Month: March 2022

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“In Love: A Memoir of Love and Loss” — A Brave and Heart-rending Story

This is a profoundly disturbing memoir about a subject that hits close to home for many readers.

By Helen Epstein

Even readers familiar with novelist Amy Bloom’s conversational, ironic, sometimes elliptical style and her unconventional choices of subject matter may be jarred by the subject of her new memoir – an account of the assisted, aka accompanied, suicide of her 66-year-old husband Brian Amiche.

Over the past decades, there have been many books — fiction and nonfiction — by writers who have decided to end their own lives (usually by the legal means of voluntarily refusing to eat or drink) or writers who have assisted others, but assisted suicide is still a dangerous literary subject. Assisting a person to kill themself is considered murder in all American states but California, Colorado, Oregon, Vermont, Montana, New Jersey, Maine, Hawaii, Washington, and the District of Columbia. All require that the potential suicide be a resident, assessed by two physicians as having only six months to live, and able to express the wish to die, orally and in writing to two local physicians.

Apart from the emotional stress of making this decision, on a timetable determined by others, in an environment not helpful to people who wish to end their lives, there is a possibility that relatives and friends, even strangers who find suicide immoral, may take legal action against anyone who enables it. At a time when Right to Lifers in some parts of the U.S. are suing physicians who perform abortions, this is not a minor concern. Even though most of us know someone whose partner has been diagnosed with Alzheimer’s — I currently know four such people — and we hear reports of the long deterioration between diagnoses and deaths from their caretakers, few of us know how the Alzeimer’s patient wants (or once wanted) to end their life. Bloom’s memoir is a rare book that aims to tell us, a memoir as well as a guide.

It begins quietly, on “Sunday, January 26, 2020, Zurich, Switzerland. This trip to Zurich is a new, not quite normal version of something Brian and I love: traveling. Road trip, train ride, ferry ride, airplane anywhere.” Then, after we learn they’re settling down in Business Class en route to Switzerland, the narration swerves. “Dignitas’ office is in Zurich, and that’s where we’re headed. Dignitas is a Swiss nonprofit organization offering accompanied suicide. For the last twenty-two years, Dignitas has been the only place to go if you are an American citizen who wants to die and if you are not certifiably terminally ill with no more than six months to live. This is the current standard in the United States, even in the nine right-to-die states plus the District of Columbia, about which many older or chronically ill Americans harbor end-of-life fantasies and which I researched, at Brian’s direction, until we discovered that the only place in the world for painless, peaceful, and legal suicide is Dignitas, in the suburbs of Zurich.”

In August of 2019, two months after he turned 66, Brian Ameche, oldest son of a large Italian-Catholic family, architect, fisherman, and Yale football hero, was definitively diagnosed with Alzheimer’s. Bloom, whom he married in 2007, had suspected that something had been affecting his behavior since 2016. Now, after an MRI and a second neurology consult, that something is diagnosed as Alzheimer’s disease. In Bloom’s account, “It took Brian less than a week to decide that the ‘long good-bye’ of Alzheimer’s was not for him” and less than a week for Bloom to find Dignitas, after he asked her to research and organize a good death. The epigraph to this book is: “Please write about this,’ my husband said.”

In Love: A Memoir of Love and Loss is a testament to the tortuous process of devising a good death in the United States in the 21st century, and going through with it. Bloom takes the reader through the stages, from her first observations of her husband’s changes that she ascribes to middle-age: forgetting names, repeating questions, a new irritability, new likes and dislikes, his handwriting, appointments and medications confused, inexplicable problems at work. Then being fired from a job for which he had recently been enthusiastically hired to more obvious signs of illness. By 2016 — only nine years into their marriage — she has become more alarmed and begins to research the differences between mild cognitive impairment and true Alzheimer’s disease on websites and videos. But along with worrying and calculating her partner’s probable timetable, she is still “minimizing” and “normalizing” and keeping her real thoughts secret from almost everyone she knows.

One of the attractions of Bloom’s fiction is her psychological insight. She was a psychotherapist before she became an author and she tells this story as clearly as a case history yet in a voice as seductive as her best fiction. Her account of how she and Ameche met might be mistaken for one of her short stories: “September 2005, Durham, Connecticut….Brian and I fell in love the way some middle-aged people in unhappy partnerships and in small towns do: liberal Democrats in a Republican town, ethnic types in a town full of Northern Europeans, opinionated loudmouths… He said, What’s your family like? I said Jews, from New York. You? He said, Well we’re a football family. We have three Heisman trophies in my family. I said, What’s a Heisman, and he kissed me. I kissed him back and, sensibly, we avoided each other for the next year.”

Understatement, wit, and light irony — rather than depth — are features of Bloom’s fiction and they are in evidence in this memoir too. Anchored in short chapters over a period of the five key days around Zurich, In Love flashes forward and back over scenes from their marriage and as well as to Ameche’s two memorial services, the first in the library across the street from their Connecticut home and a second in a Unitarian Universalist church in Philadelphia, the Ameche family hub. Bloom tells us little about how this event has been arranged but hints that as a Catholic suicide married to a Jew, and an activist for Planned Parenthood, who has personally escorted women past protestors at abortion clinics, he is not the best candidate for a Catholic burial.

