For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.
In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”
Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.
According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.
The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.
At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.
We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.
Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.
Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.
Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.
It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.
As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.
On Aug. 1, New Jersey will become the eighth state to allow doctors to prescribe lethal medication to terminally ill patients who want to end their lives. On Sept. 15, Maine will become the ninth.
So by October, 22 percent of Americans will live in places where residents with six months or less to live can, in theory, exercise some control over the time and manner of their deaths. (The others: Oregon, Washington, Vermont, Montana, California, Colorado and Hawaii, as well as the District of Columbia.)
But while the campaign for aid in dying continues to make gains, supporters are increasingly concerned about what happens after these laws are passed. Many force the dying to navigate an overly complicated process of requests and waiting periods, critics say.
And opt-out provisions — which allow doctors to decline to participate and health care systems to forbid their participation — are restricting access even in some places where aid in dying is legal.
“There are what I call deserts, where it’s difficult to find a facility that allows doctors to participate,” said Samantha Trad, the California state director of Compassion & Choices, the largest national advocacy group for aid in dying.
“We’re nearing a tipping point,” said Peg Sandeen, executive director of the Death With Dignity National Center, which oversaw the Maine campaign. “The issue, while still controversial, is less scary.”
The New Jersey bill had neared passage several times since it was introduced seven years ago, but derailed in 2014 when Chris Christie, the governor at the time, threatened a veto. Finally, legislators passed the Aid in Dying for the Terminally Ill Act this winter, and Gov. Philip D. Murphy signed it in April.
In Maine, the state legislature voted yes this spring, but supporters were unsure what the new governor, Janet Mills, would do. As in New Jersey, a Democratic governor replaced an outgoing Republican who had promised a veto.
Gov. Mills signed the law last month. “I do believe it is a right that should be protected by law — the right to make ultimate decisions,” she said.
All these laws require states to track usage and publish statistics. Their reports show that whether a state has six months or 20 years of experience, the proportion of deaths involving aid in dying (also known, to supporters’ distaste, as physician-assisted suicide) remains tiny, a fraction of a percentage point.
California, for example, in 2017 received the mandated state documents for just 632 people who’d made the necessary two verbal requests to a physician, after which 241 doctors wrote prescriptions for 577 patients. More than 269,000 California in all died that year.
With such data showing no slippery slope toward widespread use or abuse, “a lot of the hypothetical claims our opponents made no longer carry so much weight with lawmakers,” said Kim Callinan, chief executive of Compassion & Choices.
Ms. Callinan also pointed to changing attitudes within the medical community, once a well funded source of opposition. In recent years, a number of national organizations and a dozen state medical societies have instead adopted neutral stances.
“It levels the playing field a little,” she said.
Opponents, including Catholic organizations and some disability activists, still denounce these laws. In March, an aid-in-dying bill passed the Maryland House of Delegates but failed after a tie vote in the Senate. Opponents are attempting a ballot initiative to repeal Maine’s new law and pursuing a slow-moving court case to invalidate California’s.
Public opinion polls consistently show broad support for aid in dying, however. Compassion & Choices says its upcoming legislative targets include Massachusetts, Maryland again, New Mexico, New York and Nevada.
But the persistently small number of users suggests that most Americans close to death would not personally choose to self-ingest barbiturates, even if they support legalizing that option. The low numbers may also reflect difficulty in actually using these laws.
A recent survey of 270 California hospitals, published in JAMA Internal Medicine, found that 18 months after implementation of the state’s End of Life Option Act, more than 60 percent — many of them religiously affiliated — forbade affiliated physicians to participate.
Compassion & Choices is intensifying efforts to persuade local health care systems, doctors and hospices to agree to consider patients’ requests.
Even aid-in-dying laws long on the books are beginning to draw renewed scrutiny.
For decades, the model has been the first-in-the-nation Oregon law, which took effect in 1997. It requires a terminally ill patient to see two doctors, make two oral requests for a lethal prescription plus one in writing, and face a 15-day waiting period.
Every state law but one incorporates those elements. (In Montana, a court legalized aid in dying, so there’s no statute.)
“There’s too many roadblocks in the existing legislation,” said Ms. Callinan, whose organization has long promoted that legislation. “They’ve actually made it too difficult for patients to get through the process.”
Indeed, a study from Kaiser Permanente Southern California, a health system that supports patients who request and meet requirements for aid in dying, shows that at least a third of those who inquire about it become too ill to complete the process, or die before they can qualify.
Yet states are enacting even more supposed safeguards. Hawaii, whose law took effect in January, requires a 20-day wait; both its law and a proposed Massachusetts law add a mandated mental health consultation.
By contrast, the Oregon legislature recently approved an amendment waiving the waiting period in cases where the physician believes the patient will likely die within 15 days. Gov. Kate Brown has until Aug. 9 to sign it.
“It takes people a long time to find a first doctor, to make an appointment, to find a second doctor, to find a pharmacist,” she said. “The process itself is a waiting period,” one often exceeding 15 days.
Since rural areas face physician shortages, Compassion & Choices has also urged that nurse-practitioners and physician assistants be allowed to provide aid in dying in states where they can legally write prescriptions.
In Oregon, a veteran state legislator has taken an even more audacious step toward expanding access.
“You could make the request when you were cognitively able to do it,” he said.
Every existing state law bars that. Those requesting aid in dying must have mental capacity; dementia patients will have lost it by the time they’re within six months of dying. National groups emphatically oppose Mr. Greenlick’s propositions.
Yet those at heightened risk for Alzheimer’s disease, the most common form of dementia, are already well aware of aid-in-dying laws, and some would opt to use them, researchers at the University of Pennsylvania recently reported.
