Living well and dying well are what we all hope for. As we face dying and death, we need all the support we can get. It comes from many places, but we all know about the challenges associated with crowded emergency departments, the wait for hospital beds, the inadequate number of community placements, the stress on home care, the shortage of personal support workers … the list goes on.
Most Canadians (75 per cent in recent surveys) want to die at home, but most cannot. Most palliative care today is still provided in the hospital. The reasons are complex and include the lack of adequate home care palliative services and the limited support available to families and caregivers as they struggle to support a loved one at home. Conversations about dying and death are often left too late, when families and friends are in a state of panic, and are unsure what to do, and therefore turn to the local hospital to help them out.
In my more than 40 years as a family doctor, I learned so much from my patients and their families. When I provided end-of-life care in the home, I often noted the critical role of the family and friends in providing support and care to the dying person. Those families who spoke to the dying person well before the last days to understand the values, wishes and beliefs that were important, coped better, as I am sure the patient did as well. This reinforced for me that dying, death, care-giving and loss are social problems with medical aspects and not medical problems with social aspects.
We need to mobilize our communities (person by person, street by street, neighbourhood by neighbourhood) to become better able to support each other as we age. Compassionate Ottawa, a grassroots organization, only two years old, lives by the following vision: A compassionate Ottawa supports and empowers individuals, their families and their communities throughout life for dying and grieving well.Compassionate Ottawa was started by volunteers, and is sustained by volunteers, all of whom want to help our community normalize discussions about dying, death and grieving so that we can reach out to each other to provide support when needed.
The compassionate city movement was started in the United Kingdom and advocates for the role of the community in providing support and care. The long-term goal for us is to achieve a new model of care for those dealing with dying, death and grieving. Compassionate Ottawa is working with schools, workplaces and faith organizations to educate them about planning for dying and death so that they foster resiliency at the individual level. We are conducting advance care planning (ACP) workshops with many community groups. Our compassionate city strives to be one that recognizes that caring for each other should not be left to the health and social services but is the responsibility of all of us.
Amongst its initiatives, Compassionate Ottawa is proud to bring the HELP project (Healthy End of Life Project) to Canada from its origins in Australia. This three-year research project, with funding from the Mach-Gaensslen Foundation of Canada and led by researchers at Carleton University, will work with two faith groups and two community health centres in Ottawa to develop the skills and confidence to offer, ask for and accept help near the end of life. We will identify the challenges and successes we encounter and hope to have lessons that will be of use not only in Ottawa but also in communities across Canada.
We cannot continue to look only to the government’s health and social services to support our friends and relatives as they near the end of their lives. A push for more resiliency in the community would be a great benefit to all of us. And downstream it would mean fewer visits to the emergency rooms, fewer admissions to hospital, less demand for experts, less costly care and, hopefully, a more satisfied and stronger population.
Meaghan Jackson has a surprising amount of insight into death and love for a 36-year-old.
“Working here, it’s changed me,” Jackson said from a wood-panelled room at the North Shore Hospice, where she has worked as a music therapist for four years.
“It’s completely changed the trajectory of my life.”
Jackson guides the residents at the hospice through their final days. She helps them write songs for their loved ones, and plays music for them as they take their last breaths.
Jackson has worked in “death and dying” since she was 22. She says her experiences prompted her to have children early in life, and focus on the present, no matter how difficult.
“I practice the art of being present when that present isn’t pleasant,” she said.
Health practitioners like Jackson say their experiences working with dying patients offer insights into love, relationships and how to focus on what matters.
Each of the four practitioners interviewed for this story — a doctor, a social worker, a nurse and a music therapist — say dying patients tend to focus their energy and attention on the people they love.
Dr. Pippa Hawley, a palliative care doctor at the B.C. Cancer Centre, says she has seen couples and families reconcile after decades apart. She’s also seen several of her dying patients get married in the palliative care unit, sometimes in their beds.
Hawley says dying patients don’t have time to take loved ones for granted.
“All of that stuff that we bother with on a day-to-day basis just fades into irrelevancy,” she says.
Dying patients face many challenges with their partners, even when they prioritize love.