Bloom paraphrases almost every conversation she has with her husband so that everything that happens is rendered in her voice. Though it is an eminently readable voice and I inferred that avoiding direct quotes was a defense against potential legal action, I found myself wanting to hear him speak about the reasoning that led to his decision to end his life before he no longer was able to do so.

Bloom quotes only one of their actual conversations.

“Here’s my first choice,” Brian says. “We go through this process and whenever it is that we reach the point that it seems like I’m really going downhill, you tell me and then we lie down together maybe in my office, not in our bedroom — well maybe in our bedroom, we’ll see — and you give me whatever will kill me. I trust your judgment.

“I can’t do that darling. It’ll be murder. I can’t give you something that will kill you. We read about that all the time. These people can be prosecuted,” I say, although I don’t really think that a white woman my age will be sent to do hard time for assisting her husband in ending his life, in Connecticut, the Land of Steady Habits, as Brian calls it.

“I could go to jail.”

Instead, Bloom goes online, on a computer in the public library, also, I assume, for legal reasons. After scrolling through the many ways people in the 21st century choose to kill themselves, she comes upon Dignitas, the Swiss organization that has “served” 3000 people who have successfully completed a gauntlet of stringent protocols and paid a $10,000 fee.

There are few supporting characters that are more than a sketch in this memoir and the reader craves to know more about them: their Dignitas contact who works under the alias of “Heidi” and Dr. G., their doctor in Zurich; her older sister Ellen, who gives Bloom a check to finance the trip to Dignitas; Bloom’s adult children and grandchildren; her Tarot card reader and her psychiatrist; his meditation leader and his therapist. Some key characters are described as “friend of a friend” or “a woman who knew a woman.” These shadow figures are meant to evoke the furtive days of abortion pre-Roe vs. Wade. But none of the supporting cast are fleshed out or extensively quoted, with the exception of the Clinical Director of End of Life Choices New York, Dr. Judith Schwartz, whose job it is to dispense such information, who vouches for Dignitas, and advises Bloom on how best to interact with the organization (“Just do what they tell you,” she says).

“I love Judith Schwartz,” Bloom writes, “as I now love everyone I speak to who is not cruel, horrified, or utterly useless in this process.”

Most surprisingly, it is Brian’s mother, Yvonne Ameche, who is living through the awful Alzheimer’s-driven deterioration of her closest friend, who becomes a steady and generous support. Mrs. Ameche is the only member of the Ameche family whom Bloom portrays in any detail and I welcomed reading everything about her reaction to their decision. Bloom also provides a sketch of her psychotherapist Wayne, who in addition to getting Bloom through the ordeal, volunteers to have a 90-minute interview with her husband and provide a medical assessment (required by Dignitas) attesting to the absence of any clinical depression in Ameche.

In this letter that Bloom excerpts for nearly two pages we finally get a biographical sketch of the man from someone other than the author: “He is the oldest of six children of a legendary American football hero and his loving but limited wife. He himself was an outstanding football player at Yale University, where he also began his architectural studies. He married his teenage childhood sweetheart. This was a union that did not stand the test of maturity that comes with life. They divorced without children. The divorce caused upheaval in Mr. Ameche’s devout Italian-American Catholic family of origin…Mr. Ameche estimates that he has 60-80 percent of his recent memory capacity left. I would estimate that it is more like 40-50 percent…At the moment he is mentally competent with sound judgment that is unhampered by mental illness or severe character disorder….”

Amy Bloom.

Close to the end of the book, on January 30, 2020, Bloom takes us to the apartment in an industrial park outside Zurich where Dignitas ends its clients’ lives. Here, she retraces, step by step, the Swiss-sanctioned end-of life ritual, describing the two tactful and neatly dressed ladies who greet them, the large room with many bowls of chocolate and several places to sit or lie down, the last conversation she and her husband have. He drinks his anti-emetic, then the sodium pentobarbital. He falls asleep. He stops breathing. Bloom sits with him alone for a while; then the ladies return to usher her out before the Swiss police arrive to identify the body. Then, she takes an Uber to the airport.

As it happened, I had just read a co-authored memoir of a couple that had pursued assisted suicide in California and documented a very different process in alternating chapters: his and hers. In A Matter of Life and Death, Marilyn Yalom is terminally ill, not with Alzheimer’s but with multiple myeloma, a lethal form of cancer diagnosed in 2019. She suffers from debilitating physical symptoms but her cognitive powers remain intact. Long married to psychiatrist and eminent novelist Irwin Yalom, both she and her husband are in their 80s and long-time California residents, able to make use of the state’s end-of-life laws.

They, too, are accomplished writers. Marilyn Yalom, was a professor of literature and women’s studies and their memoir, like In Love, was a project she, the dying party, initiated as a document, a how-to for others in similar circumstances and, one suspects, a memorial book for her family. Written in alternating chapters that take us from diagnosis and a hospice to a physician-assisted death, the reader is told the story from both partners’ points of view, one account often serving as a reality check on the other. It also provides a rich context filled with doctors, colleagues, children,and grandchildren. It is careful, comprehensive, and occasionally plodding. But, alternating chapter by chapter, it leaves no questions unanswered for the reader.

