Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death
Dr. Susan MacDonald, a palliative care doctor in St. John’s, wonders if more could have been done for her patient ‘Leo.’
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.
Medically assisted death is legal in Canada. However, there are no strict rules guiding how physicians should broach the topic with patients.
“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.
It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.
Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”
As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.
This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.
Question 15: What music do you want to be listening to on your last day alive?
The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.
“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.
The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team.
“She said: ‘The most important thing you could do to make my job easier would be if you could make sure that everybody who shows up for me has had one conversation about the end of their life with their family, just one.’ ”
Dr. Forrow says that having that one conversation is a lot harder than it sounds; for most people, talking about death is incredibly difficult. “It is like the biggest, existential, overwhelming, huge issue for anybody: that we are mortal.”
But Jehlen and his team weren’t deterred. They set out to make that conversation a little bit easier.
A Game About The End Of Life
The first step for the design team was thinking about everything they wanted for the end-of-life conversation: they wanted it to be done in person, with a family sitting around a table together, and everyone having a pleasant time.
A card game checked all the boxes. “Nobody gets together with their buddies to play poker just to pass some cards and some chips around,” Jehlen says. “They actually go to tell stories and share insights.”
Susanne Wilkinson, one of the women sitting with Katie Wallace in Medford, says the idea of a game about the end-of-life made her “a little dubious,” but, she says, “I am more curious to see what comes out of this.”
Wilkinson, of Somerville, is willing to withhold judgment. She believes that “as a society we haven’t done this very well yet, so I am looking for any angles that might provide some avenues.”
Jehlen and the rest of his design team had the same thought. So they designed a deck of cards with a different question printed on each card.
Question 3: Write your own epitaph in five words or less.
Question 5: If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?
Question 11: In order to provide you with the best care possible, what three non-medical facts should your doctor know about you?
Question 15: What music do you want to be listening to on your last day alive?
Every person answers the questions, and the other players decide whether an answer deserves a ‘thank you chip.’ The blue poker chips are meant to express gratitude for a thoughtful answer, and it’s those chips that end up determining the winner.
Jehlen says the design team wanted everyone in the family participating. The goal was to avoid focusing solely on the one person that might be nearing the end of their life.
Wilkinson particularly appreciated this element of the game. While death can be a lonely experience, she thought “the fact that it allowed you to connect with other people makes it satisfying.”
The game also sought to focus on life as well as death, since having a good death experience is often about understanding what one values in life.
Jehlen says he struggles to capture the game in words. “The problem we always run into is explaining the game is a little bit like explaining a joke.”
But he can’t remember a My Gift of Grace game where there wasn’t laughter. Recently, he was with a group of health care professionals, “in the middle of these 25 people playing the games,” he remembers. “I closed my eyes and it was just like rolls of laugher.”
Dr. Forrow was not involved in the development of the game but when he checked it out he found it to be “a wonderful blend of serious and humor.” He says that’s important but he tempers his enthusiasm.
Is The Game A Winner?
Dr. Forrow believes the jury is still out. He says there is one ultimate test for this game and for all the other efforts to facilitate an end-of-life conversation.
“We’ll find out whether it’s helpful or not by seeing people using it,” Dr. Forrow says.
The Action Mill has sold about 2,000 games since it went on sale in December.
Dr. Forrow thinks a lot more people need to be having this conversation. And, despite seeing progress, he says, “I don’t actually think anybody is yet doing a good job.”
In an effort to get more people playing the game and having the conversation, Jehlen and his colleagues had the idea of public game nights. Wallace and Wilkinson attended one of the 10 games nights that have been held across the country so far.
While the game was designed for families to play during the holidays, Jehlen says, “the feedback we started hearing was that actually playing the game, talking about end-of-life issues with strangers seemed like it was easier than maybe having this conversation with your family.”
Wallace would agree, but she has a word of warning. She says it’s comfortable either with “complete strangers or very close friends.” But when these game nights happen in small communities, there is the possibility of seeing “people you know in a very casual way,” and that, she says, is “a little odd.”
Jehlen has been viewing these public game nights as something of a warm-up for a family game night. But it’s not just families and strangers, it’s health care professionals too.
Where Does Medicine Come In?
To Jehlen’s surprise, “many of the people who are buying and playing the game are actually health care professionals.” About a third of their sales have been to hospitals, hospices and other health care groups.
On the one hand, this could be a vote of confidence for the game. But on the other hand, Dr. Forrow says, it’s helpful to have this end-of-life conversation in a non-medical context. He worries that when sitting in a doctor’s office, medical concerns dominate the conversation.