They interviewed 50 older adults enrolled in a drug study, most with family histories of Alzheimer’s, all found to have elevated levels of the biomarker amyloid. “We describe it as an increased but uncertain risk of developing Alzheimer’s disease,” said Emily Largent, a Penn bioethicist.
The team’s interviews revealed that about two-thirds of the group would reject aid in dying and about 15 percent had ambivalent responses. But one in five said they would pursue it if they became cognitively impaired, were suffering or burdening loved ones.
Overall, “very few understood that they wouldn’t be eligible” for lethal prescriptions under current laws if they developed dementia, Dr. Largent said.
But they were strikingly open to legal aid in dying.
“It was important to have it available,” she said. “Even if they felt they wouldn’t choose aid in dying themselves, they weren’t opposed to it for others.”
As Robert Fuller lay dying, he knew he was not alone.
His husband, Reese, stood by his head, crying into a pink towel. They’d been married that morning. A soprano sang over the mezzo piano melody of a violin, soft, but enough to fill the small, crowded room. Those closest to him laid their hands on his arms, torso, thighs and shins.
Downstairs, in the common room of Primeau Place, the affordable housing complex in which Fuller lived, the atmosphere was jovial, full of memories, food and music.
But later, in the bedroom as Fuller’s eyes closed, the gravity of the moment was palpable — to be there was an honor beyond grief.
Perhaps a few people in the room had watched a person die. It seems unlikely any had ever received an Evite to a combination wedding/death-day themed with Hawaiian shirts, courtesy of the host. But there’s a first for everything.
There are those by profession or by predilection who choose to stay with the dying until the dying is done, to comfort the loved ones left behind and ease the souls of the deceased into whatever comes next. They sit in calm vigil so that others, like Robert Fuller, need not be alone.
These are their stories.
At 10:30 the morning of Robert Fuller’s death, Nancy Rebecca joined Fuller and Reese Baxter in marriage.
She anointed them with nag champa oil, rubbing the scent of magnolia and sandalwood into their hands and asked each to take the other in lawful and spiritual marriage. They obliged.
For nine and a half hours, the two were wed. And then, at roughly 8 p.m., Fuller exhaled his final breath.
To Rebecca’s eyes, it wasn’t the end of Robert Fuller. This was simply a new beginning.
Rebecca isn’t just a marriage officiant. That happy task was more of a favor than a calling.
Rebecca is a healer of conventional and unconventional methods. She practiced as a hospice nurse for eight years, caring for people as they groped blindly toward the eventual conclusion of life. That work takes a toll on the living as well as the dying. In 1994, she bought a book on meditation and gave the calming practice a try.
“I went to bed and I had a spontaneous out of body experience,” Rebecca said. “When my spirit came back to my body I could see energy fields and I could see spirits.”
Initially, Rebecca found the experience overwhelming, she said. After all, she was a registered nurse, trained in Western medicine. Seeing spirits and energy fields simply wasn’t done.
“In some ways, the energy fields I see around people are quite beautiful. That is not what was disturbing me,” Rebecca said. “It didn’t fit with what I thought to be the truth.”
Rebecca decided to consult professionals.
Rebecca’s mother was a psychiatrist, her father a medical doctor. Afraid of going to an outside physician with her concerns, Rebecca went to her parents. Her mother reassured her.
“There’s nothing wrong with you,” her mother said.
It took time to process her new, perceptive abilities, to parse what and who she was seeing. But it afforded her the capacity to stay with people under her care, observing the angels that came to visit them and helping them understand their own brief glimpses into the beyond at the end of their lives.
Rebecca works mostly with the living these days, helping them to heal their bodies by righting their energies through meditative practice. However, her wife had known Fuller for years, and although he didn’t feel that he needed her healing talents, the pair did have discussions about what came next.
One day, she asked him what he thought the afterlife would be like.
“He said, ‘Well it’s a realm of judgment and grace. For me I hope it leans a little more toward grace,’” Rebecca recalled.
“I said, ‘Based on my experience, it does,’” Rebecca said.
The harp in Sile Harriss’ apartment is roughly 22 pounds and rises to the level of her chest when she stands next to it. The burnished gold of the maple wood glows in the low light — though she’s had it for decades, the instrument looks as though it was purchased the day before.
It’s small for a harp, Harriss said. It’s a Celtic harp, not an orchestral version, meaning it lacks pedals and has fewer strings, a deficit made up for in part by small levers at the top of each string that allow her to adjust the note produced by a half step.
That’s OK, though. She could hardly bring a larger instrument into hospital rooms.
For nearly 20 years, Harriss worked as a music-thanatologist, employing ancient melodies and lyrics to respond to the needs of the dying and their families. It’s a unique profession — Harriss estimates there are only 100 of her colleagues in the United States.
Music-thanatology is more than beautiful music, Harriss said. It’s about using the cadences and meters of musical traditions from the Middle Ages to support people through the process of dying.
“Actively dying can be hard work,” Harriss said. “We’re using the music as support, able to observe and discern the sense in the room.”
While there is a repertoire of music, every session is individualized to the needs of the patient and their families. Music-thanatologists react to the breath of the patient, their heart rhythms pumping through the monitors and to the emotions of those watching them go.
Metered, comfortable lullabies might give way to unmetered plain chant as the body systems fail and the vitals weaken, requiring a piece with less structure. Some sessions involved a single phrase or bars of music used repetitively. Sometimes, relatives would request a loved one’s favorite song, or need care themselves.
