In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.
Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.
Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.
Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.
“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”
Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.
Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.
“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.
Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.
Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.
While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.
“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”
When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.
“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”
Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.
“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”
Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.
“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”
Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.
While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.
“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”
While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.
“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”
For Riess, her job is more of a calling – the most fulfilling role she could imagine.
“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”
Renee (a pseudonym) closed her eyes, lay her head in her brother’s arms, and gently drew her last breath. Minutes before, she had chugged a bitter concoction of Seconal and juice, while the loved ones encircling her offered their final blessings and softly sang her out of this world.
This carefully choreographed scene was exactly the way Renee had imagined her death after months of careful planning. She had endured a grueling course of cancer treatments several years prior. When the cancer recurred and metastasized, she was quickly drawn to the possibility of a medically assisted death. As a resident of Vermont, she became one of the roughly 1 in 5 Americans legally permitted to end their lives when faced with a terminal illness.
As the pandemic has made avoiding the subject of death all but impossible, planning for death has taken on new urgency. Palliative care experts have urged people to document end-of-life wishes in advance directives, while end-of-life startups have tapped into the market potential of death. These developments align with what has long been a strong motivation for terminally ill people seeking MAID: to control and carefully craft the scene of death.
I am a medical anthropologist who has spent the past five years studying the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. I interviewed over 140 patients, health care providers, caregivers, activists, and legislators to collect their stories and experiences. I also attended medical conferences and advocacy events where MAID was being discussed.
While I learned a lot about what drives people to MAID, I was particularly fascinated by what MAID does to death. The option transforms death from an object of dread to an anticipated occasion that may be painstakingly planned, staged, and produced. The theatrical imagery is intentional: An assisted death is an event that one scripts, a matter of careful timing, with a well-designed set and the right supporting cast. Through this process, death becomes not just something that happens but also something that is made.
The four friends I interviewed about Renee’s life and death all used similar words to describe her: independent, stubborn, strong-willed, even a bit of a curmudgeon. She loved being a crone, what some people define as a woman who has gone through menopause and stands in her power and wisdom. She never married nor had a significant romantic relationship, which was a source of sorrow for her. Still, her life was rich with friendships, meaningful work as an artist and teacher, and a devoted spiritual practice.
Renee was also dignified. A friend recounted how, during a spiritual retreat, a group was doing a silent meditation while walking outdoors. They stumbled upon Renee, up to her breasts in snow, waving calmly.
“She had fallen through a spot and was literally stuck in the snow up to her chest, but she was just like, ‘Um, excuse me,’” her friend recounted. “Where other people might be thrashing around or screaming for help, she was just like, ‘Hello.’ And that’s a really good way of describing her.”
As her cancer progressed, Renee was in constant pain. She rejected strong pain medications to avoid a foggy brain. Fluid built up in her chest, affecting her breathing. An intensely private and independent person, she did not want to depend on others for care at the end of life. And she did not want to be stuck in her body longer than it could be useful to her.
Renee loved her life, but she knew where her illness was headed. When she reached the limits of what she thought she could bear, MAID offered an enticing pathway out.
Historically, humans have largely been passive witnesses to their own deaths. Since the middle of the 20th century, however, technological developments in medicine have offered increasing possibilities for human control over one’s own death. These changes have led to heated debates about what counts as death and altered the kind of event we take death to be.
MAID renders not only the time of death but also the broader landscape of death open to human control. MAID allows terminally ill patients to choreograph their own deaths, deciding not only when but where and how and with whom. Part of the appeal is that one must go on living right up until the moment of death. It takes work to engage in all the planning; it keeps one vibrant and busy. There are people to call, papers to file, and scenes to set. Making death turns dying into an active extension of life.
Staging death in this way also allows the dying person to sidestep the messiness of death—the bodily fluids and decay—what the sociologist Julia Lawton has called the “dirtiness” of death. MAID makes it possible to attempt a calm, orderly, sanitized death. Some deliberately empty their bladder or bowels in advance, or plan to wear diapers. A “good death,” from this perspective, has not only an ethical but also an aesthetic quality.
