Category: Cultural Expressions

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Why I imagined my husband’s death

— What if fiction can alter the real world?

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In my new novel, A Book of Days, a husband is dying slowly. While I was writing it, my own husband died suddenly, with no warning. He died in his sleep, I was told. His children and I hope that is true. He was 400 miles away, and on his own when it happened. The thought of his loneliness, if he was conscious and aware of what was coming, is unbearable, so we do not think of it. Or we try not to. We do know that he was in bed and his window was wide open; before he could hear nothing more, he would have heard the sea breaking on the rocky shore just below the cottage.

Ever since, I’ve been thinking about the lived experience of death. I don’t mean the first-hand testimonies of people who have actually died. If Lazarus told his sisters what it was like to be dead, they did not record it. If Jesus ever described the loneliness of the tomb, his words have been forgotten. No, I mean death as experienced by the living, the survivors.

The experience of death was once far more widely shared. Two hundred years ago, around 15% of babies in Britain died before their first birthdays. “Death borders upon our birth and our cradle stands in the grave”, said a 17th-century bishop of Exeter. Childbirth was dangerous for mothers too. And back then, most people in this country died in their own beds at home, with their families watching. If they did not, if they died on Flanders Fields for instance, their deaths were still not private in the main. But now many people reach adulthood without ever seeing a corpse.

I have seen several corpses, but I did not see the dead body of my husband. For complicated reasons to do with autopsies, transport and distance, neither I nor our children saw him until he was in a sealed coffin in the back of a hearse. I put my hand on his coffin as we filed past it on our way out of the crematorium, but I wish now that I had asked for it to be unsealed. Or that we had gone to the mortuary where he was. If you don’t see that the one you loved is really dead, how can you believe it?

My main feelings when he died were disbelief and a stony sort of shock that left me dry-eyed and clear-headed. And then there were weeks and weeks of paperwork and practicalities that left no space at all to think about my unfinished novel. There was only the haunting fear that by writing a death I had brought a real one into existence. My rational self knew that was not true. Fictions are not premonitions, any more than dreams are. But still.

“There was only the haunting fear that by writing a death I had brought a real one into existence.”

Even when life returned to something close to normal, I could not write the novel. For a while, I thought about writing a memoir instead, a painfully truthful one, about my husband, my grief and anger, and how complicated mourning is. Truth seemed somehow more relevant than fiction; I kept remembering something novelist Rachel Cusk said in an interview: “Once you have suffered sufficiently, the idea of making up John and Jane and having them do things together seems utterly ridiculous.” I made a start on the unvarnished work I had in mind and then abandoned it almost at once. I knew then that I had had more than enough of me.

If I had written and published that memoir, I would have been asking you, the reader, to sympathise with me. Even, perhaps, to identify with my lived experience of grief. Why should you want to do that? My experience is particular but not in any way unique. If, on the other hand, I could write imaginatively enough to transcend the limits of that experience, to widen it, to bring to it the resonances of other lives, other ways of seeing — well, that I felt would be worth doing. I, as the author, would be opening windows for the reader, not beckoning them to follow me into a shuttered room.

Autofiction — fictionalised autobiography that dispenses with the traditional elements of the novel such as character and plot — is arguably the prevailing literary mode of our time. It suits the general demand for self-revelation in life as well as art: in print, on screens, in public, people share the most intimate of details and bare their souls — or seem to. For years, aspiring writers of fiction have been told to “write what you know”, to stick to their own experience and their own boundaries, and by writing their own lives in thin disguise they are demonstrating their obedience to the rule. This is in many ways a good thing. Care must be taken not to trespass clumsily on territories of gender, racial identity, or sexual orientation. But there’s a difference between unacceptable cultural appropriation and creative imagination. That difference can be described as empathy.

However carefully curated, whatever balance it strikes between “truth” and “story”, auto-fiction requires ego. It says: look at me, even though what you see may actually be a mask. And it implicitly assumes a degree of mutual recognition between writer and reader. It’s a mirror, not a clear window. This can often be immensely valuable. But how, then, can a reader step outside their own personal experience, to feel as Keats felt when he first read Homer: “like some watcher of the skies / When a new planet swims into his ken”, breathless with anticipation like Cortez’s men, “silent, upon a peak in Darien”? How, indeed, unless writers can still write of lives beyond their own known and confined realities?

Great writers don’t need lived experience to convey emotion. The psychologist Steven Pinker described an experiment in which people listened to an interview with a heroin addict, who was either a real person or an actor. When the listeners were asked to take the addict’s point of view, they became more sympathetic to addicts in general, even when they knew the interviewee was acting. In other words, they did not need to believe the “addict” was sharing a lived experience in order to empathise. We can see this in William Golding’s astonishing novel, The Inheritors, which takes us into the world of the last Neanderthals and shows us how it feels to be on the wrong side of the cusp of change: disempowered, under threat and fearful. He achieved this masterpiece through an empathetic leap across millennia that owes everything to his brilliance as a writer and his understanding of unchanging human nature, but little to his own experience of life in 20th-century England.

As T.S. Eliot said: “What every poet starts from is his own emotions [but then transmutes] his personal and private agonies into something rich and strange, something universal and impersonal.” To me, that’s a counsel of perfection, the highest of aspirations. My husband’s death caused me great grief, but when eventually I could write that grief upon the page, through voices that were those of imagined people who lived centuries ago, I hope I turned it into something shared, something that could strike chords in hearts other than my own.