If family dynamics got tense as the end neared, it was Harriss’ duty to tend to their unspoken emotional needs.
“The work at that time is to work with the family before I get to grandma,” Harriss said. “They need to let go what their hopes have been.”
Harriss trained at the Chalice of Repose, a school located near Missoula, Montana. She found herself looking for a new purpose after her marriage of 30 years ended, and a friend mentioned the school. The idea captured her, and she began preparing to move from Seattle before she was even accepted.
“The letter came 10 days before school started,” Harriss said.
Harriss would spend two years training with 14 classmates, memorizing the repertoire, learning Latin and ultimately signing on as harp faculty. When she began craving life in the city again, she moved to Portland and was hired at Providence Portland Medical Center. If her beeper went off, even in the wee hours of the morning, she would take her harp in its case, go to the bedside and begin to play.
Over time, Harriss developed neuropathy in her left hand — she can no longer feel the strings underneath her fingers and plays the harp through muscle memory. Still, the music emanating from her instrument is warm and calming.
“I’m just in awe and grateful for the opportunity to have been with people this way,” Harriss said.
Arline Hinckley believes in doctors and medicine. She also believes in the right to die.
“We have a wonderful medical care system. It can work miracles,” Hinckley said. “Unfortunately, the tendency with all of this great medical care is to continue to treat people even when it isn’t going to benefit them.”
Hinckley is a board member and volunteer with End of Life Washington, the organization that helps patients like Fuller navigate the complicated road to dying with dignity. In the book “Extreme Measures: Finding a Better Path to the End of Life” by Dr. Jessica Zitter, Zitter compares the medical community’s response to terminal illness as a “conveyor belt,” Hinckley said.
“If you are very ill and get put on a respirator, that’s one way to get on the conveyor belt,” she said. “Artificial food and hydration is another way to get on it. Aggressive chemotherapy, and that kind of thing.
“Once you get on that conveyor belt, it is hard to get off. It is hard to say, ‘This is not what I want, please let me die,’” Hinckley continued.
Her experience in an oncology department after she graduated college convinced Hinckley that people needed a legal right to get off that conveyor belt. She saw many people die, sometimes horribly — the treatment was worse than the disease, she said.
Hinckley worked to get the Death with Dignity initiative on the ballot in Washington, more than a decade after the first of such laws passed in Oregon. She helped educate people on what it meant, and found that even those who did not want to use the law themselves saw value in affording others the opportunity.
She has also assisted people through the process herself.
“People are so full of grace and bravery at that time. They’re very determined,” Hinckley said. “The medication tastes terrible and some people have difficulty swallowing it, but I’ve seen 85-year-old, 95-pound ladies just chug that stuff. They’ve made up their mind, taken care of unfinished business, mended fences, come to a spot religiously where they feel this is OK. They’re just ready.”
End of Life Washington volunteers stay after the person has fallen asleep to help family and friends with the passing. The process can be healing for the living as well — the planning of the death allows people to come to terms with it more totally than a sudden loss, she said.
“They’ve done the work. So, of course they’re sad, but in some ways they’re relieved as well because the person they love is not going to be suffering any longer,” Hinckley said.
Only eight states allow people the option to take their own lives. The most recent law passed in New Jersey in March. Organizations like End of Life Washington are working to maintain the momentum so that everyone, regardless of their location, has an option at the end.
“People deserve a choice,” Hinckley said. “It’s not a choice everyone might make, but options are important to people.”
When Robert Fuller decided to die, it was a choice informed by personal experience.
Fuller, 75, suffered from terminal cancer. He started feeling sick in July 2018. By September, a CT scan found a tumor growing under his tongue. The news didn’t surprise him.
“I knew it was there,” Fuller said in April. “I could smell it.”
It was a sour scent, he said. More basic than acidic. He could smell it clearly when he was in bed, his face pressed against his pillow.
“I wrapped my head in a pillow trying to smell it. I wasn’t attempting to do anything else,” Fuller said. His body might be failing, but his humor was intact.
Fuller considered treating the cancer medically. He started a round of chemotherapy in January, but didn’t keep it up. As a nurse to the dying, he’d watched cancers take hold despite desperate attempts to hold the disease off.
In many cases, the supposed cure was as bad as, or worse than, the disease itself, he thought.
So, Fuller worked with a medical team to get access to life-ending drugs under Washington’s Death with Dignity Act. On May 10, surrounded by family, friends and some journalists, Fuller injected the drugs into his gastric tube and fell asleep. He would not wake up.
Fuller was able to die on his terms because he found doctors willing to help him and a pharmacy willing to procure or make the medicines he needed. But that isn’t always guaranteed.
The medical community is far from settled on the question of Death with Dignity or, more generically, physician-assisted suicide (PAS). The Code of Medical Ethics, a guide provided by the American Medical Association, opposes PAS, saying that it is “fundamentally incompatible with the physician’s role as a healer.” Add onto that a growing consolidation of medical services under Catholic organizations, run under the belief that suicide is a mortal sin, and the question of assisted dying rises from an ethical debate to a religious edict.
Doctors have covertly engaged in helping their terminal patients die for decades, but access to this style of care was based on relationships and stealth, not need or as a right. As the right-to-die movement expands to new states, advocates hope that will change.
Lay of the land
Only eight states and the District of Columbia afford people the right to die with the help of their physicians. New Jersey is the most recent after the state legislature passed a law similar to Washington’s in March.
Under those laws, physicians decide if they want to help their patients through the legally prescribed process. Some hospitals ban the practice outright. Individuals question their role. As a doctor, having sworn the Hippocratic Oath to “do no harm,” could that include prescribing death?
