the idea of a straightforward flatline to indicate when death has occurred.
On a plane tree-lined shopping street in Berlin’s fashionable Gräfekiez neighbourhood, two children are glued to the front of a brightly lit ground-floor office space, decorated with the understated minimalism of a design agency.
The object of their curiosity is a Lego window display, showing a miniature cemetery and a coffin carried by four tiny pallbearers, complete with black top hats.
“I love this”, says their mother as Birgit Scheffler, the co-owner of funeral home Das Fährhaus (The Ferry House), steps out of building’s front door. “It would be nice if death becomes less of a taboo for my kids’ generation than it was for my own.”
Das Fährhaus’ inviting exterior is a deliberate contrast to traditional funeral parlours, who usually have “blacked out windows or drawn blinds, and maybe a dead fly lying on the window sill”, as Scheffler put it.
Specialising in alternative or bespoke funerals, her undertaker’s business is one of several ventures that are currently brightening up a German way of death that used to be considered one of the gloomiest, most ritualised and rigidly regulated in Europe.
“In postwar Germany, our grief culture was shaped by the legacy of the two wars”, said Scheffler, 43, who used to work in marketing and distribution for a media company before retraining in 2017. “In a culture that was focused on building something new from the ruins, death was pushed aside.”
The psychoanalyst couple Margarete and Alexander Mitscherlich famously diagnosed Germany with an “inability to mourn”, a phrase that was amplified by the 1968 student movement and has since echoed through the country’s postwar history.
Coronavirus, however, is proving a catalyst for a new way of talking about mortality. “Death is suddenly at the centre of our lives”, Scheffler said. “The first thing many of us do when we wake up is look at the number of people who have died in the last 24 hours.”
A national conversation about dying has captured the radio waves and television screens. In My Perfect Funeral, a critically acclaimed new series for radio broadcaster Deutschlandfunk, interviewees describe how they want to be put six feet under.
Netflix’s recent The Last Word, meanwhile, stars German comedy star Anke Engelke as a widow who reinvents herself as a eulogy speaker. “There is no wrong way to mourn”, says Engelke’s voiceover in the concluding episode. “Death is only terrible if you take it seriously.”
Scheffler and her co-owner Sahra Ratgeber opened Das Fährhaus in August, at a time when neighbouring shops were struggling with social distancing requirements and losses incurred during the spring lockdown.
New hygiene rules have also proved a burden for undertakers, limiting the number of people allowed to attend funerals and requiring embalmers to wear additional PPE. Open-casket funerals have been banned; the bodies of those who have died of or with Covid-19 are buried in body bags.
Yet among bereaved families the lockdown has inspired creative new ways to send off the departed. This year, Das Fährhaus has organised a funeral in which mourners were allocated time slots to adorn the grave with painted stones rather than the conventional flowers. At another, family and friends dropped chocolate bars rather than sand onto the coffin of a deceased chocaholic.
Her business offers mourners the opportunity to build their own coffin or work with a ceramicist to make a bespoke urn. “The more elements of the funeral relatives or friends can create themselves, the better.”
Increasingly, she said, people were getting in touch to put down specific instructions for their own funeral in writing: one woman dreamt of being buried in her wedding dress, a composer wanted to make sure some of her works were burned alongside her.
A heightened sense of one’s own perceived uniqueness may be associated with the much-derided “snowflake generation” of the 2010s, but Scheffler said she has noticed a change across all ages. “Even people in their 70s and 80s are becoming more creative.”
Outside the German capital, with its high tolerance threshold for alternative lifestyles, more traditional last rites still prevail, said Louise Brown, who presents the My Perfect Funeral podcast. A Hamburg-based journalist for print and radio, Brown has since 2015 also worked as a Trauerrednerin, a freelance “mourning speaker” for those who don’t want a eulogy to be spoken by the clergy.