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Speaking of death

— Christians have an opportunity to eschew euphemisms and talk honestly about mortality.

By Rachel Mann

When my father died a couple of years ago, my family asked me to take the lead in organizing his funeral. I was happy to take this role: I am an experienced cleric used to working with funeral directors, and I have a strong understanding of the funeral process. What I’d never previously experienced—at least not from the point of view of a grieving person—is how readily those involved in the ministrations around a death speak in euphemisms. Perhaps it was a token of my grief, but I was annoyed by how many people couldn’t even say that my dad had died; most people, including the funeral director, said, repeatedly, that he’d “passed.”

Does it matter? At one level, no. The phrase “passed away” has been used to refer to death for 500 years. Still, it troubles me theologically. I fear that the prevalence of using passed as a way of speaking (or not speaking) of death indicates a society frightened by the finality of death, one that has opted for an overly spiritualized response to the last enemy.

A common refrain in my clergy circles is about how, on visits to plan funeral services with the bereaved, the only person prepared to use the “D” word is the priest herself. The bereaved will typically resort to any number of euphemisms to avoid it. This is entirely understandable. Shock is a natural reaction to death and, as creatures of language, we may be inclined to retreat to clichés that seem to soften the blow.

Indeed, at one level, euphemisms are entirely comprehensible as strategies to avoid the things we struggle with most. As Voltaire noted, “One great use of words is to hide our thoughts.” This applies to any difficult aspect of life, not simply death. Terms like downsizing and rationalization have been used for decades in business settings to avoid speaking directly about job cuts. In almost every area of life that really matters or troubles us—from sex through to war—there are forms of words that have been found to smooth out what’s difficult.

If death is the greatest human fear, it is hardly surprising that most of us will find ways of avoiding talking about it. The sheer number of ways humans have of avoiding the “D” word is both a testament to our creativity and an indication of how much we fear death.

Yet I think one of the imperatives on us as Christians is to be as honest as we can about death. Priests in particular are called to help people to pray and prepare them for death. Ironically, in an age when Christians are often parodied as delusional fantasists, we in fact have something powerful to offer as people who model realism and honesty about death. And one way we do that is by avoiding euphemisms at the point of death. If euphemisms are deployed in part to soften the nature of something shocking and appalling, ironically they serve to draw greater attention to that which they are meant to conceal. By being carefully and humanely honest about the singular finality of death, both priests and laypeople may be key agents in helping the bereaved to come to terms with the simple fact that, in this life at least, their loved ones are gone.

I am not suggesting that Christians should be crass. I trust we will always be sensitive to death’s ability to strip any of us of our certainties. But the quiet acknowledgment of the final nature of death may be significant both pastorally and for mission. In being clear that death has a shocking finality about it, Christians—as people who are committed to resurrection and new life—may be better placed to speak the good news of Christ. One thing we should not be afraid of in our faith tradition is the bleak reality that God incarnate, Jesus Christ, actually died and died horribly. He did not fall asleep or pass over or, to quote George Eliot, “join the choir invisible.” He died, in a vile and appalling way.

Resurrection is predicated on death. This is a powerful message in an age and culture in which technology and market economics have created the illusion that life and growth are almost endless. Growth is taken to be always good—and to be fair, growth is often a sign of life. Yet Jesus invites us to remember that unless a kernel of wheat falls and dies it remains a single seed. Jesus himself models a way of living abundantly that is grounded in the unavoidable reality of death.

Increasingly I read stories of billionaires seeking to cheat death altogether. In a culture where medical technologies have extended life among the wealthy to unprecedented levels, Christianity retains a potent voice on the inescapability of death. Even more powerfully, the figure at the heart of the Christian faith, Jesus Christ, signals that a fulfilled and rich life is not by its nature dependent on its length. At a time when religious faith is often parodied as absurd, childish, and fantastical, there is a profound opportunity to speak to the privilege of individuals and societies that seek to isolate themselves from the facts of human existence.

I know that there is nothing much I can do, as an individual, about the use of passing as a euphemism for death. At the same time, I can think of no greater vocation as a person of faith than to speak honestly about death, trusting in that even deeper reality of God’s resurrection.

Complete Article ↪HERE↩!

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Senior suicide

— The silent generation speaking up on a quiet killer

Graham and Bruce from the Ettalong men’s shed in NSW.

Over-85s have become the Australians most susceptible to suicide and a general lack of support is threatening to make the problem worse

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The age group most at risk of suicide may not be the one you expect.

The highest rate of suicide in Australia, for both men and women, is among people over 85, at 32.7 deaths per 100,000 for men and 10.6 deaths for women, respectively.

The global picture is similar. People over the age of 70 kill themselves at nearly three times the rate of the general population. Suicide attempts are also more lethal among older people, with US data showing that about one in four suicide attempts of older people result in death, compared with one in 25 among the general population.

But even these numbers are likely to be underestimates, says Prof Diego De Leo, emeritus professor of psychiatry at Griffith University.

Unless the death of an older person is very clearly a suicide, it is not likely to be investigated, he says, and deaths relating to misuse of medication or even falls that may have been deliberate are often assumed to be the result of senility or frailty.

