— Most people associate the word doula with the beginning of life, not the end of it. But end-of-life doulas have become trusted sources of support.
Ed Nolley on his favorite bench, honoring veterans, at Gilchrist hospice.
By Christianna McCausland
When Ed Nolley arrived at the bedside of the 95-year-old woman, she was actively dying. Given her advanced age, she had no friends and few family members left to lean on. Her daughter, who lived on the West Coast, was rushing back to Baltimore to be with her, but time was short. In the meantime, the nursing home reached out to a social worker at Gilchrist, one of the largest providers of palliative care in the region. They sent Nolley, a volunteer end-of-life (EOL) doula, to keep vigil with the woman in the daughter’s absence.
“As soon as I arrived at her bedside, the nurse called the daughter, who was stranded in Chicago, and let her know that ‘a young man was sitting with her mom and would stay with her until she arrived,’” says Nolley, who, at 77, laughs at the description. “The mother did not make it before her daughter arrived, but I stayed at the facility until she did. The appreciation was such that I will never forget.”
When Nolley tells friends at parties that he’s taken up hospice work in retirement, “people just scatter,” he says, wryly. While it may not make him popular socially, Nolley says working with people at the end of their lives is extremely rewarding.
“Hospice is not a dirty word,” he says. “Hospice helps patients and family members go through the dying process in the way that that person and the family want them to go. To go in the way you want to go is a beautiful thing.”
Most people associate the word doula with the beginning of life, not the end of it. If you have any familiarity with the term doula at all, it is likely a birth doula, a person who provides support before, during, and shortly after delivery. This nonmedical care may involve assisting with breathing and massage or acting as an intermediary between the person delivering and medical providers.
But in the past few decades, the doula world has exploded. There are now postpartum doulas, transition doulas (to assist during gender-affirming transition), abortion doulas, and fertility doulas. Doulas can be paid or, like Nolley, work as volunteers. EOL doulas, who emerged in their modern form in the 1990s, “are non-medical companions to the dying and their families,” according to the End-of-Life Doula Council.
In the first half of the last century, the vast majority of Americans died at home. Fast-forward to the 1990s and that trend reversed, with most people dying in some sort of facility. That’s created a society so distanced from death that we no longer understand how to offer support to the person experiencing it and their loved ones.
“We have generations of individuals who haven’t seen a loved one die at home,” says Douglas Simpson, executive director of the International End-of-Life Doula Association (INELDA). “That creates a culture where we do not talk about death. So how do we normalize dying? With more knowledge, individuals can have complete control over how they die.”
Nolley was drawn to eldercare after leaving a career in banking—he was senior vice president at Wells Fargo—and the U.S. military. Growing up, he worked during the summer as a nurse’s orderly at Keswick, a senior care facility. It was there he first encountered a death doula and was taken by the work. In retirement, Nolley became one of the approximately 60 volunteer EOL doulas at Gilchrist.
“A doula is a person who has a ministry of presence,” Nolley explains. “Presence in terms of the patient, presence in terms of the family before and after. We do not administer medicine; we provide peace of mind and assurance to the patient and family that there is someone there.”
How does that play out practically? Typically, a doula is requested to provide company to a dying person so that person is not left alone if, for any reason, the family isn’t present. Perhaps their family is worn out from keeping vigil and wants to feel comfortable knowing their loved one has someone with them while they get something to eat, catch a quick shower, or go home to get some sleep; perhaps the family does not live locally or is estranged; some people simply have no family left. Whatever the reason, “I do not believe anyone should die or experience dying alone,” says Nolley.
“WE HAVE GENERATIONS OF INDIVIDUALS WHO HAVEN’T SEEN A LOVED ONE DIE AT HOME.”
Depending on their training and the person’s wants, some doulas may do a project to draw a patient and family together around happy memories, like organizing photo albums. Others might offer guided meditation, information on funeral needs or, if the dying person wants a specific ritual at death—perhaps something as simple as a piece of music playing in the room—the doula may organize it. But being present is fundamental to anything else a doula can do.
Wendy Kobb is a clinical social worker who has worked at Gilchrist for 17 years and does facility care at regional nursing homes and assisted living centers. Kobb explains that when clinicians determine a person has a week or less to live, an impending death protocol is put in place, which includes visits from staff—nurses, clergy, social workers—every day, and can include a volunteer doula.
“Particularly in the facilities where I work, they aren’t living with family, so the peace of mind having a doula there provides is a great comfort,” she says. “Sometimes it’s more about the family than the patient.”
If it’s an inpatient visit, Nolley first goes to the nursing station, where he’s briefed on the patient’s medical condition and any specifics about them. Is the person a veteran? A musician? A sports fan? Does the family say the person appreciates touch and therefore may want their hand held? Would they enjoy being read to? Are they religious?
“Then I go into the room and introduce myself and explain that ‘I’m going to be sitting with you,’ even if the person isn’t awake,” says Nolley. “The sense of hearing is the last sense to go, so I always believe they can hear me and are listening.”
Ironically, Nolley says he “tries to keep it light,” maybe talking to the person about where they went to high school or their military service. (A veteran himself, Nolley takes a personal interest in ensuring veterans’ wishes at end-of-life are honored.) If it’s late at night or in the pre-dawn hours, he’ll dim the lights, turn off the television if a family member left it on earlier in the day, and just stay in the stillness.
“When you are sitting with a person, you are totally engaged with them,” he says. “You aren’t watching TV; you aren’t scrolling your phone. It overcomes your brain and your heart.”
Most of the people Nolley sits with are elderly, though he has done a few visits with pediatric patients. He admits it’s harder when a patient is young, but his intention is the same. “The mindset is always, ‘I’m going to sit with this person to help them make this transition in a positive way.’
“It’s an amazing experience, done right, to sit with a person who is dying,” he says.
There are organizations that help people get comfortable with that experience and the doula role. INELDA is a member-based nonprofit that offers EOL doula training and advocates for the calling. Simpson explains that there’s no magic to what a doula does.
“This work has been happening for eons, but then we industrialized birth and death and took it out of the home,” says Simpson. “Now we’re bringing it back.”
It’s not incidental that Simpson references birth and death in the same breath: EOL doulas emerged from the birth doula movement. In the 1960s there was a backlash against the highly medical interventionist approach to birth, which led to the growth of midwives and more natural birthing practices. The hospice movement also gained steam in that era when a nurse, Cicely Saunders, opened the first hospice in 1967. While the origin story of EOL doulas is more a complex web than a linear timeline, a birth doula named Phyllis Farley is credited with conceiving of the first volunteer death doula program at a NYC hospital in 2001. Elisabeth Kübler-Ross, author of the groundbreaking 1969 book On Death and Dying, and former hospice nurse Deanna Cochran, were also influential in the death doula movement.
Birth and death are the two most important and inevitable events in a human life and have much in common. And just as a birth doula has information and experience to share, part of what EOL doulas bring to the bedside is knowledge about death and dying that can be comforting. While it may be easy to think an EOL doula is depressing or macabre, no one would ever recommend someone give birth alone, ill-informed, and without support—why should death be any different?
“IT WAS LIKE THE QUIET JUST BEFORE A SNOWFALL.”
Simpson learned about EOL doulas from a midwife who assisted at the birth of his son. That, combined with being present at his own father’s death, lit the spark that informed his engagement with INELDA.
“I remember the quiet peacefulness,” Simpson recalls of his father’s death. “It was like the quiet just before a snowfall.”
Like Nolley, he struggles to put the experience of being with a dying person into words. “By being present you are honoring that person,” he says. “It’s an honor and it is powerful. I can’t wrap words around the value of it.”