Bloom’s book, on the other hand, does. It is a memoir with all the strengths and limitations of the form and the single point of view of the memoirist. I was always aware of her selection of what to include and what to leave out. She leaves out their relative ages: will she be an old or young widow? (Wikipedia notes that they are the same age, both born in 1953). She does not write about anyone who contested or refused to comply with their plan or questioned their reasons. The people she does portray at any length are extraordinarily supportive and helpful. None express any doubts about Brian Ameche’s decision and the reader doesn’t know whether they expressed any or how many people even know about it because Bloom chooses to be vague about whom the couple told and when.

It is extraordinary for anyone to share the details of so intimate and controversial a process as assisted suicide with the world and I feel petty and picky quibbling with Bloom’s choices. But I wondered: did anyone say to her, don’t do it? Did any of Ameche’s friends or family express doubts? I would have liked to read much more direct dialogue. I would have liked to know about Brian Ameche’s life history, his life trajectory, his friends, recollections of members of his book group, his relations with his family of origin, his previous marriage, and the beliefs that allowed him to decide, in Bloom’s paraphrase, that he’d rather die on his feet than live on his knees.

Bloom’s voice is so strong and authoritative that I also missed other voices for contrast. Perhaps few people were willing to be quoted about Ameche himself or his decision to pursue assisted suicide. But this omission makes Bloom the sole authority, which gives In Love an unequivocal quality that made me, at times, question her version of the story. Yet with this caveat I found In Love a beautifully written and profoundly disturbing memoir about a subject that hits close to home for many readers. It is a heart-rending book and a very brave one.

Complete Article ↪HERE↩!

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I kept reliving the moment my mother died.

Understanding the flashbacks helped me grieve – and move on

I spent two years watching cancer take my mum – and even longer trying to dull the memories. Now, I can finally remember the happier times

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It would happen when I least expected it. At the checkout at the supermarket, or sitting in the park. Suddenly, I would find myself back in my parents’ flat, watching in horror as my mum took her last ragged breaths. Years later, I could still recall every detail and the feeling of her frail hand growing colder in mine. Each time, it was like reliving her death all over again.

Grief toppled me after my mum died of bile duct cancer in 2016. The chaotic jumble of emotions left me feeling numb and drained. I knew that shutting myself down and locking away my sadness deep inside me wasn’t the best way to cope, but I didn’t know what else to do.

I tried counselling, read grief message boards late into the night, attended support groups. They helped in small ways, but they did nothing to lighten the suffocating weight of my loss. Then, one day, I found myself in a community centre in King’s Cross, London, talking to a group of strangers.

I had signed up to a 10-week grief workshop, which was almost over. On the board was a crude drawing of a brain with lots of little cameras surrounding it. This is how flashbacks are produced when something traumatic is happening, explained Dr Erin Hope Thompson, a clinical psychologist and the founder of the Loss Foundation. Our brains try to record everything. That is why, when painful memories drift back, they remain so raw and vivid.

“The brain changes quite dramatically when we’re in a traumatic moment,” Thompson says now. “It goes back to fight or flight. The part of the brain that is trying to capture what happens – the limbic system – goes into overdrive. Blood flow increases to this area.” Like the camera in her metaphor, it starts taking lots of snapshots. “It’s trying to capture as much as possible to keep us safe, so that, if we were in the same situation again, we’d know what to do.”

Ann with her mum in Finsbury Park, north London, in 2014
Ann with her mum in Finsbury Park, north London, in 2014.

At the same time, the blood that flows to the part of the brain that stores these memories and puts a “time stamp” on them decreases, she says. “These traumatic memories haven’t been processed in the normal way. They’re kind of floating around. A flashback is our brain trying to process what happened.”

Most people know about the five stages of grief – denial, anger, bargaining, depression and acceptance – popularised by the psychiatrist Elisabeth Kübler-Ross, but there is much less talk about flashbacks and the role they play in helping us move through pain. They are most often described as a symptom of post-traumatic stress disorder.

But sitting there, listening to Thompson describe how the brain produces them, something clicked. Flashbacks are a common experience for many people who are grieving. A 2012 study found that 69% of people experienced them in the lead-up to the anniversary of the death of a loved one.

“We often retain those memories very strongly because they’ve got a lot of emotion around them,” says Andy Langford, a counsellor and the clinical director at the bereavement charity Cruse. “It’s not just an intellectual memory that we can think of and then dismiss. It’s something that’s really highly charged. They can involve any of the senses. They can be visual, but they can also involve smell, or hearing someone’s voice, or the sounds of when they died, like the rattle in the throat.”

While my head was stuck on the last moments of her life, I hardly ever dreamed of my mum. When I did, she always appeared as she looked in her final months – sick and emaciated, not healthy and happy, as I had known her for most of my life. Clearly, my subconscious was a mess. So I felt relieved to hear a logical explanation for my inability to get past that moment. It wasn’t just that my heart was hurting, but that my brain wouldn’t let me move on.

Before then, I had understood a lot of things about grief – that it would leave me shipwrecked in anguish and that I wouldn’t be the same again – but it was only when I learned about flashbacks that I acknowledged that what I had been through was truly traumatic. My mum was sick for two years – a long time for the aggressive type of cancer she had. Watching her waste away slowly was agonising. In the last few months of her life, we were twice told prematurely that she had only a few days left and to say our goodbyes. Each time, she struggled on and defied the doctors’ expectations. Eventually, her body just couldn’t do it any more.