“It’s widely reported in literature that there’s much more interest in scrutinising the causes of death of a young body than of an old man,” he says.

Helen Bird, 73, from the inner west in Sydney, believes her grandmother’s death fits in this category.

In 1985, Bird got a call to say that her grandmother Olive, 82, had been found in her nursing home room in Hobart with a serious head injury after falling. She died in hospital shortly after. Bird is convinced her grandmother’s death was suicide, knowing that her grandmother had been depressed and had been stockpiling her medication.

Trained nurse Helen Bird
Trained nurse Helen Bird believes her grandmother suicided in a nursing home, although the death was not recorded as such.

“Nothing stacked up,” she said. “I’m a nurse. But nobody ever asked a question. It was a fall, no one questioned it. It was something that really nobody wanted to hear about.

“It’s something that’s always been with me, with great sorrow really,” Bird says. “She felt, I suspect, there was just nothing more to live for, and that’s really, really sad.”

De Leo says there are very different assumptions around suicide for younger and older people. While suicide by a young person is treated as a tragedy and a mystery, an older person’s suicide is often seen as a rational decision.

“It’s this assumption: ‘he was making a balance between pros and cons in life and he discovered the cons were more than pros and he decided then to exit life’, it’s a rational balance,” he says.

Dr Rod McKay, a psychiatrist with a clinical practice focusing on older people, says it is sometimes assumed that someone dying through suicide later in life has less impact on people.

“Someone dying through suicide later in life does have a different impact on those who know them, but it’s not lesser,” he says.

Both McKay and De Leo are keen to draw a distinction between suicide among older people who are depressed and voluntary assisted dying (VAD), which is now legal in every state in Australia under tight restrictions.

“If someone comes to me and says ‘I want to die because I’m depressed and I see no solution to my depression’, well, as a physician I have to do my maximum best to intervene and try to improve the depression of this person, and I can,” says De Leo. “But [if someone comes with] chronic pain, chronic suffering, no hopes for improvement and inevitability of a progression of the suffering … then I feel different.”

McKay says well-meaning attempts to respect individual choices in regard to VAD, may have meant that physicians have not been proactive in referring older people for treatment of depression.

“That debate and the sensitivities everyone is feeling about trying to act respectfully, risks not identifying or investigating depression or reversible factors to the degree that we might,” he says.

A lifeline for men

Men die by suicide at much higher rates than women across all age groups. Among older men, loss of purpose and identity after retirement, weaker connections to children and grandchildren and to social networks can all be factors.

“We’ve never had anyone here who has taken their own life, or entertained that, that I know of,” says Bruce McLauchlan, president of the Peninsula Community Men’s Shed in Ettalong, an hour and a half’s drive north of Sydney, knocking on a wooden work bench. “Maybe, we hope, it’s the contribution of our shed that helps.

“We look for these things: a person who was lively and talkative goes quiet, then we say: ‘Mate, everything OK with you? Anything we can help with?’. Because we are a family,” McLauchlan says.

The Ettalong group, part of the global men’s shed movement, opens its metalworking and woodworking sheds three mornings a week. On a rainy Thursday, the men are just finishing their monthly barbecue lunch, which is sponsored by a local funeral home.

“It’s publicity for them,” laughs Graham Checkley, 84, a retired Baptist minister who is the group’s welfare officer. “We go to a lot of wakes.”

The group is a lifeline for a lot of men, especially after retirement or bereavement. McLauchlan started coming 12 years ago after his wife died. “The men’s shed helps me manage my grief. Otherwise, I’d be sitting at home watching TV all day.”

Garrick Hooper, 73, started coming three years ago after he retired as a taxi driver, and is still coming, “much to my amazement”.

“I always knew about it and I thought: ‘I’ll be avoiding that like the plague, I’m meaningfully employed.’ And then there comes a time that you’re not and you become officially elderly,” Hooper says. “When you retire, you’ve got to redefine yourself, and that’s just how it is.”

Having a laugh together is a big part of the Ettalong Men’s Shed.
Having a laugh together is a big part of the Ettalong men’s shed.

McKay says this sort of social intervention is incredibly important, and older people have far more resilience than they are often given credit for.

“The vast majority of older people don’t feel as old as other people view them as,” he says. “We look at older people, including older people with lots of problems and say ‘I couldn’t cope with that’. Whereas most older people cope well … so we project that on to them.”

Studies show psychological wellbeing actually improves into older age, though depression goes up again in the over-85 age group.

When that happens, McKay says, social interventions are not enough.

“Older people have extremely low access to psychological treatments, the lowest of any age group,” he says.

This can be as a result of unconscious ageism among medical professionals and a sort of therapeutic nihilism that sees depression as an inevitable part of old age and not something that can be treated.

When older people do receive treatment for depression, it can make a huge difference.

“We know that when you look at things clinically, if there is mental illness there, the likelihood of response to treatment is similar to younger people,” McKay says. “There are a lot of social factors that can be addressed, sometimes there are simple medical factors that can be addressed that can make a huge difference in whether someone sees suicide as an option or not.

“It continues to amaze me sometimes when I meet people and see how poor their quality of life is and then with a good review from a geriatrician or a GP who has the time to do it – and it does take time – just the improvement they can have in their quality of life.”

