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."
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.Niklas Anzinger is the founder of Infinita VC based in the charter city of Prospera in Honduras. Infinita focuses on a new trend of charter cities and other forms of alternative jurisdictions. Healso hosts a podcast about how to accelerate the future by unblocking “stranded technologies”.This spring he was a part of the network city experiment Zuzalu spearheaded by Ethereum founder Vitalik Buterin where a few hundred invited guests from the spheres of longevity, biotechnology, crypto, artificial intelligence and investment came together to form a two-monthlong community. It has been described as the world’s first pop-up city. Every morning Vitalians would descend on a long breakfast—the menu had been carefully designed by famed radical longevity self-experimenter Bryan Johnson—and there is where I first met Anzinger who told me about Prospera. Intrigued to say the least, I caught up with him later the same week and the following is a record of our conversation.
Q. We are sitting here in the so-called pop-up network state Zuzalu temporarily realized in the village of Lusticia Bay by the beautiful Mediterranean Sea. To me this is an entirely new concept: What is a network state?
A. A network state is a highly aligned online community that has a level of in-person civility; it crowd-funds territory, and it eventually seeks diplomatic recognition. In a way it's about starting a new country. The term was coined by the crypto influencer and former CTO of Coinbase Balaji Srinivasan in a book by the same title last year [2022]. What many people don't know is that it is a more recent addition or innovation in a space called competitive governance. The idea is that you have multiple jurisdictions competing to provide you services as a customer. When you have competition among governments or government service providers, these entities are forced to provide you with a better service instead of the often worse service at higher prices or higher taxes that we're currently getting. The idea went from seasteading, which was hardly feasible because of costs, to charter cities getting public/private partnerships with existing governments and a level of legal autonomy, to special economic zones, to now network states.
Q. How do network states compare to charter cities and similar jurisdictions?
A. Charter cities and special economic zones were legal forks from other existing states. Dubai, Shenzhen in China, to some degree Hong Kong, to some degree Singapore are some examples. There's a host of other charter cities, one of which I'm based in myself, which is Prospera located in Honduras on the island Roatán. Charter cities provide the full stack of governance; they provide new laws and regulations, business registration, tax codes and governance services, Estonia style: you log on to the government platform and you get services as a citizen.
When conceptualizing network states, Balagi Srinivasan turns the idea of a charter city a bit on its head: he doesn't want to start with this full stack because it's still very hard to get these kinds of partnerships with government. It's very expensive and requires lots of experience and lots of social capital. He is saying that network states could instead start as an online community. They could have a level of alignment where they trade with each other; they have their own economy; they meet in person in regular gatherings like we're doing here in Zuzulu for two months, and then they negotiate with existing governments or host cities to get a certain degree of legal autonomy that is centered around a moral innovation. So, his idea is: don't focus on building a completely new country or city; focus on a moral innovation.
Q. What would be an example of such a moral innovation?
A. An example would be longevity—life is good; death is bad—let's see what we can do to foster progress around that moral innovation and see how we can get legal forks from the existing system that allow us to accelerate progress in that area. There is an increasing realization in the science that there are hallmarks of aging and that aging is a cause of other diseases like cancer, ALS or Alzheimer's. But aging is not recognized as a disease by the FDA in the United States and in most countries around the world, so it's very hard to get scientific funding for biotechnology that would attack the hallmarks of aging and allow us potentially to reverse aging and extend life. This is a significant shortcoming of existing government systems that groups such as the ones that have come together here in Montenegro are now seeking alternatives too. Charter cities and now network states are such alternatives.
Q. Would it not be better to work within the current systems, and try to improve them, rather than abandon them for new experimental jurisdictions?
A. There are numerous failures of public policies. These failures are hard, if not impossible, to reverse, because as soon as you have these policies, you have entrenched interests who benefit from the regulations. The only way to disrupt incumbent industries is with start-ups, but the way the system is set up makes it excessively hard for such start-ups to become big companies. In fact, larger companies are weaponizing the legal system against small companies, because they can afford the lawyers and the fixed cost of compliance.
I don't believe that our institutions in many developed countries are beyond hope. I just think it's easier to change them if you could point at successful examples. ‘Hey, this country or this zone is already doing it very successfully’; if they can extend people’s lifespan by 10 years, if they can reduce maternal mortality, and if they have a massive medical tourism where people come back healthier, then that is just very embarrassing for the FDA.
Q. Perhaps a comparison here would be the relationship between Hong Kong and China?
A. Correct, so having Hong Kong right in front of your door … ‘Hey, this capitalism thing seems to work, why don't we try it here?’ It was due to the very bold leadership by Deng Xiaoping that they experimented with it in the development zone of Shenzhen. It worked really well and then they expanded with more special economic zones that also worked.
Próspera is a private city and special economic zone on the island of Roatán in the Central American state of Honduras.
Q. Tell us about Prospera, the charter city in Honduras, that you are intimately connected with.
A. Honduras is a very poor country. It has a lot of crime, never had a single VC investment, and has a GDP per capita of 2,000 per year. Honduras has suffered tremendously. The goal of these special economic zones is to bring in economic development. That's their sole purpose. It's a homegrown innovation from Honduras that started in 2009 with a very forward-thinking statesman, Octavio Sanchez, who was the chief of staff to the president of Honduras, and then president. He had his own ideas about making Honduras a more decentralized system, where more of the power lies in the municipalities.
