[O]nly a tiny percentage of Canadians who’ve received medical assistance to end their lives has chosen to self-administer a lethal drug cocktail.
But that could change now that secobarbital — the drug most commonly used for assisted suicide in other countries — is available in Canada.
Secobarbital is considered the best way for suffering individuals who want to control the manner of their death as much as possible, including administering the medication themselves.
“It’s kind of the barbiturate of choice because (its) quicker onset and duration is such that the dying period is reduced,” said Dr. Stefanie Green, president and co-founder of the Canadian Association of MAID Assessors and Providers.
“Much of the other recipes cause an extended dying period to happen, which is not always successful.”
Health Canada reports that from June 2016 to June 2017 — the first year in which medical assistance in dying (MAID) was legal in Canada — a total of 1,982 individuals received an assisted death. Of those, just five were self-administered deaths.
Green said the unavailability of secobarbital may, at least in part, explain the small number of self-administered deaths.
In general, orally ingested drug cocktails present some difficulties that are not associated with those injected intravenously: they taste bad, they can induce nausea and vomiting, the patient can fall asleep before the entire dose is consumed, which can ultimately cause it to be ineffective.
“You want to mitigate those factors as best as possible,” Green said. “So if you’re going to choose to use a barbiturate and an oral cocktail, this (secobarbital) would be the best one.”
Among other things, she said secobarbital is more soluble than other barbiturates, meaning it can be dissolved in a smaller volume of liquid, thereby reducing the risk that patients won’t consume the entire dose.
Green expects that self-administered deaths will increase somewhat now that secobarbital is available.
“There are certainly a significant amount of people who want to be the ones to have the control, who want to be the ones with the medication in their hand, who want to say, ‘I’m going to take this to my backyard and drink it when I darn well please, thank you very much,”‘ she said.
The drug may be particularly helpful in rural or remote areas where it may be difficult to find a nearby physician or nurse practitioner willing to provide an assisted death, Green added. Individuals in those areas may find it easier to get a prescription for a lethal dose of secobarbital that they can administer themselves.
Because it is fast-acting, secobarbital may also make the self-administration option more viable in a province like British Columbia, where Green practices and which requires a physician to be present throughout the assisted dying process, even when the patient self-administers the medication. That was not feasible when the barbiturates used could take hours, or even days, to work, she said.
Secobarbital, once widely used as a sedative decades ago, has not been available in Canada for years. That it is now is largely due to Jocelyn Downie, a professor of law and medicine at Dalhousie University and a passionate advocate of medical assistance in dying.
When she realized few people were using the self-administration option, Downie said she explored ways to make secobarbital available. She discovered that the cost and time required to get the drug approved for marketing in Canada was a big obstacle so she found “an alternate path:” persuading a pharmaceutical products company to provide the active ingredients for the medication that can be compounded, or mixed, by a pharmacist to produce secobarbital.
Since the company doesn’t want its name publicized, Green said her organization is acting as “the middleman.” It will provide the necessary contact information to health care providers and pharmacists who are helping patients who choose the self-administered death option.
“For those of us in the field, it’s good news, it’s very good news to be able to offer this extra option to our patients, some of which we know will take it and we’ll be happy to provide a better quality product for them,” said Green.
Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.
[B]efore Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.
But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.
Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.
“She walked me through every phase,” Warren said.
Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.
The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.
‘Back to their roots’
Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.
“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”
Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”
Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.
Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.
“It’s creating a space of whatever the patient said they want,” Paulauskis said.
Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.
“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.
Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.
“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”
Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.
Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”
There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.
Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.
Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.
Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.
Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.
Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.
‘The personal touch’
Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.
Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.
“There had to be a better way,” she said.
Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.
“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.
At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.
“Your job as a death midwife is to be an advocate for that dying person,” she said.
When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.
Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.
She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.
“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”
Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.
Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.
As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.
“It was the most natural thing I’ve ever experienced,” Warren said.
Buddhist teacher Frank Ostaseski has been one of the leading voices in contemplative end-of-life care since the 1980s.
By Lion’s Roar Staff
[I]n this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.
[E]lizabeth George was “tickled” to see what came after death.
She knew what she wanted her death to be like and she wasn’t afraid.