Linda Fairweather, 58, attended the Loss Foundation workshop after her husband of 31 years, Keith, died of throat cancer. She was struggling to cope with the painful memories. “I felt like I was going a little bit mad, because I used to suddenly go to a place and couldn’t pull myself back,” she says. “With the flashbacks, you get the images, the smells, everything. I would have moments where I would just flash back to certain parts of it. I could be really happy and feel like myself. And it would just drag me back down again.”

Since she learned how flashbacks work, hers have dissipated, although they haven’t stopped entirely. “They really upset me,” she says. “But I feel like I’ve got the tools to deal with them. I know what’s happening and what to do with it. I know they’ll pass. I try to give myself time.”

If you are experiencing flashbacks after the death of a loved one and it gets too much for you, you don’t need to sign up to a grief workshop. Langford recommends talking to a friend or a counsellor, or observing rituals that you did together, such as going for a walk to their favourite spot. “Those things are really helpful, because they can act as a reminder of what was good with the individual’s life.”

For people who are really struggling, eye movement desensitisation and reprocessing (EMDR) is one of the treatments offered by the NHS. Langford says EMDR “can help stimulate the brain’s processing of the incident, which can then lessen how raw the emotions are”. It involves recalling the traumatic memory while a therapist directs you to move your eyes from side to side, or taps your hand.

On my way home after that workshop session, various difficult memories I hadn’t thought about for a long time suddenly resurfaced, as if my brain had been given permission to open the floodgates. I cried hard that night. But since then I have stopped being haunted by my mum’s final moments.

Not that grief ever ends. You learn to exist with it. There is a stone in your heart. Sometimes, it is big; it rubs and makes you bleed. Sometimes, it is small and you can almost forget it is there.

I still think about that time, but the power has been taken away. My memories are no longer as visceral; I can look back with a sense of detachment. Now, I can focus on remembering my mum as she really was – a wonderful and caring person with a sweet smile, who loved her children more than anything.

Complete Article ↪HERE↩!

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How I learned to talk about death and dying

First step: Acknowledge it, together

By Steven Petrow

A serious illness is many things — terrifying, painful, life-altering. The prospect of losing a loved one, or your own life, becomes an unspeakable agony. It’s also isolating in a way I never could have imagined. I’ve been the one in that sickbed, and I’ve also done some time sitting beside it. I wouldn’t wish either experience on anyone.

Lately, however, I’ve been thinking about what memoirist Meghan O’Rourke has called “the long goodbye” and trying to focus on the one gift it does give us: the gift of time. Time to plan, but mostly time to unearth and process our feelings. And then, if we’re fortunate, to be able to share these deep-seated fears with those we love.

This is not easy. When my mother learned she had lung cancer several years ago, we both turned to humor to help absorb the meaning of her diagnosis and to deflect the pain. One afternoon, many months before she died, Mom said with a wry smile, “I think I’m really dying.” To which I replied, “You mean today? Because I’m going to the market, so if you really think so, I won’t shop for you.” “That’s hilarious,” Mom countered, a hungry smile now on her face. “What’s for dinner?” Very adroitly, pretty much reflexively, we had avoided the elephant in the room.

Mom’s health deteriorated over the next several weeks. Again, she raised the question of her death, but now without the smile. “Will dying be painful?” she asked. In that moment, I knew I needed to confront my own feelings about her mortality and not sidestep the conversation with facile banter.

I took Mom’s hand in mine and said, “Don’t worry, it won’t be painful.” I told her hospice had provided a “comfort kit,” which contained medications for restlessness, confusion, anxiety, sleeplessness, constipation and, of course, pain management. I could feel Mom’s hand relax. Finally, she said, with a palpable sense of relief, “Thank you.”

In the weeks after that, we began a new chapter. I hadn’t realized how much effort had gone into my denial. I thought about the many times I had said, “if you die …,” which denied what we both knew was inevitable. After I dropped the subjunctive and began to talk about when she died, a barrier was eliminated. She knew. I knew. Now, we knew together.

I don’t think Mom suffered in her final days. After she became “unresponsive” (considered part of “active dying”) I returned to that comfort kit at the direction of a nurse. I removed the liquid morphine and gently squeezed one drop, then a second into her mouth. When the end came a few hours later, my sister, brother and I sat on her hospital bed, holding hands with each other and our mother as she died. What a gift, I thought, as we helped her to let go honestly, openly, and — most importantly — together.

Three decades earlier, when I was newly in remission from my own cancer, I had so many worries — about recurrence, additional treatments, more surgery. But at its core the fear was always about dying, which I never acknowledged, which meant no opening for others to broach the topic. I tried hard to keep those anxieties buried away, mostly by taking anti-anxiety medications. I’d pop a Klonopin and for four hours I’d be “fine,” as I often repeated. Still, I felt detached from others, even myself, but in my mind, that was better than feeling. Or worse: talking about feelings with others.

I chose to be alone.

Every time when I returned to the hospital for follow-up labs and scans, I’d medicate. But drugs, it turns out, can do only so much. I’d still taste the fear in my throat, or notice the shallowness of my breathing. A few times I vomited — spontaneously — the associations too strong. No matter how hard I tried, I could not effectively lock away that demon, that fear.

Then I decided to volunteer at the cancer hospital that had given me so much, sharing my cancer “experience” with patients, which invariably included discussions of fear. I realized how helpful these conversations — about hair and weight loss, recurrence and remission, life and death — were to the patients I met in the hospital, either newly diagnosed or undergoing treatment. But these talks changed me, too.