“I adamantly, firmly believe that for the conversations to be really about what really matters that they should start maybe even as far away from the hospital doctor’s office as they can,” Dr. Forrow says, “because these are much more fundamentally human issues than medical issues.”
Despite that fundamental nature of the topic, Dr. Forrow believes that it can be helpful not to think about it in such broad terms. “I think focusing on some simple concrete task that you did or did not do, like designating a health care proxy,” can make it easier, he says.
Jehlen admits there aren’t yet clear, concrete steps to take after playing the game. While many of the questions in the deck have a medical undertone, right now there isn’t a guide to help people translate game answers into a Living Will or an Advanced Care Directive. Although, he says, the game’s maker is considering putting downloadable end-of-life care forms on the website.
Regardless of what the next official steps may be, Susanne Wilkinson knows her next move: Before leaving game night, she said she wanted to borrow the game and play it again.
Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.
“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”
A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.
The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.
“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill.
In truth, composting is an ancient and basic method of body disposal. A corpse in the ground without embalming chemicals or a coffin, or in a quickly biodegradable coffin, becomes soil over time.
But death certificates in many states include a box that must be checked for burial or cremation, with no other options. Aboveground composting, through a mortuary process that requires no burial or burning of remains, is a new category without regulation about how it should be done or what can be done with the compost. What that means is that hardly any funeral director — even in states where laws about human remains are loosely worded — would risk offering it without state permission.
Pete Seeger, the folk singer, crooned about the idea: “If I should die before I wake, all my bone and sinew take. Put them in the compost pile to decompose a little while,” goes the song “In Dead Earnest.”
“When radishes and corn you munch you may be having me for lunch.”
In America, there are regional patterns to what comes of bodies after death. In the South and Midwest, where religious or cultural traditions run deep, more families opt for caskets and concretes vaults, and fewer choose cremation, experts say. In the Northeast, where family roots sometimes extend back centuries, people often favor burial in local cemeteries alongside ancestors.
In the Pacific Northwest, by contrast, death is treated somewhat differently, for reasons that sociologists and religious experts have long pondered. It’s a region where transient newcomers have defined the culture since pioneer days. Church attendance is among the lowest in the nation. Preservation of the environment is a central concern.
In Washington State, a larger percentage of residents are cremated than in any other state. Washington has more “green cemeteries,” which encourage a return to nature without manicured lawns and chemicals, than most states; only California and New York have more. And laws allowing physicians to help terminally ill patients hasten their deaths, known as “death with dignity,” were pioneered in the Pacific Northwest.
“It’s this interesting combination of environmental sensibility and individual choice,” David C. Sloane, a professor of public policy at the University of Southern California, said of the Northwest region. Now the prospect of legalized human composting, he said, puts many of those regional impulses in a spotlight. “It’s a test case for seeing how people think,” he said.
A container used in a study of human remains and composting last year at Washington State University.
Jamie Pedersen, a Democratic state senator from Seattle, is leading efforts to pass the legislation to permit a composting process after death.
Democrats control both chambers of the State Legislature, and Mr. Pedersen, the bill’s sponsor, said he had enlisted support from Republicans as well. Gov. Jay Inslee, a Democrat, has taken no position, a spokeswoman said.
At a hearing this month, no one spoke in opposition, though a state association of funeral directors said that it hoped clearer information could be added to the bill about where composted remains could be distributed. It was uncertain, too, whether such a measure would be seen as a priority during a legislative session crowded with issues that may be easier for politicians to talk about and win points on.
The bill would also legalize a separate process sometimes known as water cremation or alkaline hydrolysis. Under that process, already legal in 16 states, bodies are dissolved using a mixture of heated water and lye, leaving behind bone fragments and a sterile liquid.
People are drawn to the idea of aboveground decomposition mainly for environmental reasons, Mr. Pedersen said. There’s no coffin, no chemicals, none of the fossil fuels that would be needed for cremation, and no expensive cemetery plot required. Some religious traditions also favor ideas of simplicity and of earth returning to earth.
Though the process sounds simple, it would not be cheap. Preliminary estimates suggest that it could cost at least $5,000 — less, perhaps, than an elaborate burial service, but more than the most basic cremation.
In a study last year at Washington State University, six bodies donated for the research were placed in a closed container, wrapped in organic materials like alfalfa, then bathed in a stream of air warmed by microbes, and periodically turned. Lynne Carpenter-Boggs, a professor of soil science and sustainable agriculture and the lead researcher in the study, said that after about 30 days, the bodies essentially became soil.