According to the Washington State Department of Health, 115 physicians and 51 pharmacies assisted 212 terminal patients in 2017 — the last year for which numbers are available. The vast majority operate west of the Cascades. On average, only 10 percent of people who use the law live east of the mountains.
Much of that is related to access, since many of the health care facilities on the east side are associated with Catholic organizations, said Helene Starks, an associate professor of bioethics and humanities at the University of Washington who has studied assisted death for nearly 30 years.
“The fact is that the Catholic health systems are the primary providers in the state outside of the western side, and the non-Catholic organizations are more prevalent on the western side than eastern side,” Starks said.
The UW Medical system — which for these purposes primarily includes Harborview Medical Center, University of Washington Medical Center and Valley Medical Center — allows its doctors to participate in the Death with Dignity process.
Not all want to, however.
Mollie Forrester was the associate director of social work at Harborview Medical Center, and it fell largely on her team to help patients navigate the complexities of the Death with Dignity law. But, the patients weren’t the only ones who needed help.
“It has been a powerful experience to watch doctors get this request from patients,” Forrester said. “This idea of facilitating the hastened death is a process for them.”
Forrester started with the team soon after the law went into effect in 2009, on maybe the third or fourth case that the Harborview team dealt with. The idea was that their group would coordinate the implementation of Death with Dignity, and that once it was established they would farm out the work to social workers in different disciplines.
But Harborview saw so few cases that Forrester and her team ended up handling the care altogether.
It was up to Forrester to sit down with patients asking to end their own lives and explain to them the process and help them through any logistical hurdles that might arise. Their interview might be the last time she ever spoke to those patients.
“I’m walking in and saying, ‘Hi, it’s nice to meet you, let’s talk about your death,’” she said.
Doctors needed help, too. Some refused to participate, flat out. With others, Forrester felt she was performing the role of social worker.
“From where I’m sitting, it’s easy,” she would tell them. “It’s my profession, patient autonomy and patient choice.
“They’re supposed to be healing and helping people live,” she said.
Death is the inevitable conclusion of life. Fuller knew that, had known that for a long time. He joined the Hemlock Society as a young man, a group that advocated for the right to die. The Washington state society was founded in 1988 as the AIDS epidemic ravaged the gay community.
“I believed in the cause before Kevorkian,” Fuller said, referencing Dr. Jack Kevorkian, the controversial physician who helped as many as 130 people to their ends. He was nicknamed “Dr. Death” by the media and was ultimately arrested and sentenced to up to 25 years in prison for second-degree murder. He got out in eight.
The national Hemlock Society considered itself predominately educational, and when the Washington chapter wanted to assist people in their deaths, they split off to form Compassion in Dying. In 2003, Compassion in Dying was renamed End of Life Washington.
Arline Hinckley is a board member and volunteer for End of Life Washington. She and others in her organization offer advice to medical institutions and direct assistance to individuals who need help finding doctors or prescribing pharmacies. They may also be with the patients at their deaths.
“I feel like it’s a tremendous honor to be allowed in someone’s life at that very vulnerable time,” Hinckley said.
Hinckley’s second job out of graduate school in the 1970s was performing a social work role on a hematology/oncology team, caring for deeply ill patients.
“I saw a lot of people die very badly,” Hinckley said. “I was asked to help a person and I could not do that. I felt terrible, because they were suffering so greatly.”
Her experience led her to join the then-Hemlock Society.
“I have always felt that what happens to your body should be directed by you,” Hinckley said. “People deserve a choice. It’s not a choice everyone might make, but options are important to people.”
In fact, of the small number of people in Washington who use Death with Dignity in a year, as many as 30 percent never take the medications. Some got the prescription and never filled it. Others planned to, but died before they could get the medications.
The medications become almost a safety net, not because people want to die, but because that element of choice is important to them, Starks said.
“I’ve never met anybody in death with dignity who wanted to die,” Starks said. “They wanted to live a lot longer, but they also didn’t want to be a victim of their own illness.”
Even though it’s legal, it’s not easy to come by the medications that are necessary. Many people don’t know they have the option. Hospitals and pharmacies aren’t advertising that they provide these services.
In fact, a pharmacist who spoke to Real Change for this article did not want to be named at all.
“People judge you for the kind of activities that you’re doing and sometimes they equate that with good and evil,” the pharmacist said. “‘You must be evil because you’re providing this.’ Really? If you talk to this family that is suffering with this patient, that are looking for not a means to an end but an option at the end? You’re depriving them of options.”
The medical community is still grappling with PAS.
The issue came up before the American Medical Association in summer of 2018 and was effectively tabled rather than rejected or affirmed.
In November, the AMA’s House of Delegates deliberated a report from its Council on Ethical & Judicial Affairs (CEJA) that looked into the legal and ethical ramifications of PAS. The existing guidance in the Code of Medical Ethics remained unchanged, but delegates also voted to take the matter up at a future policy-making meeting.
Attitudes are changing. More than two-thirds of Americans believe that doctors should be allowed to help terminally ill patients who are in pain to die, according to a 2015 Gallup poll. Young adults were particularly supportive with 84 percent of people between 18 and 34 on board with the concept.
For some, the act is still seen as suicide. Robert Fuller believed differently.
“It’s taking responsibility for the rest of my life,” Fuller said.
For the last hours of his 75 years on Earth, Robert Fuller was married to a man who he loved.
“I anoint you,” said Nancy Rebecca, a nurse, clairvoyant and sometime wedding officiant, “Mr. Robert and Mr. Reese Baxter-Fuller.”
