The Future of Medical Aid-in-Dying in the United States
Compassion & Choices is an advocacy group that aims to give patients power over the choices for their end-of-life care; the group’s executives include Kimberly Callinan, the President and CEO; Kevin Díaz, the Chief Legal Advocacy Officer and General Counsel; and Sean Crowley, the Senior National Media Relations Director. The Harvard Undergraduate Law Review sat down with Callinan, Díaz, and Crowley to discuss the current legal climate surrounding medical aid-in-dying, legislation of recent years, and the future of advocacy efforts.
The interview below was conducted in the Spring of 2022. It has been edited for brevity and clarity.
Harvard Undergraduate Law Review (HULR): Compassion & Choices advocates for medical aid-in-dying. Could you talk about the legal distinction between something like euthanasia and assisted suicide with medical aid-in-dying?
Kimberly Callinan: I can talk more broadly about the mission and the distinction. As an organization, we work to improve care, expand options, and allow everybody to chart their own end-of-life journey. Medical aid-in-dying is one option that we advocate for; it is not our sole mission. The distinction between medical aid-in-dying and euthanasia is that medical aid-in-dying firmly puts patients in charge of their end-of-life care. They are the deciders and they are the ones who have to take—actually ingest—the medication themselves. With euthanasia, it’s a third party who is performing the act on a person, so it’s really different; I think it’s really important that we remember that medical aid-in-dying is about patient empowerment.
Kevin Díaz: I would add from a legal perspective … that medical aid-in-dying is authorized in eleven jurisdictions here in the United States and euthanasia is unlawful; actually, euthanasia is unlawful throughout the entire country.
Sean Crowley: Do you want to talk about separate laws, generally speaking, that prohibit [assisted suicide] and how it’s different from medical aid-in-dying?
KD: That is a good point—assisted suicide is generally found in the criminal code in the majority of states. It normally has to do with people goading somebody else who is in a vulnerable state into killing themselves. Those statutes often still exist in states where medical aid-in-dying is authorized, so in some ways, you can think of medical aid-in-dying as a protection for the practice of medical aid-in-dying that is now legally recognized as being distinct and apart from assisted suicide.
KC: It’s important to note that in all of the statutes, the statutes specifically say that medical aid-in-dying is not euthanasia, or assisted suicide, so the laws themselves very clearly separate the two and make that distinction.
HULR: How does the misuse of language in legal and contemporary spheres negatively impact debates around legislation?
KC: I think it’s unfortunate that people misuse the terminology. First of all, if you’re talking about the terminology around suicide, obviously it can be very offensive to somebody who’s choosing the option of medical aid-in-dying to have it equated to suicide. They all have terminal diseases, they’re going to die and they desperately want to live, [so] they’re really just trying to control how much suffering they experience at the end of life. When you talk about somebody who’s committing suicide, that’s a very serious mental health disorder that needs treatment and there are treatments that can in most instances be applied to the person’s disease that would apply them to live. People who choose the option of medical aid-in-dying get deeply offended when someone refers to it as suicide. Generally speaking, euthanasia is viewed as—people think about the times of [euthanasia proponent Jack] Kevorkian where you had a doctor injecting the medication into a person—and that’s very different to what happens with medical aid-in-dying where it’s personal empowerment. The conflation of those terms results in more confusion. That said, the vast majority of the American public supports the option of medical aid-in-dying, and when you look at the debates that are happening in state legislatures, this is really about lawmakers not listening to the wishes of their constituents.
HULR: In 2016 in Keller v. Healey et al., one of the arguments was that medical aid-in-dying shouldn’t be a criminal act in Massachusetts since there’s no criminal statute; [Compassion & Choices] won on one of the six counts. Could you talk about how in your recent appeal you changed some of your arguments from the initial case to challenge the ruling?