Fears that composted remains might smell bad or contain toxic elements — from dental fillings, for example, or pharmaceutical residues — were allayed, Dr. Carpenter-Boggs said. She said that the heat generated by micro-organisms broke down organic matter and pathogens, and levels of pollutants like cadmium and mercury were within federal limits.
“It certainly is feasible that families would take home a small portion that they could keep for a long time,” Dr. Carpenter-Boggs said. “Or families could bring home a small amount that would be interred into their landscape, placed under a loved one’s favorite tree, similar to what people do with cremains.”
Katrina Spade, the founder and chief executive of Recompose, a Seattle company that hopes to build the first facility to use the new method and conduct funeral services based around it, said the movement toward cremation — now used in more than half of deaths in the nation — has led to an erosion of essential rituals. Remains are often just picked up from a crematory, she said, and that’s that.
“This is not simply a process to convert bodies to soil; it’s also about bringing ritual and some of that ceremony back,” Ms. Spade said.
Ms. Christian, the woman who is hoping recomposition will be an option after she dies, says she has long been uncomfortable with the other choices. She has ruled out burial. And she does not like the idea of cremation because of environmental costs — emissions and climate impacts of fossil fuels used in the burning process. But her friends remain divided on the issue.
“The vast majority are like, ‘That is so cool,’” she said. “And then the other response is, ‘Oh, gross.’”
In recent years, many Americans have begun looking for new ways to approach death. The death-positive movement supports people who prefer to die at home, and even those who wish to care for the bodies of loved ones the way many families did before the rise of the funeral industry. Historian Karol K. Weaver took a close look at that earlier approach, studying the business of death in early nineteenth century Pennsylvania, when care for the dying and dead fell mostly to women.
In those years, Weaver writes, watchers or watch-women—sometimes also referred to with the more generic term “nurse”—tended to the dying. These might be friends, family members, or hired help.
The watchers offered physical care and prayer, and organized visits by clergy and loved ones. Another important part of their job was observing the attitude of the dying person. If they could report a Good Death—characterized by courage and faith—it would comfort the other survivors. On the other hand, a Bad Death filled with struggle and pain could make for a cautionary tale aimed at the insufficiently pious.
Weaver writes that the final and most important job of a watcher was to verify that her charge was dead, observing the cessation of breath and even shaking the body to be sure no life remained.
Once the watcher’s work was done, “layers out of the dead” would wash, dress, and groom the body. They would also close the mouth of the deceased, using a tied cloth or a stick propped between the chin and breastbone, and use coins or other objects to keep the eyes closed. Layers out might also perform the skilled jobs that would later fall to undertakers, such as removing internal organs, blocking orifices, and slowing putrefaction by applying alum-covered cloth or filling body cavities with charcoal.
Like watchers, some layers out were unpaid family members or friends, but others were paid professionals. Looking at Philadelphia city directories from the early nineteenth century, Weaver found business listings for these women. Sometimes, they also advertised themselves as nurses or midwives—jobs that involved intimate care in a domestic setting just as laying out the dead did. Some listed themselves as “widows” in the directories. Weaver writes that this title suggested their connection with death and also explained the lack of a husband’s income that forced them to work for money.
Over the following decades, women’s death work declined. Increasingly, people died in hospitals rather than at home. With the Civil War came the need to transport Union soldiers’ bodies home, inspiring the rapid growth of undertaking as a business—often a father-and-sons affair. Now, families had a one-stop shop for coffin, burial plot, hearse, and the care and preservation of the body.
By 1867, the Philadelphia directory listed 125 male undertakers, one female undertaker, and four female layers out of the dead. The death industry as we know it today had been born.
Where do you see yourself in five years? Ten? Twenty? It’s not an unusual question to hear, though answering it is never easy.
But what if you knew you weren’t going to live that long? What if you knew your death was coming in a matter of months — or even sooner?
End-of-life care is, generally speaking, the care that someone receives after being diagnosed with a terminal illness, such as cancer or Alzheimer’s disease. While some diseases may be treatable and even curable, terminal diseases are typically those for which there are no cures, and decisions regarding end-of-life care prioritize making the most of an individual’s time left.
Max Vergo, a palliative care doctor and assistant professor at the Geisel School of Medicine, explained that end-of-life care is highly individualized, and not all treatments are appropriate for a patient’s wishes. For example, some patients prioritize extending their lifespans as much as possible, perhaps to be able to attend a special event like someone’s graduation. But opting to live longer might come at the cost of a lesser quality of life, such as being bound to a hospital bed.
Other patients, however, would rather prioritize different treatments that would allow them to maintain a certain quality of life — say, being able to walk freely or live at home — even if that means their death may arrive sooner.
