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.
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.
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.
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.
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.
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?”
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.”