KD: I don’t know if we changed any of our arguments—the court wouldn’t allow us to change the fundamental thrust of our arguments in the case and we have preserved them at the trial court level. There was less of an opportunity to refine some of those arguments because the Supreme Judicial Court took the case from the Court of Appeals, so we never went through that intermediary appellate process. They just took the briefs and we went to the SJC, so I wouldn’t say that any of the arguments really changed. I think it’s important to recognize it’s always been—as you review those pleadings—that the legislature has not acted. I think that sometimes it is hard to look at the record because of the way people speak about it—people talk about the legislative inaction. In this case, it isn’t legislative action to authorize medical aid-in-dying, it’s legislative inaction to either criminalize assisted suicide or to authorize medical aid-in-dying; neither has happened. The legislature has been silent, so that’s why the case really focuses on whether there’s a common law right to be able to direct healthcare at the end of life in this way and also if there was a common law prohibition on whether there was a constitutional right that would supersede that common law to protect someone’s right to end their life.
HULR: Since [the case has] been reviewed again so recently, what were some of the newer developments?
KD: The Trial Court is usually just one judge, and they have a very different job than the Appellate Court or the SJC. One thing that was very clear was that the trial court felt constrained by what the law was and what the law is, and recognized that it was not the trial court’s place to create or interpret things inconsistent with what they saw to be the rulings from previous SJC opinions. From that proceeding, it was also very clear that the judge knew it was going to go up on appeal [and] that this was a matter of significant import that required the SJC to rule and to weigh in on. That happened at the Appellate Court level too but we were able to skip that stage. The Appellate Court would be constrained in the same way as the Trial Court in that it wasn’t directly on point; in the two SJC opinions that dealt with the case both in the indictment and the conviction, the Court both times made a distinction between what happened in Carter and what might happen in the context of medical aid-in-dying. There were specific lines in both of those SJC opinions that said this is different than when a terminally ill patient is talking to a physician and getting help for their end-of-life options. The Trial Court knew that [the case] was going to go up; it made room to make sure there was an ample record and the people had the opportunity to make the arguments they needed to make regardless of whether [the judge] was going to rule. [The judge] agreed with them in part because she knew it was going to go up on review and then a full hearing would be presented to either the Court of Appeals or the SJC and ultimately it was the SJC.
HULR: In 1997, the U.S. Supreme Court chose not to recognize the right to aid-in-dying. Could you speak to some of the arguments about why medical aid-in-dying should be a constitutional right and whether you think another case in the Supreme Court could be likely in the future?
KD: It’s important to remember what those cases were about. The question before the U.S. Supreme Court was whether or not there was a fundamental right to what they phrased as assisted suicide. If there wasn’t a fundamental right, then the assisted suicide statute on the books would be constitutional in that context. The court found that there was not a fundamental right to assisted suicide, so the prohibitory statutes to assisted suicide could stand. The important thing about those cases and the language was it provided room and space for our federalist system to look into the issue and consider passing medical aid-in-dying laws—it left that open very clearly, which advocates went on to do and have gone on to do. We have slowly done it, winning the “hearts and minds” of people and explaining what medical aid-in-dying is and is not, and how it fits into the larger picture of end-of-life care and people being able to make choices for themselves in consultation with their loved ones, their spiritual guides, and all the rest. The conception of what is possible and what it means has continued to evolve, mostly at the state level as opposed to the federal level, but there is a much more profound understanding of what it means to make medical decisions when it comes to end-of-life care. The work we have been doing on a state-by-state level has helped move the needle on that. Where, ultimately, it will go with this Supreme Court I don’t know—I don’t think it’s time, or we’re ripe for bringing up medical aid-in-dying at this time to the U.S. Supreme Court, but I think if we have our continued success at some point this will happen.
KC: [In addition, the Glucksberg decision did not] just leave the doors open for the states. I would go one step further and say it encouraged an earnest and profound debate on the legality, morality, and practicality of medical aid-in-dying. It tossed it back to the state legislatures and said this is where that debate really belongs. That was a really significant moment in the movement’s history because it’s that debate that has resulted in the strength of the movement. We have 10 states and Washington DC—states that have been authorized through hard work and blood, sweat, and tears—and we have changed public opinion over time. It’s a real example of turning a lemon into lemonade because I’m sure in the moment that didn’t feel like a victory, but when you look back at that moment, that is what has given this movement strength.