Complete Article ↪HERE↩!

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A cancer patient had decided how to die.

— Here’s what I learned from her.

For those with a terminal diagnosis, it’s getting easier to control death, but the process remains complex

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I first learned about “medical aid in dying” last spring when my sister, Julie, who suffered from advanced ovarian cancer, chose to end her life — in accordance with New Jersey law — after all realistic treatments had been exhausted and the pain medicines prescribed could no longer alleviate her suffering. At that time I didn’t know anyone else who had taken this step. While Julie’s hospice social worker provided answers to our questions, there was much I didn’t know about medical aid in dying at the time she died at age 61, much that I wish I’d understood better.

After Julie’s death, Lynda Shannon Bluestein, 76, became one of my teachers. The married mother of two also suffered from late-stage ovarian — and fallopian — cancer.

In a series of conversations last fall Bluestein told me she had wanted to plan for medical aid in dying when her condition worsened, but medical aid in dying, or MAID, is not legal in her home state of Connecticut. However, it was legal in nearby Vermont, but barred to nonresidents. Last year Bluestein sued the state to eliminate the residency requirement, which put her on front pages throughout New England.

Last March, when her chemotherapy regimen become too much to bear, she stopped treatment and began hospice care. By May she’d won her court case and the right to utilize Vermont’s medical aid in dying procedures

Like others who want to use life-ending medications, Bluestein had to follow a carefully prescribed process, which begins with a terminal diagnosis. Following Vermont’s MAID law, known as Act 39, Bluestein made two verbal requests to her attending doctor, at least 15 days apart, then made a written request signed by two witnesses who were 18 or older.

As she told me, “My two witnesses had no interest in my estate and no influence on my life [and] they weren’t related to me in any way.” (This ended up later sparking a journalism controversy when it turned out one of the witnesses was a columnist from the Boston Globe, who had been writing about Bluestein.) As a final step, a second physician reconfirmed that she met all the qualifying criteria.

By October, when we first spoke, Bluestein had met all the requirements. And so Diana Barnard, a Vermont family medicine doctor who is board certified in hospice and palliative care, called in the prescription for the mix of sedatives and barbiturates to the one pharmacy in the state that dispenses them. They would be held there until Bluestein needed them and would cost her $700 out of pocket, since Medicare, her insurance provider, does not provide coverage.

I spoke with Barnard about what happens during the procedure. “It’s harder to hasten a death than you might imagine,” she said. Five powerful medications are currently used, including diazepam, digoxin, morphine sulfate, amitriptyline, and phenobarbital. Death usually comes within 90 to 120 minutes but can take longer, she explained.

Bluestein completely understood what would happen after she swallowed the lethal mix of medicines. When we last spoke by phone, she told me she worried that if she waited too long, she’d be unable to ingest the drugs or would throw them up. When it became clear over the year end holidays that her health was deteriorating rapidly, she chose her date.

On Jan. 3, she and husband, Paul, drove to a private hospice facility that provides “a safe and caring space” for patients to end their lives.

Barnard explained that when a patient is ready to take the meds, they, a relative or friend would mix the drugs with water or apple juice. It’s crucial to imbibe the entire potion within two minutes for the greatest efficacy, said Barnard. Within a couple of minutes, patients lose consciousness, she said, and “appear to be unaware and not experiencing external stimuli,” with just the heart and lungs still working. Then comes the waiting for the end.

The 2022 Oregon Death With Dignity annual summary reported rare complications such as difficulty swallowing and regurgitation, but Barnard said there are precautions that can prevent most of them. (Oregon is one of 10 states plus the District of Columbia that now allow MAID.)

For instance, Barnard makes sure her patients can swallow effectively and can drink the whole mixture at once (some people practice with a placebo or view a video enactment of how to take these drugs at bedside).

On the morning of Jan. 4, now in Vermont, Bluestein and her husband Paul got up early, he said, and after the rest of the family arrived, he gave her the premedication (which makes the patient calm and drowsy, though not too drowsy to take the next step). After 30 minutes, the hospice owner came in to mix up the life-ending cocktail. He asked her if she was ready, and according to Paul she replied, “I’m so happy I don’t have to suffer anymore.” She drank it all — quickly.

Bluestein was unconscious within five minutes, her husband said. “She looked like she had fallen asleep peacefully. … A lot of the pain that was in her face went away, and I was grateful.” She was pronounced dead by a hospice nurse after just 25 minutes.

A few weeks after Bluestein’s death, I asked Paul Bluestein about the pain she had endured. He replied in a text: “There are some things in life no one should have to see and one of them is watching someone you love in pain.” It was “intolerable” and “undescribable.”

During my last phone call with Bluestein, she made a point to say that making her plan “was extraordinarily difficult. You really have to want to do this a lot, have a fair amount of money, a lot of flexibility, and be very well connected to accomplish this.”

I understood exactly what she meant, as the same had been true for my sister, who, while suffering, had to arrange this last medical procedure.

For critics who fear that MAID could make it too easy for someone to take their own life, or to pressure someone else to take theirs, I offer Bluestein’s words, along with my sister’s experience.

It’s not an easy process, and requires deliberation and intent, and the sign-off from others. But it offers an end to much pain and suffering, and that is a gift to those like my sister and Lynda Bluestein.