For far too long, my fears had been caged inside me, dense and dark. Laura Wallace, a licensed clinical social worker whose practice focuses on transitions and loss, explained that acknowledging feelings of “loss and longing,” while deeply painful, is a much better alternative than anger, addiction and anxiety. Or denial.

Releasing these fears — into the rooms where I had these conversations, into the air outside the hospital when I would walk away — was liberating. Imagine a vial filled with dark blue worry. Release a drop into a small cup of water and it colors the water. Release another drop, this one into a gallon bucket, and it becomes nearly impossible to detect. By acknowledging and sharing my fears openly, I let them go and they began to dissolve. Eventually, I stopped taking those anti-anxiety medications.

In her recent memoir, “Going There,” journalist Katie Couric, whose husband died of colon cancer in 1998 at age 42, tells of feeling trapped between a rock and a hard place. “I was so worried about letting go of hope because I didn’t want Jay to spend whatever time he had left just waiting to die,” she wrote. “I think it takes extraordinary courage to be able to face death, and I think I was too scared, honestly.”

Couric’s words reverberated with me, especially as I’ve tried to take the lessons learned from my mother’s death, and my own illness: How to be present. How to balance today with tomorrow. How to find the courage to embrace what’s so often unspeakable.

A longtime friend, Barry Owen, succeeded in all three ways.

At 66, he revealed his pancreatic cancer diagnosis in a blog post. He knew, as did his husband, Dan, the unforgiving prognosis. (Stage IV pancreatic cancer has a five-year survival rate of 1 percent, according to Johns Hopkins Medicine.) “I have no illusions about this disease,” Barry wrote on his Caring Bridge blog, which was read by about 30 of his closest friends, including his two brothers.

Three months after his diagnosis, Barry pushed open the door to a conversation about dying. “Dan and I are starting to talk about planning, planning for my death,” he wrote. “This is not easy to write about.”

It was not easy to read about, either. But we joined the conversation with Barry and Dan, I hope, supporting them if not sharing their pain.

Barry did well enough for a while — long enough to celebrate his 67th birthday, to make a farewell tour to friends, and to enjoy the winter holidays. By spring, all that had changed. Eleven months after diagnosis, one of his caregivers posted the sentence everyone expected, yet dreaded. “So, yes, he is dying.” We understood. Barry’s followers made that final journey together with him.

During those final days I thought of “The Mary Tyler Moore Show,” one of Barry’s favorites, specifically the final scene where Mary, Rhoda, Lou, Ted and all the rest huddle, and walk offstage together, as one. It’s a tear-jerker, for sure.

We leaned in, through the Caring Bridge site. One friend acknowledged the heartbreak of losing Barry. His brother, Jamie, posted: “We all know the inevitable result, but it doesn’t keep me from becoming emotional every day.” I wrote that I’d burst into tears upon reading the news, but that I felt so deeply connected to his friends. Amid all this, a friend reminded us that Barry’s mantra had always been “Only connect,” which to him spoke to the importance of our relationships to help defeat “the isolation” — as novelist E.M. Forster put it — that keeps us apart.

I felt privileged to be among all these beautiful souls, so in touch with their feelings and able to express them. I thought then — as I do now — how rare this gift is. When Barry died, we held onto one another, tightly albeit it virtually. One friend posted, “Although I only know a few of all the friends around Barry, I feel part of you and share your grief.” Another wrote, “How terrible our loss.”

Complete Article ↪HERE↩!

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A good ending

End-of-life doulas are destigmatizing death to help the dying end their lives well

By Jacqueline Salomé

Piercing through the chaos of chance and unexpected plot twists that we encounter throughout our lives, there is one stark and certain truth: we’re all going to die.

Yet, our death-phobic society has taught us to fear the only thing we know for sure. Even talking about death evokes superstitious reactions, as if speaking the word aloud is a death sentence in itself.

Death has surrounded us during the pandemic, with millions tragically losing their lives to COVID-19 worldwide. Though we hear about death daily, most of us remain detached from the experience. The whole thing is a terrifyingly mysterious taboo.

Death doulas think we can do better.

As part of a burgeoning death-positive movement, end-of-life doulas support people on their journey toward passing away. They fill a key gap in the typical medical dying process by offering a simple, yet radical, kindness that asks people what it means for them to die well, and makes their vision a reality.

Sue Phillips signs her emails quoting author Haruki Murakami: “Death is not the opposite of life but an innate part of life.” It’s a guiding philosophy for many death doulas.

“We just allow people the space to fully experience what they’re going through,” says Phillips, a death doula in Hamilton, Ontario, who found her calling after retirement. “[We are] really just trying to help people not be as afraid.”

By providing non-medical support and companionship from terminal diagnosis to death, end-of-life doulas like Phillips help the dying clear their practical to-do list and inner consciousness so they can cross the threshold with as much ease as possible.

They encourage clients to plan for what they want their deaths to look and feel like. They assist with paperwork, funeral arrangements and celebrations of life, and offer respite relief to primary caregivers. And they normalize conversations on death and grief through death cafés—informal gatherings where people can talk freely about topics related to dying.

For Phillips, the heart of the work is emotional, guiding clients to say what they need to say, forgiving and asking forgiveness before it’s too late.

