Dealing with Death: An Examination of Past and Present Aid-in-Dying Litigation with Kathryn Tucker

Kathryn Tucker is the Co-Chair of the Psychedelic Practice Group at Emerge Law Group and a Founding Board Member & Co-Interim Executive Director at The Psychedelic Bar Association. She has served as an adjunct law professor at Lewis and Clark School of Law, Seattle University, the University of Washington, Loyola/LA and Hastings. In 1997, as legal director of Compassion & Choices, Tucker argued Washington v. Glucksberg before the U.S. Supreme Court, seeking to establish a federal constitutional right to choose aid-in-dying. The Glucksberg case is widely recognized as prompting widespread effort to improve end-of-life care. Tucker attended Hampshire College and Georgetown Law School.

The interview below was conducted in Spring 2022 and has been edited for brevity and clarity.

Harvard Undergraduate Law Review (HULR): Legally and substantively, what are the distinctions between terms like “aid-in-dying”,  “assisted suicide”, and especially, “refusing medical care”?

Kathryn Tucker: Decades ago, if a physician were to provide a prescription for medication to a terminally ill patient that the patient could ingest to achieve a peaceful death, that might have been referred to as physician-assisted suicide. But over the past twenty-five years, it became recognized that using the word “suicide” when referring to that act was inappropriate because what was bringing the life of the terminally ill person to an end was a terminal illness, and it was the choice of a dying patient to achieve a more peaceful death. In the face of that reality, the act should not be referred to as suicide. It was determined that it was inaccurate, that it was a pejorative and value-laden term; it carried a stigma and negative connotation, and it was an affront and an offense to those dying patients. 

So, what emerged was a focus on using a value-neutral term that was accurate, and what has become a widely accepted term for that act is “aid-in-dying,” and some people will append the word “medical” on the front of that and use the term “medical aid-in-dying”. I, myself, consider that a bit redundant because the term “aid-in-dying” refers to a specific practice that always involves a physician, a medical doctor. Also, the term “aid-in-dying” refers to the practice of a physician providing a prescription to a mentally competent, terminally ill patient for medication that the patient could ingest to achieve a peaceful death. So, that's where we are now in 2022. If you see the term “assisted suicide” applied to that conduct, it is either an ignorant person or a vociferous opponent of the practice. There remain those opponents, and they will always use that term because it is incendiary, but if you are an educated and informed person, and you are either neutral on the practice or you are supportive of it, you would use the term aid-in-dying, which has become widely accepted.

HULR: Thank you so much for clarifying. Now, as you know, in 2022, in America, aid-in-dying laws are being decided on a state-by-state basis, but are still illegal on a federal basis, but the right to refuse medical care is legal on a federal basis. Why is this so?

KT: This is something that we might spend a semester at law school exploring. It’s a tough thing to wrestle to the ground in a short conversation, but basically, in [Cruzan v. Director, Missouri Department of Health], and the cases upon which Cruzan is based, it has been recognized as a matter of federal constitutional law that individuals have the right to autonomy and privacy in medical decision-making. That would include the right to refuse any intervention, any medical intervention, or even an intervention of forced food and fluid to prolong life if that's the individual's choice. So, that's been recognized through a long line of individual liberty, privacy, [and] autonomy precedent [with] Cruzan of course among them. 

We did look to Cruzan and that body of jurisprudence in the Glucksberg and [Vacco v. Quill] cases. We were arguing that those precedents ought to extend a bit further and that they ought to apply to the choice of a dying patient to have a more peaceful death and that argument was successful in the Federal Circuit Courts of Appeal in the Ninth Circuit and in the Second Circuit, but as you know, what the [Supreme Court] did was say, “We're not going to go there today.” I do think that the court was very careful to preserve the possibility that it would go there in the future and there's nothing that the court would need to do to overrule Quill and Glucksberg. It simply reserved judgment on that question. It said, “We're not going to find a federal constitutional right to aid in dying today. We might in the future, but for the moment, we invite the laboratory of the states to address this issue.” And so, that's something that the Court sometimes does and sends it back to the states, particularly with a controversial issue. 