While the tradition of such “free speakers” goes back to the free religious movement of the 19th century, other aspects of the typical German funeral remain unusually heavily steeped in tradition. The country is one of the few in the world where coffins or urns must be buried in a cemetery, the so-called Friedhofszwang, and where scattering the ashes of the cremated or dividing them between family members is banned.
“Most Germans still have a small-c conservative attitude to death”, said Brown, 45, a dual British-German citizen. “The organ music at the start of the funeral, the church bells on the walk to the grave: to many people these rituals still matter”.
What was changing, she said, was the bandwidth of what could be said in a eulogy: “People want more personalised speeches, and they no longer want me to skirt around the conflicts and the difficult phases in a person’s life.”
Interviewing family and friends in preparation for her speeches, said Brown, was like leafing through a photo album: “Often the funniest, most honest and authentic pictures are filed loosely near the back pages. The pictures that were taken on the fringes of the official photo session on a holiday, after an award ceremony or a 50th birthday. The pictures no one tried to pose for, the ones we thought were too blurry or out of focus. In a funeral speech, these are often the images that the bereaved most identify with.”
The pandemic has also constrained the jobs of mourning speakers, forbidding not only communal singing but also the customary post-funeral meet-up over coffee, which Brown says can be more important than the funeral itself.
“After the body has been laid to rest, there is usually a moment where the bereaved are both still very vulnerable and very open with each other. The intimacy of these gatherings isn’t something that you can recreate in a Zoom call.”
In times of Covid-19 families are increasingly opting for cremations, in the hope they can postpone the communal get-together until after the pandemic is over (urns, unlike coffins, can be put into storage for up to six weeks): according to Germany’s national association of undertaker’s, cremations now make up 70% of all funerals.
But even before Germany’s severe second wave and the ensuing Christmas lockdown squashed hopes of get-togethers in the near future, many had started looking for alternative new rituals. Graphic artist Anemone Zeim started her “remembrance workshop” Vergiss Mein Nie (Forget Me Never) seven years ago, helping bereaved people to come up with creative projects that conserve memories of their lost ones: films cut together from old Super 8 footage, scarves recycled from a late grandmother’s favourite jumper, or lampshades patterned with a deceased friend’s handwriting.
“You can’t solve your grief with a checklist”, said Zeim. “You need to get creative to find individual solutions. You need to use your hands to stop you getting trapped in your brain. That’s what we help with.”
In recent months, requests for her agency’s services have doubled, with emails flooding in not just from the Hamburg area where her business is based, but from across Germany, Austria and Switzerland.
So-called “grieving tools” sold via Forget Me Never’s website, such as funeral cards, an “anger capsule” for writing down unresolved feelings towards the deceased, or “flower tears” containing bulbs and a clump of soil, have been in high demand.
“We’ve been working flat out”, said Zeim, “not necessarily because more people have died because of coronavirus but because people who have suffered a loss have been shacked up in their own four walls. There are advantages to that too: you don’t have to deal with the social stigma of grieving in public. But the danger is that you can become wrapped up in your sorrow.”
Zeim said she expected demand to keep on rising in the new year. “The process of mourning can take months or years, and not just individuals can mourn, but societies too. We as a society are already grieving for the toll that this pandemic has taken of us. We just haven’t realised yet.”
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.
Amid COVID-19 losses, death cafés provide supportive settings for discussions about mortality
by Robin L. Flanigan
Death has never been easy to talk about in our culture, but COVID-19 has thrust the taboo subject into the spotlight.
And some groups, called death cafés, are making it less fraught to discuss topics around dying, including fears, spirituality and ethics. With more than 400,000 Americans dead from the coronavirus, mortality is something that is on many people’s minds — whether they’re having a direct experience with it or not.
With tea and cake or other treats, death cafés — in 73 countries and now mostly virtual — are open to anyone interested in delving into the issue of mortality. With no agendas, only unstructured conversation, their objective is to increase awareness of death in a supportive way while helping people make the most of their lives.
