John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician.
At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.
Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a website for self-referral, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious.
By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care improves outcomes and in fact, can prolong life.
But modern palliative care is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.
Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but receive 75 per cent of palliative care services. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change.
And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.
Making palliative care more accessible
The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care.
Building the palliative care workforce is essential. The palliative care workforce in Canada is estimated to be 773 doctors for a population of 39 million. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.
There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.
New group of interfaith leaders and laypeople following more than a dozen denominations call for change in law on assisted dying
Poll finds 53% people of faith felt religious leaders were wrong to campaign against last assisted dying bill, while just 22% felt it was right
Christian man who accompanied wife to Dignitas welcomes new Alliance
Liberal Judaism, a progressive strand of Judaism, and the Modern Church, an Anglican society promoting liberal Christian theology, are the latest faith organisations to join the new Religious Alliance for Dignity in Dying, a collection of multi-faith groups, leaders and laypeople calling for a change in the law on assisted dying. Lord Carey, the former Archbishop of Canterbury, has also joined the Alliance and the Chief Officer of the Unitarians has recognised the strong support among many of their members. The Alliance is also welcomed by a Christian man who accompanied his terminally ill wife to Dignitas in 2019 at her request.
The Religious Alliance for Dignity in Dying is formed of religious organisations, leaders and people who follow more than a dozen different denominations and who support a change in the law to enable terminally ill people the ability to determine how, when and where they die alongside high quality end of life care. This comes as a private member’s bill on assisted dying was introduced to the House of Lords last month by Baroness Meacher, Chair of Dignity in Dying, paving the way for the first debate on prospective legislation in Parliament for more than five years.
In a YouGov poll of 5,039 adults published yesterday, 53% of religious people felt it was wrong for religious leaders to actively campaign against an assisted dying bill that was debated in the House of Commons in 2015, with just 22% saying they felt it was right for them to do so.
Faith leaders including the Archbishop of Canterbury and the Archbishop of Westminster wrote to MPs in September 2015 to urge them to oppose the Second Reading of the assisted dying bill in the House of Commons. The bill was based on one introduced by Lord Falconer in 2014, which was supported by Peers both at Second Reading and at Committee Stage, where two opposition amendments were defeated by large margins. Unfortunately, the parliamentary session ended before it could progress further. Baroness Meacher’s bill, also based on Lord Falconer’s bill, was drawn seventh in the House of Lords private members’ ballot last month and a Second Reading is expected in the autumn.
A 2019 Populus poll found that approximately 80% of religious people (and 84% of the general public) support the change proposed in Baroness Meacher’s bill – namely that terminally ill, mentally competent adults in their final months would be able to request an assisted death, subject to approval from two independent doctors and a High Court judge.
Similar legislation has been in place in Oregon, USA for over 23 years, and has since been adopted by nine other American states plus the District of Columbia, three Australian states and New Zealand.
The Religious Alliance for Dignity in Dying brings together followers of the Church of England, Church of Scotland, Church of Wales, Catholicism, Baptism, Evangelism, Methodism, Unitarianism, United Reformed Church, Quakerism, Liberal Judaism, Reform Judaism and Sunni Islam.
Rabbi Charley Baginsky, Chief Executive of Liberal Judaism, said: “Liberal Judaism has a proud history of being at the forefront of progressive societal change, speaking up for much-needed liberal reforms with compassion at their heart. Much like votes for women or equal marriage – rights which now seem unchallengeable – assisted dying is a right we are proud to champion for people nearing the end of their life.”
Rabbi Danny Rich, Liberal Judaism rabbi with responsibility for hospital and prison chaplaincy and former Chief Executive of Liberal Judaism, said: “I have long been an advocate of the right of terminally ill individuals, subject to appropriate safeguards, to decide the manner and timing of their own deaths. Twenty-seven years ago my own great uncle, suffering with inoperable cancer, ended his own life with help from a relative. That dying people are still forced to contemplate dying by suicide as an alternative to a traumatic or prolonged death by their disease is shameful. I add my voice to the growing number calling for true choice and control at the end of life.”
Alan Race, Chair of the Modern Church, said: “Christians place high value on human dignity and compassion and believe we should relieve suffering where possible. We welcome medical intervention in order to relieve pain, especially when suffering becomes unbearable. Relationship with God is a freely chosen commitment and this means that we do not leave it to God to determine the time of death. Trusting in God’s unlimited compassion therefore includes the desire to relieve unbearable suffering at the end of life. In practical terms, granting permission for assisted dying often has the effect of releasing renewed spirituality for living a more fulfilled life prior to death itself.”
Lord Carey, former Archbishop of Canterbury, said: “For too long we have turned a blind eye to the suffering inflicted on terminally ill people by the ban on assisted dying. Compassion, a central tenet of the Christian faith, should not be a crime, and yet under the current law it is treated as such. I believe a change to the law is urgently needed to enable our dying citizens the ability to go as they wish. To my mind, this is the moral, and the Christian, thing to do.”
Liz Slade, Chief Officer of the Unitarians, said: “The Unitarian movement voted in 2013 on the issue of assisted dying; in our recognition of the worth the dignity of all people and their freedom to believe as their consciences dictate, members voted to support the principle that individuals should have the right to seek support for assisted dying in certain circumstances, and that legislation should respect this choice and allow them compassionate assistance without fear of prosecution of anyone involved. Many Unitarians are passionately in favour of a change in the law, while recognising the need to allow a diversity of voices to be considered on this important moral issue.”
