Assisted dying in the United States

Speaker:

Professor Thaddeus Mason Pope, JD, PhD, HEC-C, Mitchell Hamline School of Law. Thaddeus is a law professor and bioethicist using the law both to improve medical decision making and to protect patient rights at the end of life. In both scholarship and policy briefings, he balances liberty and public health, assures adequate informed consent, and develops fair internal dispute resolution mechanisms.

So, before I welcome today’s presenter, I’d like to go over a few quick housekeeping items. Everyone on the call today is muted, however, there will be opportunities for you to share your questions and your comments. To do so, please type your questions into the Q&A bar, you’ll see that on the Zoom side panel, and we’ll read that out for you at the end. So, please try to keep your question as concise and clear as possible, that way we can try to get to as many viewer questions as possible. We will be sending a post webinar survey that will pop up on your screen after the webinar. If you could take a few minutes to fill that out, that would be very appreciated, and we’d love to hear your feedback. This session is being recorded, so you have the opportunity to watch it again later, or if you wanted to pass it along to friends who couldn’t make it today, that’s an option, and there’s no need to take too many notes because you can access this recording.

So, now to introduce today’s speaker, we have with us this afternoon, Thaddeus Pope. Thaddeus is a law professor and bioethicist using the law both to improve medical decision making and to protect patient rights at the end of life. In both scholarship and policy briefings, he balances liberty and public health, ensures adequate informed consent, and develops fair internal dispute resolution mechanisms. And thank you so much for being with us today, Thaddeus. I will turn it over to you.

All right. Thank you. I’m just going to share my screen and okay. I’m just going to move this over. Okay. Thanks for having me. We’re going to talk about assisted dying in the United States. I want to thank Death With Dignity Canada for including me in its first annual conference. And I also want to thank the University of Ottawa which hosted me last year as a Fulbright scholar in health law policy in ethics that allowed me to learn a lot more about MAID in Canada. So, I’m going to talk about MAID in the United States and I’m going to do that by contrasting US MAID with Canadian MAID. So, I’m going to explain US MAID by reference to Canadian MAID.

So, here’s the roadmap. This will take just 20 minutes, and then I want to hear your Q&A. The roadmap is in five parts. First, I want to talk about when MAID started in the United States, where it’s available, who is eligible for MAID, how exactly does it work, and then finally, what’s coming up next, right? What’s coming up next for MAID in the United States in 2022 and 2023. Okay. So, let’s start with when. So, as you know, in Canada, the Supreme Court decided the Carter case in early 2015 and then that was followed by Bill C-14 in 2016. In the United States, MAID started much, much earlier, more than 20 years earlier.

Now, we don’t have a Carter case or the analogy of a Carter case in the US. We have what you would call a Rodriguez case in the US. Back in 1994, a lawsuit was brought in New York State by this physician and some terminally ill patients. And at the same time in 1994, a lawsuit was brought in Washington State by this physician and some terminally ill patients. And what they were arguing is that there is a right, a fundamental protected right to MAID under the US constitution. And there were reasons to be optimistic about these two lawsuits, and that’s because just a few years earlier, the US Supreme Court had decided the Nancy Cruzan case, and in that case, the court said that there’s a right to refuse treatment, even life-sustaining treatment, a fundamental protected right, and pursuant to the concept of equal protection, which is embedded in the constitution, similarly situated people have to be treated alike.

And so, the thought was if terminally ill patients on, for example, mechanical ventilation have a constitutional right to withdraw that mechanical ventilation, then terminally ill patients not on mechanical ventilation should have the same right to hasten their death. And in fact, at least 15 federal appellate judges agreed with this proposition, but in 1997, the New York case and the Washington case were consolidated and they go before the US Supreme Court, and the US Supreme Court said, “No, there’s no right to MAID under the US constitution.” So, if there’s no federal right to MAID, the focus then turned to the states, the individual states. And the first thing that happened was there was a litigation seeking a right to MAID under state constitutions. And that’s because state constitutions actually often provide a broader, stronger scope of protection for individual liberties than the US constitution.