To excel as an EOL doula, Nolley says a person needs to be comfortable with being in the presence of active death, but they also need to be comfortable with family dynamics. Relatives bring plenty of baggage to the deathbed and it’s up to the doula not to judge or interfere, only to keep the peace so the person passing has the calm they deserve.
Compassion. Presence. Calm. Intuiting needs. They’re hard skills to teach, but many are trying. INELDA offers a basic-training program that lasts 40 hours. Simpson says they’ve trained over 5,600 people since INELDA formed in 2015, 155 in Maryland. At Gilchrist, training occurs over two weekends and it is preferred that doulas have documented time doing home visits with hospice patients prior to the course. It’s impossible to know how many active EOL doulas exist, as there is no official, universal accrediting body (though the National End-of-Life Doula Alliance has created best practices and proficiency assessments).
Simpson says if someone is looking for an EOL doula, make sure the person can document they’ve been doing the work for several years and that they have some form of training. The doula also needs to be a good fit for the personalities of the dying person and the family.
Kobb says that most of the staff and volunteers at Gilchrist are people who have experienced a death—maybe a peaceful one, maybe one less so—and were inspired by that to get into this work to ensure that others have the best experience of dying possible. With a doula, the vigil of dying can have some peace, dignity, even humor. Kobb says the doula facilitates whatever will make the person or the family comfortable in that moment, whether it’s talking about their career or family, listening to music, reading from the Bible, or reading from the latest bestseller.
“Hospice is very interdisciplinary, we all have our roles and we’re all connected; the nurses have the clinical piece, the social workers have the emotional piece, the chaplains have the spiritual piece,” says Kobb. “What I’ve found is that doulas get to focus on the joy.”
Nolley is a pretty joyful person, jovial and chatty. What he’s learned from being present with so many people at the end of life is not surprising but still a good reminder. “I have come to realize the value and importance of each day we have,” he says.
What might surprise people, however, is his lesson that dying should be—and can be—a positive experience and the fitting ending to a life well-lived.
What counts as a good reason to die? When does a person’s desire to die make sense and when does it not? When should we allow a person to hasten her own death? There is a lot of disagreement about questions like these. Some of us think that death is something no one should ever want for themselves—wouldn’t that be suicide?—and that we should hold on to life for as long as possible, even in the face of severe illness and suffering. Others think a person can reasonably want to die when it is the only feasible way to end severe suffering or to prevent severe suffering that is very likely.
Some think such questions are simply misplaced: anyone of sound mind should be able to choose when she dies, since it’s her life to live or not. But should we—may we—ever seek to die as a way of shaping the narrative of our life, choosing a time and a place that marks our lives as complete? Faith Sommerfield—who died by her own choosing at a Swiss end-of-life clinic—thought that we should. Her story cuts to the core of our ideas about the value of life and the conditions under which death looks reasonable, where wanting to die is understandable. It raises difficult questions about the authority we should have over our own lives and how they end, the importance of living a life in accordance with our plans for it, the considerations we make concerning others who are affected, and about what it is to die well.
Faith died by voluntary euthanasia at Pegasos, one of several Swiss clinics that provide euthanasia for nonresidents, on September 27th, 2022. She was 82 years old. Prior to her death, she had what most of us would regard as a good life—even, viewed objectively, an enviable one. She had children and grandchildren; she had friends; she lived in a spacious apartment in Greenwich, Connecticut. She was highly educated—it’s said that she spoke French like a native Parisian—active in her community, and well-off. For her age, she was healthy and relatively active. Sure, she had some mostly minor aches and pains. She’d had a hip replacement in the past and also bilateral knee replacements. She wasn’t as steady on her feet or as active as she wanted to be, but she seemed to cope. At least on the surface, she seemed happy and fulfilled. Given the evident fullness of her life, it might not be immediately apparent why she would want to orchestrate her own death.
But she did want a death of her own design. Months in advance, she wrote to Pegasos to request their help. Pegasos works some with Swiss clients, but also with people from other countries who are seeking end-of-life interventions but can’t get what they want at home. It’s legal in Switzerland, though still a bit controversial, for non-residents to access medical aid-in-dying (MAiD) or, as they call it, voluntary assisted dying (VAD), through clinics like Pegasos.
In her letter, Faith described her life history and her reasons for wanting to die. “My life,” she wrote, “according to my personal criteria, is completed.” What did that mean? What criteria were those? Faith explained that she had done the things she’d set out to do in her life, fulfilling the purposes she had set for herself. She seemed to regard her voluntary, chosen death as “celebratory,” the culmination of a life well-lived—or at least, lived as well as she could.
Why Switzerland? MAiD is legal in 10 states in the US plus the District of Columbia. Oregon was the first, in 1997, followed by Washington; New Mexico was the most recent state to legalize it. But Faith lived in Connecticut, which despite considerable legislative activity, hasn’t legalized MAiD. You might think she could simply have traveled to another state, like Oregon or Vermont, but that wouldn’t have worked, since until recently, all of the places in the US that had legalized MAiD imposed a residency requirement. That has changed in Oregon as the result of a lawsuit claiming that the residency requirement in the Oregon Death with Dignity Act was unconstitutional, an action which was soon followed by Vermont; it is possible that as MAiD becomes legal in other states, residency requirements won’t be built in.
That still wouldn’t have been much use to Faith, however. All of the jurisdictions that permit MAiD in the US also require that the recipient have a terminal illness—something like cancer or amyotrophic lateral sclerosis (ALS)—that makes it likely that they’ll die within six months. Faith had some chronic pain because of arthritis in her spine, one of the knee replacements that went bad, and a mild heart condition. But none of these things was likely to kill her any time soon.
That’s why she went to Switzerland. Multiple European countries permit (or will soon permit) aid in dying, including the Netherlands, Belgium, Luxembourg, Germany, Austria, Italy, and Spain, in addition to Switzerland, as well as Canada, New Zealand, and Australia. Some of these places allow aid in dying for people who do not have a terminal illness. The Netherlands requires a person to be suffering unbearably and intractably from some illness, though it could be one that isn’t necessarily life-threatening, like fibromyalgia, or even a chronic psychiatric condition, like serious refractory depression. The Netherlands has also considered extending aid in dying to people who are simply “tired of life.” Belgium already explicitly allows aid in dying for that reason. Switzerland is perhaps the most liberal jurisdiction of all, since it has no specific requirements about when it’s permissible to help another person die. It’s simply not a crime in Switzerland to help another person end her life, as long as it is done in good faith and without the prospect of significant personal benefit. That’s why Faith went there.
There are other differences with the US. Canada, Switzerland, and other European countries that permit MAiD all allow both physician-assisted suicide and voluntary euthanasia; in the US, only physician-assisted but self-administered dying is allowed. All 11 US jurisdictions require a person to take the lethal medications—often a compound of as many as five different drugs prepared by a pharmacy—on their own; they must swallow the liquid, or push the plunger to put it through their feeding tube, or in a newer form of administration, push the plunger on a rectal catheter. Voluntary euthanasia, on the other hand, means that someone else administers the drugs, often intravenously. In places that allow both approaches, true of most jurisdictions outside the US, the vast majority of people prefer IV administration (more than 99 percent in Canada), because it is faster, more certain, much less likely to have side effects.
That’s what Faith wanted, something fast, easy, and foolproof. Pegasos reviewed Faith’s case. There were some interviews. But, ultimately, they agreed; she paid the hefty fee and made her appointment.