Rabbi Dr Jonathan Romain, Chair of the Religious Alliance for Dignity in Dying, said: “This new Alliance is a truly multi-faith rallying call for a compassionate, safeguarded law on assisted dying for the UK.
“In the 60 years since the blanket ban has been in place, medical advances have done wonders in prolonging life, but this often means prolonging the dying process too, causing suffering that may be beyond the reach of palliative care. Religious teaching evolves to deal with the challenges of modern life, so too should the options we offer people when they reach the end of it. That we continue to deny our dying citizens a choice that is now available in states and nations around the world is morally indefensible. It’s time to have a national debate on assisted dying that respects all views while recognising the strong support among religious people.”
Len Taphouse, 81, a former lecturer in engineering and father of three from Hornchurch, is a member of the Church of England and welcomes the new Religious Alliance for Dignity in Dying. Len accompanied his wife of 55 years, Stella, to die at Dignitas in Switzerland at her request in August 2019. Stella was terminally ill with Parkinson’s disease and breast cancer, and in previous years had been diagnosed with cancer of the womb and skin.
Len said: “I was brought up as a regular church-goer, and in 2014 Stella and I renewed our vows 50 years later in the very same church we got married in. Neither of us found our faith a barrier to supporting Stella’s decision, quite the opposite. But this option should have been available here at home. Stella should not have had to spend £11,000 and my daughters and I should not have had to break the law and risk prosecution to accompany her in her final moments. It’s time the law was changed so that people like Stella can die as they wish in this country, surrounded by those they love, in their own bed.”
Tom Davies, Director of Campaigns and Communications at Dignity in Dying, said: “Medical organisations are increasingly recognising the range of views among their members, with doctors accepting that whatever their personal opinion they cannot deny their dying patients the choices they want. Religious organisations and faith leaders are now doing the same, recognising the support for change among their congregations and putting the choice and autonomy of those at the end of life before doctrine.
“With an assisted dying bill in the House of Lords, the Health Secretary commissioning data on suicides by terminally ill people, Scotland due to consult on potential legislation and Jersey conducting a citizen’s jury on the subject, it is essential that parliamentarians across the British Isles understand that the vast majority of the pubic, with faith and without, want change.”
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.
Katie Engelhart’s book spells out the moral and practical conundrums
IF IT IS humane to put down a dog in unbearable and incurable pain, why not extend the same right to humans if they want it? That question echoes through “The Inevitable” as it follows four people in search of a good death—and in fear of a bad one.
Katie Engelhart’s deeply researched and beautifully reported book raises familiar quandaries. Do people have a right to die on their own terms? Should doctors help? Do motivations matter? And might a right become a duty for everyone who grows old, dependent or demented? It also considers less publicised problems, such as: how do people actually die? Advances in medicine and technology that have made pills and appliances safer have made it harder to achieve an “easy” or “peaceful” death for those who seek one.
As policymakers and ethicists ponder these moral conundrums, around the world people are taking matters into their own hands, a trend that gives Ms Engelhart’s book its urgency. Faced with intolerable suffering, her subjects have largely given up on laws and doctors and instead turn to strangers on the internet for help. For instance, Avril Henry, a British octogenarian, spent her nights “marinating in her pain” and considered eating lethal fungi from her garden to end it. But “death by mushroom could be slow, messy, painful. The Nembutal would work better.” The “Peaceful Pill Handbook”suggested buying that drug from either a vet-supply store in Mexico or the Chinese black market. Doubtful about Chinese merchandise, Henry settled on Mexico.
Over several years, Ms Engelhart’s main characters meticulously plan their escapes from old age, dementia and chronic or mental illness. She also follows two doctors, one of whom lost his licence for teaching people how to “exit” via “DIY death seminars”. At times the book itself has a DIY air, taking in the practicalities of connecting a gas canister to a plastic bag that can be placed over a head.
The similarity between the “euthanasia underground” that it describes and underground abortion networks is striking. The president of Compassion & Choices, a lobby group for doctor-assisted dying, once referred to plastic-bag hoods as “the end-of-life equivalent of the coat hanger”. Among those to have taken charge of their deaths were some early AIDS patients, their suffering immense, their fates fixed. Just having the right drugs, or knowing they could get them, seemed to make many of these young men feel better, recalls the more likeable of the two doctors.
Henry planned to kill herself with the Mexican drugs in her bathtub, but fretted that she would soil herself and that her house would smell. Dignity—in life and death—seems to preoccupy her and others above all. Even more than a bad death they fear a bad end to life, in which they are no longer themselves. A desire for autonomy runs through their stories like the thin veins of some of the characters.
Yet this is not a right-to-die manifesto. The author’s own ethical doubts are among the book’s strengths. She writes compassionately of her subjects’ struggles, but is more reserved about the motives of some of their helpers. She remains torn about what is perhaps the hardest question of all: euthanasia for victims of dementia. Rather than passing judgment, she presents facts. About half of Americans think patients do not have enough control over end-of-life decisions. Existing laws often have arbitrary effects.
After the drugs arrived from Mexico, Henry’s house was raided by police. She had discovered the concept of the “Completed Life”. “That’s when you feel that your life is shaped and finished. And the direction thereafter is down. I did have a complete life. It was a great life,” she told a friend. Soon after the raid she was found in her bathtub, having drunk the poison the police had missed. The note she left had a postscript: “If I have fouled the bath in death, please please be kind to wash it down.” She provided the disinfectant.