Of course, this sort of staging is not without controversy. For some, it represents unwelcome interference with God’s plans. For people like Renee, however, it infuses one’s death with personal meaning and control.
Renee set the weekend for her death to avoid another hospitalization to drain fluid from her chest, a procedure she had undergone several times. Determined not to face hospitalization again, she bought a plane ticket for a spiritual mentor who lived in another state and invited a small group of family and friends to gather at her home.
It was an emotional but humor-filled weekend. “She didn’t want us to be all sad and heavy about it. She wanted to have a good time,” one friend recalled.
Medical aid-in-dying transforms death from an object of dread to an anticipated occasion that may be planned, staged, and produced.
Her friends were amused by the incongruously frenetic pace of her dying. All weekend, Renee shuffled around the house, shredding papers and making lists and phone calls. Her friends made up a playful song, “Follow the Little Blue Hose,” set to the tune of “Follow the Yellow Brick Road” from the film The Wizard of Oz, which they sang as they watched her scurry around trailed by an oxygen tank.
Renee was very organized about dying. She had thought about which people she wanted to inherit her dog, her journals, and her art. She ordered dry ice for her in-home wake and wrote a check to the crematorium and clipped it to the relevant paperwork. She even finished her taxes. She left detailed instructions for her postmortem care and funeral in a file to be opened after her death. A pine casket, constructed by a friend, had been sitting in her shed for months. The only matter left to attend to was her actual death.
Renee had never been certain she would take the lethal dose of Seconal. (In Oregon, only about 64 percent of people who obtain the medication go on to ingest it.) Initially, she hoped she might avoid it by willing herself to die. A natural death was more aligned with her worldview and spiritual practice. Her friends performed an “unbinding” ceremony in an effort to untether her soul from her body.
But she couldn’t make herself go. And if she didn’t die, her friends would need to go home, and she would be expected at the hospital on Tuesday, which had become, for her, a fate worse than death.
When Renee went to bed Saturday night, she had not yet made up her mind about what she would do. During the night, her intense coughing echoed throughout the house. Finally, she got up at 4 a.m., grabbed her laptop, and went back to her bedroom to pen love letters to friends. At 6 a.m., she emerged and announced she was ready to go.
While Renee said her goodbyes, four friends sat in a circle and prepared the medication with a makeshift ritual ceremony. Using beautiful pottery and sacred chalices, they emptied 100 capsules—the number of Seconal pills required to form a lethal dose—singing while they worked, and carefully mixed the powder with juice. They all piled on the couch for a final photo shoot. Renee laid across their laps in a favorite leopard print and purple velvet outfit.
Then, in her signature no-nonsense style, Renee got into bed and started directing everyone on where to stand. They surrounded her as she drank, chanting softly. Ten minutes later, she was dead.
Some health care providers I’ve talked to worry over the portrayal of deaths like Renee’s. There is a danger in suggesting that death should be clean and orderly, they rightfully suggest, when most deaths are far from it. Media accounts of glamorized assisted deaths may set up unrealistic expectations for what death should look like.
And some MAID deaths fail to follow the plan, as I learned from my research. There was the woman who took hours and hours to die, scaring her children when she repeatedly turned blue, then miraculously started breathing again. There was also the man who swallowed a dose of morphine that “should have killed a grizzly bear,” according to his physician, yet who nevertheless awoke the next morning.
In my experience, however, most of the bereaved remain deeply satisfied with their loved one’s medically assisted death. They tend to view supporting a loved one’s wishes for MAID as an ultimate form of care and being by their side as a consummate honor.
After she died, Renee’s friends quickly got to work implementing her plans. They called the hospice nurse to pronounce her dead. They notified people, following a list Renee had annotated with her characteristic wit: those to be nice to, those she really didn’t give a shit about but should probably know that she had died. Three women washed and anointed her body with meticulous care. The coffin was set up in the living room for a three-day in-home wake. Renee’s funeral was held in the same room, then a friend drove her body to the crematorium, followed by a caravan of other friends.