In July, a few months before her trip to Switzerland, we met with Faith. Both of us (BMK and MPB) are trained in philosophy and have written about end-of-life ethics; one of us, BMK, is a practicing psychiatrist too. We wanted to get a sense from Faith of how she thought about her decision. But before we met there were some conditions that had to be hashed out. Faith was nervous. She wanted assurances that we wouldn’t use the interview to try to dissuade her. She also wanted us to promise that we wouldn’t use a psychiatric lens to pry up something—a hidden history of mental illness, mainly—that would make her look incompetent and preclude her from carrying out her plan. She wanted to see the list of questions ahead of time. We agreed.
We met by Zoom. We found Faith, tastefully dressed, wearing just the right amount of jewelry, seated in her impeccably decorated apartment. We started with the big question: Why? She said she thought that we all get to choose the purpose of our lives: “Life is such an incredible gift. In so many ways, we are able to shape our own lives, sometimes our own destinies. It’s our responsibility, depending on who and how we want to be, to give our lives as much meaning as possible.”
Faith had admittedly done a lot with her life: she graduated from Smith College and went on to become a fashion editor for Harper’s Bazaar, a public relations director, and a successful interior designer. She married at 25, already afraid at that time that she would become “an old spinster,” but divorced within a year; she remarried shortly to a man 12 years her senior. They raised two children, moving from New York to Greenwich when they were still young. One of her children later described this relationship as difficult, indeed “horrible.” Her husband eventually developed Parkinson’s, and after he became symptomatic, he was removed to an alternative living arrangement. Faith met another man whom she would describe as her “life partner,” although they were only together for six years before he died. After his death, she remained close with his two children, recognizing them as her “chosen family.” After he died, Faith met someone she jokingly called “Mr. Wednesday Saturday” after the days they would spend together; he remained with her until the end of her life.
Faith had inherited a substantial sum of money from her parents, and her mother had given her one directive about what to do with it: “Start a foundation.” So that’s what Faith did. She began to build an organization devoted to end-of-life issues: the Completed Life Initiative, or “CLI” for short, something she would come to see as her crowning achievement. CLI came into being in 2019, just before the 2020 COVID-19 lockdown, so its work has been conducted largely online. Nevertheless, it has assembled a board of academics, physicians, and attorneys who are experts in end-of-life issues (including one of us, MPB).
CLI has a talented staff and connections with other end-of-life organizations. It holds an ongoing series of talks, panels, forums, extended conferences, and other programs. These draw a vibrant online audience, including other people who are exploring how best to approach their own deaths. The goal of CLI, its website says, is to promote new ways of thinking about mortality—to encourage others to see death not merely as a defeat at the hands of some terminal illness, but as a triumph, if it occurs at a time and in a manner of your choosing, in response to the sense that your life has served its purpose. This is just what Faith chose for herself. Seeing this organization bloom was the culmination of her life, she insisted—the completing factor, the goal toward which she had been working all along.
This was quite an achievement, we thought. Even so, we couldn’t help but wonder, why now? “Why not now?” Faith responded. Okay, but why not wait a little? Faith scoffed: “There’s always going to be something that you wish you had waited for. … You can’t help that. I could postpone, but I don’t think it’s possible in any life to complete every thought, wish, desire, activity, or whatever. I can be sorry about, I am sorry about, a lot of things that I haven’t been able to complete the way I hoped. But I can radically accept the fact that I’m not going to be able to do them.”
Faith worried some about pain and suffering. As she described her thinking, part of having a good death was avoiding pain and discomfort that didn’t serve a purpose—they could be borne for a good reason, but it didn’t make sense otherwise. “I’d always thought about suffering at the end of life. I had a lot of thoughts about the non-necessity of suffering at the end of life. I used to get very upset when I read about what I saw as terrible deaths.”
Even more important than suffering, however, was the risk that she would not be able to function in the ways she was used to doing. She wanted to avoid a scenario in which “I’m living a life that doesn’t serve me and which is without purpose. Other people might be perfectly happy to lie in a bed for years and years and have their needs met. If people are able to do that, and that’s their desire, that’s fine.”
Faith placed great stock in her appearance and her fitness, and was vexed by the limitations of age. Perhaps there was some vanity in this—even in the days before her death, she was abstemious with food and drink, worried that she would gain weight. Her personal chef prepared dinners consisting mostly of broccoli, and only three weeks before her trip to Switzerland, she declined to have a glass of wine during one of the biweekly Zoom-dinners she’d been having with one of us (MPB) because she didn’t want to gain weight. (Faith was 5’2” and did not allow her weight to exceed 96 pounds.) But more important to her thinking was the possibility that something catastrophic would happen. “I am troubled by the fact that I fall a lot,” she said. “I don’t feel comfortable being outside on the street or even in lots of people’s houses and for me that’s a really big deal.” She was, she said, “in terror of being just one fall away from not being able to have the death I desire.”
It’s easy to underestimate how much the risk of falling mattered to Faith. One close associate—another bioethicist—who attended a farewell luncheon held just before her trip to Switzerland related that, after the lunch, Faith had almost fallen down the six stone stairs outside the restaurant. He managed to catch her before she tumbled, and in that moment appreciated, for the first time, what a devastating effect a fall could have had and how it would have changed everything for her. Faith, though, knew that falls are a major cause of worsening disability in the elderly. She was determined to avoid that all-too-common scenario. There was, she said, “an enormous satisfaction in knowing that I don’t have to worry about what could hit me or what could happen to me or how I could suddenly not be capable of doing what I’m doing.”
Both of Faith’s biological children were particularly disturbed by Faith’s plan. They urged her to get a trainer to help with stability and strength and perhaps a nutritionist to eat a more balanced diet. They discussed whether mental illness was playing any role. Did she have OCD? Or an eating disorder? Why did she bring up the prospect of her own death so often, even with people who didn’t seem to want to hear about it? What about that early diagnosis of bipolar illness, for which she’d been treated by a psychiatrist for many years, and a suicide threat she’d made after the death of the man she’d recognized as her life partner? Faith described herself as a “control freak,” but mental illness was not the way Pegasos saw it when they reviewed her records. In the end, even her biological children, those most distressed, agreed that her final decision was made with a “relatively sound mind,” though they themselves resented the decision and the almost flippant way Faith let her family know: “I won’t be around in a year—what do you want from my apartment?”
For Faith, then, the decision to end her life seemed to depend on a simple calculus: the purpose of her life having been achieved, she merely needed to weigh the risk that something would happen to make her die badly—dependent, bed-ridden, unable to do things, in pain—against the value of a little bit more time. Life wasn’t bad for her; quite the opposite. But life wasn’t, she thought, something worth living in its own right, just for its own sake. And traditional pleasures, like time with family and friends, pursuing hobbies, experiencing beautiful things, didn’t matter additively: more of them wouldn’t make her life go better. At least, they wouldn’t matter enough to run the risk that things would go sideways. She recognized that by getting euthanasia she was giving something up. In a prerecorded lecture, delivered posthumously to CLI at its fall online conference, she said, “I don’t know, but I believe that I’m choosing to give up some good years of life. But life is only life if it is able to be celebrated and valued. The life of someone with terminal illness, cancer, ALS … I don’t know. If I continue to live, I’m really taking a chance. I don’t want to do that to myself.”
We made our own trip to Switzerland before Faith did. We had already planned to present a paper at a meeting of the International Association for Bioethics there, and that meeting happened to be in Basel, close to Pegasos. Faith offered to put us in touch with Pegasos so we could see the facility and find out about the procedures they use. After a flurry of emails, arrangements were made; the clinic’s director would pick us up at our hotel in Basel. The plan struck us as somewhat surreal. We would visit Pegasos and then head to a local Spanish restaurant for tapas, where our host had arranged for a private room so that we could have an unfettered conversation.