Find a Local Death Café
These nonprofits are established to help people talk about death and dying in a supportive, unstructured way (typically, in person, but during COVID-19, most gatherings are being held virtually). The goal, according to the organization’s website is to “increase awareness of death with a view to helping people make the most of their (finite) lives.” Death cafés have been held in 75 countries, and people are encouraged to start their own, based on these guidelines. To find one near you, visit the organization’s website and use its locator tool.
“The need for talking about death is not greater because of COVID, because death is something that has always been natural and true,” says Viviana Rose, 54, of Austin, Texas. “But our awareness level, because of the situation, is more acute.”
Rose learned of the cafés years ago, in an article about one in Thailand, and thought they were “tailor-made” for her. Raised in a fundamentalist church, “whose ideology,” she says, “rendered me extremely afraid of death at almost pathological levels,” she found a café near her home (then in upstate New York) and has been attending one ever since.
These groups help participants address the fear of death, “not in the pursuit of a cure,” Rose explains, “but in pursuit of growth — in our ability and maturity to grapple with this reality. This is not something we can eradicate or escape. In the cafés we help one another learn how to handle this better.”
A healthy way to talk about death
Death and grieving expert David Kessler, author of Finding Meaning: The Sixth Stage of Grief, has been immersed in conversations about the subject for decades. He has written many books, two of them cowritten with the late Elisabeth Kübler-Ross, one of the world’s foremost authorities on the psychology of dying.
“The fear of death is our primal fear, and COVID goes to our primal fear,” Kessler says.
That fear spawned a field of study called thanatology, which examines death and dying from multiple perspectives, including medical, physical, psychological, spiritual and ethical.
Kessler was in the middle of a 30-city book tour last spring when stay-at-home orders sent him back to Los Angeles, where he started a Facebook group for people to talk about COVID-19 and death (find the link at grief.com). A thousand people joined the group the first day. Thousands more have joined since.
A safe place to discuss mortality
Death café participant Elizabeth Osta, of Fairport, New York, has no problem talking about dying, which she does frequently as a board member of the Funeral Consumers Alliance of Greater Rochester. But when the 75-year-old had cancer, she got used to people feeling uncomfortable when she mentioned her diagnosis. Afraid to think about the worst-case scenario, they often quickly changed the subject, she recalls.
Osta has seen people react similarly about the pandemic. As soon as she heard about death cafés, she thought they were exactly what the world needs. “Death cafés, especially in these times, are places to go and say, ‘Oh, my God’ and not have this tremendously distant response. Instead you get an empathic and understanding response.”
For Roger Kligler, a 68-year-old doctor from Falmouth, Massachusetts, they are a chance to be with people willing to discuss our impermanence, as well as an opportunity to participate in the growing death-positive movement, which rebrands the concept of dying to make it more acceptable to talk about and embrace.
Kligler even facilitates meetings. He says he has “outlived my life expectancy” by being treated for 18 years for metastatic prostate cancer and appreciates the ability to swap ideas about how to make good decisions and minimize suffering.
Meaningful questions always arise, he says: “You’re not going to live forever, so what do you value in life? What is important for you to do?”
When we talk openly about our modern struggles, “there’s something freeing about it — sort of like the bars that were holding us in suddenly dissolve,” Kessler explains.
In fact, death cafés are like any other support group in that they help manage distress and improve coping skills.
“We go to these places not just to hear one another but to hear our true selves speak, to have an interaction between the mind and the heart,” Rose says. “That’s a good, good thing to bring to the table.”
How can you comprehend the incomprehensible? I’ve spent much of this week wondering. I understand the horror of the daily death toll but I cannot feel it. I read the words “the United Kingdom is one of the coronavirus death capitals of the world” and nothing happens. Last year, I cried more than once during the daily briefing which used to punctuate my day. Not for myself but for everyone who had lost their life, for everyone who had lost someone they loved. I was actively grieving for others and for something more nebulous: the time lost to the pandemic, the plans rescheduled, the hopes forcibly realigned. I know that I am at once still angry (with our politicians, mainly) and in mourning (for everything) but I am not actively experiencing either emotion.