SC: Kevin, I wonder if you, or Kim, want to address the fact that our previous successful lawsuit at the state level, the Montana case, if there was a specific statute in Montana that prohibits assisted suicide and yet the court still ruled that there was no statutory prohibition on medical aid-in-dying in Montana. I grant you that Massachusetts doesn’t have such a law but Montana does.
KD: What that statute provided was a defense of consent. It still is kind of imperfect—it would be much better if we could pass a statute in Montana that laid out the framework for medical aid-in-dying so it wouldn’t still be under threat. It’s constructive that when we did get a legislative win in Montana, there had been efforts to essentially overrule the Supreme Court of Montana’s decision every one of the last thirteen years. It’s great to have the judicial win and the recognition of a right, but it really is the implementation and the coalescing of a shared understanding of where the lines are that is reflected in statutes that are so important to really plan and be able to make decisions without concerns with the complexities of the law.
KC: The immunities and the statute are equally important. Even though the court has ruled in Montana that it was not unconstitutional to practice medical aid-in-dying, what we hear from providers is that they want the kind of immunities that are in all the laws in all the state legislatures.
SC: The Montana state legislature only meets once every two years, but every legislative session, they’ve tried to overturn the rule.
HULR: In regards to Baxter v. Montana, could you speak to the protections and limitations that that ruling offered?
KD: The shorthand is that the protections are that people can actually practice medical aid-in-dying—patients can get access to it. The reality is that there aren’t immunities that Kim [Callinan] was talking about, so if there was ever doubt or questions, about whether or not someone had appropriately practiced medical aid-in-dying, the physician would be subject to a criminal trial or a criminal prosecution. It’s not terribly satisfactory at the end of that to say “great, I won, I’m not guilty:” it’s a terrible ordeal and no one wants to go through that. That’s why access is so limited in Montana.
SC: But there hasn’t been a case yet … no one has ever been prosecuted in Montana.
KD: On the plus side, prosecutors don’t really want to lose, and unless there was a really clear violation of the standard of care or something like that that they wouldn’t lose.
KC: But with doctors already being reluctant to practice in general, adding on a lack of immunities really does temper implementation of the law.
KD: Absolutely. Going back to the Kligler case, if we win, it still would be better to also have a statute that fell in line with whatever the case may say. Regardless, I think there would still be a continuing discussion with the Massachusetts legislature.
HULR: Regarding Gideonse v. Brown et al., the settlement reached in Oregon that may allow non-Oregon residents to receive medical aid-in-dying there, could you elaborate on what impact this could have on legal advocacy going forward?
KC: Gideonse v. Brown is really exciting for the movement. The residency requirement is no longer in effect as a result of the settlement of that agreement with the Attorney General. If you look at healthcare in general, we have been unable to find any examples where healthcare is restricted to somebody because they’re not a resident of a state, and that was one of the primary arguments in the case. The case that was brought forward was for a doctor who was on the border between Washington and Oregon and he had patients who were in Washington state—which was another authorized state—and he could not serve those patients at the end of their lives; they had to discontinue their care with him if they wanted the option of medical aid-in-dying and find a provider in Washington state. The good news for patients that live on the border is that they will now be able to access medical aid-in-dying within Oregon from their own physician. It also means that other patients that come from other states can come into Oregon and will be able to access medical aid-in-dying in the same way that anyone else is able to. You still have to establish a relationship with a doctor who is going to serve as your attending physician and take responsibility for your care. You have to take the medication in Oregon in order to be guaranteed protection under the law for your loved ones, in particular, since you wouldn’t be alive. It’s still a very lengthy process to get through, so someone would have to really know in advance that this is the option that they want for them to be able to go to Oregon and get this option. It’s not going to result in large numbers of people going to Oregon in order to access the option. However, for those people who live in a state that is very unlikely to authorize medical aid-in-dying, in the South or in the Midwest, there just isn’t going to be an option in the state that they live in given the political climate. [The decision] opens the door for them to be able to have this as an option, [which] brings peace of mind to so many people.
KD: One clarification: though the Attorney General facilitated and had attorneys that represented the different clients, the settlement is with the three defendants that were remaining in the case: the prosecutor in Multnomah County, the Medical Board, and the Health Authority.