That's what happened in that tandem pair of rulings in Quill and Glucksberg, in 1997. Interestingly, Oregon had been the first state to adopt a law regarding aid-in-dying in 1994 called the Oregon Death With Dignity Act. That law was held up by litigation that was resolved almost immediately after both the Quill and Glucksberg rulings, enabling the Oregon law to begin implementation, which it did, starting in the calendar year 1998 and from 1998 through today. There has been an uninterrupted implementation of the Oregon Death With Dignity Act. That act became a model for other states, and other states have now adopted quite similar laws. Then, there are other states in which I've made the argument that aid-in-dying is a permissible legal practice, pursuant to existing state law, even though there isn't a specific statute adopted regarding aid-in-dying. So, what you have now is a landscape where there are statutory permissions for aid-in-dying, there are court precedents permitting the practice, and there are states where one can make the compelling argument that other state laws permit the practice without a specific aid-in-dying enactment. 

HULR: That segues perfectly into my next question. Do you believe that Washington v. Glucksberg was decided correctly? Essentially the Court sent the issue back to the states, and now there's a patchwork of policies and legislation regarding the right to die. Do you think this was correct or do you think that, like in Obergefell, Glucksberg should have been decided once and for all on a federal level? Do you think there are pros and cons to both and what are we seeing in the current status quo?

KT: Wow, that's such a great question. Look, I believed in what we argued in Quill and Glucksberg. I believe in federal constitutional liberty, privacy, and autonomy jurisprudence that extends choice to a dying patient for a more peaceful death through aid-in-dying. I believed that then and I believe it now. Those were really strong arguments that we had and they were arguments that the Ninth Circuit and the Second Circuit adopted and embraced. So, when the Court declined, or I would say more accurately, refrained from finding a federal constitutional right to aid-in-dying in 1997, in some sense, it avoided creating a Roe v. Wade situation, which has now created what you see in the reproductive rights arena with so much backlash that continues to this day. The fact that the Court refrained from adopting constitutional protections then opened the door and invited experimentation in the states, and we did see Oregon as the pioneers in that experiment. 

They came forward with the Oregon Death With Dignity Act, and then other states followed. It's such a complicated history. One of the reasons, I believe, that it took as long as it did for states to follow in Oregon’s footsteps is the effort by then-Attorney General John Ashcroft. When he held the office of Attorney General, he set out to nullify the operation of the Oregon Death With Dignity Act and that led to an extremely interesting round of federal court litigation in the case that I've known as Oregon vs. Ashcroft, later known as Gonsales v. Oregon because [Ashcroft] was replaced by Alberto Gonzales. What was at issue was whether it was admissible for a federal elected official to essentially interfere in the regulation of the practice of medicine as had been adopted in a state, and that issue is its own fascinating issue worth another semester at Law School. What is the division of authority and power between the state governments and the federal government with respect to the regulation of the practice of medicine? And what is the role of federal courts to police that and preserve and protect the primacy of the states in that domain and that issue? This is rearing its head in the really interesting, modern-day case that I'm involved with known as [Advanced Integrative Medical Science Institute (AIMS) v. Drug Enforcement Administration (DEA)]. We're arguing on behalf of physicians that provide care to dying patients and a number of patients with advanced cancer. We have gone to the DEA and demanded that the DEA respect state and federal rights to try laws that would provide for terminally ill patients to have access to certain investigational drugs, one of which is psilocybin, which has been shown effective in relief of non-physical suffering and anxiety in dying patients. We have been making this argument to the DEA and the DEA has been dead-stuck restricting access. Even though state and federal law would permit it, we're right back at that question: are we going to permit a federal agency, here the DEA, to nullify the operation of duly, enacted state law that pertains to the regulation of the practice of medicine? I think the answer must be no. This is why you saw if you've been following it, eight states filed and joined together in a powerful Amicus brief filed in the AIMS case, where they said, “This is an impermissible intrusion of a federal agency that does not have the authority and of course, they cited the Oregon v. Ashcroft case, and of course, Oregon was one of the states that joined that Amicus brief. So, that is the super interesting sort of modern-day manifestation of the principles that were respected and established in the Oregon v. Ashcroft case.