Last Wednesday, 1,820 people died because of COVID-19. On Thursday it was 1,290. To put that in perspective, around 1,500 people died on the RMS Titanic, a disaster around which our collective psyche has calcified. In two days we saw almost double that. The most commonly flown plane by easyJet is the Airbus A320CEO. These seat between 180 and 186 people at a time. So, on Wednesday, the number of people who were recorded in the daily death toll was equivalent to 10 of those planes falling out of the sky at once.
We had hoped that things would be better by now, even when experts warned us they would not be. It was too much to bear to think they might stay the same but unconscionable that they would get worse. Even if we knew, on some level, that it might happen, we tried not to entertain the possibility.
How could we, when what we are living through barely fits inside our brains, let alone can be broken down, digested and converted into thoughts so that it can be understood. Until Thursday, according to analysis by Oxford University, the UK had the highest per-person daily death toll of any country in the world. Yes, that’s right – it was around twice that of the United States, a country which is roughly 40 times bigger
As the reality of the third national lockdown sinks in, I’m aware of how much smaller my world has become. I move between my desk, my hob, my fridge, my bathroom and my bed. I don’t even go out on the balcony right now because it’s too cold. Yet I’m constantly aware of how big everything that’s happening to our world is. I worry about friends and family. I worry about NHS staff. I worry about the economy. But I do not feel anxiety or anguish like I did during the first lockdown.
The most commonly flown plane by easyJet is the Airbus A320CEO. These seat between 180 and 186 people at a time. So, on Wednesday, the number of people who were recorded in the daily death toll was equivalent to 10 of those planes falling out of the sky at once.
Why? I am stupidly fortunate in so many ways but it’s not like I haven’t experienced this virus at close quarters. I’ve had it twice. And while I was not hospitalised, the second time was particularly bad. It took six weeks to properly recover from and, in the fifth week, I “turned green” and nearly fainted on a short walk. Some days all I can taste is metal. I have aches that make no sense. I know people who have been hospitalised and, in the last two weeks, I know three people who have lost loved ones.
Yet I cannot locate my feelings; I can no longer be certain how any of this is affecting me, what I am able or afraid to feel. I go outside, it feels better. I notice my body rearrange itself. I open up but I still feel…a bit numb.
Perhaps it’s not surprising. It’s not unusual for people who are grieving to experience emotional numbness. On some level right now, we are all grieving for someone or something. David Kessler, the world’s foremost expert on grief, called this very early on in March last year. He explained that, regardless of whether we had been personally affected by the pandemic yet, we were experiencing “collective grief” and “anticipatory grief”. He also noted how unusual it was. “I don’t think we’ve collectively lost our sense of general safety like this,” he said. “Individually or as smaller groups, people have felt this. But all together, this is new. We are grieving on a micro and a macro level.”
That may all be true but should I be worried that I can’t feel? Or should I embrace it as part of the ongoing task of processing the pandemic? I’m hardly alone in finding this lockdown harder to navigate than the others. Last week Ipsos Mori released a survey of 2,000 adults, of which 43% said they were finding things harder right now, with just 10% saying they were finding it easier.
When we haven’t got enough energy left to process what’s going on around us, we push it down to a subconscious level.
— Linda Blair
Clinical psychologist and author of The Key To Calm, Linda Blair, says that feeling numb is actually self-protective. It’s a coping mechanism. “When we haven’t got enough energy left to process what’s going on around us, we push it down to a subconscious level,” she explains. “The body and mind’s first command is to stay alive. You have to remain alert to the dangers around you but you will push down the actual extent of that danger.”
However, Linda notes that while this is very common “at the beginning of a disaster” or immediately in the aftermath of the death of a loved one, “none of us have known a disaster that’s gone on this long. So we keep cycling into numbness which is not normal.”