The cameras flashed, the tape rolled as Fuller and Reese Baxter exchanged vows, rings and a chaste kiss. It was a simple wedding. The couple sat on the couch in their shared apartment in Primeau Place, a senior housing building on Capitol Hill. Baxter wore a black and white sweater, Fuller a relatively restrained Hawaiian shirt with large, colorful flowers against a cerulean background, ready for the party that waited for the newlyweds downstairs. The ceremony commenced at 10:30 a.m. By evening, Robert Fuller would be dead.
The cancer was slowly choking him
Robert Fuller planned every detail of his death. He knew who he wanted to see — invites had gone out weeks before — and what music he wanted to play him out. He’d also planned the food, although he himself couldn’t eat it.
Fuller was dying of a virulent strain of cancer, a disease that lodged itself in his throat and, over the course of a year, was slowly choking the life from him. At the end of March, he already had significant difficulty swallowing, leaving most of his meals to be transmitted through the gastric tube installed in his stomach, hidden by clothes that hung on his tall, wasted frame.
A nurse by training, Fuller knew what the future held if he decided to wage chemical war against his opponent.
“I’ve taken care of patients like me,” Fuller said, sitting in his recliner, staring out his window at a view of the sunlit Puget Sound. “I have a friend whose father died of the same thing 50 years ago. He did pursue all of it, all of the radiation. I only did a little bit of it. He did it all and it was a horrible death.”
That slow, painful, fruitless fight was not how Fuller wanted to spend his final days. He wanted to die as he lived — on his terms. He turned to Death with Dignity.
A public death Death with Dignity began as an initiative passed by Washington voters in 2008. It allows terminal patients to end their lives by ingesting toxic amounts of drugs rather than suffer in their final months, weeks or days. They ease into sleep and never wake up.
Fuller became aware of it when a woman from California moved into the senior housing building in which he lived and helped manage.
“Wendy was her name,” Fuller recalled. “She started telling me about it pretty quickly, because that’s what people do when they meet me. Strangers tell me everything. On the bus, I don’t care where. They confess to me, they tell me their worst medical problems. They do. It just happens.”
Wendy moved to Washington to kill herself. It was one of the few states that allowed it. Although California would follow suit in 2016, Wendy didn’t have that long.
On the day she was to die, Wendy had a sign put on her door that read “Do Not Disturb.” When it came down, she was gone.
“I said, ‘Woah,’” Fuller said. “That solidified it for me. That’s what I’m going to do.
“But,” he continued, his voice hushed into a conspiratorial whisper, “mine is not going to be private. That is not the way I lived my life.”
Sharing stories, saying goodbye
Everybody seemed to call it something different. “Death Day.” “The Day.” Fuller didn’t care. When he spoke of it, he generally just referred to it as May 10.
“I’ll see you on May 10,” he told visitors in the days leading up to the event.
A gaggle of brightly colored helium balloons marked the entrance to Primeau Place’s common room, an open space lit harshly with fluorescent light. A piano stood against the eastern wall, a drumset assembled beside for the occasion.
People flooded the space, spilling out into the small patio that was sheltered from the spring sun by large trees. They munched on hors d’oeuvres, laughed and shared stories of Uncle Bob, as most people called him.
All the while, Fuller held court, seated next to his new husband as his guests came, one by one, to say their final goodbyes. He held a walking stick sanded down and polished into a smooth, golden surface and carved with tight grooves.
Someone he had sponsored made it for him while still using crack, Fuller had said more than a month before.
“I think that’s significant,” he said. “For people who are still into drugs and think nothing positive can still come out of this.”
That depth of compassion, of acceptance and understanding drew people to Fuller. He’d sponsored many in the room through the Alcoholics Anonymous program. He spent 10 years as a nurse in King County jail. He was an active member of St. Therese Catholic Church. He arranged for Primeau Place to “Adopt-A-Drain” outside the building to give back in another way.
Fuller was many things, said Scott Farrell, who had met Fuller at a spiritual retreat for gays and lesbians more than 40 years prior.
“He was always there for me,” Farrell said. “He was a light in my life. We haven’t been in touch a lot lately, but whenever I see him, it feels like there is no time.”
Nicholas Bross was one of the people Fuller sponsored. He was dressed in a Hawaiian shirt, a gift from Fuller specially for his big day.
“I’m supportive of his choice, his decision to do this,” Bross said. “I’ve been telling people that if I were in his shoes, I’d be doing the same thing.”
It took time for some to accept what he wanted to do, Fuller said. Most made their peace with it after the initial shock. Fuller gave them the space to process on their own terms. They might not be ready, but Fuller was. He had been for decades.
Escaping death during the AIDS epidemic
It was 1985. Fuller was living in Chelan, Washington, a handsome young man in his early 40s playing Schroeder, the philosophical musician, in a local production of “You’re A Good Man, Charlie Brown.”
He stopped paging through an old album and touched a photograph of his younger self with a frail finger. In the moment, a dapper Fuller was standing on stage with a seated woman playing a smitten Lucy.
“I have HIV in this picture, but I don’t know it,” Fuller said.
He had moved to Chelan to get away from the death he saw ravaging the gay community in Seattle. Fuller, a recovering alcoholic, watched as two or three young men a week disappeared from his Alcoholics Anonymous meetings.
“It just kept going, so I moved to Chelan,” he said. “There were no gay people and no AIDS, I told myself.”
He’d already taken the test by the time he appeared in that musical. The results would come back negative, but in his bones, he knew they were wrong.
That was when Fuller began packing his bags.
That was the phrase his community used to describe planning for their own deaths. Getting your living will in order, designating a power of attorney, making arrangements for your loved ones.