Both of us experienced a flurry of anxiety before he arrived: getting whisked away by someone we’d never met, whose profession was helping people die? Was that entirely safe? But first impressions were reassuring. The director arrived in an old Volvo station wagon—exactly the car you might expect—wearing a linen tunic and Birkenstocks (also what you might expect), bearded, brimming with energy and solicitous good cheer. Like a countercultural and less rotund Santa Claus, bearing strange gifts.
After a quick trip through the city, marked by lively conversation about the difference between Swiss and American democracy, we left the freeway, picking up a little back road that sidled up against a forested stretch of the Jurassic Hills. Then, after a few miles, to our dismay, our host turned away from those hills into what had been a small medieval town on the edge of Basel. We were now confronted with an aging industrial park. The road in was dominated by piles of asphalt to be melted down at the recycling facility just to the right. Pegasos itself was located in a converted textile factory, later transformed into a photographer’s studio. Next door was a body shop with the remains of old BMWs sitting out front; our host had done his best to dress up the setting by wrapping a few of the most unsightly hulks in silver tarps. Faith, we thought immediately, would hate this. It was a far cry from Greenwich.
Our host seemed to notice our disappointment. He explained that Pegasos had struggled to find a facility that would permit its work; not many landlords would tolerate an end-of-life clinic on their premises, after all. But he and his staff had made every effort to make the interior of the place appealing: there was soft lighting, comfortable chairs, soundproof panels on the walls, a nice stereo system, plenty of greenery. While we enjoyed a Swiss chocolate, the evening sun dipped through the windows overhead, and for a moment the place seemed serene. We looked at the organization’s blueprints for a much nicer facility tucked well away in the hills in precisely the setting you would want—plans that merely awaited a sufficiently generous donor to make them a reality.
But in the actual facility where Pegasos helped people end their lives, there were only two rooms: the waiting area in the front and a procedure room in the back. The area where deaths would take place was more spare, with a few chairs, some modest art on the walls, a stereo. There was a vaguely Buddhist picture hanging on the wall behind the bed, and the bed itself was a converted extra-wide hospital bed with the rails removed, so that family members, even pets, could be with the patient at their very last moments.
The director explained how the euthanasia—Faith had always insisted on calling it that—was usually performed. An IV would be started with normal saline and the lethal infusion, 15 grams of pentobarbital, would be hooked up in readiness. Under Swiss law, the client must initiate the lethal process themselves, which Faith would perform by turning a roller valve on the IV line to release the drug. Having the client perform this last act is seen as providing final assurance that it is what they really want. Family members may remain with the body as long as they wish, but are instructed not to touch the IV apparatus so that when the police and the coroner arrive—they are called immediately after the death—they will see that everything was done in accord with Swiss law.
At dinner in the little Spanish restaurant—surrounded by cases of Rioja, over trenchers of branzino—the director explained how Pegasos provided aid in dying. He acknowledged it was more liberal than other end-of-life groups, each of which has its own policies. Exit Switzerland (not to be confused with Exit International), refuses clients from outside Switzerland. Some groups are warier of providing aid in dying to people who were not seriously ill. But our host was, much like Faith, committed to the idea that anyone should be free to determine the time of their own death, regardless of whether they were medically ill, dying, old, in pain, provided that their thinking was still clear enough that they could make decisions for themselves. For him, it was a question of autonomy, and only a question of autonomy.
Pegasos requires clients to submit a biography—he showed us Faith’s, with her permission. Then, if they seemed to qualify, one of the physicians who worked with the organization would conduct an assessment. Sometimes this was in person, sometimes by videoconference; one of the psychiatrists involved was based in London. Just before the procedure, a physician would check in with them for a second time before the procedure, again largely to assess their ability to make decisions. Unless the patient was arriving by air ambulance, Pegasos required its clients to stay overnight in a hotel near the facility, so that the physician would be able to conduct a second assessment the night before the procedure. If the patient had second thoughts, this might be time to act on them—Faith had been assured that she could stop the process at any time she wanted. But as the director pointed out, second thoughts were almost always evident in advance. Patients who had come as far as Faith had were determined, ready, and resolute.
Faith herself did not have second thoughts—at least, not that she expressed in any way at all. But where did her resoluteness come from? It might strike some as odd that the achievement she saw as completing her life, thereby making it possible for her to die, was putting together an organization focused on precisely that idea—a sort of self-fulfilling prophecy. But Faith pointed out that CLI, like her own death, is just an expression of something she’d thought about for years: ending her life on her own terms was a lifelong goal. She had been an inaugural member of the Hemlock Society, and had talked with family and friends about her desire to control her own death for most of her life.
Of course, such dedication might itself be hard to fathom: how could she spend a life focused on dying, devoted to choosing the time and the method? Some early, formative, experiences suggest an answer. Faith related how, when she was in sixth grade, her younger sister’s best friend, then aged nine, died of cancer. A large tumor near the spine had already metastasized by the time it was discovered. Faith recalled that, back then, such deaths were drawn out and agonizing, and it was “devastating to watch this little child die. She was in pain, just wasting away.” Watching her “simply disappear” made Faith start to think about the difference between a good death and a bad death. She became determined to have a good one, as she defined it. This determination only deepened when she watched the long, slow declines of her own mother and grandmother.
Faith described how she discovered the metaphysical poets in college, and their preoccupation with death resonated with her own nascent interest. In his poem “Death Be Not Proud,” John Donne regarded death, in Faith’s interpretation, as a way of escaping the risk of sin:
Die not, poor Death, nor yet canst thou kill me.
From rest and sleep, which but thy pictures be,
Much pleasure; then from thee much more must flow,
And soonest our best men with thee do go,
Rest of their bones, and soul’s delivery.
It surely also mattered that Faith’s own first child had died shortly after birth, especially because of the lack of any acknowledgement of what had occurred. “The way they dealt with that at that time was to pretend it didn’t happen” Faith recalled. “My husband was instructed to go home and take everything out of the nursery. Three or four hours after the delivery I went home and … it didn’t happen.” This was so very unlike what Donne might have said. Faith seemed to have been angered by this silence her whole life, which is not a surprising reaction to such a momentous and awful event. Part of CLI’s purpose is to make it easier for all of us to talk about dying, and this may have appealed to Faith as a way of repairing that terrible silence.
Did she think about how her death would affect others? Certainly. For one thing, Faith believed that dying early was an ecologically responsible choice. “If my life is completed, I definitely don’t want to be hanging around taking up resources, taking up space on the planet, housing, food, all those things. There’s something inappropriate about being alive, just being alive, when you feel your life is complete.”
She also thought that her death would be a model. CLI’s announcement of her death says, “Faith intended that her choice serve as a model and inspiration for the expansion of individual autonomy in end of life decision-making.” Her hope was that her death would raise awareness, even help people think about death differently. “Over my lifelong study of death and dying, I came to believe that people were living too long … and [I] was determined to find a way to end suffering at the end of life and give people autonomy to die on their own terms—without pain and with dignity.”
She recognized that her approach wasn’t for everyone, though, and she wasn’t saying that others should hasten their own deaths simply because they were getting old, feeling achy, or able to do less than they used to. Although those things contributed to her sense that her life was complete, she regarded the “completed life” as a highly individual idea that “can only be described and realized by the person living it.”