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Demand for death doulas has soared.

— Here’s how they help patients go with grace.

By Stacey Colino

What does it mean to have the “best possible death?” A growing number of end-of-life doulas are helping patients and families figure that out.

When Jerry Creehan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2017 at age 64, he and his wife Sue knew they were facing a rough road ahead. For more than a year, Jerry had struggled with his balance and had been falling, unable to get up. ALS (formerly known as Lou Gehrig’s disease) is a progressive neurological disorder affecting nerve cells in the brain and spinal cord that regulate voluntary muscle movement, breathing, and other bodily functions; it eventually leads to paralysis and death.

In 2020, his condition began declining and he became reliant on eye gaze technology to move his wheelchair, and on a non-invasive ventilator to breathe. While attending a support group at the ALS Clinic at Virginia Commonwealth University, Sue heard Shelby Kirillin, an end-of-life doula, speak. Kirillin, a former nurse specializing in neurotrauma, spent two decades working in intensive care units, where she saw “how ill-prepared people are for the end of life. People don’t know how to talk to people with a terminal diagnosis. I thought we could do better.” That’s what inspired her to become an end-of-life doula in 2015.

“We knew we were in the final stages of ALS, and even though Jerry wasn’t afraid of dying, we needed someone to help us talk about it,” recalls Sue, a wound-care nurse consultant in Richmond, Virginia. “He wanted it to be the best possible death it could be, pain-free, and not filled with anguish.”

Many people are familiar with labor doulas, postpartum doulas, and maybe even abortion doulas, who provide support for people dealing with challenges related to ending a pregnancy. By contrast, end-of-life doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. Since the virus began wreaking havoc, organizations that support and train death doulas in the U.S. have grown. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Research has found that end-of-life doulas are most active in Australia, Canada, the United Kingdom, and the United States.

“During the pandemic, people were facing their own mortality more than at any other time because there was a lot of dying and grief happening,” says Ashley Johnson, president of NEDA, which is based in Orlando.
Offering various forms of support

Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors.

“People don’t want to talk about death—they’re so afraid of it,” says Elizabeth “Like” Lokon, a social gerontologist who recently retired from the Scripps Gerontology Center at Miami University in Ohio and is now training to become a death doula. “As a social gerontologist, I want to bring it out from hiding and help people accept it. In some cultures, the denial of death, the separation between the dying and the living, is not as severe as in some western countries,” adds Lokon, who grew up in Indonesia.

“We labor into life, and we labor out of life,” says Kirillin. “All of us are born with life and death walking next to us.”
Changing the approach to death

Since it was formed in 2015, the International End-of-Life Doula Association (INELDA) has trained more than 5,600 doulas around the world, but the practice and training of death doulas varies considerably. There isn’t a universally agreed upon description of this type of care or federal regulations in the U.S. for becoming an end-of-life doula or oversight of their work. A study in the journal Health & Social Care in the Community concluded that the lack of a business model for death doulas creates inconsistencies in the services death doulas offer and what patients and their families can expect.

For example, INELDA offers a 40-hour training that focuses on the foundations of doula work and support for the dying. By contrast, NEDA is a membership organization that offers micro-credentials after doulas show their knowledge and proficiency in the skills involved. Other training programs offer four-week in-person courses, 12-week online courses, six-week programs, and other formats.

There’s also no standardized fee structure for end-of-life doulas: It typically ranges from $20 to $100 per hour, depending on the location and range of services that are offered, Johnson says. And some death doulas offer a sliding scale of fees or do it voluntarily, on a pro bono basis. Their services are not covered by insurance.

Regardless of how they’re trained or paid, many death doulas find the practice meaningful and fulfilling.

“People find it profoundly moving—some people use the word honor or sacred,” says Douglas Simpson, a trained end-of-life doula and executive director of INELDA. “End-of-life doulas help people take control of what their death looks like … It’s very fulfilling and not as depressing as people think.”
During the pandemic, Julia Whitty, a writer in Sonoma County, California, who had done volunteer hospice work earlier in her life, trained to become an end-of-life doula because her mother and a friend were on the verge of dying. She wanted to be better prepared personally, and she wanted to help other people with a terminal diagnosis in her social sphere.

“It’s a two-way relationship because you’re learning something from someone who’s coming to their end,” says Whitty, “and hopefully you’re helping them manifest what they want in their last days—physically, emotionally, socially, and spiritually.”

Among the things end-of-life doulas don’t do: administer medicine, monitor vital signs, make or recommend medical decisions for the client, impose their values or judgments on clients, or act as therapists.

“We meet people where they are—we come in holistically and help them navigate the final stages of life,” Johnson says. “It’s helping people face their own mortality with dignity. We’re promoting death positivity, decreasing the stigma.”
Creating a peaceful ending

Eleven months before he passed away, Jerry Creehan was put into hospice care and his wife Sue contacted Kirillin who worked with them once or twice each month for an hour at a time then more often as his condition deteriorated.

At first, Kirillin helped them talk about what death looks like and how Jerry could “own” his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night. Kirillin suggested they send an e-mail to friends and family members asking them to share memories and photos of time spent with Jerry.

“We got a wonderful response and put together a legacy journal,” recalls Sue who has three adult children and six grandchildren with Jerry. “I would read it to him, and it was very consoling to him to know that he had an impact on people’s lives.”