SC: What about Washington residents specifically? Washington is an authorized jurisdiction; can people potentially take the medication in Washington state since it’s also an authorized state or California?
KD: Our guidance is that if you want the most protections that are found under the settlement, all of the actions need to take place in Oregon, and ideally in Multnomah County, Oregon. That is, if you were completely risk averse, that is what you would do. I think the risk of someone going through the entire process in Oregon and returning to an authorized state to self-ingest is also exceedingly low. For the patients that Dr. Gideonse was trying to serve, I don’t think there’s any real problem for them to come to Oregon, go through the process, and self-ingest on the other side of the river. I can’t imagine there would be a prosecution—and I can’t imagine they would win if they did prosecute—so I just don’t see it as a problem. I think the real danger comes into play if you have someone from an unauthorized jurisdiction—let’s take Idaho for example because some of the laws that are being passed in Idaho are pretty extreme when it comes to people being able to make medical decisions for themselves—if someone comes from there and decides to go back to Idaho, the danger is that because the assisted suicide statute is on the books in Idaho, then the family members could be at risk, and depending on if there was any connection with the physician, or the physician’s license was in Idaho, then that potentially could be another issue. But really, it is about the family members and those people who provide support as people who are going through the process when they self-ingest in a jurisdiction where it is not authorized.
KC: The way it would likely come up is if there is a suspicious death, it would trigger an investigation. It wouldn’t be triggered in an authorized state in the same way as it might somewhere that isn’t used to having this law, and that is where the risk comes into play.
HULR: Now that medical aid-in-dying has been legalized in several states, how has this informed and affirmed some of Compassion & Choices' advocacy efforts in the area of medical aid-in-dying?
KC: First of all, it has reaffirmed the importance of medical aid-in-dying as an option. We’ve seen after the laws get implemented that it doesn’t just benefit the small number of people who want the option, but it also benefits the greater community of people who are terminally ill. After the laws get implemented, it helps to contribute to greater enrollment into hospice care, better palliative training for doctors, and better conversations between doctors and patients. It really improves all end-of-life care and makes it a much more patient-directed process. We also have decades of data across twenty-five years in Oregon and decades in other authorized states, and we know that there is no abuse or coercion. It is an option that can both afford people autonomy and compassion at the end of life, and at the same time it is protecting vulnerable populations, so that reaffirms the importance of bringing this option to every state. The last thing I would say is that we’ve seen over and over again with the data that the way the law was originally crafted in Oregon, there are too many regulatory roadblocks in place, so it’s very difficult for a terminally ill person who is at the very end of their life to navigate this 13-step process that has a waiting period in it, to get through it in time. [We have seen] about a third to half of those people die during that waiting period while they are trying to get through the process. A newer part of our advocacy in the last three plus years has been to try to improve upon the law—not to change who is eligible for it, but to ensure that those people who are eligible are able to access the law in the easiest possible way while still protecting vulnerable populations.
KD: What’s interesting is that opponents are shifting their focus towards blocking access, putting all their eggs in the “stop authorization” basket.
KC: We’ve seen legislative battles where when [medical aid-in-dying opponents] thought they were going to lose, they tried to add so many restrictions into the legislation—Maryland was the worst example of this, where they had put 24 amendments. They were really over the top with amendments: we’re going to remove all of the immunities from the law, we're going to make it so that no two doctors can know each other or have any relationship or affiliation with each other in any way. Any one of the amendments made the law not workable, and the 24 of them together? It was very clear that [opponents] knew they were going to lose this, so their goal was to make this law meaningless and throw in as much as possible, so we ended up pulling the legislation and not supporting it because it was going to be a false promise for dying people.
KD: The other context in which they are trying to block access is asserting claims relating to religious exemption through religious refusals, anything from not wanting to chart important activities in visits with a physician to not providing straightforward information, or not even transferring patient files to other providers.
KC: There are two lawsuits pending right now about trying to strike down the constitutionality of both the California and the New Jersey medical aid-in-dying laws, and both of those are arguing that it’s not constitutional for a doctor to have to transfer medical records or provide basic information to their patients about the option of medical aid-in-dying.