What about her family and friends? What did they think? She worried about this. Of course, the people involved in CLI, to whom she had become close over the last three years, were supportive. The two children of her life partner, both involved in the administration of CLI, were supportive. But things were sometimes rocky elsewhere. She thought she’d done her best to put her relationships right: “Everyone would want to have the best, most perfect relationship with their spouses, their children, their families. But I have some relationships where I’ve accepted that … it’s not possible to repair the damage done. But I also consider that a positive, because I’ve accepted it. I’ve done everything I can and I can’t control other people.”
The biggest conflict was with her own biological daughter. As Faith saw things, her daughter didn’t want to acknowledge what she had set out to do. This was a source of some frustration, even anguish. “I have a difficult unresolved relationship with my daughter, who says to me, ‘I don’t want to hear you talk about suicide. I’ve listened to you talk about death all your life.’ I say, ‘I’ve never talked about suicide, and I’m not talking about suicide now.’ She says, ‘I don’t care what you call it, you’re talking about it, and I don’t want to hear it.’”
Faith’s daughter did acknowledge her mother’s plan in the end, but continued to regard it as premature and, therefore, wrong. At the funeral, she did not flinch from expressing her true feelings: “It’s difficult to stand here and try to make sense of what seems nonsensical. I think the best shot I have at an explanation is the words mom wrote in her very own obituary. … ‘She died peacefully, at the time of her choosing.’ When I get sad, mad, or confused about the fact that she chose to leave us, I recall those words.” Faith’s granddaughter then echoed this sentiment: “Her choice to leave us, as insane, confusing, and strange as it may be, was something I know that she was confident in. Her stubborn nature is something I inherited and for that reason I am able to understand, to an extent, why she made this decision.”
It’s important that Faith really didn’t think about her death as suicide. Sure, she would be killing herself, and suicide is a type of self-killing. But the main difference, in her mind, was the why: “When people commit suicide they are in desperate situations. They are living lives that torment them. They just can’t bear to be living. I am not attempting suicide. I am not taking my life. If suicide were defined differently, I might say I was. It’s just that the word, the connotations, are so unfortunate.”
What about God? Despite her name, you might imagine that Faith, a lifelong campaigner for euthanasia, was a dyed-in-the-wool atheist, rejecting traditional ideas about God and the afterlife. After all, many religious groups oppose medical aid-in-dying and euthanasia, so surely proponents of euthanasia oppose religion? Surprisingly, however, Faith was quite involved in church. She responded to the metaphysical poets, and though she had grown up with little religion, she identified a need in herself while she was in college, and started going to the chapel. She attended a major mainstream Protestant church in Greenwich for decades. She sang in the choir, took her kids to church while they lived with her, served on church committees, and she was a deacon for a time. She saw the church and God as sources of inspiration for her work. “I have a very close relationship with organized religion, and it’s grown over time. I started out with no religion. Nothing, absolutely nothing. I got religion when I went to college because I decided to go to chapel, since somebody told me that the chaplain was very good. He was interesting, smart, and young. It was just some kind of need that I had.”
Faith had been open about her plan in her church community, and saw that community as a source of support. She said, perhaps over-optimistically, “I’ve … discussed it with my minister, and my minister is perfectly fine with it.” Faith had organized talks in the church about end-of-life topics and her own views. She had lunch with her pastor, a few days before she left for Switzerland. She had arranged quite an elaborate funeral in that very church—all planned out ahead of time, of course. The service made no secret of the fact that she had wrought her own death.
Her spiritual beliefs were a source of courage for her. “I do believe in heaven but I have no idea what it’s like. We definitely go someplace because I believe I have a soul and the spirit of God that was planted inside me, which is eternal, so it has to have someplace to go. I don’t know, but I think it probably does make it easier to do this.”
She took the success of CLI itself as God-given. At the start, she had resources but no connections. Stubborn, bold, knowing no one in bioethics, she found out whose help she should enlist by cold-calling a lot of academics; she interpreted their support as a sign that “the spirit is moving.” It was, far from something God opposed, part of his plan for her, and through her all the rest of us: “God,” she thought, “had not intended us to suffer at the time of our deaths.”
This isn’t to say that everything was easy at the end. Faith and one of us (MPB) were in frequent communication—those Zoom-dinners and other conversations— in the months and weeks leading up to her departure for Switzerland. At times, Faith was quite distressed. She felt she had a great deal still to do, in closing out her life—saying goodbye to friends, emptying out her apartment, attending to her will and financial affairs—but had remarked frequently, literally for months, that she was “running out of time.” At certain points, she seemed to be ensnared in trivialities. She had stipulated in her will that none of her belongings could be thrown away, so that everything needed to be taken by family or donated to charity or recycled. But her last weeks found her pulling the metal spines out of pendaflex hanging files so that they could go into the recycling bin, fretting that there simply wasn’t enough time to do everything. Not the sort of thing you would think a person would be focused on, right before the end.
You might wonder: why not just delay? The director of Pegasos had told us that the organization would be happy to postpone Faith’s visit, for as long as she wanted, just as it did for any of its clients. All the pressure was coming from Faith herself. She saw herself as unable to back down from her decision, even a little, a bit like Ulysses lashed to the mast, minus the ropes. Perhaps she was simply afraid that something—a fall, a disabling illness—would prevent her from doing it if she waited even a little. Perhaps she was afraid that she would lose her resolve. Perhaps she was simply worried what others would think if she, a shining example of autonomy at the end of life, showed hesitation.
So, what should we make of all this? What should we make of her choice? Was it a good one? Was it made wisely and for good reasons, or made badly for bad reasons? Whether it was good or bad is very much in the eye of the beholder, depending on what one thinks about medical aid-in-dying or euthanasia in the first place. You might think it’s laudable that Faith wanted to exercise her autonomy over her whole life, including its end. But you could also think that there’s something wrong about wanting control for its own sake, especially over something most of us don’t control.
You could even, we suppose, think of Faith as obsessed. You could look at the childhood experience that shaped her desire, at the vicissitudes in her relationships, and think that it betrays something broken. But it’s possible, too, to admire her single-mindedness and determination, whatever their source. It is anyway an error to think that because we, even a psychiatrist, can tell a story about how someone came to want something—especially if that story is punctuated by trauma or some other salacious detail—that their wanting it is wrong or inauthentic. We all have such stories in our lives, after all.
You might think that Faith’s idea that her death was compatible with God’s plan for her—whether theologically tenable we cannot say—demonstrates an admirable devotion. But you could, instead, feel queasy about the fact that she seemed comforted by the thought of a heaven—for what if she was wrong, in the end, and left life sooner than she otherwise would have because eternal reward seemed to beckon?
You might think it’s understandable that Faith wanted to minimize the risk that she’d spend some portion of the end of her life unable to do many of the things she had once enjoyed or thought important, suffering only escalating pains and the burden of a body that is gradually deteriorating. But you could think, instead, that for some, maybe most people in that spot, unless things are really bad, it is possible to find other pleasures, to adapt to difficulties as they mount, and to learn to tolerate the pains. Or you could admire the realism she displayed, including her awareness that a single fall could change the course of her life for what she regarded as the very worst—everything her notion of a positive, cumulative end to a completed life was set against.
We feel tempted by all of these takes on what Faith did. Her death leaves us feeling ambivalent, not quite knowing what to think. It wasn’t easy to watch the story play out, despite our promise not to intercede. BMK had to struggle against psychiatry’s ingrained commitment to preventing suicide when it can; MPB—a bioethicist who has long argued for access to aid in dying—still held out hope that Faith might relent, or at least delay. They were friends, after all, and it was hard to see a friend go. Why, and why now, indeed?