In the 1980s and 1990s, HIV could be a death sentence. Fuller stood by the sides of two men who he loved as they died. Chet, a swarthy man seated next to Fuller as the pair stare out over a lake, would be reduced to skin and bones in a matter of months. Bill, whom Fuller thought of as his first husband, although they could not legally wed, also died. Tom, an artist who Fuller described as a Jesus figure, appeared in a picture with Fuller at Chet’s funeral.
He would be dead a year later.
At the height of the epidemic, Fuller “packed his bags” every six months to a year. His viral load soared to 700,000 and his T-cell count dropped to 76, laying his body open to infection and possibly death. But he survived until the cocktail of drugs created in the late 1990s hit the market. He resisted the previous medications — those cures also killed.
Until his death, Fuller’s viral load was undetectable, but he carried the symptoms of HIV on his body. When he walked, he would pick up his feet like they were on marionette strings and plant them slowly and carefully on the carpet. It was called peripheral neuropathy, he said, lapsing into the assured cadences of a health care professional.
The loss of proprioception that comes with peripheral neuropathy brought Reese Baxter into his life. Baxter needed a place to stay, Fuller needed someone to help him — he’d fallen many times and struck his head.
“I didn’t know it would be three years,” Fuller said.
How to die with dignity
Dying seems easy. After all, we spend so much time and energy avoiding it.
Dying with dignity? That takes work.
First, you have to find a doctor willing to let you die. The law doesn’t mandate that doctors participate in Death with Dignity, it only says that they can. Many won’t, for personal reasons. Others can’t because they are forbidden to do so by their employers.
Hospitals that belong to the University of Washington medical network opt in, said Professor Helene Starks, an expert in medical ethics who has been studying end-of-life issues for three decades.
“I think that the general feeling is as a public institution enacting a public law, there was an obligation to provide access,” Starks said.
Swedish Medical Center, in contrast, is affiliated with Providence Health & Services, a Catholic nonprofit organization founded by the Sisters of Providence in 1856. The Swedish Medical Center in Seattle does not forbid its employees from engaging in Death with Dignity, according to a position statement issued after the law passed, although some Catholic-affiliated hospitals do.
This partly explains why as much as 90 percent of people in Washington who use the act do so west of the Cascades — access is extremely limited in the eastern portion of the state.
Fuller was able to receive care at Harborview Medical Center. First, he had to make an oral request. The doctor evaluated him to make sure that he was of sound mind — people with dementia cannot use Death with Dignity. It takes two doctors, one attending and one consulting, to complete the process.
No less than 15 days later, you have to make a second oral request. Fuller’s doctor accidentally scheduled his follow-up 14 days after the initial appointment. He had to come back the next day.
Once a person has jumped through these hoops and gets the prescription for the drug, they must find a pharmacy willing to fill it. This gets complicated, because pharmacists, like doctors, do not have to fill the script if they are opposed to the practice and some don’t have the expertise.
If you can find one — and there are a few in the area — the pharmacy has to be able to access the drugs.
Secobarbital — marketed under the name Seconal — is the preferred option. Called “reds” back in the day, secobarbital was used as a sleep aid until the danger of overdosing and negative interactions with alcohol became apparent.
Bausch Health, formerly Valeant Pharmaceuticals, bought the patent for the drug when it expired. Although the chemical makeup of the drug hasn’t changed in 80 years, the price did. When California passed its End of Life Option Act in 2015, the price of the drug doubled, according to NPR.
Today, the 100 capsules needed to end Fuller’s life would have cost him more than $3,000 without insurance.
Medical professionals created a cheaper cocktail of four drugs that cost roughly $400, but that is where the expertise comes in. A generic pharmacy can’t make the cocktail, but a compounding pharmacy can.
In the end, Fuller would use the cocktail — his pharmacy was not able to get the necessary amount of secobarbital.
The whole process takes weeks if not months for people who, by law, must have a six-month prognosis.
“You have to adhere to a strict process,” Fuller said. “You don’t just walk in and say, ‘I want to get rid of Grandma. I hear you have death panels.’”
As the clock ticked closer to 3 p.m., the mood at the party changed.
The jovial atmosphere gave way to the weight of the moment as the minute hand ticked by, moving inexorably closer to the time of Fuller’s death.
He went upstairs, his husband on one side, his walking stick on the other. There were balloons outside his apartment door as well, framing a nametag attached to the name plate that read “Uncle Bob.”
Bodies pressed into the small apartment, filling the T-shaped corridor that led from the front door to Fuller’s room on the left and the living room on the right. Fuller went into his room with a select few — he changed into a ocean-blue set of shiny pajamas, the “Hugh Hefner” pajamas, as he liked to call them.
He lay there, his twin bed strewn with pink rose petals, Baxter at his side, holding his hand.
In March, Fuller said that Baxter would hold his hand in a “fishhook,” a wrestling grip that is next to impossible to break until one of the parties lets go.
“He’s now the person whose hand I want to be holding when I die,” Fuller said. “He’s going to give me the cue when I’m falling asleep, or when I seem to be sleeping, that I can leave.”
When the doors opened, Fuller’s friends, adopted family and loved ones shuffled into the room until there was no space left. People squeezed into every nook and cranny, shoved into a closet, trying to use a flimsy clothing basket for support.
By law, Fuller had to ingest the drugs on his own. Many choke it down — the taste is terrible, bitter. He took a syringe and injected the poisonous cocktail into his gastric tube.
Almost a third of people who get the prescriptions never take it. Not Fuller. Now, he would die.