Hilarity frequently punctured the somber mood. “It was just like a comedy of errors,” a friend recalled. “The dry ice all melted, like a day or three days earlier than it should have, the casket almost didn’t fit in the car. … Right until the last minute, we were like, ‘Thanks, Renee,’ you know, like, ‘good planning on that one.’”
Despite these hiccups, the friends who participated in Renee’s death felt extraordinarily honored to be present. They saw her final act as brave and dignified, very much aligned with the way she lived her life. “It takes personality, at least that’s my impression,” one friend said. “It’s hugely courageous to go, ‘All right, in this minute, I’m gonna be here, and the next minute, I’m not. Here I go to make that happen. I’m gonna make that happen right now.’”
This comment captures an important feature of MAID: For observers, there is something startling about going from being fully alive one minute, and then, suddenly, willfully dead. Aside from suicide, this is not how we’re taught our own deaths happen.
But MAID is shifting the stakes of what we think death might be—transforming death into something we make.
At a time when so many are dying against their will, it may seem out of sync to discuss the option of having a doctor help people end their lives when they face intolerable suffering that no treatment can relieve.
It’s less a question of uncontrollable physical pain, which prompts only a minority of requests for medical aid in dying, than it is a loss of autonomy, a loss of dignity, a loss of quality of life and an inability to engage in what makes people’s lives meaningful.
Intractable suffering is defined by patients, not doctors. Patients who choose medical aid in dying want to control when they die and die peacefully, remaining conscious almost to the very end, surrounded by loved ones and able to say goodbye.
A similar law has been introduced repeatedly, and again this January, in New York. Last year, Maryland came within one vote of joining states that permit medical aid in dying. Diane Rehm, the retired National Public Radio talk show host, says in a new film she created on the subject, “Each of us is just one bad death away from supporting these laws.”
Most people who seek medical aid in dying would prefer to live but have an illness that has in effect stripped their lives of meaning. Though often — and, proponents say, unfortunately — described as “assisted suicide,” the laws hardly give carte blanche for doctors to give people medication that would end their lives quickly and painlessly. The patient has to be terminally ill (usually with a life expectancy of less than six months), professionally certified as of sound mind, and able to self-administer the lethal medication without assistance. That can leave out people with advanced dementia or, in some cases, people with severe physical disabilities like those with amyotrophic lateral sclerosis (A.L.S., or Lou Gehrig’s disease).
A desire to broaden access to medical aid in dying prompted Ms. Rehm to create the film “When My Time Comes” to air on public television starting April 8. (A free livestream of the film preview and discussion will be available on April 8, at 12:45 p.m. Eastern, at weta.org/WhenMyTimeComesFilm.) The film follows the 2020 publication of Ms. Rehm’s book of the same title, subtitled “Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.” Both the book and film were inspired by the protracted death in 2014 from Parkinson’s disease of John Rehm, her first husband, to whom she was married for 54 years.
Mr. Rehm, then living in Maryland, could no longer stand, feed or toilet himself, but his doctors could not legally grant his plea to help him die quickly. Instead, the only recourse he was given was to refuse all food, liquid and medication, which ended his life 10 days later.
This is still the only option doctors can legally “prescribe” for the overwhelming majority of Americans who live in the 41 states that have yet to pass a medical aid-in-dying law. The approach does indeed work, but it’s not an acceptable choice for many dying patients and their families.
Ms. Rehm said her goal is that no patient should have to suffer the indignity her husband experienced at the end of his life. She described his death as “excruciating to witness,” even though after about two days the absence of food and water is usually quite tolerable for the patient.
Dr. Jessica Nutik Zitter, a palliative care physician at Highland Hospital in Oakland, Calif., said in an interview, “The concept of medical aid in dying is gaining acceptance, but it takes a while for people to be comfortable with it. Doctors are trained to just keep adding technology to patient care regardless of the outcome, and withdrawing technology is anathema to what we’re taught.”
As a result, doctors may convince dying patients and their families to accept treatments “that result in terrible suffering,” said Dr. Zitter, author of the book “Extreme Measures: Finding a Better Path to the End of Life.” In her experience, a fear of losing control is the main reason patients request medical aid in dying, but when they have access to good palliative care, that fear often dissipates.