Melanie McDonald, a social worker who also works in palliative care at the B.C. Cancer Centre, says every couple she helps deals with death differently.
Couples who thrive during difficult moments are often those who can balance sadness with joy and love, she says.
Nurse Jane Webley, who leads Vancouver Coastal Health’s palliative care unit, says the strongest couples are best at honestly communicating their needs, feelings and end-of-life plans.
Webley says patients who find it too difficult to discuss those matters are often the same ones who push loved ones away and face death alone.
“I think that’s a protection mechanism,” she said. “I would say 90 per cent of the time, it’s fear — and that fear is brought about by lack of communication.”
Dr. Hawley says some of her patients are never able to communicate their feelings and needs. Often, she says, that’s been a long-standing issue for them.
“People tend to die as they have lived,” she said.
Talking about death and end-of-life plans is often easier for older couples who are often more in touch with mortality. But Webley says it’s never too soon to have those difficult conversations.
Another challenge couples face when one is dying is learning to give or receive help, health practitioners say.
Social worker McDonald says people who aren’t used to being caregivers, typically men, often struggle when they’re suddenly thrust into that position. But most people learn to take on that role, she says.
Dr. Hawley says patients can face problems as they lose their independence. But she says it’s important for people to let their partners care for them.
“Don’t feel like you’re a burden,” she said. “It’s actually a wonderful gift to be allowed to care for somebody, to show them that you love them.”
All four of the health care practitioners say love at the end of life can take many shapes.
“Love looks differently in different situations,” says social worker McDonald. “Love shows up in the end of life in friendship and in families and pets and faith traditions and all sorts of different ways.”
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”
Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death
By Ariana Kelland
Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.
Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”
The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.
Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.
“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”
MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.
The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially.
To raise — or not to raise — the option of assisted dying
For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live.
Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life.
“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.
“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”
MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t.
Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.
Changing the way she does things
Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought.
“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.
“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.
“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”
MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”
Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.
In 2016, a small group of doctors gathered in a Seattle conference room to find a better way to help people die. They included physicians at the forefront of medical aid in dying—the practice of providing terminal patients with a way to end their own life. And they were there because the aid-in-dying movement had recently run into a problem. The two lethal medications used by most patients for decades had suddenly become either unavailable or prohibitively expensive. When doctors briefly tried a substitute, some patients had rare but troubling experiences.
The Seattle group hoped to discover a different drug. But the practicalities of aid in dying, a controversial policy still illegal in most of the United States, are not like those in other medical fields. “There’s lots of data on stuff that helps people live longer, but there’s very little data on how to kill people,” says Terry Law, a participant at the meeting and one of the most frequently used aid-in-dying doctors in the U.S.
Seven states—including Hawaii, where a law took effect on January 1—and the District of Columbia now allow doctors to write lethal prescriptions for qualifying, mentally capable adults who have a terminal illness. And support for the practice has gained new national momentum after the widely publicized death of Brittany Maynard, a young cancer patient who moved to Oregon in 2014 to take advantage of that state’s aid-in-dying law.
But the public remains deeply conflicted about the laws—as does the medical community itself. No medical association oversees aid in dying, and no government committee helps fund the research. In states where the practice is legal, state governments provide guidance about which patients qualify, but say nothing about which drugs to prescribe. “Nowhere in the laws is there any sort of guidance for how to do it. There is no oversight to make sure that it’s happening in a safe way, apart from annual reports and kind of a face-value annual hearing,” says Laura Petrillo, a palliative-care physician who opposes legalized aid in dying.
The meeting of the 2016 group set in motion research that would lead the recipe for one of the most widely used aid-in-dying drugs in the United States. But the doctors’ work has taken place on the margins of traditional science. Despite their principled intentions, it’s a part of medicine that’s still practiced in the shadows.
On the surface, figuring out protocols for hastening death doesn’t seem complicated. Lonny Shavelson, a California physician who specializes in aid in dying, says that when he explains to patients it might take an hour or more for them to die, they’re often shocked. They tell him, “When I put down my dog, it took 10 minutes,” he says.