Baxter gripped Fuller’s hand, the other holding an electric pink towel he used to absorb his tears. A violinist put bow to strings, playing Amazing Grace and Ave Maria. As Fuller’s eyes closed and his body went still, the observers raised their voices in song. Those closest to him placed their hands on his body in farewell.
Technically, he was asleep. Death would come later, after the drugs wrested his final breath away from the cancer that tried to steal it. But Bob Fuller was gone.
Is it too much to ask people to follow through on previously expressed wishes for assisted death? An expert report suggests it may well be.
When Canada legalized medically assisted death in 2016, the legislation excluded a trio of particularly difficult circumstances, committing to studying them in detail over the following two years. Those reports—on advance requests, mature minors and cases where a mental disorder is the sole diagnosis—were authored by three panels of eminent experts from a variety of disciplines, and in spite of the resolutely neutral and delicate language in the documents, they make for deeply compelling reading.
Of the three complex circumstances, it is advance requests—which would allow someone to set out terms for their medically assisted death, to be acted on at a future point when they no longer have decision-making capacity because of dementia, for example—that have drawn the greatest interest and agitation for change.
The working groups behind the reports were not asked for recommendations, but rather to provide detailed information on how other countries have grappled with these issues, what a modified Canadian law would need to take into account and how fields like ethics, philosophy, health care and sociology might help us puzzle through these issues.
And while they explicitly take no position on what the government should do, a close reading of the evidence the expert panel gathered makes it virtually impossible to imagine that advance requests for Canadians could exist and be acted upon.
That is not because the will isn’t there; many people with dementia or other illnesses that will eventually consume their cognitive capacity profoundly desire some sense of deliverance and control of their ending, for reasons that are easy to understand.
It is not because requiring help with every task of daily living, or being unable to communicate one’s thoughts or conjure up the names of loved ones is not a real form of suffering; for many people, that is just as intolerable as the spectre of a physically painful death.
And putting advance requests into practice doesn’t seem prohibitive because people who want them would be unsure about where to draw their line; indeed, that threshold is glaringly obvious for those to whom it matters most, and robust documentation and communication with health care providers and family members could provide much-needed clarity.
Rather, the reason it seems virtually impossible that Canada could have—and, crucially, use—advance requests is because it is simply too heavy a burden for those tasked with deciding when to follow through on the previously expressed wishes of the person before them, once that person can no longer meaningfully speak up for themselves.
“Evidence from international perspectives suggests there may be marked differences between stated opinion on hypothetical scenarios and actual practice,” the report notes. In other words, while people generally understand why others want advance requests and broadly support their availability, almost no one can bring themselves to act on them.
“It’s to be expected that these will be heavy decisions to be made, and I’m not sure that we would want them to be light, either,” says Jennifer Gibson, chair of the working group that examined advance requests for medical assistance in dying (MAID), and director of the University of Toronto Joint Centre for Bioethics.
Gibson’s group and the two other panels that examined MAID for mature minors and for people with a mental illness were chaired by former Supreme Court Justice Marie Deschamps and convened by the Council of Canadian Academies, a non-profit organization that “supports independent, science-based, authoritative expert assessments to inform public policy development.”
What is striking in reading the report on advance requests is how profound and deeply human it is, and how quickly the debate becomes almost dizzyingly existential—much more so even than the issue of assisted death in general. “There’s this human experience that we’re all sharing. We’re all in that together—that we are mortal, that we will die, that we will lose loved ones in our lifetime,” Gibson says. “That unavoidable vulnerability sort of encapsulates a lot of these policy and clinical and legal discussions that are unfolding.”
The report delves into concepts like the meaning of personal autonomy; how we care for those we love by shouldering the responsibility of making decisions when they no longer can; the concept of suffering and who defines it; how we weigh the interests of the patient against what their doctor and family are asked to handle; and which safeguards might help reassure those gathered at the bedside who have to make a decision.
“We can think about it as burden, but it’s not just about burden—it’s also about care….there is no question that burden is part of what comes with uncertainty. These are excruciating decisions that someone has to make on behalf of someone who is no longer decisionally capable,” says Benjamin Berger, a professor at Osgoode Hall Law School at York University and a member of the working group. “But a way of thinking about the burden is also, ‘Am I doing the right thing?’”
And a deeply conceptual sense of the self is central to the report: if in the present, you decide on and record a series of conditions under which you would no longer want to be alive, and you later become incapacitated, are your present and future selves the same person given how profoundly you’ve changed? If, once you are incapacitated, you appear perfectly content or even outright resistant to the MAID procedure you once requested, which version of you and which set of wishes and desires takes precedence, and why?
“Under what conditions might we expect that somebody would so radically lose those core compass points, if they lost capacity to make certain types of decisions, that they would become an entirely new person?” Gibson asks. “It is an existential question.”
And the report puzzles at length over this: can you really know from your present vantage point what your future self will want, how you might suffer or find joy in whatever your life looks like over the next horizon?
Research demonstrates that we are not very good at estimating what our quality of life would be if we fell ill or had some form of disability. This phenomenon, known as “the disability paradox,” is “pervasive,” the report notes. “The underestimation of quality of life by able-bodied or healthy people, rather than its overestimation by those living with a disability or chronic illness, drives the disability paradox,” the expert panel notes.
But again, in the debate over advance requests, this circles back to a deep concept of self: even if you are completely content once you are incapacitated, how much does that matter if your past, competent self loathed the notion of spending years in a long-term care facility needing help with every daily activity?