“That might be something that a family would turn to a [death] doula for,” she says. “That person is going to advocate for you; that person is going to get you the information you need, or that person is going to sit at your side and let you talk about your emotional feelings, what you’re going through.”

Death doulas are self-regulated through the End of Life Doula Association of Canada, where Phillips sits on the board of directors. The Association connects death doulas across the country, overseeing quality assurance, continuing improvement, and providing education and networking opportunities.

Because the field is not officially recognized, death doulas’ services are not covered by provincial or private health care plans and insurance. Though this gives them flexibility to offer personalized care, there can be cost barriers and little awareness of their offerings.

Yet, without death doulas, many people die unsupported, with their goals for a good death unexamined and unfulfilled.

In Phillips’ experience, most people want to die at home surrounded by their loved ones.

“That’s kind of how it goes. They want to die at home, then hospice, then hospital. Long-term care is like the final choice. They don’t really want to go there,” she says.

Although 87 percent of Canadians wish to receive end-of-life care at home, the majority die in hospitals. The situation has worsened during COVID-19, where the proportion of deaths in hard-hit Canadian long-term care homes has been much higher than the international average.

Phillips says most of her clients don’t want to suffer, either, preferring medical assistance in dying if suffering becomes unbearable. But the medical system often defaults to acute care, seeing death as failure and prolonging it against some people’s wishes.

When Chrystal Toop’s beloved Métis grandmother passed, she was buried with tobacco in her coffin. Toop was angry and confused. Because her grandmother was a smoker who died of cancer, Toop felt like she was being buried with a symbolic weapon.

Toop, an Algonquin death doula from the Pikwàkanagàn First Nation in Renfrew County, Ontario, didn’t understand the significance of tobacco at the time. Colonization, systemic racism, and the legacy of the residential school system—of which Toop’s great grandparents were survivors—took many aspects of culture and language away from her family.

“It was around the end of my twenties that I finally started to make the connections of culture and [the tobacco] finally made sense. What they had done was ceremonial, and it was spiritual, and to show her that she had a safe journey back to the sky world.”

Her grandmother’s death had a lasting influence on Toop, encouraging her to bring cultural practices and plant medicines back to Indigenous people through her decolonial death doula work.

As demand for Toop’s services increased staggeringly during the pandemic, she turned to her mentors to co-found the Indigenous Death Doula Collective, serving Hamilton to Thunder Bay, Ontario. To widen their reach, the collective created Indigenous death doula training for youth, which Toop says is the first of its kind in North America.

The wildly successful program intended to reach 20 youth, but has a waitlist of over 200, is informed by Toop’s personal philosophy that death work is life work that begins at birth. “Society is designed to kill us. It’s that genocidal reality of Canada for Indigenous people…. the reality is, we’re always fighting against our own early deaths,” she says.

What makes Toop’s death doula work unique is the fact that it isn’t only about guiding people to die well. Because the average life expectancy of Indigenous people is up to 10 years less than settler Canadians, her approach also relies on harm reduction strategies to fight against early death. “One of the things I say is that we have the right to die of old age,” says Toop. “That’s all we want. We want Indigenous communities to realize that fantastic reality of becoming an old person, because that’s not typical.”

At four years old, Kim Winnicky was choosing a casket and planning her funeral. But she wasn’t dying. Growing up with a funeral director father, she always felt comfortable knowing that death is a natural part of life.

“Holding space for all that is involved in the end of the dying process is really powerful work,” says Winnicky, an end-of-life doula and hospice volunteer in Whitehorse, Yukon. “I just feel called to it.” When Winnicky sits vigil at a person’s bedside as they die, she feels that power viscerally. “Sometimes the feeling is very calm … and sometimes it’s a feeling of fear and clinging,” she says. “My work is to ground into equanimity and steadiness … that seems to help temper those waves and just sort of bring this grounding radiance into the room.”

Winnicky treats the dying with healing touch—a therapy that balances a person’s energetic fields. Clients have reported profound impacts, including Winnicky’s own mother, who said it was more effective than morphine at controlling her pain from chronic obstructive pulmonary disease.

Simple physical touch can be the comfort that someone needs to release into a peaceful death—Winnicky has seen it firsthand. But during the pandemic, with visitor restrictions in medical facilities and care homes, many have died alone without any loving touch at all. “That breaks my heart for everybody in that situation,” she says.

Everyone’s idea of what it means to live and die well is different. But for Jody Roberts, a death doula based in Coquitlam, B.C., there’s one common thread: love.

“At the end of the day, nothing is permanent but love. We have to ask ourselves, did we love well and were we loved? Did we love ourselves and did we love ourselves enough?” says Roberts.

It’s an influential aspect of Roberts’ work, encouraging clients to engage in these deep emotional and spiritual reflections well before they die. One of Roberts’ clients was a lawyer struggling with losing his identity late at the end of his life—an identity tied up with the achievements that he worked so hard for, but that he couldn’t take with him. It seemed to make his transition uneasy.

“It’s why we need to loosen our attachments before the end and stay attached to love. You can take love with you everywhere, but you can’t take people or things,” Roberts says.

With the help of death doulas, she thinks Canadians are realizing that a better death is possible, and that it actually starts by living fully. And for the living, recognizing that grief is a manifestation of loving what you lost can be a powerful way of moving through the hard feelings. “It’s about loving fiercely every day,” she says. “And loving life so you can end well.”