But veterinarians can use lethal injections on pets. In the U.S., aid-in-dying drugs must be ingested by the patient. The first proposed aid-in-dying law in Washington State would have allowed physicians to inject medications, but that legislation failed to pass. In 2008, a modified law was voted in, with an added requirement that patients self-ingest to help protect them from the possibility of family coercion.
For years, the two barbiturates widely considered the best drugs for hastening death in terminally ill patients were secobarbital and pentobarbital. These medications were painless, fast-acting, and relatively affordable. But since 2015, they’ve been largely unavailable. U.S. pharmacies stopped carrying pentobarbital approved for human use, and the price of secobarbital doubled from an already historic high after Valeant Pharmaceuticals (today known as Bausch Health) bought the manufacturing rights. A few years ago, a lethal dose cost about $200 or $300; now it can cost $3,500 or more.
To help patients who could no longer afford the drug, aid-in-dying groups sought a fix. In Washington, an advocacy organization called End of Life Washington briefly advised prescribing a drug mixture with the sedative chloral hydrate to about 70 patients. “We know this is going to put you to sleep, and we’re pretty sure it’s going to kill you,” Robert Wood, a medical director at the organization, says they told the patients. It worked, but with a tragic catch: In a few cases, the chloral hydrate burned people’s throats, causing severe pain just at the time they expected relief.
The End of Life gathering was born out of the need for a better solution. Wood enlisted three others affiliated with End of Life Washington: Law, its president; Tom Preston, a former medical director; and Carol Parrot, a retired anesthesiologist who, like Law, is one of the most experienced aid-in-dying doctors in the U.S. Others joined that meeting or later ones by telephone: a toxicologist in Iowa, a veterinarian, a pharmacologist, another anesthesiologist. The group had three main criteria, Parrot says: They wanted “a drug that would: number one, put a patient to sleep and keep them asleep; and, number two, make sure there was no pain involved; and number three, ensure that they would die, and, hopefully, die relatively quickly.” Plus, it had to be cheap. They aimed for $500 a dose.
The doctors considered a malaria medicine known to be lethal in large doses, but read that it caused severe muscle spasms in some patients. They discussed the synthetic opioid fentanyl, but were deterred by the drug’s newness and dangerous reputation. So the group decided to use a combination of medications, and eventually settled on high doses of three: morphine, diazepam—also known by its early brand name, Valium—and propranolol, a beta-blocker that slows the heart. They called the mixture DMP.
Next, the group had to test the drug. But they still didn’t have a way to follow standard procedure: There would be no government-approved clinical drug trial, and no Institutional Review Board oversight when they prescribed the concoction to patients. The doctors took what precautions they could. Patients could opt in or out, and for the first 10 deaths, either Parrot or Law would stay by the bedside and record patients’ and families’ responses.
The first two deaths went smoothly. But the third patient, an 81-year-old with prostate cancer, took 18 hours to die, Parrot says. In Oregon, where aid in dying has been legal for 20 years, the median time from taking the medication until death is 25 minutes. Patients themselves typically become unconscious in five or 10 minutes, so they are not affected by protracted times, Parrot, Wood, and Law all emphasize. But longer waiting periods can be nerve-racking for families and other caregivers, especially in the exceptional cases where these have persisted for a day or more.
Parrot and Law halted the DMP trial. The informal research group met again, this time by teleconference, and Law dug through the literature and found an article about people who purposely overdosed on digoxin, a cardiac drug. The group added it to the prescription, and the drug became DDMP.
At first, Parrot gave patients latitude in how they took this new drug combination. “One guy chugged a half a cup of Bailey’s Irish Cream, his favorite thing, after he had his medicine,” she says. “He probably took five or six hours to die.” She suspects that the fat particles in the Bailey’s slowed his gastric emptying. So the researchers checked in with each other again, and decided to increase the doses to what Parrot calls “blue-whale-sized doses.” They dubbed the modified formula DDMP2.
The drug is not a perfect aid-in-dying solution. Secobarbital is faster-acting and remains the drug of choice when patients can afford it, Wood says. Just as in the case of the barbiturates, a few outlier patients on DDMP2 take hours longer to die. And the mixture tastes extremely bitter. “Imagine taking two bottles of aspirin, crushing it up, and mixing it in less than half a cup of water or juice,” Parrot says.