HULR: Moving into my next question, Justice O’ Connor in her concurrence in Washington v. Glucksberg stated that there exist no laws against using palliative care on terminally ill patients even if it has the double effect of hastening the death of the patient. How is using palliative care to hasten the death of the patient substantively different than the passage of aid-in-dying legislation or the Court ruling that everybody has the right to die?

KT: I think this is one of the really interesting conversations that people might not immediately appreciate, but if we are going to empower dying patients with the choice of a more peaceful death through aid-in-dying —  and approximately one-fifth of Americans live where that is an option on the end-of-life menu — the way aid-in-dying is achieved is through the ingestion of controlled substances. If we're going to do that, and we're going to allow dying patients to access controlled substances to advance the time of death, I think the interesting question arises: shouldn't we allow these patients to access a controlled substance that is known to elevate and expand consciousness, which is what psilocybin therapy does? And I think the answer to that should be yes. And it is possible… but there is no data yet relating to the question of how psilocybin therapy could impact how a terminally ill patient thinks about aid-in-dying. There are experts in the field and thought leaders who have hypothesized that if we allow dying patients access to psychedelic-assisted therapy, their interest in aid-in-dying will diminish, and the most prominent thought leader who has expressed that is Ira Byock, who has been a President of the American Academy of Hospice and Palliative Medicine. He has been a thought leader in that domain for 30 years and he has a very powerful voice in the end-of-life care community. He is an opponent of aid-in-dying, has been a vociferous opponent for his whole career, and he has come out in support of psychedelic-assisted therapy because he holds the hope and the hypothesis that patients won't be interested in aid-in-dying if they're able to access psilocybin-assisted therapy. So we don't know if that's true. We will have the opportunity very soon to start examining that in the state of Oregon. Because as you know, Oregon once again has set out as a pioneer in adopting innovative state policy in the healthcare arena, and Oregon adopted the Psilocybin Services Act in 2012 by citizen initiative in the same way it adopted the Death With Dignity Act — direct democracy. That act will be implemented in Oregon starting in January 2023 and that will open a new laboratory where this question could be examined, and some data could be generated. 

HULR: I think that definitely is a really interesting question at this moment. Talking about psilocybin therapy, which is legal in Canada, and right to die legislation all over the world, it seems that other countries are much more liberal in terms of their approach to right to die aid-in-dying legislation. Why do you believe that America has very strict restrictions when it comes to aid-in-dying?

KT: That's another great question. If you've taken a look at who participated in Quill and Glucksberg as amici — and at the time of those cases, they drew the second-largest cohort ever in the history of the SCOTUS of amicus briefs — the question about the right of patients to be empowered to choose a more peaceful death through aid-in-dying clearly strikes a nerve for many special interest groups. In my many years of advocacy, in the trenches, on the front lines of the effort to expand end-of-life liberty to include the choice for aid-in-dying, I saw the same faces opposing the effort every single time, and those are very powerful, very loud voices, very well-funded. They include the Catholic Church, the Christian Fundamentalist Movement, the Catholic Archdiocese, the Catholic Conference, and the American Center for Law and Justice, which was the Jay Sekulow group before he became the Trump counselor. [Sekulow] ran that organization, and they were very anti end-of-life liberty. So, you know, I would just point you to that cohort of amici that shows up in all of the cases opposing end-of-life liberty. 