None of this is to say that numbing out is necessarily bad. “You really have to respect yourself,” Linda explains. “Your instinct knows what you need and if you need to dial down your feelings in order to go about your daily activities right now, then that is what you should do. Yes, it will hit us later. But everyone’s grieving process will be different and it may be that we have to overcome the public health crisis before we can truly process what it means.”
Almost a year into the pandemic and we hear very few cries from people who want things to “go back to normal”. We know now, beyond any doubt, that everything has changed and that the point at which it changed is now an entire trip around the sun behind us.
He notes that “epidemic diseases reach into the deepest levels of the human psyche. They pose the ultimate questions about death, about mortality: What is life for? What is our relationship with God? If we have an all-powerful, omniscient, and benign force, how do we reconcile that force with these epidemics that sweep away children in extraordinary numbers?” These are huge questions, all of which are being asked daily as we try to grapple with what’s going on around us.
So as we buffer collectively, perhaps it’s okay that everything that has happened during the last 12 months is taking a while to sink in, just as everything we must prepare for in the future feels impossible to get to grips with. Perhaps it’s okay that we need to conserve our energy to get through the day, rather than exerting it all in anger at the home secretary as she says we should have shut our borders at the start of the pandemic. Perhaps it’s okay to feel a little bit desensitised to it all if it means you can get through the day because, even with the hope brought by vaccines on the horizon, we are still very much in this.
My husband and I were talking about experiences we have missed out on during the pandemic, such as having hospital visitors when our second son was born, when I surprised us both by bursting into tears. Once I started crying, I couldn’t stop. I sobbed and heaved for at least 20 minutes, as built-up stress and grief flooded out of me. Afterward, I felt a sense of peace, as if some of the weight of this pandemic had been eased — at least in the moments and days that followed.
Many of us have suffered over the past year, in ways both large and small. We’re more isolated than ever, while also taking on new responsibilities, such as remote schooling or working from home without child care. We may be grieving a death or mourning the postponement of a wedding. During these extraordinary times, stress and sadness can accumulate within us, especially if we suppress our negative feelings.
After my sobbing session, I wondered: Could crying be a way to help us cope and release some of that stress? And if so, is it a good idea to make ourselves cry?
The truth about emotional crying
There are three types of tears: basal tears, reflexive tears and psychic tears. Basal tears and reflexive tears keep your eyes healthy by lubricating them and ridding them of harmful irritants, respectively. The tears from crying are psychic tears, which Gauri Khurana, a child, adolescent and adult psychiatrist in New York, defines as “tears that are expelled during an emotional state.”
Certain theories about emotional tears have existed for centuries, such as the popular beliefs that crying removes toxins from the body and always leads to a feeling of catharsis, or emotional release, says Lauren Bylsma, an assistant professor of psychiatry and psychology at the University of Pittsburgh whose research has a focus on crying and emotional functioning. But research about crying is limited, she says, partly due to the difficulty of mimicking emotional situations in a lab and the ethical concerns of studying crying in more natural situations.
Thus far, the idea that crying provides a physical detox or flushes toxins out of the body isn’t backed by solid evidence, Bylsma says. And although catharsis can sometimes occur with crying, it doesn’t necessarily happen all the time.
“It seems that crying occurs just . . . after the peak of the emotional experience, and crying is associated with this return to homeostasis,” she says. “Crying might help aid that stress recovery process, but it may be that it’s only under certain circumstances, depending on the context in which the person cries.” There are other, more important factors that play a role in how people feel after crying, she adds, such as the social support they receive.
Another popular theory about emotional crying that has not been proved by research is that holding back your tears, or not crying despite experiencing grief, is unhealthy.
There is some preliminary evidence suggesting that when people “deliberately suppress their tears and hold it in, that there can be some negative effects of that, both psychologically and potentially physically,” Bylsma says. You might experience a headache by holding in stress, or you might feel less connected with others if you don’t share your needs.
Furthermore, “emotional restraint with suffering can then also translate into emotional restraint with joy and happiness,” says Jennifer Henry, director of the Counseling Center at Maryville University, because being able to cry is a way to acknowledge your feelings.