“For some people, [prioritizing living longer] feels like the quality would be so poor, it wouldn’t really be valuable time,” Vergo said. “Knowing that their time is limited anyway, they may choose a [different] path. … At least they’ll have some control over what the quality [of life] looks like.”
End-of-life decisions, while incredibly individual, often involve an entire of team of medical professionals. Kathryn Kirkland, the director of palliative care at Dartmouth-Hitchcock Medical Center and a professor at Geisel, spoke about how her patients interact with an interdisciplinary team of doctors and nurses, social workers, chaplains, creative writing specialists, artists and other volunteers, all of whom work to take care of “the whole person.”
Kirkland also explained how her team works with patients’ families and loved ones as well. For example, patients with terminal issues often experience feeling like a burden to their families. In those cases, patients and their families go through counseling to discuss those feelings and identify ways to alleviate them.
“Taking care of somebody who is very sick is a hard thing to do sometimes,” Kirkland said. “Most family members end up reassuring the person with [the] illness that they want to help, that the patient is not being a burden, but unless you have those conversations, it can be hard to influence people’s decision making.”
Among the many options that patients sometimes have, one of the most controversial is physician-assisted dying, also known as physician-assisted suicide. Ann Bumpus, who taught the course Philosophy 5, “Philosophy and Medicine” last fall, explained how physician-assisted suicide is different from euthanasia because patients take a drug that they know will cause their deaths, whereas euthanasia is when a physician administers the drug, usually via an injection.
Euthanasia is illegal in all 50 states, but physician-assisted suicide is legal in a handful of states. It became legal for Vermont residents in 2013 with Act 39, the Vermont Patient Choice and Control at the End of Life Act; physician-assisted suicide is still illegal in New Hampshire.
Cristine Maloney is the hospice medical director for Visiting Nurse and Hospice for Vermont and New Hampshire, meaning that she sees patients in both states. She noted that, given the difference between the law between Vermont and New Hampshire, she’s always cognizant of which side of the border she’s on when working with patients.
Maloney noted that when discussing the option with patients in Vermont, she tried to understand why they are considering it in the first place. Many patients are unfamiliar with the process, which requires two different physicians — one consulting and one prescribing — and a waiting period of at least two and a half weeks. Another misconception is that patients receive a shot or intravenons treatment to end their life, when in reality, it’s a powder that dissolves in water that patients must be able to take by themselves.
When asked about the emotional aspect of physician-assisted dying, Maloney said that many of her discussions with patients revolve around their desire to have control over this aspect of their life, as well as the expected nervousness about what dying is like. She noted that family members, and even the doctors who prescribe the medicine, often feel intense emotions too.
“After a patient takes medication like this, they die, but their caregivers or family members live with that experience, and so they often have also had some strong opinions … or feel nervous or concerned about it as a family member,” Maloney said. “I think the same is true for the [physicians]. Most of them are doing this for the first time, and it’s very different than anything a physician usually does. We’re usually doing the opposite, giving folks medications to not end their lives.”
How does physician-assisted dying enter into the broader topic of suicide as a whole? The name of the process itself is controversial. While the terms “physician-assisted dying” and “physician-assisted suicide” seem interchangeable in everyday discourse, Vergo expressed a strong preference toward the former.
“In our profession, [we don’t use] ‘suicide’ because these are rational decisions that people make,” Vergo said.
Bumpus spoke about how some of the arguments against physician-assisted dying include the possibility that it leads to a rise in suicide rates in young people and terminally ill people, acknowledging that there is not yet good evidence to prove or disprove the concern. She also touched upon the use of the word “suicide” instead of “dying.”
“Calling it suicide emphasizes the similarity, and the similarity is just that, technically, the person takes their own life,” Bumpus said. “I think using the word suicide for both overstates the similarities. I’m not saying that suicide is always irrational or always wrong, but I think these cases are really special end-of-life cases and ought to be looked at separately.”
Another compelling concern with physician-assisted suicide that Bumpus brought up was that vulnerable populations, including individuals without good health insurance or a strong understanding of the medical system, may be pressured — however subtly — to choose physician-assisted dying without exploring other options as much as they would have otherwise. While we, as a society, often believe that more options leads to more freedom, that’s not always the case, and offering physician-assisted suicide could end with patients feeling obligated to take it.
So, what can students do? For students who are interested in the medical field and may one day have end-of-life care conversations with patients and families, Vergo spoke about how much of his teaching work involves perspective training. It’s essential for physicians to understand how, given the same information, different people can have different perspectives, and none of them are wrong. He also acknowledged that having these conversations can be emotionally taxing for health care professionals as well, and a tried-and-true “scaffold” to fall back on during these conversations can help.