Death is with us every day—it’s a fact of life. And it feels more present than usual, with the pandemic dragging on and an anticipated increase in cancer deaths due to the pause in elective screening procedures.

But, while death is inevitable, having a tumultuous and fearsome dying experience is not. Death doulas know that the final chapter of our lives can be magnificently powerful, if we embrace it.

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Mourning our parents can start before they die.

Here’s how to cope with anticipatory grief.

by Jay Deitcher

“It’s like you don’t want your grandkids to know you,” I said to my dad through the phone, my voice cracking. “It’s like you want to die.”

It was early in the pandemic, May 2020. My mom and dad were a pair of snowbirds, two months overdue to fly home from Florida to Upstate New York. At the time, there were no vaccines, no N95s, nothing but flimsy masks and social distancing — and hospitals piling up with dead bodies.

My parents had kept pushing off their return to New York, reluctant to bottle themselves in an airplane with the disease. But the Florida heat was rising, and after a couple months of boiling away inside their Bonita Springs abode, they decided to chance it. They were getting on that plane. And I was annoying them.

“We hear your concerns,” my dad assured me, and took a break from picking up my calls.

My dad is 84; my mom is 76. A decade ago, my dad was hiking; now he walks with a hunch and snails across the living room because his back throbs. They are going to die. Maybe not this year, maybe not next year, but eventually.

They seem okay with this. Their affairs are in order, their wills are ready to go, and they know the family won’t struggle financially without them.

But while they may have accepted the situation, I had not. I had never worried much about their aging before, but once the pandemic hit, death was in my face. I couldn’t stop catastrophizing. Even though my parents escaped the plane ride alive, they continue to roll the dice daily, roaming the halls of their retirement community maskless, eating in the dining hall and driving me crazy.

I am dealing with anticipatory grief, a natural form of grieving that occurs before a loss. It can precede the loss of a job, a house, a marriage, a dream, but it often occurs when a loved one is stolen by aging or disease. Even before the person dies, anticipatory grief can cause you to mourn the person they were, the change in your family structure, the milestones — births, bar mitzvahs and weddings — that your loved one will never witness.

You can’t help others if you are drowning in anticipatory grief, so, “You have to put your own [oxygen] mask on first,” said Mekel Harris, a licensed psychologist and the author of “Relaxing into the Pain: My Journey into Grief & Beyond.” “Anticipating a loss of a family member is exhausting mentally, physically, and spiritually. If you’re exhausted, it makes it difficult to be present for the moments that you do have with your loved one.”

You figuratively put on your mask by making sure your basic needs are met. Are you sleeping well? Eating well? Hydrating? Are you caring for your own physical and emotional health? Have you reached out for help? “We’re all in a situation we’ve never been in before,” Harris said. “It’s okay to raise your hand and say, ‘I’m struggling and need help.’ … You’ll be met with a lot of ‘me toos,’ because we are all walking through loss on some level.”

Harris recommends researching grief support groups, which you can find by reaching out to organizations like GriefShare or contacting community agencies, churches, temples, mosques and Chambers of Commerce. There are online support groups for every type of grief including anticipatory.

Soffer said groups and communities, like the Modern Loss one she established, allow members to surround themselves with people who are flooded with similar feelings to “lift each other up and pull each other through the muck.” She also finds it important to seek support from a mental health professional who can act as “an unbiased sounding board when you’re living in this whole space of impotence.”

To cope with the catastrophizing, Soffer recommends implementing mindfulness strategies to ground yourself in the present. One example is the 5, 4, 3, 2, 1 technique, with which you recognize five things you can see, four you can touch, three you can hear, two you can smell and one you can taste. But no coping strategy is perfect for everyone, Soffer said; it’s about finding out what works for you. “Do you need to call a friend? Do you need to bake something? Do you need to speak to your therapist or go to a hill and primal scream?”

It’s important that family and friends don’t minimize the feelings of someone who is grieving in this way, said Alua Arthur, a death doula and founder of Going with Grace, a death doula training and end-of-life planning and support organization. Avoid offering platitudes such as “but they’re here now” or “you can worry about that later.” Instead, validate their experience, and then work on “creating moments” to keep your friend or family member in the here and now, Arthur said, such as “going for a walk, getting a foot rub, going for a hike, sitting at a restaurant with food that they really enjoy.” Pick an activity that involves the senses, Arthur added, because the senses “know the past, but they cannot anticipate the future.”

Elderly parents should strive to be empathetic to what their grown children are going through, too, Harris said: “Regardless of our age, we all crave safety and security and support.” Remind your children that you are “safe today” and allow them to express their feelings openly.

If a person has suffered past losses, anticipatory grief can be amplified. Corinne Herrmann, 31, grew up in the Baháʼí faith, believing that death brings everlasting life and draws the soul closer to God — it is a transition to be celebrated. Still, she found herself bawling through movies about older characters losing mental and physical capacity. It isn’t her parents’ death she fears — it’s what might lead up to it, because she’s seen it before.

During Herrmann’s early 20s, she lived with and cared for her “sassy grandma,” who stayed active, reading and teaching classes in genealogy well into her elder years, until dementia stole her mind. Her grandmother died three years ago at the age of 96, and now Herrmann worries, “This is going to happen to my parents. I’m going to go through this again.”