But Bylsma adds that it’s important to understand that there are significant differences in people’s tendencies to cry. You “might not have the urge to cry, and that’s not necessarily unhealthy,” she says. Nor is it necessarily harmful to suppress crying when it might have unwelcome consequences, such as “if you’re crying at work and it impacts your work performance or it’s an inappropriate situation.”
How and when crying is most beneficial
There’s a lot of variability in how you might experience benefits from crying, Bylsma says, but one key factor is social context: You’re more likely to experience benefits if you cry around supportive individuals.
“Crying and opening up really is a social cue to show vulnerability and to show that something’s not right in a way that can’t be expressed with words,” Khurana says. Crying tells others and ourselves that we might need help or that we might be overwhelmed — feelings that are all too common during this pandemic.
The amount of social connection and support fostered through crying varies by culture and who you cry around, Henry says. For example, crying in front of your best friend might evoke more comfort than crying around a co-worker. But the “social bonding, the eliciting support and connection” of crying is powerful, Henry says.
Whether you cry with someone else or by yourself, shedding tears can also help you “confront the things that are bothering you and face them and emotionally process them,” Bylsma says. “You might reach a new cognitive understanding . . . by spending that time focusing on it, because crying is something that’s very attention-getting for the individual and for others around you.”
>In this way, crying can act as a signal “to stop and take care of ourselves and to address that emotion” by dealing with underlying issues or stressors, says Roseann Capanna-Hodge, a Connecticut-based psychologist and integrative mental health expert.
Beyond receiving support from others and gaining a deeper understanding of what may be troubling you, crying is also a form of expression. “Emotional expression is healthy in general and something that we want to encourage to help people cope with the feelings they’re dealing with,” Bylsma says.
Should you make yourself cry?
Because crying can elicit some social and emotional benefits, is it healthy to make yourself cry? It’s not a one-size-fits-all solution, Bylsma says.
“It depends on how you’re making yourself cry and what your purpose is in doing it,” Henry adds. “If you feel like there’s unresolved sadness or something that you really, really need to get out,” she says, there could be some value in “trying to tap into the emotion that might create the crying.”
But Bylsma says you shouldn’t be concerned if you can’t cry, especially now. Some people may experience a “traumatic chronic stress reaction, where they might be feeling numbness” and have trouble being in touch with their emotions because of everything going on, she says.
Rather than forcing yourself to cry out of the blue, each of the experts recommends allowing yourself to cry — and even eliciting a crying session — if you feel stress or emotion building up. “If a person feels the urge to cry, and feels they need to get out their emotions, they should do it in whatever context will be most helpful, whether it be alone or with someone else or on a Zoom call,” Bylsma says.
“The first reaction people have most of the time when we feel the tears starting to come is we try to stop it,” Capanna-Hodge says. “Stop trying to put the brakes on it. Let it happen, and give it the time that it needs.”
Allowing for a good cry
To set up for a healthy cry, find a safe, comfortable place for yourself or with someone whom you trust; Bylsma recommends seeking out whomever you generally feel close to and share other kinds of emotional reactions with.
You can elicit crying by listening to a song that triggers emotion, watching a sad movie, talking with your therapist or simply telling a friend you need to cry. Pay attention to your thoughts, feelings and sensations. When you prompt a good cry, “your subconscious allows you to release things that may have held you back,” Capanna-Hodge says.
Crying can look different for everyone. Your cry might consist of a few tears or a half-hour of sobbing. Your crying will also depend on what you’re experiencing, whether it’s a job loss or a stressful week working on the front lines. But if you’re crying consistently over a few weeks or don’t know why you’re crying, it may be a sign to find a therapist who can help you determine what’s going on and provide support, Henry says.
You also can offer a comfortable, supportive space for your family and friends to cry. You don’t need to have a solution; it’s just important to be there with them. Doing so, Khurana says, often allows “the blossoming of love and just caring in a way that wasn’t there before.”