Diagnosed with colon cancer in 2010, Elizabeth told a friend she wanted three things to happen when she died: A singing circle, for a few select people to be present, and for her body not to be “whisked” off right away.
“Elizabeth really wanted to have a good death,” recalls one of her close friends, Ruth Blaser.
A childhood experience with death may have been what made Elizabeth so particular about her own passing. She lost her mother at age 11.
“She felt like the family response had been extremely unhealthy,” says Emily Wilson-George, one of Elizabeth’s two daughters. “They basically took everything that had belonged to her mother out of the house within the week and never spoke about it. She didn’t want that or anything remotely similar.”
Three days before she died, Elizabeth met with two death doulas. Together, along with friends and family, they ensured her death would go as planned.
A home vigil was organized. Elizabeth’s body was not whisked off to the morgue or a funeral home. Rather, she was moved to her dear friend Joyce Bethune’s house, gently placed on a massage table in a room full of tropical plants and a water fountain — a place where she found peace.
Joyce Bethune, left, and Ruth Blaser stand where they held a home vigil for their good friend Elizabeth George in Regina. George passed away last January from colon cancer.
Elizabeth’s fearless and accepting attitude toward her own mortality is often the exception.
“When you talk to people about how they feel about their own death, it’s a bit of a mood killer,” says Wilson-George. “It’s not really considered an acceptable topic of conversation.”
But an emerging cohort of death doulas in Regina is bringing death, dying and grief out of the shadows and into the light.
“There seems to be more healing when we can be sharing through grief, sharing through death,” says Denise Seguin Horth, one of the death doulas who met with Elizabeth. “So many other cultures embrace death more.”
Seguin Horth trained to become a death doula in 2016, through Beyond Yonder Virtual School for Community Deathcaring in Canada.
During a 14-week online course, participants learn advanced planning, home funerals, post-death body care, end of life financial considerations, grief, celebrant skills, death care rituals and more. A practicum is recommended, but not required.
“I feel that people have been so distanced from death that grief is heavier. It’s almost like a secret … It weighs on you and it just keeps you anchored down,” says Seguin Horth. “When we can talk more about death and talk more about grief openly without the taboo, … it seems to help that energy flow elsewhere so that we can move on.”
Sharon Pulvermacher — who also met with Elizabeth — did her training in 2014. She has been fascinated by death and the stages of grief since Grade 12 when she wrote a paper on death and dying.
Pulvermacher says being a death doula not only gives the dying person and their families a safe space to express themselves, but it’s also an opportunity to share with them their end-of-life options.
She says many people don’t even realize it’s within their rights to take the body of their loved one home for a vigil or home funeral, if that’s what they want to do.
“It’s … giving them a few more ideas, a few more tools, that they can imagine a little bit more largely than what they would do otherwise,” says Pulvermacher.
Defining death doulas
Definitions vary, but the core role of death doulas is to provide comfort and support to the dying and their families. Death doulas do one-on-one sessions, home vigils, simply sit with the dying person in the hospital holding their hand, and more.
“All death doulas have different niches. For me personally, I feel drawn more to accompanying those who are dealing with grief,” says Seguin Horth, who volunteers at Regina Wascana Grace Hospice.
She works with a variety of people — those who may have lost a limb or a pet, recently divorced or, like Elizabeth, someone who is in the last days of their life.
Besides the practical services death doulas offer, such as planning home funerals or helping with living wills, they also act as a sounding board for people to express their fears and musings about death, the afterlife and more.
A death doula brings no emotional or personal baggage that a friend or family member might and allows people the freedom to express themselves fully.
Sharon Pulvermacher is one of a few death doulas in Regina.
Where it began
Phyllis Farley, a key U.S. figure in the birthing centre movement, attended an end-of-life care conference in 1998. At the time, she was a chairwoman at the Maternity Center Association, an organization devoted to providing high-quality maternity care. She realized the same hands-on help and emotional support women receive when giving birth is just as important during death.
“We’re more than willing to, and very happy to in many cases, celebrate the birth of a child. While the potential of connections and the wonderful things they might do is always there, we don’t know that, but yet we celebrate it,” says Charisma Thomson, a professor at the University of Regina whose research centres on the anthropology of death.