One of the really powerful voices that you might be slightly surprised by is the voices of many in the disability rights movement. And it's very perplexing, really, and it's one of the interesting oppositions because some of the bedrock principles of the disability movement are the identical bedrock principles of the end-of-life liberty movement, and that is: we must repose autonomy and autonomous decision-making in the individual, and that's what the end-of-life liberty movement is all about. It’s about, “Let's empower the person who is confronted by terminal illness with the choice about how much suffering to endorse before death arrives.” That approach is the same one that disability advocates hold, and that is: “Let's empower the disabled person with choice on how they will conduct their life”. So it's been a perplexing opposition. I believe it grows out of the fact that disabled people have faced a stigma and marginalization in this culture. And so, there's a fear that if dying patients were empowered to choose that, suddenly people with a disability would be forced to make a choice to achieve death and that's….it's a non sequitur, but it has created fear in that community, and we still see that fear today. 

I'm going to jump really quickly to modern-day litigation that I'm involved with. The case is known as Shavelson v. California. Lonnie Shavelson is a physician who includes aid-in-dying in his practice in California. California adopted its statutory permission for aid-in-dying in 2015, and it's called the California End-of-Life Option Act. That statute is a lot like an act, but it has a particular provision that we've challenged. As in Oregon's law, it requires that the patient self-administer the medication for aid-in-dying, but it includes a particular feature that is more restrictive than many states. It has a provision that specifically prohibits any assistance to the patient in ingesting the medication, and we've brought a case that intersects disability rights and end-of-life liberty because we represent patients who are dying of neurological conditions where, as their illness progresses, they become more and more physically disabled. So, for example, [Amyotrophic Lateral Sclerosis] or ALS. And these patients desperately want the option of aid-in-dying because death from ALS is gruesome and horrific, essentially, imposing inexorable loss of bodily function and integrity to where the patient can really only move their eyeballs. These patients face this perverse pressure with the assistance prohibition to ingest the aid-in-dying medication before they lose the physical ability to do so, but that might be before they're ready to die, and so the statute is forcing them to deprive themselves of some remaining days or weeks of life that they could enjoy with their family because they're worried that their ability to ingest without assistance will evaporate. So, we've brought an ADA case where we say look to the language of the ADA because the Americans with Disabilities Act does not permit the state to create a program of benefits and services where people with physical disability are excluded only because of their physical disability, which is essentially what's happening here.

HULR: Justice Breyer, in his concurring opinion in Washington v. Glucksberg, stated, “Were the legal circumstances different…the Court might have to revisit its conclusions in these cases”, to what extent does this leave the door open for another “right to die” case to be sent to the Supreme Court and if so, is this likely?

KT: All of the Justices in their tandem opinions in Quill and Glucksberg left the door open. I think they all were very careful to preserve the possibility that the Court would revisit the question and they didn't enter a definitive rejection of federal constitutional protection. They simply refrained from extending it at that point in time. So, unlike a Bowers v. Hardwick decision, which was a definitive rejection, they…and it [Bowers v. Hardwick] needed to be overturned and it was, in Lawrence v. Texas…this, the Quill and Glucksberg decisions, I think are best understood as a refrain from adopting federal constitutional protection with preservation of the possibility that that protection would be extended in future. Now, as you know, the change in the composition of the Court does not suggest that it would be wise, prudent, or fruitful to take an end-of-life liberty case to the SCOTUS. The sad thing that happened with the placement on the SCOTUS bench of extraordinary conservatives who would not respect the precedent flowing from everything that came before Cruzan and everything, you know, that came through to the day of Obergefell. We don't have a court that is going to be respectful of proposed federal constitutional protections for privacy, liberty, and autonomy, and so, it would be very unwise, in my judgment, to take an end-of-life liberty case back to the SCOTUS. The only sort of possible exception that I'd like to reserve is, if the end-of-life liberty case is arising not under the federal Constitution, but is presenting under something like the ADA like in the case in Shavelson…so, you'll notice that case is an ADA federal statutory claim, which has its own very rich body of precedent that mandates reasonable accommodation and reasonable modification to protect the rights of people with disabilities. If some weird course of litigation leads this type of case to the SCOTUS, I think that the Court is going to respect stare decisis and the precedent and would need to apply that precedent to protect the rights of dying patients, who have a physical disability. But in general, my comments stand.