On his last evening, May 2, 2022, his breathing had become very difficult. There were 19 people in the bedroom, and someone opened a prized bottle of pinot noir to be used for communion with everyone present. Jerry was a certified wine educator, a foodie, an avid golfer, traveler, and a devout Christian, according to his wife of 46 years.

“He turned to me and said, Sweetie, I think it’s time,” she recalls. They kissed and hugged each other—family members helped put his arms around her—and Jerry said to Sue, “I love you. I always have and I always will. I’ll see you soon.” Then he winked at her and closed his eyes, she recalls. His ventilator was turned off and he passed away.

Afterwards, Kirillin and the hospice nurse stayed with him, bathed him, dressed him, and prepared his body for the funeral home.

“We did everything the way he wanted it to be done—that was a big gift to my family,” says Sue.

The Creehans’ experience isn’t unusual. In a study published last year in Palliative Care and Social Practice, researchers interviewed 10 bereaved family members about their experiences with a death doula and found that it was overwhelmingly positive. The most valuable benefit families gained was an increase in death literacy, including the ability to talk openly about death, which helped them feel empowered to care for their loved ones at the end of life. There was also a positive ripple effect as families spread the word about the benefits of using a death doula.

“People don’t want to wait for death to come and get them—they want to play the hand they were given the best they can,” Kirillin says. “We’re all going to die. I can’t change that. But I can help someone end the last chapter of their life the way they think they should. And I will sit next to them as they own it.”

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‘Duo euthanasia’

— In the Netherlands, a famous couple chooses to die together

Former Dutch prime minister Dries van Agt and his wife, Eugenie, in Den Bosch, the Netherlands, in June 1983.

By

The vow is “til death do us part.” But for former Dutch prime minister Dries van Agt and his wife, Eugenie, the aim was to leave this life the same way they had spent the past seven decades — together.

The couple, both 93, died “hand in hand” earlier this month, according to a statement from the Rights Forum, a pro-Palestinian organization that Dries van Agt created. They chose to die by what is known as “duo euthanasia” — a growing trend in the Netherlands, where a small number of couples have been granted their wish to die in unison in recent years, usually by a lethal dose of a drug.

A longtime politician who had conservative roots but campaigned for numerous liberal causes, van Agt served as prime minister of the Netherlands from 1977 to 1982. He later became the European Union’s ambassador to Japan and the United States

Photos of the couple from their decades-long careers as public figures often show them walking in step: waving to crowds through a car window, voting together at an election site and giving each other a smooch at a public event.

The van Agts’ health had declined in recent years, Dutch public broadcaster NOS reported. The former prime minister never fully recovered after suffering a brain hemorrhage in 2019, which happened while he was delivering a speech at a commemoration event for Palestinians. Eugenie’s health issues were largely kept private.

“I feel like it’s kind of beautiful, honestly, that you’ve lived your life together, you both happen to be gravely ill without a chance of getting better, you’re ready to go, and you would like to go together,” said Maria Carpiac, director of the gerontology program at California State University at Long Beach.

When it comes to the right to choose one’s own death, the Netherlands is “kind of the model” for any U.S. legislation on the topic, she said.

At least 29 couples — or 58 people — died together via duo euthanasia in 2022, the most recent year of data from the country’s Regional Euthanasia Review Committees. That’s more than double the 13 couples who did so in 2020, when the committee first started looking at partners specifically, but it still represents only a small fraction of the 8,720 people who legally died by euthanasia or assisted suicide in the Netherlands that year.

“It is likely that this will happen more and more often,” said Rob Edens, press officer for NVVE, a Dutch organization focused on research, lobbying and education about assisted suicide and euthanasia in the Netherlands. “We still see a reluctance among doctors to provide euthanasia based on an accumulation of age-related conditions. But it is permitted” in the country’s legal guidelines, he said in an email.

Assisted suicide is when a person self-administers a lethal dose while a physician is present, while euthanasia is when a medical professional administers the dose. Both are legal in the Netherlands when specific criteria are met. (Some groups prefer the term “medical aid in dying,” or MAID, due to religious and social stigma around suicide.)

Euthanasia is illegal in the United States, but assisted suicide is allowed in D.C. and at least 10 states: Oregon, Washington, Montana, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico. Eligibility requirements tend to be strict across the country, Carpiac said, but there are differences between jurisdictions.

The Netherlands, a country of almost 18 million people, has allowed assisted suicide and euthanasia since 2002. It requires that individuals willingly request the termination of their life in a manner that is “well-considered,” with a sign-off from a doctor that they are experiencing “unbearable suffering with no prospect of improvement.”

Another physician then has to agree that the person qualifies, and doctors can choose whether they are involved in the procedure. After every death, doctors are required to notify a regional review committee, which examines whether each case was handled lawfully. Couples who seek duo euthanasia are required to apply and undergo the review process individually, with separate doctors.

“An accumulation of age-related complaints can lead to unbearable and hopeless suffering,” Edens said, explaining the Dutch guidelines. “The expectation is that if doctors are increasingly willing to provide euthanasia when there is an accumulation of old-age complaints, the number of duo euthanasia [cases] will increase.”