But we deal with death differently.
“Here we have an individual at the end of their life, who we should be celebrating because we know what they’ve accomplished,” Thomson says. “Yet it’s that moment when … people just turn their back on them and really kind of silence their voice.”
At 80 years old, Farley founded an organization called Doulas to Accompany and Comfort the Dying. The program taught doulas how to listen and relate to the dying person, as well as do more practical things like helping with a living will.
The field grew and made its way to Regina, where there are about 10 death doulas. Some charge for their services, some don’t. Every death doula is different, and every person who seeks their services is looking for different things.
For Elizabeth’s daughter, the death doulas were invaluable.
“I think that having the death doulas not only provided the ritual that allowed us to process (her death) better, but it relieved a lot of the pressure,” she says. Not having to worry about the practical and procedural aspects of the vigil meant she could focus on being with her mom and getting closure.
But for many, the response to death may be much like when Elizabeth’s mother died — pushing death away.
Thomson traces society’s shift — from direct involvement in what happens to the body after death, to the current very institutionalized process — back to the Civil War in the United States, when embalming became common practice.
“You have Dr. Thomas Holmes during the Civil War starting to use embalming to send the soldiers back home … Once we start to add this clinical aspect to it, people I think believed it was beyond their abilities,” says Thomson.
As embalming became more popular, families sought professionals to do it — taking aftercare out of the hands of the family.
Around the same time, society decided priests were not qualified to declare time of death, and from then on only medical specialists could. Thomson says this shift also pushed death closer to the clinical realm rather than a personal one.
“We view death, or in North America anyway, … as though it is an illness or a disease or something that we can overcome with technology and science,” says Thomson.
And today, death happens in a hospital more often than not. When somebody dies, their body is typically moved to the morgue or the crematorium swiftly, giving family and friends little time with the body.
Bethune remembers a different time when home vigils were common.
“There was time for people to say their goodbyes and the whole process was a natural process,” she says. “I think we’ve just gotten so far away from that.”
She says having death doula services to help with things like home vigils or simply talking people through death is essential.
“It means that we don’t push our grief down into our subconscious, into our bodies. It means that we deal with it, that this is a natural part of life,” says Bethune.
Elizabeth wanted her family to have the time to say goodbye. So instead of denying the inevitable, she met it with playful curiosity.
“I know it sounds strange, but I’m a bit tickled at what’s coming next,’ Elizabeth told Seguin Horth, who describes that approach as beautiful. “She went past the fear.”
Denise Seguin Horth works as a death doula, and is shown standing at Riverside Memorial Park Cemetery. Death doulas support people in the process of dying.
During her meeting with the death doulas, Elizabeth was asked about her belief system and what she wanted her friends, family and the doulas to do when she died. According to Blaser, they also asked her what she imagined death to be like — a bold question friends and family might not feel comfortable asking.
“It was like mom didn’t have any doubts about what the death doulas were about,” says Wilson-George. “I was sitting there being like, who are these people? They’re sitting in on what’s a pretty personal time.” But in the end, she was grateful for their role in her mother’s end of life.
When the time came, Elizabeth’s vigil lasted a full 24 hours.
Someone from Alternatives Funeral & Cremation Services moved Elizabeth to Bethune’s home from the hospice, which she had entered just five days earlier. With no official certification or oversight board, death doulas are restricted from physically transporting a body.
“We sang her out of hospice with a favourite song of hers, and she had a quilt that had been made specially for her, draped over her,” recalls Pulvermacher.
Then they sang her into Bethune’s home where Seguin Horth and Pulvermacher positioned her body on a massage table and placed ice packs around her — looking after the practical and hygienic aspects of the vigil. They also made sure the family knew what to expect in terms of how the body would act in the hours after death.
A few close friends and family stayed the entire time. Others came and went to pay their respects. More songs were sung and memories of Elizabeth shared. Wilson-George remembers the feeling in the room as surprisingly intimate and radiantly positive.
For Blaser, the process with the death doulas helped her prepare.
“When Elizabeth died, I (felt) a sense of peace that we really accompanied her well and that it was her time to go,” she says. “That doesn’t mean that I don’t miss her. I do. But it’s not a wrenching kind of grief.”