Still, DDMP2 has become the low-cost solution the Seattle group set out to discover. In 2017, secobarbital was still the most commonly prescribed drug in Washington and Oregon, but in Colorado, DDMP2 was more commonly prescribed. The drug consistently accomplishes its purpose in hastening death, Parrot says: “It always works. It always, always works.”
Parrot and Wood keep track of patient data, and they continue to make discoveries. By examining medical histories of the patients who took longer to die, they’ve learned about certain risk factors for longer deaths: being on extremely high doses of painkillers such as fentanyl or morphine; being very athletic; having a compromised digestive tract. For patients who are especially risky, Parrot or Wood will sometimes offer the choice of chloral hydrate, the drug that burned some patients’ throats, although they say they carefully discuss potential problems with patients and families.
Together, Parrot and Law have written perhaps 300 lethal prescriptions over the years and observed the effects of medications on numerous patients. Neither set out to be an aid-in-dying advocate; they turned to End of Life Washington after witnessing the suffering of some dying patients. About eight years ago, Law says she was asked to prescribe lethal medications for a dying woman whose regular doctors had refused. She agreed to see the woman, and realized how difficult it was for some aid-in-dying patients to find doctors. Parrot says she was profoundly affected by the deaths of two close friends who asked her to help hasten their dying, but who lived in states where the practice was illegal. She was unable to help them, and began volunteering as an aid-in-dying doctor soon after she retired.
Most medical professionals don’t participate in aid in dying. Some physicians are concerned that their Hippocratic oath prohibits intentionally helping someone die, or that aid-in-dying requests originate from treatable pain or depression. Some worry about the broader repercussions for a society that accepts medically aiding the deaths of the terminally ill. The American Medical Association remains officially opposed.
Without the support of the rest of the profession and much of society, aid-in-dying research methods don’t fit the model of good medical research, says Matthew Wynia, the director of the Center for Bioethics and Humanities at the University of Colorado. There’s no standard protocol, no standardized data collection or independent group that monitors data and safety—all of which are intended to protect patients and help ensure the quality of the research.
The Belmont Report, which guides federal recommendations for research on human subjects, recognizes that sometimes, no satisfactory options exist for some patients, Wynia points out. In those rare cases, a doctor may want to try an innovative treatment, something for which there’s no approved research protocol. While that’s legal, clinicians are supposed to avoid turning that innovation into established practice, or doing unapproved research on numerous patients, according to Wynia. Some of the same issues exist with medical marijuana, which is legal in several states but still illegal federally. “There’s no way to fix this at the individual level,” Wynia says. “There’s no immediate answer.”
That leaves researchers like Law and Parrot in a bind. They don’t have good ways to do research and communicate what they learn. But they’ve witnessed the suffering some dying people experience, and contrast that with many peaceful deaths of patients who choose aid in dying. “These are not hard deaths,” argues Shavelson, the California physician. “These are lovely deaths.”
Shavelson says he tries to be at the bedside on the day of his aid-in-dying patients’ death. “It’s a lighter atmosphere than you think,” he says. The patient takes the first drug, which Shavelson separates out from the rest of the mixture, and then Shavelson sits down at the bedside and reads aloud questions from the state’s required report. After about 30 minutes, he asks: “Are you ready to take the medications?” He mixes the drug cocktail and the patient drinks it.
“Usually, they go silent after taking the medication,” he says. “They’ve said what they’re going to say by that time.” For a few minutes, patients usually continue to sit silently, their eyes open. “And then, very, very slowly, they’ll close their eyes.”
Shavelson asks intermittently, “Are you still there?” At first, patients usually say yes, or nod. Within five or 10 minutes, they stop responding to the question. Then Shavelson will gently touch their eyelids. “When people aren’t deeply unconscious, they’ll sort of have a twitching response,” he explains. Within 10 or 15 minutes, the twitching response disappears, and patients enter a deep coma.
