Physician-Assisted Dying is Now Legal in Multiple Places, But the Taboo Persists
Taboo topics occupy a difficult place in the history of medicine. Society has long been reticent about confronting stigmatized conditions, forcing many patients to suffer in silence and isolation, often with poorer care.
"Classically, doctors don't purposely kill people. That is really the core of the resistance."
AIDS activists recognized this in the 1980s when they coined the phrase Silence = Death to generate public debate and action over a growing epidemic that until then had existed largely in the shadows. The slogan and the activists behind it were remarkably successful at changing the public discourse.
It is not a lone example. Post-World War II medicine is better because it came to deal more forthrightly with a broad range of medical conditions from conception/abortion, to cancer, to sexually transmitted infections. The most recent issue to face such scrutiny is physician-assisted dying (PAD).
"Classically, doctors don't purposely kill people…that is really the core of the resistance" to PAD from the provider perspective, says Neil Wenger, an internist and ethicist at the University of California Los Angeles who focuses on end-of-life issues.
But from the patient perspective, the option of PAD "provides important psychological benefits ... because it gives the terminally ill autonomy, control, and choice," argued the American Public Health Association in support of Oregon's death with dignity legislation.
Jack Kervorkian, "Dr. Death," was one of the first to broach the subject when few in polite society were willing to do so. The modern era truly began twenty years ago when the citizens of Oregon embraced the option of death with dignity in a public referendum, over the objections of their political leaders.
Expansion of the legal option in North America was incremental until 2016 when the Supreme Court in Canada and legislators in California decided that control over one's body extended to death, at least under certain explicit conditions.
An estimated 18 percent of Americans now live in jurisdictions that provide the legal option of assisted death, but exercising that right can be difficult. Only a fraction of one percent of deaths are by PAD, even in Oregon.
Stakeholder Roles
Few organizations of healthcare professionals in the U.S. support PAD; some actively oppose it, others have switched to a position of neutrality while they study the issue.
One doctor wanted to organize a discussion of physician-assisted dying at his hospital, but administrators forbade it.
But once a jurisdiction makes the political/legal decision that patients have a right to physician-assisted death, what are the roles and responsibilities of medical stakeholders? Can they simply opt out in a vow of silence? Or do organizations bear some sort of obligation to ensure access to that right, no matter their own position, particularly when they are both regulated by and receive operating funds from public sources?
The law in California and other U.S. jurisdictions reflects ambivalence about PAD by treating it differently from other medical practices, says David Magnus, an ethicist at Stanford University School of Medicine. It is allowed but "it's intentionally a very, very burdensome process."
Medical decisions, including withdrawing life support or a do not resuscitate [DNR] order, are between a physician and the patient or guardian. But PAD requires outside consultation and documentation that is quite rigorous, even burdensome, Magnus explains. He recalls one phone consult with a physician who had to re-have a conversation with a patient at home in order to meet the regulatory requirements for a request for assistance in dying. "So it is not surprising that it is utilized so infrequently."
The federal government has erected its own series of barriers. Roused by the experience in Oregon, opponents tried to ban PAD at the national level. They failed but did the next best thing; they prohibited use of federal funds to pay for or even discuss PAD. That includes Medicare, Medicaid, and the large health delivery systems run by the Pentagon and Veterans Affairs. The restrictions parallel those on federal funding for access to abortion and medical marijuana.
Even physicians who support and perform PAD are reluctant to talk about it. They are unwilling to initiate the discussion with patients, says Mara Buchbinder, a bioethicist at the University of North Carolina at Chapel Hill who has interviewed physicians, patients, and families about their experience with assisted dying in Vermont.
"There is a stigma for health care workers to talk about this; they feel that they are not supported," says Buchbinder. She relates how one doctor wanted to organize a discussion of PAD at his hospital, but administrators forbade it. And when the drug used to carry out the procedure became prohibitively expensive, other physicians were not aware of alternatives.
"This just points to large inadequacies in medical preparation around end-of-life conversations," says Buchbinder, a view endorsed by many experts interviewed for this article.
These inadequacies are reinforced when groups like the Coalition to Transform Advanced Care (C-TAC), a 140-member organizational alliance that champions improved end-of-life care, dodges the issue. A spokesman said simply, PAD "is not within the scope of our work."