For Emily Wilson-George it meant closure. After having seven years to imagine what her mother’s death would be like, Wilson-George went through so many different kinds of dread. The death doulas, along with friends and family helped minimize that fear.
“I think that they way that we managed to honour her death was something she would have approved of,” she says. “The feeling in the room that evening with the death doulas … it was so positive.
“I’m grateful to them for creating the space, for creating the opportunity.”
[A] lot of Ron Fleming’s fellow soldiers spent the last five decades trying to forget what they saw and did in Vietnam. Now 74, Fleming has spent most of that time trying to hold on to it. He has never been as proud as he was when he was 21.
“I take issue with those who say we lost. We didn’t lose that war,” he said, sitting on the edge of his hospital bed at the San Francisco VA medical center. “Everywhere I went, we literally kicked the crap out of them.”
Fleming was a door gunner in the war, hanging out of a helicopter on a strap with a machine gun in his hands. He fought in the Tet Offensive, sometimes 40 hours straight, firing 6,000 rounds a minute. But he never gave much thought to catching one himself.
“You see, at 21, you’re bulletproof,” he said. “Dying wasn’t on the agenda.”
But now, it is. Fleming has congestive heart failure, arthritis and breathing problems. He often lands in the VA hospital with asthma attacks, and the palliative care team visits him regularly. He thinks about death.
“I wish it’d get off its ass and come on me. I’m sick of this crap,” he said, as his heart rate monitor ticked up. “You see, dying’s the easy part. Living is what’s hard.”
Fleming has had trouble holding down a job since he got back from the war. He had a girl he lived with for 10 years, but they never married, never had kids. He lives alone in Oakland now. He says he angers easily and is always hypervigilant. About 10 years ago, he was diagnosed with PTSD. More than anything, he says, he suffers from a “rotten outlook” on life.
“Sometimes I think that now I’m being paid back for all the men I killed,” he said. “I killed a lot of them. More than I can count.”
Unlike Fleming, some Vietnam vets don’t find out they have PTSD until they have just months or weeks left to live. Symptoms of terminal illnesses, like pain or breathlessness, can trigger flashbacks, making vets feel as threatened as they did on the battlefield.
“The war memories start coming back, they start having nightmares,” said VJ Periyakoil, a palliative care physician at the VA in Palo Alto. She says opioid medications, like morphine and oxycodone, that are often used for treating pain and breathlessness can make PTSD symptoms worse.
“The side effect of those medications, they make you fuzzyheaded,” she said. “Your defenses that you use to cope with the PTSD, which might help repress a lot of the difficult memories, that coping strategy starts to come apart.”
She has had patients tell her: “I would much rather tolerate the physical pain, the cancer pain, than take opioids and my defenses crumble.”
Some vets see their pain or PTSD as retribution for their work in the line of duty.
“Sometimes I’ve had patients refuse medications that might ease their experiences because they feel that they deserve to suffer,” Periyakoil said. “This is redemptive.”
The best thing to do in these situations can be to stand down, she said. With weeks left to live, there isn’t enough time to resolve the mental anguish, and staff have to let patients set the pace and tone for their care.
But doctors and nurses, just like soldiers, hate doing nothing.
“We talk about the moral distress that we have sometimes about really knowing that we’re doing the right thing for this individual, so that we can be present for their suffering, the way they need to do it,” said Patrice Villars, a hospice nurse at the San Francisco VA.
For Ron Fleming, death is still likely a couple of years out. His doctors have been begging him, gently, to consider mental health counseling or antidepressants. But he has refused.
“I don’t want to take psychiatric drugs. The vets call them the happy pills,” he said. “I don’t want any of those, because they change you. I don’t want to change.”
He’s not sure if he deserves to be happy.
“That I don’t know,” he said.
His pain is what connects him to the past. Fleming was awarded 18 air medals for acts of meritorious achievement and heroism. The loss and grief he experienced in Vietnam are woven into the same memories of victory and glory. He doesn’t want treatment that might make that go away.
[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”
I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”
There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.
For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.
The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.
The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”
E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”
In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”
In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.
Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”
Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.
The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”
But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.
To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”