At the funeral, Faith’s daughter summarized her mother’s lesson this way: “While I still grapple with the finality of it, and the moral and ethical pieces, of which there are many, I am learning each day that her sense of completion and accomplishment is a gift to us all. She granted us peace in knowing that she did not live in regret.”
We heard from those who had accompanied Faith to Switzerland that, once on the plane, her anxiety about running out of time had fallen away; she was described as “peaceful.” She was described that way, too, on the evening before the procedure at Pegasos, and the next day, when she was ready in bed with her family members around her. With the IV line in place and running normal saline, Pachelbel’s “Canon” playing in the background, she calmly turned the roller valve to release the lethal medication herself. Her last words, directed to those gathered at the bedside, were almost “I love you.” She died before she could speak the last word. But her intent was clear.
84-year-old Rhonda Skinner is currently going through end-of-life care with the help of her family
By 2066, it’s expected that older Australians will account for up to 23 per cent of the population
A palliative care nurse says talking with loved ones about their end-of-life wishes will become increasingly important
The 84-year-old Mount Isa resident has chronic obstructive pulmonary lung disease and atrial fibrillation, and needs a constant supply of oxygen to breathe.
In November, she was told she would be entering palliative care.
For Rhonda Skinner’s nine children, it was a heartbreaking moment, when they realised the head of their family was at her weakest.
“It’s difficult when they tell you. It’s like, ‘Oh my god, mum’s going to die really soon’,” her daughter, Leigh Skinner, said.
“But it isn’t just about imminent death, it’s a progression.”
Mrs Skinner is adamant that she wants to spend the last days of her life at home.
Rhonda Skinner has been adamant that she does not want to live out her remaining days in hospital, and her family has worked with the palliative care team to ensure her wishes are guaranteed.
“Without the knowledge that we have now we would have just assumed that once mum got really sick she’d have to stay in hospital,” Leigh Skinner said.
“But the palliative team have set up processes so that when we get to the end, mum will be at home,” she said.
As Australia’s population continues to age, experts are eager to change attitudes about the end-of-life care process and educate families on what caring for a dying relative looks like.
Donna McGregor is the sole palliative care nurse for the North West Hospital and Health Service (NWHHS) in Queensland.
To see her patients, she covers hundreds of kilometres across the outback, tending to residents in small, remote communities and on cattle stations.
Palliative care nurse Donna McGregor travels across north west Queensland for her job.
“It’s a privilege to work in palliative care, we have quirky personalities, I guess because we’re dealing with death and dying a lot,” Ms McGregor said.
“We’re dealing with people’s [grief] and supporting them at their most pivotal time in life, and also the most distressing time of their life — making decisions that greatly affect them but also their family.”
Tough conversations
In her 30 years of experience working in palliative care, Ms McGregor has seen a shift in how the psychological impacts of death are treated.
“Having conversations is the most important aspect of palliative care — it isn’t just about the person, it’s about the network around the person,” said Ms McGregor.
Palliative care nurse Donna McGregor has seen a shift in the way end of life care is provided.
Australian’s increasing life expectancy and declining birth rates are contributing to the country’s ageing population.
According to the Australian Bureau of Statistics (ABS), the number of older Australians has increased from 1 million (8.3 per cent of the total population) in 1970 to 4.2 million (16 per cent of the total population) in 2020.
By 2066, it’s projected older Australians will make up 21 per cent to 23 per cent of the population.
Ms McGregor believes having hard conversations with loved ones about their end-of-life wishes will become increasingly important.
“It’s absolutely paramount, and good quality palliative care is really good at managing every symptom associated with chronic illness,” she said.
Difference in care
Correna Apiata has experienced the grief and trauma of losing both of her parents.
Ten years ago, she was left scarred by the experience of caring for her father in his final days at home in New Zealand.
Correna Apiata had different experiences when each of her parents died.
“They pretty much just handed us the instruments and left us to our own devices, it wasn’t good,” Ms Apiata said.
When her mother fell sick while living in Mount Isa, the memory of that time came flooding back to her.
However, the experience with her mother was very different.
“Donna [McGregor], she just made everything easier — if there was a moment we couldn’t get to Mum, she’d be like, ‘I’m free I can go,'” Ms Apiata said.
“She made all the hard stuff easy, even the funeral arrangements. We knew that she was just a phone call away.”
New funding will make Ms McGregor’s job easier in the outback, as the NWHHS has received $850,000 from the state government to recruit four new palliative care positions.
“We’ll have a social work department and a full-time Indigenous health worker because as you can imagine demand is going to increase,” she said.
Talking about aging and illness can be difficult, but experts have tips for getting started.
By Lynya Floyd
Iris Waichler sat at the kitchen table with her husband, Steven, and seven friends. They were gathered to discuss their single, childless friend Paul Mungrides. But this wasn’t a lighthearted chat about finding the 56-year-old a date. They were there to talk about his end-of-life wishes.
A few weeks earlier, Mr. Mungrides was diagnosed with an aggressive form of brain cancer that carries a 12- to 15-month life expectancy with treatment. He shared the news with Mr. Waichler, one of his best friends, who organized the rest of the group. They were the only people Mr. Mungrides could rely on for palliative care; his sole sibling lived out of state.
“We had plenty of time early on to talk about what he wanted, what his insurance covered, his finances,” Mrs. Waichler, a 68-year-old medical social worker based in Chicago, said.
Together, they devised a plan: One friend, a doctor, found Mr. Mungrides an oncologist. Mr. Waichler and another friend visited at night, watching Chicago Bulls games and helping Mr. Mungrides bathe. Mrs. Waichler did laundry, arranged meals and coordinated hospice care until Mr. Mungrides passed away in March 2012.
“We took care of him for almost a year,” she said. “We even arranged the memorial celebration.”
If this scenario sounds exceptional — like an ideal end-of-life story — that’s because it is. There are around 53 million unpaid caregivers in the United States, and their experiences don’t typically start with a detailed plan and a committed team. A partner is rushed to the hospital, or a spontaneous visit to a parent’s house reveals a bare fridge and stacks of unopened mail. Seemingly overnight, caregivers can find themselves alone and overwhelmed, careening toward burnout and exhaustion.
Creating a plan, even like the one Mr. Mungrides’s friends developed, won’t protect against every potential curveball. But carving out time before illness strikes to discuss wishes, assess resources, organize medical documents and, ultimately, outline responsibilities can make a fraught process a little less harrowing.
What to include in a caregiving plan
A comprehensive plan should list daily needs and designate a person to handle them once you or a loved one falls ill. It can be incredibly detailed, stipulating who will do grocery shopping or household chores, who will ensure medications are taken and prescriptions are refilled, and who will provide live-in care if necessary.
If you’re short on time, Aaron Blight, the author of “When Caregiving Calls: Guidance as You Care for a Parent, Spouse or Aging Relative,” recommended focusing on five questions: What care is required? When is it needed? Where will it be received? Who will provide the support? How will you pay for it?
There are also legal decisions to make, said C. Grace Whiting, the executive director of the National Academy of Elder Law Attorneys. The legal titles and document names can vary, she said, but you should choose someone, like a health care proxy, to make medical decisions in the event you’re unable, as well as give someone power of attorney, so they can act on your behalf in financial, legal and other matters.
You should also write out an advanced directive, a legal document that provides, among other things, clear guidance about the level of care you want in a medical emergency if you can’t speak for yourself. And you should consider drafting a last will and testament that outlines how you want to allocate money, assets, intellectual property and other belongings.
If you are transitioning into a caregiver role, a legal care contract that describes the caregiver’s responsibilities and any compensation is also worth considering, Ms. Whiting said. “A lot of people just leave $300 a month on the kitchen table for the family member helping them,” she explained. “These contracts not only help avoid family disputes about where the money went, but also help you bypass tax implications down the road.”