Only a third of patients who qualify for medical aid in dying actually use the life-ending drugs they get, she said, explaining that once given the option, they regain a sense of autonomy and no longer fear losing control. In a study of 3,368 prescriptions for lethal medications written under the laws in Oregon and Washington state, the most common reasons for pursuing medical aid in dying were loss of autonomy (87.4 percent); impaired quality of life (86.1 percent), and loss of dignity (68.6 percent).
Of course, many doctors consider medical aid in dying contrary to their training, religious beliefs or philosophy of life. Dr. Joanne Lynn, a geriatrician in Washington, D.C., who is not a supporter, said the emphasis should be on providing better care for people who are very sick, disabled or elderly.
“We should resist medical aid in dying until we can offer a real choice of a well-supported, meaningful and comfortable existence to people who would have chosen a medically assisted death,” Dr. Lynn said. “There’s currently no strong push for decency in long-term care. It’s not a real choice if a person’s alternative is living in misery or impoverishing the family.”
Barbara Coombs Lee, president emerita of Compassion & Choices, a nonprofit organization in Portland, Ore., that seeks to expand end-of-life options, said, “The core principle of medical aid in dying is self-determination for someone who is terminally ill.”
Still, Ms. Lee, the author of “Finish Strong: Putting Your Priorities First at Life’s End,” said that there are options for the majority of dying patients who still lack access to an aid-in-dying law. In addition to voluntarily refusing to eat and drink, everyone has the right to create an advance directive that stipulates the medical circumstances under which they would want no further treatment.
For example, people in the early stages of Alzheimer’s disease could specify that when they reach a certain stage — perhaps when they no longer know who they are or recognize close relatives — they do not want to be treated if they develop a life-threatening infection.
Leaving such instructions when a person is still able to give them “is a gift to the family, relieving loved ones of uncertainty,” Ms. Lee said. She suggested consulting the website compassionandchoices.org for tools that can help families who want to plan ahead.
Ten years after John was diagnosed with Parkinson’s disease, he couldn’t stand, walk, eat or go to the toilet by himself. Outraged because the law forbade his doctor to help hasten his death, he resolved to stop eating and drinking.
Diane, the celebrated NPR talk show host and John’s wife of 54 years, kept vigil for the next 10 days. Just after 2 a.m. on June 23, 2014 — a few hours before John died — she took out her iPad and typed the first sentences of a passionate argument for medical aid in dying.
“In most of America, lawmakers and the church are deciding this issue for other people,” she says. “People they’ve never met. People whose suffering they have no way of understanding.”
In 2016, Diane retired from NPR station WAMU after working there for more than 30 years. Since then, she has championed what she and other advocates call “death with dignity.” On Wednesday, PBS will broadcast her new documentary, “When My Time Comes.”
The one-hour program and a similarly titled book published last year describe the death of her husband, a former lawyer for the Kennedy and Johnson administrations, and the perspectives of politicians, doctors and patients about the movement that has led to new laws in nine states and the District.
Diane remarried in 2017, at age 81, to retired Lutheran minister and therapist John Hagedorn. Since leaving WAMU, she has been producing a twice-weekly podcast and a monthly book club. She spoke to The Washington Post in an hour-long telephone conversation that has been edited for length and clarity.
Q: Why did your husband want to die?
A: It wasn’t so much that he was in pain. He said he had lost his sense of dignity. He was a very proud man, and he felt that if he continued to live he was going to lose even more dignity. He still had his sharp mind, and he knew exactly what he was doing and saying. Our daughter said, “Dad, we can keep you comfortable,” and he said, “Dammit, I don’t want comfort.”
I’ve since learned that pain is number 6 on the list of reasons why people want medical aid in dying. The loss of joy in life is number one. The morning after John had that conversation with his doctor, I remember walking in to see him and saying: “Sweetheart, you look wonderful! Your face is rosy and your eyes are sparkling!” He said: “I have begun the journey.”