“Simply pointing to the idea that autonomy is respected and autonomy is important fails to wholly solve the most difficult issues in this field,” says Berger. “The question everybody is trying to ask is, understanding that autonomy is a core issue, what is the right method of ensuring that we respect autonomy?”
But for all of these sprawling legal, philosophical and ethical conundrums, it is when the report explores the experience of other jurisdictions with more experience practicing MAID or more liberal laws than Canada’s that the true difficulty in putting advance requests into practice for people with dementia becomes obvious.
Just four countries—Belgium, Colombia, Luxembourg and the Netherlands—allow advance requests for euthanasia in some form. However, “nearly all” of the information we have about advance requests in practice comes from the Netherlands, the report notes, because of “lack of implementation experience” in Colombia and Luxembourg, and very little detailed data available from Belgium.
The 2002 Dutch law that formally permitted the practice of euthanasia that had been going on for decades allowed for written advance requests for anyone aged 16 and older, in which they must clearly lay out what they consider unbearable suffering and when they would want euthanasia performed. Those would apply when people could no longer express their wishes and would have “the same status as an oral request made by a person with capacity,” the expert panel reports.
But while the annual reports from RTE, the regional review committees that govern euthanasia in the Netherlands, do not report the number of deaths due to advance requests, they do show that between 2002 and 2017, “all or most” of the patients who received euthanasia due to suffering from dementia were in the early stages of the disease and still had capacity to consent.
A study of 434 Dutch physicians between 2007 and 2008 found that while 110 had treated a patient with dementia who had an advance request, only three doctors had performed euthanasia in such a case (one doctor helped three people to die); all five of those patients too were “deemed competent and able to communicate their wishes.” The paper concluded that because doctors could not communicate with the patients otherwise, “Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited.”
Indeed, in 2017, a group of more than 460 Dutch geriatricians, psychiatrists and euthanasia specialists co-signed a public statement committing to never “provide a deadly injection to a person with advanced dementia on the basis of an advance request.”
And while family members of people with dementia support the idea of MAID if their loved one had an advance request, when it comes to acting on that, the majority—63 per cent in one study and 73 per cent in another—asked a doctor not to follow the request and actually provide euthanasia, but instead to simply forego life-sustaining treatment. “Some of the reasons given by relatives were that they were not ready for euthanasia, they did not feel the patient was suffering, and they could not ask for euthanasia when their loved one still had enjoyable moments,” the report explains.
Other Dutch studies show distinct contours in opinions on advance requests in cases of advanced dementia; the general public and family members of people with dementia view it more permissively than nurses and doctors, and doctors are most restrictive of all. “The authors of these studies hypothesized that this could be due to the different responsibilities of each group,” the working group wrote. “Physicians actually have to carry out a patient’s request, and when a patient cannot consent, this act comes with a heavy emotional burden.”
Here in Canada, the federal government has said it has no plans to alter the law to permit advance requests, even in the face of intense interest and pressure around the issue in a particular context a few months ago. In November, Audrey Parker, a vivacious Halifax woman with Stage 4 breast cancer, died by MAID two months earlier than she wanted to, because she feared cancer’s incursion into her brain might render her unable to provide final consent for the procedure if she waited. Parker spent her final months as the highly visible and compelling face of people like her, who are approved for MAID but forced to seek it earlier than they want to—or reduce badly needed pain medications—for fear they will lose the lucidity required to consent.
When it comes to concerns about determining when a patient with an advance request is ready for MAID, how clear their conditions are and whether they may have changed their mind if they can no longer communicate, the report suggest that cases like Parker’s would be the simplest and least controversial in which to permit advance requests. “These issues would likely not arise if a person wrote a request after they were already approved for MAID,” the working group notes. “In this case, they would be able to confirm their current desire for MAID themselves, and may even choose a date for the procedure.”
But when it comes to dementia—the condition which seems to inspire the strongest public desire for advance requests, and for which the disease trajectory is longer and more uncertain—the situation is much more difficult.
It is rarely useful to frame a public policy debate in terms of factions of winners and losers. But with the notion of advance requests for people with dementia, it is difficult to avoid the sense that in order for one group to get what it very understandably wants—a sense of control and escape from an existence that is at least as intolerable to some people as physical suffering—another group must shoulder a different sort of crushing burden—namely, the medical practitioners tasked with actually performing MAID and the family members or substitute decision makers who would have some role in sanctioning the procedure based on their loved one’s recorded wishes.
But Gibson argues that the solution to a heavy burden is not to make it light, but rather to ask what supports and measures would be required to bear it if such a thing were available in Canada. “And some members of the panel were really doubtful that anything would be sufficient to bridge those uncertainties, whereas others on the panel said, ‘I think we’ve got some experience with this, I think we could,’” she says. “There’s not going to be some external adjudicator to tell us we got it right.”
And while there is something distinctly fraught in decisions about MAID, she points out that families all over the country contend every day with life-and-death medical treatment decisions behalf of the people they love.
“It’s part of the ways in which we express love and caring for our loved ones, is we care for them even when they’re unable to care for themselves,” Gibson says. “We ought not to be surprised that these decisions are burdensome. And at the same time, they’re burdensome precisely because of these human connections that we have.”
The immense weight of these choices, then, is the price of admission for the bonds we share, and for the meaning we assign to life itself.
I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”
I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.
As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)
So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.
My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.
The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.
This cannot be right. This cannot be what we want for our parents—or ourselves.
Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.
“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”
For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.
Talking about death
The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?
Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.
“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”
Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.
It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.
“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”
It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.
While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.
McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.
“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”
This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.
“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”
Death with dignity
I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.
Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.
Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.
The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.
Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.
Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.
Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?
If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.
My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.