Inspired by the ideas of Nobel laureate economist Paul Romer, who gave a famous Ted Talk in 2009 about charter cities, Sanchez initiated a process that lasted for years and eventually led to the creation of a special economic zone legal regime that’s anchored in the Hunduran constitution that provides the highest legal autonomy in the world to these zones. There are today three special economic zones approved by the Honduran government: Prospera, Ciudad Morazan and Orchidea.
Q. How did you become interested and then involved in Prospera?
A. I read about it first in an article by Scott Alexander, a famous rationalist blogger, who wrote a very long article about Prospera, and I thought, this is amazing! Then I came to Prospera and I found it to be one of the most if not the most exciting project in the world going on right now and that it also opened my heart to the country and its people. Most of my friends there are Honduran, they have been working on this for 10 or more years. They want to remake Honduras and put it on the map as the place in the world where this legal and governance innovation started.
Q. To what extent is Prospera autonomous relative to the Honduran government?
A. What's interesting about the Honduran model is that it's anchored within the Honduran constitution, and it has a very clear framework for what's possible and what's not possible, and what's possible ensures the highest degree of legal autonomy anywhere seen in the world. Prospera has really pushed the model furthest in creating a common law-based polycentric legal system. The idea is that you don't have a legislature, instead you have common law and it's based on the best practice common law principles that a legal scholar named Tom W. Bell created.
One of the core ideas is that as a business you're not obligated to follow one regulatory monopoly like the FDA. You have regulatory flexibility so you can choose what you're regulated under. So, you can say: ‘if I do a medical clinic, I do it under Norwegian law here’. And you even have the possibility to amend it a bit. You're still required to have liability insurance, and have to agree to binding arbitration in case there's a legal dispute. And your insurance has to approve you. So, under that model the insurance becomes the regulator and they regulate through prices. The limiting factor is criminal law; Honduran criminal law fully applies. So does immigration law. And we pay taxes.
Q. Is there also an idea of creating a kind of healthy living there, and encourage medical tourism?
A. Yes, we specifically look for legal advantages in autonomy around creating new drugs, doing clinical trials, doing self-medication and experimentation. There is a stem cell clinic here and they're doing clinical trials. The island of Roatán is very easily accessible for American tourists. It's a beautiful island, and it's for regulatory reasons hard to do stem cell therapies in the United States, so they're flying in patients from the United States. Most of them are very savvy and often have PhDs in biotech and are able to assess the risk for themselves of taking drugs and doing clinical trials. We're also going to get a wellness center, and there have been ideas around establishing a peptide clinic and a compound pharmacy and things like that. We are developing a healthcare ecosystem.
Q. This kind of experimental tourism raises some ethical issues. What happens if patients are harmed? And what are the moral implications for society of these new treatments?
A. As a moral principle we believe in medical freedom: people have rights over their bodies, even at the (informed) risk of harm to themselves if no unconsenting third-parties are harmed; this is a fundamental right currently not protected effectively.
What we do differently is not changing ethical norms around safety and efficacy, we’re just changing the institutional setup. Instead of one centralized bureaucracy, like the FDA, we have regulatory pluralism that allows different providers of safety and efficacy to compete under market rules. Like under any legal system, common law in Prospera punishes malpractice, fraud, murder etc. This system will still produce safe and effective drugs, and it will still work with common sense legal notions like informed consent and liability for harm. There are regulations for medical practice, there is liability insurance and things like that. It will just do so more efficiently than the current way of doing things (unless it won’t, in which case it will change and evolve – or fail).
A direct moral benefit ´to what we do is that we increase accessibility. Typical gene therapies on the market cost $1 million dollars in the US. The gene therapy developed in Prospera costs $25,000. As to concern about whether such treatments are problematic, we do not share this perspective. We are for advancing science responsibly and we believe that both individuals and society stand to gain from improving the resiliency of the human body through advanced biotechnology.
Q. How does Prospera relate to the local Honduran population?
A. I think it's very important that our projects deliver local benefits and that they're well anchored in local communities. Because when you go to a new place, you're seen as a foreigner, and you're seen as potentially a danger or a threat. The most important thing for Prospera and Ciudad Morazan is to show we're creating jobs; we're creating employment; we're improving people's lives on the ground. Prospera is directly and indirectly employing 1,100 people. More than 2/3 of the people who are working for Prospera are Honduran. It has a lot of local service workers from the island, and it has educated Hondurans from the mainland for whom it's an alternative to going to the United States.
Q. What makes a good Prosperian citizen?
A. People in Prospera are very entrepreneurial. They're opening companies on a small scale. For example, Vehinia, who is the cook in the kitchen at Prospera, she's from the neighboring village and she started an NGO that is now funding a school where children from the local village can go to instead of a school that's 45 minutes away. There's very much a spirit of ‘let's exchange and trade with each other’. Some people might see that as a bit too commercial, but that's something about the culture that people accept and that people see as a good thing.
Q. Five years from now, if everything goes well, what do we see in Prospera?
A. I think Prospera will have at least 10,000 residents and I think Honduras hopefully will have more zones. There could be zones with a thriving industrial sector and sort of a labor-intensive economy and some that are very strong in pharmaceuticals, there could also be other zones for synthetic biology, and other zones focused on agriculture. The zones of Prospera, Ciudad Morazan and Orchidea are already showing the results we want to see, the results that we will eventually be measured by, and I'm tremendously excited about Honduras.