Q: Do you worry that these laws allowing doctors to prescribe medications for the terminally ill so they can die peacefully could be a slippery slope toward making suicide more acceptable?
A: There’s a huge difference between medical aid in dying and assisted suicide. People who commit suicide want to die. In the film, I speak with a 37-year-old mother of two with breast cancer that had spread throughout her body. She said “If I had my druthers, I’d live until I’m 90. But I know I can’t, and I don’t want my 13-year-old son to see me suffer.” That’s the difference between medical aid in dying and suicide. One is a choice. The other is there is no choice; she knows she’s going to die and she wants to die peacefully and in a way that doesn’t leave her children with memories of her in agony.
Q: What limits, if any, protect people who might be pressured to end their lives early?
A: These laws are very specific, modeled on the first one, passed in Oregon in 1997. You must be within six months of death. You must be able to self-administer medication. You therefore cannot wait until your swallowing mechanism no longer operates and you also cannot wait until you can no longer say that you’re ready. In some states, you must be interviewed by a psychiatrist, alone, so that it’s clear that no one else is making this decision.
Q: What surprised you the most as you did your research?
A: What really shocks me is the fact that the Roman Catholic Church has been the most well-funded and outspoken opponent of medical aid in dying. A referendum in Massachusetts found some 70 percent of those polled said they were in favor. But then the church put $5 million into defeating that proposal.
Now, if your faith says to you, “I want God to decide when my life is going to end,” I’m in support of that. I’m an active Episcopalian myself.
If that’s what you want for yourself, I’m happy to support you along the way, and if you want everything medical aid can offer, then of course that’s what you should have. But I also believe that for people who’ve reached the end of a long, hard illness and are in their final six months before death, well, they should have a choice.
Q: What else do you think is preventing these laws from passing in more states?
A: Denial is a big problem. Talking about death is so taboo. You see me in the film standing in the church, asking how many people in the congregation plan not to die? Everybody is uncomfortable with the idea of death, so they don’t want to talk about it. But then what happens when your mother or father is dying and you haven’t spoken to them in advance? How are you to know what they want? Do they want to be hooked up to every possible machine at the end?
People also don’t know how and where the laws are changing. We now have medical aid in dying in Washington, D.C., but so many people do not know it. And 10 states are currently debating it, including New York and Connecticut. I am very hopeful this film will get more people talking about it. I also think covid has gotten people thinking more about how close death is for all of us.
As soon as the virus hit, I called my own physician and said I do not wish to go to a hospital if I come down with covid. I will not be put on a ventilator. She said “If that is your wish, I will make a note of it.” I switched doctors once we began making this film and I realized how few doctors are willing to help people who are ready to make up their minds.
Q: How did your bosses at NPR react to your outspokenness on such a controversial issue?
A: In 2016, there was a story about my advocacy in The Washington Post. I was planning then to do several dinners for Compassion & Choices, [ a U.S. nonprofit group working to improve patients’ rights]. NPR called and took me to task. Then 10 of the top executives at NPR came to WAMU and we sat in the conference room with my manager, and he was so worried I was going to stand up and say I quit if they told me I couldn’t do those dinners. I told them I was sorry but I wasn’t backing down. I wasn’t being paid to speak, but it was very important to me. Eventually they compromised and said do the three dinners you committed to do but if you speak out on this again on the air you will have to say you’re an advocate for medical aid in dying.
Q: Was this tension a factor in your decision to retire?
A: Absolutely not. Not at all. I was going to be 80 and I honestly feel that when those of us who’ve had such long and wonderful careers reach a certain point it’s no longer fair to just keep going because we have a big audience and people want us to keep going. There are young, talented people who ought to have a right to move into those chairs.
Q: Your documentary shows you with a young man videotaping you expressing your wishes for how you want to die. What are you telling him?
A: That’s my grandson Benjamin. He was 19 at the time. I’m telling him that should I somehow become an individual who experiences Alzheimer’s, I need you to tell me early on that you are seeing this. If that does happen, I will begin making my plans to end my life before I am no longer able to do so. Obviously, this is not allowed under any current Medical Aid in Dying laws around the country, so I will have to plan to take matters into my own hands.