Using a heart monitor, Shavelson tells caregivers as a patient’s pulse slows and oxygen levels drop. “We wait a little while, and then I say, ‘Ah, the patient’s now dead.’”
This is the first generation of patients who have consciously hastened their death with medications in this way, Shavelson says. He tells them they’re pioneers. “What a different thing, to be able to say, ‘This is the day I die,’” he says.
Nursing requires hands-on training. But research has found that university curriculum often goes light on one of life’s universal experiences — dying. So some colleges have gone to new lengths to make the training more meaningful.
There’s a sound near the end — the death rattle. People stop swallowing. The lungs fill up. There can be involuntary moaning.
“So you get all that noise. And that’s really distressing for family members,” Professor Sara Camp of Nashville’s Belmont University says.
Camp and other nursing instructors at Belmont wear headsets and watch video monitors in a dark closet. The sounds they make emerge from realistic robots lying in hospital beds on the other side of the wall. The instructors also control the stats for the robots’ breathing, pulse and blood pressure.
“They’re really comfortable in their skills, like putting in IVs and giving medications,” Camps says. “In this one, they have to focus on communication, when there’s not that much to do. It challenges them.”
There are family dynamics to navigate, like explaining to grown children how their mother signed a do-not-resuscitate order. They have to balance caring for the dying patient and attending to the patient’s family.
A growing number of medical schools are incorporating palliative care and end-of-life discussions into the curriculum. The result? Less suffering for patients and physicians.
by Amy Paturel, MPH
During her first rotation in internal medicine, Dawn Gross, MD, PhD, assessed a bone marrow transplant patient along with a group of fellow residents and her attending physician. When they left the young patient’s room, the attending said, “He’s going to die.” Two days later the patient was dead.
“I remember thinking, ‘What did he see that I didn’t see?’” says Gross, who is now an associate professor in the department of palliative medicine at the University of California, San Francisco. Over time, she learned the science of illness and death and how to tell when a patient is dying. But what stuck with her was the fact that the patient had no idea he was going to die.
Traditionally, a doctor’s primary job was to keep you alive, not discuss how you want to die — or even if you are going to. Now, the paradigm is shifting. Instead of employing extreme measures, doctors are increasingly learning how to stop interrupting death — and to talk about what that looks like.
“Patients need to know what is happening to them, so they can plan,” says Tamara Vesel, MD, chief of palliative care and professor at Tufts University School of Medicine. “And doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.”
Unfortunately, data suggest most doctors feel ill-equipped to tackle end-of-life conversations. A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. And in 2016, 88% of residents reported little to no training on end-of-life care during residency. But that is starting to change.
“Doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.”
Tamara Vesel, MD
Tufts University School of Medicine
Increasingly, medical school leaders are implementing end-of-life training that includes real-life practical skills. At the same time, more physicians are beginning to view end-of-life conversations as a medical tool that’s as important as any drug or device. The result: “Don’t die on my watch” is being turned upside down.
A paradigm shift
With advances in medicine and technology, Americans are living longer, often with ongoing or repeated hospitalizations. More than one quarter of all Medicare expenditures occur during a patient’s last year of life. But life-extending treatments have trade-offs.
If faced with a serious illness, most people say they would prefer a natural death rather than exhausting all medical options, according to survey data. And more than two-thirds of people say they want to die at home, while less than a third actually do. Medical schools are uniquely positioned to help bridge the gap between what patients want at the end of life and what they’re actually getting.
“Just because we have the technology to prolong life doesn’t mean it’s appropriate to use it,” says Vesel. “The problem is, we’re so afraid of paternalism in medicine that we don’t use our medical knowledge and experience to sufficiently guide patients.”
Instead, many doctors focus on presenting a smorgasbord of medical choices — “then we let the patient choose so we feel like we’re off the hook,” says Daniela Lamas, MD, a critical care doctor at Brigham and Women’s Hospital, Harvard faculty member, and author of You Can Stop Humming Now.
Yet, according to Scott Halpern, MD, PhD, MBE, professor of medicine at the Perelman School of Medicine at the University of Pennsylvania, the single most important determinant of the choices patients make is how doctors communicate. In a series of studies, Halpern and his colleagues discovered that seriously ill patients are more likely to select comfort-oriented care at the end of their lives if that was the default option they were randomly assigned. Similarly, when chest compressions, breathing machines, and feeding tubes were the default choices, they were more likely to select those invasive measures, too.