Research suggests that older Americans are at a higher risk of dying after losing a spouse, particularly in the first few months after their death. While the cause of this phenomenon is unclear, studies have found that grieving partners have higher rates of inflammation and are at increased risk of heart attack and stroke, often due to stress-induced changes in blood pressure, heart rate and blood clotting.

“The first thing that came to my mind was the widowhood effect,” Carpiac said, referring to the van Agts’ choice to die by duo euthanasia. “I have a grandmother who is 96, and she’s like, ‘I’m not going anywhere!’ But if I had a partner and they were my person, and we were both kind of at the end of our lives, would it be worth it if he were to go without me? Would I die of what I considered to be a broken heart? I would want to have a choice.”

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Death Cleaning

— How to Survive an Estate Clean-Out After Loss

Advice from experts including a death doula on processing a home full of items while grieving

By Charlotte Collins

Organizing and clearing out an entire home is not most people’s idea of a good time. Doing so while grieving compounds that sense of dread and overwhelm. So perhaps it’s a bit of a surprise that The Gentle Art of Swedish Death Cleaning, Margareta Magnusson’s 2017 book chronicling her approach to ordering an estate in the wake of a loss, was a smash success. Her humorous, accessible guide amassed a cult following among an audience of fans that grew even larger after Peacock released its eight-episode series of the same name last year. But because both the book and the show it inspired tackled an issue that most people will encounter—and one that’s often swept under the proverbial rug—perhaps it’s not all that surprising that consumers found themselves clamoring for more content on post-loss decluttering.

Public meditations on grief and discussions around it seem more easily broached following the COVID pandemic, which spurred a reckoning in how we deal with mourning. The years since 2020 have been characterized by plenty of discourse on grieving, Zoom grief groups, and other bereavement support efforts, opening the floodgates on conversations that might have struck folks as morbid prior but now feel decidedly necessary to have out in the open. Podcasts like Anderson Cooper’s All There Is serve an audience of those looking to reflect on loss and how to live afterward. In cleaning out the New York City home of his late mother, the celebrated designer and socialite Gloria Vanderbilt, Cooper was guided by a number of handwritten notes Vanderbilt left like breadcrumbs to help him along. “These are Daddy’s pyjamas,” read one dispatch on a piece of paper near a pair of satin trousers.

Family portrait of the Coopers as they play on a sofa in their home Southampton Long Island New York March 30 1972....
Family portrait of the Coopers as they play on a sofa in their home, Southampton, Long Island, New York, March 30, 1972. American author and actor Wyatt Emory Cooper and heiress Gloria Vanderbilt Cooper sit with their sons, Carter (1965 – 1988) and Anderson Cooper.

Not everyone is given such clear direction in how to sort through a loved one’s dwelling after their passing. AD caught up with some experts on the subject, including a professional organizer, the owner of a liquidation and clean-out service, a death doula, and Magnusson herself, to advise on how to face the inevitable task—which all our pros say can, and should, be put into practice before a loss occurs. “Start before you are too old, or too weak, or get that final diagnosis,” Magnusson tells AD. “The upside is a better, easier life in which you don’t have to worry about the people you leave behind and all your crap they have to go through.”

How do I clear out a house after someone dies?

Both Magnusson and Mark Ferracci, owner of the Central Maryland–based clean-out and liquidation service Sanford & Son Estate Specialists, say that age 60 is the time to start organizing the objects of your estate for those who will someday have to clear it all out.

Allie Shaw, a professional organizer operating in the Greater Toronto area, recommends starting off by taking inventory of all the important items inside the abode, including anything of sentimental value (like photo albums, beloved heirlooms, or official documents) or monetary value (such as jewelry or china). When her own mother was given months to live, she became Shaw’s first client. Over 10 months, Shaw and her mother “had lots of conversations, going through possessions room-by-room and item-by-item,” she says. “It was very cathartic and it was a time in my life that I was so grateful for. She often said, ‘I got more months because we had this time.’”

In conversations about death and estate organizing it may go without saying, but Shaw encourages having formal documentation in place, like a will indicating your wishes for certain belongings. Though the act of preparing a will and even death cleaning an abode while the resident is still alive and well might feel bleak to some people, it’s important to remember that setting things in order can alleviate major stress later down the line. “It is a monumental task and often people think they’re leaving everything behind as a gift, when I’d say most of the time it’s a big burden,” Shaw explains.

Consider what you can manage and when to call in the estate cleaning pros

There’s no rule of thumb to tell whether your particular estate will need a whole team of professionals to clean out. But whether it’s a small apartment or a sprawling mansion, clearing a loved one’s spaces after they’ve died is rarely a one-person job. Particularly for those who value sustainability and cringe at the thought of wasting the beloved items of a family member’s residence, estate clean-out services like Ferracci’s might be the way to go as they’re plugged into the proper channels to help prevent waste. His team is trained to recycle materials, to facilitate the sale of pieces that have value, and to donate items that no longer have a place with the deceased’s family members before resorting to the dumpster.

Death Cleaning How to Survive an Estate CleanOut After Loss

Like a number of estate clean-out services, Ferracci’s process begins with a simple conversation—an informal chat for which he doesn’t charge that takes place in the abode. “I always say the same thing to people: Get the personal stuff out, get the financial-related stuff out, get the family mementos out; things that you want, those are key,” he says of his preliminary discussions with clients. Making sure family members have combed through the residence for items they hold dear so that all that’s left are things they won’t mind parting with is crucial. “Before I come in to do the job, I want to know that all that stuff’s gone and that everybody’s picked through it.”