When my time comes, I want all of my family with me: my husband, son, his wife, my daughter, her husband, their children and my dearest friends. I want us all to be sipping champagne and telling good stories about the times we’ve shared. And when the moment arrives, I want to go into my own bedroom with my children and my husband and I want to be able to go peacefully with the medications.
Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death.
Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights.
But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.
Linda Heim knew her dad didn’t plan to wait for the cancer to kill him. For decades, he’d lived in Montana, which they’d thought was one of the few places where terminally ill people could get a prescription to end their life.
After two years of being sick, Heim’s dad got the diagnosis in 2019: stage 4 kidney cancer. His physician offered treatments that might extend his life by months. Instead, the 81-year-old asked the doctor for help dying. Heim said her parents left the appointment in their hometown of Billings with two takeaways: The legality of medically assisted death was questionable in Montana, and her father’s physician didn’t seem willing to risk his career to put that question to the test.
“My parents knew when they left there that was the end of that conversation,” said Heim, now 54. “My dad was upset and mad.”
The day after the appointment, Heim’s mother went grocery shopping. While she was gone, Heim’s dad went to the backyard and fatally shot himself. (Heim asked that her father’s name not be published due to the lingering stigma of suicide.)
About a decade earlier, in 2009, the Montana Supreme Court had, in theory, cracked open the door to sanctioned medically assisted death. The court ruled physicians could use a dying patient’s consent as a defense if charged with homicide for prescribing life-ending medication.
However, the ruling sidestepped whether terminally ill patients have a constitutional right to that aid. Whether that case made aid in dying legal in Montana has been debated ever since. “There is just no right to medical aid in dying in Montana, at least no right a patient can rely on, like in the other states,” said former state Supreme Court Justice Jim Nelson. “Every time a physician does it, the physician rolls the dice.”
Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death. Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights. But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.
Even the terminology to describe the practice is disputed. Some say it’s “suicide” anytime someone intentionally ends their life. Others say it’s “death with dignity” when choosing to expedite a painful end. Such debates have gone on for decades. But Montana remains the sole state stuck in a legal gray zone, even if the practice can still seem taboo in many states with clear laws. Such continued uncertainty makes it especially hard for Montana patients like Heim’s dad and their doctors to navigate what’s allowed.
“Doctors are risk-averse,” said Dr. David Orentlicher, director of the health law program at the University of Nevada-Las Vegas, who helped write clinical aid-in-dying guidelines published in the Journal of Palliative Medicine in 2016. “The fear of being sued or prosecuted is still there.”
Despite that, access to medical aid in dying is gaining momentum across the U.S. Outside Montana, eight states and the District of Columbia allow the life-ending aid — six of them since 2014. So far in 2021, legislators in at least 19 states have pushed aid-in-dying bills, most seeking to legalize the practice and some seeking to drop barriers to existing aid such as expanding which medical professionals can offer it. Many are repeat legalization efforts with some, like in New York, dating as far back as 1995. Only the Montana bill this year specifically sought to criminalize it.
North Dakota considered legislation to legalize medically assisted death for the first time. Rep. Pamela Anderson, a Democrat from Fargo who proposed the measure after hearing from a cancer patient, said she wasn’t surprised when the bill failed in February in a 9-85 vote. The state’s medical association said it was “incompatible with the physician’s role as healer.” Angry voters called Anderson asking why she wanted to kill people.
“But I heard from just as many people that this was a good bill,” Anderson said. “There is momentum to not let this concept go away.”
Back in Montana, now retired state Supreme Court Justice Nelson said he has always regretted joining the majority in the case that allowed the practice because the narrow ruling focused on physicians’ legal defense, not patients’ rights. Having watched a friend die slowly from disease, Nelson, 77, wants the choice himself if ever needed.
Despite — or because of — the court decision, some Montana doctors do today feel that they can accommodate such patient decisions. For example, Dr. Colette Kirchhoff, a hospice and palliative care physician, said until she retired from private practice last year she considered patients’ requests for life-ending drugs.