The goal for physicians then is to know their patients well enough to shepherd them toward the treatment path that best matches their values. “It is scary to ‘nudge’ a patient toward an end-of-life decision, but maybe that’s what it means to be a doctor — leading patients toward the decisions that are most consistent with their wishes,” says Lamas.
That’s one reason insurers are paying doctors to have real conversations around end-of-life planning. The goal: to limit suffering for the patient and his or her loved ones — but also to provide a meaningful way for physicians to help guide patients through the natural process of dying.
A new wave of training
Currently, the Liaison Committee on Medical Education, the organization that accredits medical schools, does not require clinical rotations or courses on palliative medicine or end-of-life care. Part of the issue is that these skills “can’t be taught through lectures and demonstrations,” says Susan Block, MD, a professor of psychiatry and medicine at Harvard Medical School. “The only way to improve competencies is through field practice and feedback.”
To that end, a growing number of medical educators are creating rotations within hospices, nursing homes, and assisted living facilities to give students and residents an opportunity to practice these skills. Institutions, including Tufts University School of Medicine, the Robert Larner, M.D., College of Medicine at The University of Vermont, University of California, San Francisco, School of Medicine, and others are weaving palliative care training into everything students do. “That’s a huge culture shift,” says Gross.
To determine how best to train students to do this important work, Tufts University School of Medicine Dean Harris Berman has been meeting with the academic deans of four Massachusetts medical schools every six months since early 2017. The deans agreed upon a set of minimal competencies every medical student should have prior to graduation, and continue to work on next steps to meet and test these competencies.
As part of this effort, Tufts University School of Medicine plans to introduce a new curriculum in the fall of 2019. “Rather than a single class, a ‘Patient Experience’ thread — encompassing end-of-life and palliative care, advanced communication, and impact of health on patients and their families — will follow students through all four years of medical school,” says Vesel.
The Larner College of Medicine, too, is equipping physicians-in-training to have these conversations. In addition to integrating palliative care and end-of-life training into all four years of medical school, third year students participate in a “bridge week” focused solely on hospice and palliative medicine. The 35-hour curriculum covers practical skills, symptom management, communication tools (with hands-on simulated training), and resilience, explains Stephen Berns, MD, director of education for palliative medicine and assistant professor of family.
Using tools developed by a nonprofit training organization called VitalTalk and Atul Gawande’s Ariadne Labs’ Serious Illness Care Program, Larner COM students learn how to share information, respond empathically, and drill down patients’ values. “It’s really about helping medical students and residents use their medical expertise to identify a treatment plan that matches patients’ goals,” says Berns.
At the Perelman School of Medicine, Halpern lectures fourth year medical students about how patients, caregivers, and clinicians make end-of-life decisions. Their program also requires pulmonary and critical care fellows to participate in end-of-life communication training before beginning their fellowship. “Each fellow has to have a number of supervised conversations with real patients and family members,” says Halpern. “They’re also required to watch and listen to attendings engage in similar conversations.”
Surveys consistently show that care providers who do this well can make a significant difference for patients. Research indicates that palliative medicine can reduce anxiety and pain, relieve symptoms, and improve quality of life and mood. It can also reduce spending, according to a recent meta-analysis of inpatient specialty palliative care.
Coming full circle
At the dawn of medicine, physicians were with their patients throughout the life cycle — and certainly at their death. Doctors viewed being at the patient’s deathbed as an honor, a privilege. Medicine is slowly returning to those values.
“We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”
Dawn Gross, MD, PhD
University of California, San Francisco
Research consistently shows that doctors who are comfortable with end-of-life issues provide better care to dying patients than those who aren’t. “More and more clinicians are recognizing their professional and moral responsibilities extend beyond preserving life and include helping people whose life is coming to an end have their last days weeks and months be as comfortable and fulfilling and meaningful as possible,” says Halpern.
Adds Gross, “We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”