“The moment that someone meaningful to you dies, you kind of enter into this new stage of waiting for the other shoe to drop,” said Soffer, adding that a lot of Americans may be in this stage, having recently experienced the death of a loved one because of the coronavirus pandemic.

Herrmann took notice of her grief — and took action. When her job teaching mathematics went virtual after the pandemic hit, she jumped at the opportunity to move back home to Kansas to spend time with her parents. She tries to tamp down her anxiety and accept their decisions: “I have to respect that even though I’m afraid of them getting older, they’re actually the ones who are getting older.” And for support, she turns to fellow members of the Baháʼí community. They pray together and share worries and resources. “You don’t feel like you have to carry that burden yourself,” she said.

As terrifying as anticipatory grief is, it can help us grasp for the moments we have with our loved ones, as Herrmann has. “Seek out ways to be present, spending that quality time while we’re all still here,” Harris said.

I am trying to handle my anxiety in a positive way. I no longer attempt to guilt my parents into cloistering away until an undetermined time when the pandemic finally passes. I bring my children to visit them numerous times per week, and when covid statistics spike, we put visits on pause and Skype frequently. We light Shabbat candles together weekly, teaching my children traditions that have lived in my family for generations so they can carry them into the future.

“I think that when you get to a point of acceptance, it’s the thing that enables you to experience post-traumatic growth,” Soffer said. “I think that it’s almost like a superpower, being able to live with an enormous amount of uncertainty.”

The other day, my dad told me that he is troubled that I am so concerned about his risk of being infected with the coronavirus, but he doesn’t worry about dying. While he and my mom make educated decisions to avoid the virus, he said, he’s more nervous about his kids and grandkids catching the disease than himself. “Passing’s inevitable. I’m thankful that I’m able to age.”

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Good End-of-Life Care Out of Reach for Many Black Nursing Home Residents

Palliative care can be a godsend in the final days of one’s life, but new research shows that Black and Hispanic nursing home residents are far less likely to receive it than their white peers are.

Overall, nursing homes in the Northeast provided the most palliative care, while those in the South provided the least amount of this type of care.

But in the Northeast and West, the study found, nursing homes that had higher numbers of Black residents provided less of this type of care. In all regions, the more Hispanic residents there were in a nursing home, the fewer palliative care services there were.

“Nursing home racial disparities are pervasive, and Black and Hispanic residents tend to reside in segregated, Medicaid-dependent, financially strained nursing homes, and also nursing homes are really an important end-of-life care setting,” said study first author Leah Estrada. She’s a PhD candidate in the Columbia University School of Nursing.

Prior to the pandemic, about 25% of deaths in the United States happened in nursing homes. In 2020, that number was likely higher, Estrada said. The United States is home to about 52 million adults aged 65 and older, about 1.3 million of which live in a nursing home at any one time. An estimated 56% will eventually need nursing home care, while 21% of residents in nursing homes are Black or Hispanic, the study said.

While Black and Hispanic nursing home residents tend to have poorer health, they are also less likely to get hospice care at the very end of their lives, receive worse pain management and are more likely to undergo aggressive treatment and hospitalization, according to the study.

Palliative care is an essential part of high-quality, end-of-life care, Estrada said. It’s specialized medical care focused on improving quality of life for people with terminal illnesses and is patient-centered and holistic, Estrada said. It might include spiritual and psychological care, as well as easing physical and emotional suffering.

To assess care in different regions, the researchers surveyed 869 nursing homes across the United States, meant to represent the approximately 15,000 nursing homes throughout the country. They studied nursing homes by the concentration of Black and Hispanic residents.

“My hope is that given that palliative care is essential at the end of life, it’s possible that more high-quality palliative care can be the missing link to achieve health equity in nursing homes,” Estrada said.

“Incentivizing some sort of payment options that increase palliative care services, it’s one way that can at least improve care in the nursing home for the residents in a way that is holistic and has been found to be cost-efficient in other mechanisms and settings,” Estrada said.

Vickie Mays is director for the BRITE Center for Science, Research and Policy at UCLA in Los Angeles and was not involved in the study. She said the disparity seen in this study may be a function of lasting differences in insurance and income that started earlier in life.

“You’re more likely to see in racial and ethnic minorities that the kind of insurers near the end of their life are going to be a function of the type of employment and resources they had earlier in their life,” Mays said. Examples include past employment that paid hourly wages and didn’t offer benefits, or not being able to buy long-term care insurance.

“At the end of their lives and when they are utilizing these care facilities, those earlier inequities get played out again later in what it is that they have access to,” Mays explained.

She added that it may be important to think about what the best practices are for end-of-life care. If it’s determined that palliative care is a priority, then standardizing levels of care similar to the way labor and delivery care is standardized for pregnant women and infants could be a solution, Mays said.

“If palliative care makes a difference, it may be that we need to determine that when people reach a certain stage of health deterioration, that they should be in a particular kind of environment in which those services are available,” Mays said. “It’s standardizing levels of care and determining that those levels of care should be there, regardless of whether a person has lots of money or they are being paid for by the federal government.

“One of the things to think about is that sometimes we see a behavior as being, in terms of that particular thing, an inequity, but what we have to think about is could it be prevented if we think about it much earlier,” Mays added.

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What Are Death Doulas?

by Monica Lozano

When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

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