The American Medical Association has had a policy in place opposing PAD since 1993. Two years ago, its House of Delegates voted to reevaluate their position in light of evolving circumstances. Earlier this year the Council of Ethical and Judicial Affairs recommended continued opposition, but in June, the House of Delegates rejected that recommendation (56 to 44 percent) and directed the Council to keep studying the issue.
Only those with the economic and social capital and network of advocates will succeed in exercising this option.
Kaiser Permanente has provided assisted dying to its members in multiple states beginning with Oregon and has done "a wonderful job" according to supporters of PAD. But it has declined to discuss those activities publicly despite a strenuous effort to get them to do so.
Rather than drawing upon formal structures for leadership and guidance, doctors who are interested in learning more about PAD are turning to the ad hoc wisdom of providers from Oregon and Washington who have prior experience. Magnus compares it with what usually happens when a new intervention or technology comes down the pike: "People who have done it, have mastered it, pass that knowledge on to other people so they know how to do it."
Buchbinder says it becomes an issue of social justice when providers are not adequately trained, and when patients are not ordinarily offered the option of a medical service in jurisdictions where it is their right.
Legalization of PAD "does not guarantee practical access, and well-intentioned policies designed to protect vulnerable groups may at times reinforce or exacerbate health care inequalities," she says. Only those with the economic and social capital and network of advocates will succeed in exercising this option.
O Canada
Canada provides a case study of how one might address PAD. They largely settled on the term medical aid in dying – often shortened to MAID – as the more neutral phrase for their law and civil discourse.
The Canadian Medical Association (CMA) decided early on to thread the needle; to not take a position on the core issue of morality but to proactively foster public discussion of those issues as the legal challenge to the ban on assisted dying headed to that country's Supreme Court.
"We just felt that it was too important for the profession to sit on the sidelines and not be part of the discussion," says Jeff Blackmer, CMA's vice president for medical professionalism.
It began by shifting the focus of discussion from a yes/no on the morality of MAID to the questions of, "If the court rules that the current laws are unconstitutional, and they allow assisted dying, how should the profession react and how should we respond? And how does the public think that the profession should respond?"
"I had to wear a flack jacket, a bulletproof vest, and there were plainclothes police officers with guns in the audience because it is really really very controversial."
The CMA teamed up with Maclean's magazine to host a series of five town hall meetings throughout the country. Assisted dying was discussed in a context of palliative care, advanced care planning, and other end-of-life issues.
There was fear that MAID might raise passions and even violence that has been seen in recent controversies over abortion. "I had to wear a flack jacket, a bulletproof vest, and there were plainclothes police officers with guns in the audience because it is really really very controversial," Blackmer recalls. Thankfully there were no major incidents.
The CMA also passed a resolution at its annual meeting supporting the right of its members to opt out of participating in MAID, within the confines of whatever law might emerge.
Once legislation and regulations began taking shape, the CMA created training materials on the ethical, legal, and practical consideration that doctors and patients might face. It ordinarily does not get involved with clinical education and training.
Stefanie Green is president of Canadian Association of MAID Assessors & Providers, a professional medical association that supports those working in the area of assisted dying, educates the public and health care community, and provides leadership on setting medical standards. Green acknowledges the internal pressures the CMA faced, and says, "I do understand their stance is as positive as it gets for medical associations."
Back in the USofA
Prohibitionism – the just say no approach – does not work when a substantial number of people want something, as demonstrated with alcohol, marijuana, opioids for pain relief, and reproductive control. Reason suggests a harm reduction strategy is the more viable approach.
"Right now we're stuck in the worst of all worlds because we've made [PAD] sort of part of medicine, but sort of illicit and sort of shameful. And we sort of allow it, but we sort of don't, we make it hard," says Stanford's Magnus. "And that's a no man's land where we are stuck."
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Wanting to connect with others and feel useful is a common sentiment that’s shared by the workers at DAWN. Marianne, a mother of two who lives near Mt. Fuji, Japan, is functionally disabled due to chronic pain and fatigue. Working at DAWN has allowed Marianne to provide for her family as well as help alleviate her loneliness and grief.Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."