Settling legal matters as early as possible will only make the caregiving experience easier down the line, and everyone can rest assured that those affairs will be taken care of. When Andy Jurinko’s pancreatic cancer progressed in the winter of 2011, his wife, Pat Moore, called a lawyer to finalize paperwork.
“It is the worst thing in the world to be laying in your bed, dying, and having a lawyer ask you questions about who should get what,” Ms. Moore, 69, a sweater designer from New York City, said. “If you wait until the last minute, you’re in such a bad place.”
How to broach the conversation
Several caregivers we spoke to cited another person’s crisis as a catalyst for caregiving discussions. “After 9/11, my parents did most of the work themselves: meeting with lawyers and having a binder made up of all the documents we’d need,” Kitty Eisele, the host and creator of “Twenty-Four Seven: A Podcast About Caregiving,” said. “They came to us and said: ‘Here’s the paperwork, here’s the lawyer’s contact info. If something awful happens, you know what to do.’”
But for those who may be reluctant to have those conversations, there are other ways to begin talking about caregiving with loved ones:
1. Start with goals instead of problems.
It’s tempting to problem-solve when you’re concerned, but Liz O’Donnell, the founder of Working Daughter, a community for women balancing elder care with their careers, warned against that approach. Instead, she said, ask open-ended questions that give loved ones agency and allow them explore possibilities.
“It’s not, ‘You know you can’t live in this house anymore’ or ‘It’s not safe for you to drive anymore,’ but ‘What’s important to you as you look at the next phase of life?’” she said.
Claudia Fine, a licensed social worker and chief professional officer at eFamilyCare, suggested explaining that caregiving is somewhat inevitable — most people will eventually need it — while keeping a positive tone. “You can say: ‘At some point, before we have a crisis, I’d love to know what your thoughts are for if something were to happen; that way I can support you in this,’” she said.
2. Remember that you’re on the same team.
Conversations about caregiving can become contentious, but “the preferences, likes and dislikes of the person receiving care should be at the forefront,” said María P. Aranda, a professor of social work and the executive director for the Edward R. Roybal Institute on Aging at the University of Southern California. “It’s a shortsighted approach to not engage that person in their own care trajectory.”
You can also decide together who else might be able to help. “There’s an assumption that there will only be one caregiver present during the entire journey,” said Dr. Aranda, who suggested an approach that involves multiple supporters who can change over time.
3. Expect several conversations.
“It’s like asking for a raise,” Ms. O’Donnell said. “You don’t get it as soon as you walk into your boss’s door. It’s a negotiation.”
You might get shut down the first time you bring up the topic. “To you, this is just a conversation about practicality, safety and support,” Ms. O’Donnell said. “To them, it’s about loss, lack of independence and more change in a time when they’re already experiencing a lot of change. There can be a lot of fear around this.”
It’s also possible that your best-laid plans will need tweaking over time. Caregiving is dynamic, and what seemed like a perfect solution might prove ineffective later.
4. Lean on templates and icebreakers.
If you’re struggling to find the right approach, there are many resources available. A public health initiative called The Conversation Project, for example, provides free guides and scripts for starting conversations as well as communicating wishes for end-of-life care. There’s even a card game called Hello! that aims to ease participants into discussing their feelings about living and dying.
Managing care and expectations
Even if you create a plan, caregiving may still come with obstacles. “Sometimes there’s no rainbow at the end of the tunnel,” Dr. Aranda said.
After realizing that her parents would eventually need more support, Dr. Aranda and her sister had a conversation with them about hiring a home health aide. “They looked at us very perplexed and I thought, ‘This is not going well,’” she said. “The idea of having hired help coming into the home was foreign to them.”
Dr. Aranda and her sister ended up taking on more responsibility and increasing the hours they spent with their parents. But honoring someone else’s wishes for their care doesn’t mean you have to set aside your own needs. Experts recommended prioritizing self-care that goes beyond the occasional spa day and focuses, instead, on finding resources that yield financial, physical and emotional support.
“Many caregivers don’t know what services are available to them,” Dr. Aranda said. To explore your options, she recommended asking health care professionals, senior organizations and other caregivers how to get access to resources that could be helpful. “It’s amazing to see how families can learn from one another,” she said.
Revisiting your medical or employee benefits might also uncover things like insurance coverage for therapy appointments, family and medical leave to focus on caregiving or discounted daily care services for adults.
And online caregiver support groups can provide a safe space to vent. “Caregiving can be a lonely road,” Dr. Blight said. “But the friendships that you develop and the people who support you through these difficult times are often relationships that last beyond the season of caregiving.
Young people with serious illnesses will soon be able to have consistent end-of-life care under the new Paediatric Palliative Care Action Plan, launched by the federal government today.
It is the first road map for end-of-life care specifically targeted at infants, children, adolescents and young adults.
Currently, palliative care services are aimed at people in their 70s, 80s and older, which means that young people aren’t getting the services they need.
Assistant Health Minister Ged Kearney told Hack that the plan aims to bridge that gap.
“There always seems to have been a gap with the need for a specialist palliative care program for young people, because I think their needs are quite different.”
The plan was commissioned under the previous federal government and has been four years in the making.
“We brought together governments, key stakeholder organisations, health services, health workers, families … to build this action plan,” Ms Kearney said.
“It’s going to be out there as of today to make sure … we have national consistency, and that young people, children and infants get the best possible care they can.”
The need for youth-specific care
Earlier this year, the Adolescent and Young Adult Hospice (AYAH) opened its doors in the northern beaches of Sydney. It was the first of its kind in Australia, a facility aimed solely at providing care for young people aged 15 to 24.
“It’s a time when they’re going through emotional changes, social changes, physical changes, etc,” services manager Tayia Yeats said.
“They need to have that different area, which is purpose built for them, where they can interact with others that are going through similar challenges.”
The facility is funded through New South Wales Health, charity the North Foundation, and through donations from the community.
It has purpose-built spaces for activities young people enjoy, like a music room, games room and space to watch movies.
“It feels more like a hangout,” university student Patrick Nolan said.
Patrick is 21 and lives with muscular dystrophy. He has visited AYAH for respite care and says the most important aspect of the facility is the ability to interact with other young people.
“We’d stay up late, just messing around like any young person can do. And for me that that’s a bit of a challenge outside of this place,” Patrick explained.
Patrick Nolan (holding guitar) says respite care is like a “holiday from life”, and gives him the opportunity to behave like a carefree young person.
“What they want to be doing at 21 years of age is very different than what you want to be doing at 81 years of age,” nurse practitioner Sara Fleming said.
She’s been working in paediatric palliative care for over 20 years, and said the needs of a young person approaching the end of their lives can be very different to what health care professionals — and even the young person’s family — recommend.
Sara said she had a young patient once who had a life expectancy of just a few months.
“There was great distress in the family and distress experienced by the parents, because this young person, they wanted to go to a party.”
“So my job as a nurse looking after this was to go, ‘Alright, let’s get you to the party. But let’s put some things in place that are invisible to people at the party that just help everyone,'” Sara said.
Assistant Health Minister Ged Kearney said a key aspect of the paediatric palliative care plan is ensuring that the views of young people are respected.
“It’s so important to involve young people in the decision making around the end of their life. It’s their life.”
A new study out of Sweden finds that people who live longer often spend more time undergoing end-of-life care, suggesting that their deaths are more drawn out than people who die younger.
Medical care at an advanced age often extends life without significantly improving one’s quality of life.