Physicians who help in such cases follow well-established guidelines set by other states, Kirchhoff said. A patient must have six months or less to live — a fact corroborated by a second physician; can’t be clinically depressed; needs to ask for the aid; and be an adult capable of making healthcare decisions, which is determined by the attending physician. They must also administer the life-ending medication themselves.
“You’re obviously not going to do a case that is vague or nebulous or has family discord,” Kirchhoff said. “The doctors who are prescribing have felt comfortable and that they’re doing the right thing for their patient, alleviating their suffering.” Of her few patients who qualified for a prescription, she said, none actually took the drugs. Kirchhoff noted that, in some cases, getting the prescription seemed to provide comfort to her patients — it was enough knowing they had the option if their illness became unbearable.
For the past six legislative sessions — dating to 2011 — a Montana lawmaker has proposed a bill to clarify that state law doesn’t allow physician-assisted death. Republican Sen. Carl Glimm picked up that effort the past two sessions. Glimm said the current status, based on the more than decade-old court decision, sends a mixed message in a state that the Centers for Disease Control and Prevention ranks as having among the nation’s highest suicide rates. Glimm said allowing someone to end their life because of pain from a terminal illness could normalize suicide for people living with depression, which is also a form of pain.
“It’s really hard because I do sympathize with them,” Glimm said. “What it boils down to is, if you’re going to take your own life, then that’s suicide.”
Kim Callinan, president and CEO of national nonprofit Compassion & Choices, said the comparison to suicide is frustrating. “People who are seeking medical aid in dying want to live, but they are stricken with a life-ending illness,” she said.
Glimm and his bill’s supporters say that some patients could be pressured into it by family members with something to gain, and doctors could prescribe it more often than they should.
But Callinan, whose group advocates for aid in dying, said that since Oregon first legalized it in 1997, no data has shown any merit to the warnings about abuse and coercion. One study showed no evidence of heightened risk of abuse within the practice for vulnerable populations such as the elderly. But critics have said states aren’t doing enough to track the issue.
By now, Leslie Mutchler, 60, knows most of the people on all sides of the debate after years of testifying in support of protecting aid in dying. Her dad, Bob Baxter, was a plaintiff in the case that eventually led to the 2009 Montana Supreme Court decision on medically assisted death. After leukemia whittled his body for years, he died in 2008 without the option, the same day a lower court ruled in his favor.
Mutchler said she didn’t understand how complicated the Supreme Court’s ultimate ruling was until her son TJ was diagnosed with terminal metastatic pancreatic cancer in 2016.
He was 36 and lived in Billings, Montana. By then, the 6-foot-5 man had lost 125 pounds off what had been a 240-pound frame. He couldn’t keep food down and needed a feeding tube for medicine and water. TJ Mutchler wanted to have the choice his grandfather never got. But when he went to his physician and asked for aid in dying, the response was it wasn’t legal. Eventually, Mutchler found a doctor to evaluate her son and write the prescriptions for phenobarbital and amitriptyline. TJ took the drugs more than two months later and died.
“People contact me asking how to find someone and it’s difficult,” Mutchler said. “That’s why people end up taking matters into their own hands.” Research into terminally ill populations is limited, but one national study published in 2019 found the risk of someone with cancer taking their own life is four times higher than the general population.
For Roberta King, another one of Baxter’s daughters, the ongoing fight over aid in dying in Montana means she knows every other winter she’ll make the more than 200-mile round trip from her Missoula home to the state capital. King, 58, has testified against all six bills that sought to ban aid in dying following her dad’s case. She memorized a speech about how her dad became so thin after his medicine stopped working that it hurt for him to sit.
“It’s still terrible, you still have to get up there in front of everybody and they know what you’re going to say because it’s the same people doing the same thing,” King said. But skipping a hearing doesn’t feel like an option. “If something were to happen to this and I didn’t try, I would never forgive myself,” she said.