How much does it cost to hire professionals for estate cleaning? And how long will it take?

The cost of an estate clean-out varies by how large the home is, which determines how big of a crew the service will need and how many days to allot for the project. A typical family home will likely take two to three days for Ferracci’s team to process, and he estimates that 90% of his average clean-outs cost between between $2,500 and $5,000. His team will sometimes purchase items to sell from clients’ estates, which can help offset that cost: “One [clean-out] I just started, I quoted them $4,400. I gave them $800 for the contents and the price was $3,600, and I’ll be there about two and a half days.” Condos and smaller spaces will generally cost less, while hoarding situations as well as larger abodes drive the price tag up. Though it’s not the norm, Ferracci has encountered homes where the bill was as high as $20,000 to clean everything out.

If you’re coming at an estate clean-out from the “gentle” perspective, meaning you have time to get things in order while the resident is still with us, an organizer may be the way to get things going gradually. As Magnusson advises, “death cleaning is for the living.” Shaw says that in her experience, organizers will charge $50 to $100 an hour. The process usually takes place across several sessions of two or three hours each in order to get a sense for the volume and how much accounting there is to do.

How can I deal with the death-cleaning process while grieving?

Getting ahead of organizing and cleaning a home before a loss takes place is ideal, but that’s just not always possible. It’s likely that the majority of people faced with clearing out a loved one’s estate are still in the grieving process. Even when it’s not a full estate but rather a few rooms with the deceased’s items, the emotional weight can be heavy. Magnusson found clearing out her husband’s spaces in their shared home after his death, particularly his clothing, was “the saddest thing I have ever done.”

Death Cleaning How to Survive an Estate CleanOut After Loss

Some mourners seek the services of a death coach or death doula to help them navigate the complex emotions that surface during grieving. The process of estate cleaning, which can be stressful under any circumstances, is particularly difficult after a loss. New York City–based death doula Mangda Sengvanhpheng knows that there’s no official guidebook to navigating loss, but when it comes to sorting through the ephemera of a loved one’s life, it’s helpful to have a group of helpers around: “Whether that is with your family members, your loved ones, friends, doulas, therapists, whoever it is that can become a support team, find those people to help you move through that,” she suggests.

Parsing through the objects of a deceased family member’s home can often make for bitter fighting between relatives, something both Ferracci and Sengvanhpheng have experienced in their work. Whether or not there are fights over which items go to whom or which things should be kept versus which should be tossed, finding difficulty in the process of going through these items can be viewed as a microcosm for grief in general. For certain things from an estate that we simply have no place for, it’s ultimately about acknowledging that love and value and then letting go.

“An object is an object, right? A table is a table. But these things have meaning because we imbue meaning in them,” Sengvanhpheng says. “There are stories in the objects, there are memories in the objects. When we lose people, as irrational as it may feel, there’s a reason for [feeling tied to objects]. We lose someone physically and these items—something tangible from them that we’re holding onto—mean so much.”

Parting with a loved one’s things can feel like a jarring reality check in the wake of a loss. Sengvanhpheng’s work involves trying to reframe that: “Letting go of items can be a form of acceptance,” she says. “If, for example, your sister takes something from your mother’s estate that you wanted, you can acknowledge that and then find ways to accept that this is just the reality. How can we start letting go? We consider how you can connect to your mom in a different way.”

Sometimes, there’s a melancholy beauty about ushering these emotionally charged objects into their next phase and assigning them a new narrative. Grief coach Charlene Lam curated an art show on the experience of going through her mother’s home and the objects she decided to keep and discard. When Shaw was taking inventory of her mother’s estate, she happened upon a beautiful rocking chair that had a long history in the family and was very beloved to her mother. They landed on donating it to the local library so that generations to come might make good use of it. “It’s still there and they love it,” she says.

Delaying the death-cleaning process can end up costing you

For many people in the golden years of their life, Ferracci’s seen enough to recommend downsizing when a large family home no longer serves your needs. He’s met clients who have proclaimed that their parents’ move from a big house to a smaller condo in their twilight years was “the best thing they’d ever done”—giving them ability to travel, save money, and ease the burden of sorting through a massive house for their children when that time came. When elderly homeowners aren’t capable of maintaining their houses, issues like accumulated clutter, mold, rot, and overgrown yards can make for an especially pricey clean-out and can even cause the home’s value to go down.

For those looking to list the family home after clearing it out, delaying on a needed clean-out runs the risk of confronting a more difficult selling market later down the line. “You’re going to continue to do the maintenance and you continue to pay the bills for the house, and the house is vacant, and interest rates can start to go up,” Ferracci says. He’s dealt with clients who struggled to sort through items or found themselves in gridlock with family members about what to do with the estate, ultimately leading them to list the residence many months later for thousands less than if they would have been more efficient in the clean-out process.

Ultimately, your pace is your choice. How to prepare for a loss, or even your own death, is not something AD purports to have all the answers on, but dealing with the items of our lives is manageable with the proper tools, outlook, and support. “We are all dying,” Magnusson says. “This is not morbid. It is just fact. Take care of it.”

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