Vergo emphasized that no one is born having mastered these skills, but instead they are gained gradually with practice and training.
“It’s just like in sports,” Vergo said. “You don’t just become an awesome soccer player on your own. You usually have a team and then a coach that helps you figure out how you can take the next step in your skills. We do a lot of coaching.”
For students who aren’t necessarily interested in the medical field, these topics can still be important to think about, especially since many patients in end-of-life care couldn’t have anticipated their current situations. Kirkland, who has taken care of students who have gotten into car crashes or skiing accidents, has even seen friends enter positions where they had to make important decisions. While these topics aren’t always easy to talk about, having conversations early about what you value most in life is a valuable investment.
“Even though students don’t really want to think about how they’re mortal like everyone else, it is probably worthwhile to think about who you would want making decisions for you if you couldn’t make them for yourself,” Kirkland said. “Having conversations with families is important to do.”
Under current law, people who have made every life decision based on their personal values and faith suddenly become, due to a terminal illness, a victim of someone else’s theology.
By Harlan Limpert
My Uncle Don died in his mid-60s after a two-year struggle with cancer. He was one of my favorites, an adult with whom I could discuss topics I couldn’t even mention to my parents. As a kid I’d often ride my bike to his home in Richfield with assurance of getting some cookies, Rice Krispies bars or a similarly unhealthful snack.
So when in college I learned he had lung cancer, I was heartbroken. Like so many cancer patients, he “fought the good fight” — chemo, surgery, radiation. Despite all the treatments, the disease was winning.
One day, after returning from one of countless doctor appointments, he walked into his bedroom, pulled out a gun and shot himself. My aunt, hearing the shot from the kitchen, lived another 20 years with that horrendous memory.
My uncle accepted some comfort care but would not succumb to the cancer robbing him of his humanity. He wanted to die as he had lived, on his own terms. But at that time, medical aid in dying (MAID) wasn’t legal. I have no doubt that, after realizing the futility of further treatment, Uncle Don would have taken advantage of MAID, which enables a mentally competent adult suffering from a terminal illness to request from their physician medication that will end life peacefully. Medical aid in dying has been legal in Oregon for 20 years since that state’s’ passage of its Death with Dignity law and is now legal in seven more states, including California.
Many of us know of someone suffering from a terminal illness. Most often they are willing to fight like hell for as long as possible but in the end pray for a gentle, painless death.
For decades, Gallup Polls have shown that a majority of Americans support medical aid in dying as an end-of-life option. Twenty state legislatures, including Minnesota’s, have introduced bills similar to Oregon’s Death with Dignity law. But, despite widespread support, lawmakers are reluctant to act. Why? Despite the overwhelming support of people of faith, some religious leaders are fighting it, insisting that Americans die by what they call a “natural death.” Suffering, they argue, is redemptive (“to change for the better”). Even the loved ones surrounding the dying person, it is believed, are changed — redeemed — by the experience.
Other people of faith — me included — see nothing redemptive about needless suffering. In fact, needless suffering is cruel and pointless. The proper religious response to suffering is to alleviate it, to show compassion to the one who is suffering. And there is nothing “natural” about being connected to numerous tubes injecting futile drugs into a dying person’s veins when that person would prefer her suffering to end. There is nothing natural about a respirator providing oxygen to a person whose clear intention was to have a good death, one surrounded by loved ones and absent of unnecessary suffering.
National Religious Freedom Day was Jan. 16. For at least 25 years, U.S. presidents have issued annual proclamations acknowledging and celebrating the many faiths that exist within our country. They have reminded us of our cherished legacy of religious liberty. They recall how Thomas Jefferson penned the Virginia Statute of Religious Freedom in 1786, which inspired the words of the First Amendment to the Constitution guaranteeing the free exercise of religion.
But when it comes to end-of-life care, an individual’s personal religious freedom is limited by current law. People who have made every life decision for decades based on their personal values and faith suddenly become, due to a terminal illness, a victim of someone else’s theology. The arena of life that is most personal and profound often has people with different religious values determine our options. At end of life, one’s personal values and spiritual beliefs ought to take priority over everything else.
Passing legislation to allow medical aid in dying in Minnesota will enable end-of-life options to be decided by an individual’s values and spiritual beliefs and no one else. Those who choose medical aid in dying can do so. Those who do not would not be affected.
As National Religious Freedom Day is celebrated, let us remember to honor religious freedom and show compassion to those wishing to end their suffering.
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.
