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."
Few things are more painful than a urinary tract infection (UTI). Common in men and women, these infections account for more than 8 million trips to the doctor each year and can cause an array of uncomfortable symptoms, from a burning feeling during urination to fever, vomiting, and chills. For an unlucky few, UTIs can be chronic—meaning that, despite treatment, they just keep coming back.
But new research, presented at the European Association of Urology (EAU) Congress in Paris this week, brings some hope to people who suffer from UTIs.
Clinicians from the Royal Berkshire Hospital presented the results of a long-term, nine-year clinical trial where 89 men and women who suffered from recurrent UTIs were given an oral vaccine called MV140, designed to prevent the infections. Every day for three months, the participants were given two sprays of the vaccine (flavored to taste like pineapple) and then followed over the course of nine years. Clinicians analyzed medical records and asked the study participants about symptoms to check whether any experienced UTIs or had any adverse reactions from taking the vaccine.
The results showed that across nine years, 48 of the participants (about 54%) remained completely infection-free. On average, the study participants remained infection free for 54.7 months—four and a half years.
“While we need to be pragmatic, this vaccine is a potential breakthrough in preventing UTIs and could offer a safe and effective alternative to conventional treatments,” said Gernot Bonita, Professor of Urology at the Alta Bro Medical Centre for Urology in Switzerland, who is also the EAU Chairman of Guidelines on Urological Infections.
The news comes as a relief not only for people who suffer chronic UTIs, but also to doctors who have seen an uptick in antibiotic-resistant UTIs in the past several years. Because UTIs usually require antibiotics, patients run the risk of developing a resistance to the antibiotics, making infections more difficult to treat. A preventative vaccine could mean less infections, less antibiotics, and less drug resistance overall.
“Many of our participants told us that having the vaccine restored their quality of life,” said Dr. Bob Yang, Consultant Urologist at the Royal Berkshire NHS Foundation Trust, who helped lead the research. “While we’re yet to look at the effect of this vaccine in different patient groups, this follow-up data suggests it could be a game-changer for UTI prevention if it’s offered widely, reducing the need for antibiotic treatments.”
MILESTONE: Doctors have transplanted a pig organ into a human for the first time in history
Surgeons at Massachusetts General Hospital made history last week when they successfully transplanted a pig kidney into a human patient for the first time ever.
The recipient was a 62-year-old man named Richard Slayman who had been living with end-stage kidney disease caused by diabetes. While Slayman had received a kidney transplant in 2018 from a human donor, his diabetes ultimately caused the kidney to fail less than five years after the transplant. Slayman had undergone dialysis ever since—a procedure that uses an artificial kidney to remove waste products from a person’s blood when the kidneys are unable to—but the dialysis frequently caused blood clots and other complications that landed him in the hospital multiple times.
As a last resort, Slayman’s kidney specialist suggested a transplant using a pig kidney provided by eGenesis, a pharmaceutical company based in Cambridge, Mass. The highly experimental surgery was made possible with the Food and Drug Administration’s “compassionate use” initiative, which allows patients with life-threatening medical conditions access to experimental treatments.
The new frontier of organ donation
Like Slayman, more than 100,000 people are currently on the national organ transplant waiting list, and roughly 17 people die every day waiting for an available organ. To make up for the shortage of human organs, scientists have been experimenting for the past several decades with using organs from animals such as pigs—a new field of medicine known as xenotransplantation. But putting an animal organ into a human body is much more complicated than it might appear, experts say.
“The human immune system reacts incredibly violently to a pig organ, much more so than a human organ,” said Dr. Joren Madsen, director of the Mass General Transplant Center. Even with immunosuppressant drugs that suppress the body’s ability to reject the transplant organ, Madsen said, a human body would reject an animal organ “within minutes.”
So scientists have had to use gene-editing technology to change the animal organs so that they would work inside a human body. The pig kidney in Slayman’s surgery, for instance, had been genetically altered using CRISPR-Cas9 technology to remove harmful pig genes and add human ones. The kidney was also edited to remove pig viruses that could potentially infect a human after transplant.
With CRISPR technology, scientists have been able to prove that interspecies organ transplants are not only possible, but may be able to successfully work long term, too. In the past several years, scientists were able to transplant a pig kidney into a monkey and have the monkey survive for more than two years. More recently, doctors have transplanted pig hearts into human beings—though each recipient of a pig heart only managed to live a couple of months after the transplant. In one of the patients, researchers noted evidence of a pig virus in the man’s heart that had not been identified before the surgery and could be a possible explanation for his heart failure.
So far, so good
Slayman and his medical team ultimately decided to pursue the surgery—and the risk paid off. When the pig organ started producing urine at the end of the four-hour surgery, the entire operating room erupted in applause.
Slayman is currently receiving an infusion of immunosuppressant drugs to prevent the kidney from being rejected, while his doctors monitor the kidney’s function with frequent ultrasounds. Slayman is reported to be “recovering well” at Massachusetts General Hospital and is expected to be discharged within the next several days.