The coronavirus pandemic dramatically changed Ms. Saoui’s work as a home hospice nurse in New York. Safety precautions created a physical distance between her and her patients and even cut some of her hospice colleagues off from their clients’ homes altogether last year. It deprived families and caretakers of ways to grieve together, and confronted hospice workers, however familiar with death, with a staggering scale of loss.
Through all the pressures, Ms. Saoui and other workers continued to provide solace and even moments of happiness to dying patients and their families.
“You sit down and you listen,” she said. “They express their fear, they express their emotions, and you guide them and tell them what to expect.” After a patient dies, she added, “I often want to hug the family members, but I cannot do that now.”
Instead, Ms. Saoui said, “I pray and do the best I can.”
More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted those conditions with what she called a good death: “peaceful, pain-free, at home and surrounded by their loved ones.”
While nurses have continued in-person home visits, some chaplain, social work and therapy sessions moved online because families preferred it. By August, most of that care switched back to in-person visits but with strict precautions, including wearing full P.P.E. at times and keeping six feet apart whenever possible.
Though a vast majority of Ms. Saoui’s patients in the last year did not have the coronavirus when they entered hospice, challenging restrictions have been placed on all patients and caregivers. Home hospice care can last for many months, and workers often develop close relationships with patients and their families.
But the pandemic has meant fewer occasions for families — and hospice workers — to mourn together in person at funerals or memorial services. For over a year, the size of those gatherings has been strictly limited by many states to try to stem the spread of the virus.
When hospice patients die, their caretakers often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who shared the same client. These staff meetings are now online, but the loss of being able to hold each other and shed tears together has deeply affected hospice workers, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to handle the loss of her young patients.
“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my own time for them. We do become connected with their families, but when I’m in their houses, that is their grief and I’m going to support them. I need to process my own loss outside of that.”
The hospice workers in the MJHS Health System, a nonprofit that covers New York and Nassau County, are comfortable around death in a way that many Americans are not. But the pandemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share in each other’s grief now more than ever,” she said.
The Rev. Christopher Sigamoney, an Episcopal priest who is a hospice chaplain, said he has tried to be there for his patients “even with their frustration, anger, hopelessness, depression and anxiety.”
He often told patients’ family members that it was “OK to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.
Father Sigamoney and his family were unable to be with his cousin, a retired doctor visiting from India, during the three days while she was on a ventilator in the hospital at the end of her life. He and a handful of relatives said “a few prayers” in the funeral home, he said, but they were unable to have a “proper burial” or ship the body home to India because of virus restrictions.
“I did not really understand when people would ask, ‘Why me and why my family?’” he said of the time before his cousin’s death. “Now I was asking the same questions. I said to God, ‘Now I’m angry at you, and I hope you can forgive me.’” Father Sigamoney said he was slowly recovering through prayer and helping his patients.
Last month, Josniel Castillo was hooked up to a battery of medical machines and monitors, surrounded by his parents and a multitude of stuffed animals, as Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his declining medical condition because of a rare genetic disease, this was a happy day. It was Josniel’s 11th birthday.
Mr. Urrutia launched into “Las Mañanitas,” a traditional Mexican birthday song. Josniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined in. Ms. Caraballo wiped away tears. They were, she said, “tears of joy” because she had not expected her son would live to be 11.
She requested another tune, and played tambourine as Mr. Urrutia launched into “Que Bonita Es Esta Vida.” They sang the final chorus together, part of which can translate to:
Oh, this life is so beautiful
Though it hurts so much sometimes
And in spite of its sorrows
There’s always someone who loves us, someone who takes care of us.
Afterward, Mr. Urrutia said most people are “unaware of what’s happening behind closed doors, both the difficulty and the beauty.”
This year in countless homes, there has been “a lot of pain and suffering, it cannot be denied,” he said. But in hospice work, he said, “you also see all of the heroes out there doing the simple things of life, caring for each other. The husband taking care of his wife or the mother taking care of her son.”
“Dying is a part of life,” he added. “Only living things die.”
As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.
Quadrupling in size in the last 20 years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.
A MorseLife Hospice and Palliative Care study focused on advances in hospice care found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”
“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”
Stuck in political limbo
While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.
Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:
Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.
Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.
With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.