The study draws further attention to the gap between lifespan and healthspan. In many developed societies, people are living longer but also spending a higher proportion of their lives living in poor health.
Humans are living longer than ever before. Since 1950, global average life expectancy has risen from 47 to 73. This remarkable gain has been won through reducing poverty and eradicating disease, among other humanitarian advances. But in countries whose citizens are now living to advanced ages in the 80s and beyond, a complicated question must now be asked: Are we actually extending life or merely prolonging death?
Extending life or prolonging death?
A team of researchers from the Karolinska Institute in Sweden confronted this query head-on with a study recently published in the American Journal of Public Health. Demographer Marcus Ebeling and his colleagues utilized large public databases to track the course of all deaths of individuals aged 70 and over in Sweden between 2018 and 2020, focusing on patients’ final 12 months. Chiefly, they wanted to know how most elderly individuals die.
Are their deaths short and sudden or long and drawn out? Do they die at home, physically able and mentally sharp until the end? Or do they die in a facility, impaired and care-dependent in their final years, essentially wasting away? Tragically, it increasingly seems to be the latter.
“Two-thirds of all deaths followed a trajectory with extensive elder care utilization throughout the last year of life, and at least half additionally showed extensive medical care utilization,” they found. “Most deaths today do not comply with what is often referred to as a ‘good’ death.”
What constitutes a good death? “Retaining control, being pain-free, having the choice of the place of death, and not having life prolonged pointlessly are principles that have been mentioned, among others,” the researchers wrote.
Ebeling and his colleagues also found that prolonged end-of-life care was increasingly common over the age of 83, Sweden’s life expectancy, suggesting that individuals graced with a longer life are more likely to have a drawn out death, potentially filled with medical procedures and physiological burdens.
Lifespan vs. healthspan
The finding calls further attention to the frequently discussed gap between “lifespan” and “healthspan.” Lifespan is how long someone lives; healthspan is how long someone lives in good health, free from chronic disease and disability. Ideally, they should be nearly equal. In actuality, as human lifespan has rapidly grown over the past half-century, healthspan has not kept up. Analyses suggest a present gap of 10 to 15 years between them in the U.S. That’s more than a decade on average of people living in poor health, often at the twilight of their lives. In keeping with Ebeling’s study, this suggests that most people are in declining health prior to death.
And unfortunately, what a lot of end-of-life care tends to do is boost lifespan, with little benefit to healthspan. Drugs and procedures that treat underlying medical conditions in the elderly are often hamstrung in how much “health” they can truly restore. Ultimately, the best way to boost healthspan and hopefully remain independent until the very end is to prevent debilitating conditions from ever cropping up in the first place. That means eating right, refraining from smoking, drinking alcohol in moderation, maintaining social connections, challenging your mind, and above all, remaining physically active. And it means maintaining these habits even into old age.
The major takeaway is that to give yourself the best chance at a good death, do the things that will help you live a fit life.
A core focus of palliative care is on easing symptoms and increasing quality of life for people who have a serious or chronic illness, and not solely for those who are dying.
Most people may not wish to devote much time to thinking about their death. However, it’s an unfortunate fact that the entry point into experiences or conversations around death and end-of-life care can happen abruptly.
An unexpected death or a terminal diagnosis can leave people ill-equipped to navigate what often feels like uncharted territory of navigating end-of-life care, bereavement and grief.
The challenging realities surrounding end-of-life care are especially difficult for older people experiencing homelessness. For these older adults, intersectional and compounding experiences of oppression, such as poverty, racial disparities and ageism, create barriers to accessing hospice care.
Misconceptions about hospice care
The need for end-of-life and palliative services for unhoused people will likely continue to grow as the population experiencing homelessness grows and ages.
Efforts to increase awareness about hospice often neglect the most vulnerable populations. Future efforts must merge education and awareness with intersectionality, which takes into consideration the intersections of inequities that impact unhoused older adults.
Hospice care focuses on addressing the full spectrum of a patient’s physical, emotional, social and spiritual experiences and needs. A common misconception is that hospice is exclusively a location or place where people go to die. Contrary to this notion, hospice is a service that is provided in various settings including within one’s home, long-term care facilities, hospice centres or within a hospital.
Family and friends often play an essential role in caring and advocating for a loved one during their end-of-life process. We can only hope to have loved ones by our side during these final stages; however, that is not the reality for many unhoused community members who do not have the option to die at home with loved ones.
A core focus of palliative care is on easing symptoms and increasing quality of life for people who have a serious or chronic illness, and not solely for those who are dying. Palliative care can be a valuable form of health care for older people experiencing homelessness, as it can offer a tailored approach to managing multiple chronic or terminal illnesses, which are prevalent among unhoused older people.
We believe it is valuable to consider that if end-of-life care costs were reduced by using palliative care practices, the cost savings could be used to fund services that directly support unhoused older adults, such as increased affordable housing options.
Aging in the right place
As members of the Aging in the Right Place project research team at Simon Fraser University, we are working to better understand what aging and dying in the right place means to unhoused older adults in two sites providing end-of-life care in Vancouver.
May’s Place Hospice, which is in the Downtown Eastside of Vancouver, provides end-of-life care for community members in that part of the city. May’s Place has created a communal, home-like environment with private rooms, meals provided three times a day, 24-hour nursing care, a smoking lounge and family gathering space.
Palliative care that takes place in a hospital setting can decrease end-of-life care costs by nearly 50 per cent.
Another inpatient hospice setting in Vancouver is Cottage Hospice, located in a 1924 heritage building. Patients have a view of the North Shore mountains and are close to the water. Cottage Hospice and May’s place provide the same types of hospice palliative care support, and both care for older patients experiencing homelessness, but serve different populations based on their location and setting, demonstrating that hospice and palliative care is not a one-size-fits all approach.
The Aging in the Right Place project captures the perspectives and lived experiences of older people experiencing homelessness through integrating photovoice interview research methods as well as data collection methods that focused on the hospice setting, the neighbourhood, and experiences of staff who work to support unhoused older people. Photovoice is a method used in community-based research in which participants use photo taking and storytelling to document their own perspectives and experiences.
In the Vancouver area where we work — also known as the land that belongs to the Skwxwú7mesh (Squamish), xʷməθkwəy̓əm (Musqueam) and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) people — and throughout the province, colonization and colonial medical models have had lasting and detrimental impacts on Indigenous knowledge and traditional practices around death and dying for First Nation communities.
One example of these impacts is that current hospice models may not reflect culturally relevant care models. Hospice organizations throughout B.C. should prioritize increasing policy and practice for Indigenous groups to ensure safety and culturally relevant care are implemented. Ensuring accessibility to hospice and palliative care is one step towards dismantling these barriers for Indigenous populations.
B.C. can turn to the Palliative Education and Care for the Homeless (PEACH) service fostered by Inner City Health Associates (ICHA) in Toronto as an example. PEACH is taking a diverse and innovative approach to providing palliative care among the homeless and vulnerable populations, including Indigenous communities and older adults. Innovative and culturally sensitive services such as these, are a step in the right direction to providing better end-of-life care to older adults experiencing homelessness.
It is crucial that we make hospice and palliative care services available to all community members, especially with the aging population and an increase in chronic illnesses throughout Canada.
In addition to supporting community members, hospice and palliative care should focus efforts on tailoring approaches to provide culturally relevant care, increasing staff education about the lived experiences of older people experiencing homelessness, and creating safe and accessible services in B.C. for marginalized communities.
We must actively dismantle misconceptions about the role of hospice and palliative care through education and awareness to facilitate appropriate service delivery and use for diverse populations.