The coronavirus pandemic has been extremely distressing for those who are bereaved and grieving, regardless of whether COVID-19 was the actual cause of death of their loved one. We know anecdotally and from emerging research that people who have lost someone during the pandemic were less likely to have visited them before they died or able to attend the funeral.
Our Bereavement Diaries project, which gathered pandemic diaries of people supporting the bereaved in assisted living and retirement villages, or who trained as Cruse bereavement volunteers, adds nuance to this narrative. The 43 diary entries we received between May and September 2020 offer some important, real-time insights into how grief and bereavement have been experienced during the pandemic, and the everyday ways in which people have given and continue to give one another support.
One of our diarists told us about her friend Eunice, whose grandson was gravely ill in hospital with COVID-19. Lockdown restrictions meant that she wasn’t able to see his mother (her daughter), which was so distressing for her that she became ill and staff had to call an ambulance. In a later entry, our diarist tells us that while Eunice did not end up in hospital, her grandson died, saying:
I did go round and see her. I didn’t break the rules. She was in the bedroom and I was in the passage just talking to her. I spent quite a few hours with her, because she was absolutely down, absolutely, absolutely devastated.
This diarist continues to give Eunice neighbourly love, support and comfort. We have learned that this sort of compassionate listening and support have been vital for many during lockdown, often involving telephone calls to support those who are lonely or grieving.
As another participant in the project put it:
We don’t have the answers, but we can stand or sit alongside others … The fallout [from COVID-19] is immense throughout the village … Being able to talk things through and share stories with others has been helpful.
Diarists also told us that, when there was no opportunity to collectively grieve and acknowledge someone’s death, then the grieving process was put “on hold”. Lockdown measures have greatly restricted funeral gatherings and the chance to remember loved ones who have died.
We heard from one diarist that people were responding to this by organising alternative memorial events, perhaps taking more active control over their collective grieving than they normally would:
We had a funeral on Wednesday … That girl not only lost not only her mum, she lost her father and she lost her grandfather. So Mavis and Heather printed out some songs … The staff came out to stand outside and I told some of the residents, ringing round saying to quite a few people that if they wanted to go down or stand on their balconies. They had a prayer and some songs and they talked about her for about 15 minutes and then the hearse came round and stopped a bit. It was very very moving and personal.
Different kinds of loss
We heard a great deal from our Cruse volunteer diarists about how people had very mixed feelings about bereavement during lockdown. For some, the absence of normal grieving rituals has been very challenging, taking away what one diarist described as vital “restoration after loss activities”.
For others though, we heard how the curtailment of normal social activities and not being at work enabled people to grieve according to their own schedule and rhythm, without the pressure to appear happy when they didn’t feel like that inside. We also heard how not being confronted with things like Mother’s Day and Father’s Day celebrations was a welcome relief for some who find such celebrations simply amplify the sense of loss.
Finally, our diarists told us that there was a lot of grieving going on with residents, not necessarily about a recent death, but rather over other losses:
Grieving about not seeing family, not seeing friends. Grieving for the losses that aren’t about death. All those little things make a lot of difference.
The impact of COVID-19 on assisted living residents was made clear in a collective feeling of uncertainty, losing confidence and missing opportunities that, for some, may never come again.
Diarists’ accounts echo the emerging consensus that there are additional layers of complexity to the experiences of loss, grief and bereavement during this pandemic. But they also bring into question how we memorialise death in so-called normal times. Some bereaved people have reported experiencing solace in the way neighbours have pitched in with alternative memorials that don’t involve a great deal of expense but bring people together as a compassionate community.
These accounts have also demonstrated the value of listening and neighbourliness, and the role of volunteers in supporting those who are bereaved without requiring expensive talking therapies or clinical support.
Importantly, they have highlighted how having the opportunity to get off life’s “normal” social merry-go-round is actually helpful and welcomed by some of those grieving right now. They also serve as a reminder that the pandemic involves a great deal of other kinds of losses that still need to be mourned.