So, a lot of these cases were brought all across the country, seeking a state constitutional right to MAID. Unfortunately, none of them really met with any success, a few, one at the trial court, but then lost on appeal that happened in Florida and in New Mexico and in Montana. But most of these cases actually lost at all levels of the courts. One of the most interesting and earliest cases was brought in 1992 by this scientist who wanted to cryogenically freeze himself and then to be reanimated at a later point in time when there would be a cure for his illness, but effectively, by cryogenically freezing yourself would constitute medical assistance in dying, and the California court said, “No, there’s no right to that.” Other courts also said there’s no state constitutional right to medical aid in dying in Colorado, in Alaska, in California, in California again, in Tennessee, Hawaii and New York.

So, this idea of seeking a state constitutional right just didn’t work out. There’s one active case happening right now brought in Massachusetts by this patient who also is himself a physician. And that case actually is scheduled to be heard by the Supreme judicial court in Massachusetts in just a few weeks. But as of right now, there is no right to MAID under the federal constitution or under any state constitution. So, the focus has really lately been and continues to be to change state law. And the reason that is necessary that we need to change state law is because right now, across the United States, since the 1800s, helping somebody commit suicide is a crime, as former Supreme Court Justice Scalia noted, “Assisted suicide prohibitions are deeply rooted in our nation’s legal history.” And just to give you one example, this is the New Mexico statute, it says “Assisting suicide, aiding another in the taking of his own life is a forth degree felony.” Right? And you have a law just like this in every single state.

So, the problem is that MAID definitely constitutes assisted suicide and, assisted suicide is a criminal felony, therefore MAID is a criminal felony. Now, there’s one state that that’s not true and that’s Montana, because in Montana, the criminal states that the consent of the victim is a defense to what otherwise would be a crime. And of course, with medical aid in dying, the physician has the consent of the patient. So, there isn’t a criminal prohibition in Montana, but everywhere else, every other jurisdiction in the US, you need to exclude MAID from the scope of the assisted suicide prohibition, right? These two things, medical in dying and assisted suicide need to be separated. And the way to do that is by passing a state statute.

And there’s two ways to pass a state statute, through a ballot initiative or through legislation. So, in terms of ballot initiatives, all these blue states, a lot of states have sort of what you call ballot initiative or a popular referendum process. And we put MAID on the ballot for the voters starting the late eighties and early nineties, but these very early ballot initiatives did not succeed. And the thought about why they didn’t succeed is because they were trying to legalize both physician-administered MAID and patient-administered MAID. So, in 1994, Oregon tries something different. This is the voter pamphlet from 1994 for the Oregon voters. And on the ballot in 1994 was a proposition to legalize just patient-administered MAID, right? It would require self ingestion. That passed, and it worked really well, had a very solid patient safety record. And based on that, that model was followed, that Oregon model was followed with other ballot initiatives, first in Washington State, then later in Colorado, those both passed. There were some other ballot initiatives that were really close and other states were looking at ballot initiatives as well.

Other states took a legislative approach, right? So, you have a bill and it has to go through the legislature. That first MAID bill was first passed in Vermont through the legislative process, then in California, Washington, DC, Hawaii, New Jersey, Maine, and then most recently in New Mexico. So, altogether we’ve enacted 10 MAID statutes, three through ballot initiatives and seven through bills, and then of course, there’s Montana. So, as of today, we have MAID as a legal end of life option in 11 US jurisdictions. So, to recap this point, we started back 1994, 22 years before C-14, but we are going state by state, by state, right? One at a time, and that is sort of a slow process.

Okay. So, let me move from when to where, where is MAID available. Of course, in Canada, it’s available all across Canada, in every province and territory. In contrast, in the United States, it’s only available in these 11 jurisdictions, the red ones, which means MAID remains criminally illegal in 45 out of 56 US jurisdictions. Now, we could look at it instead though, instead of by number of jurisdictions, we could look at it by in terms of population, because California, all by itself is more populous than the entire country of Canada. And if we add up the population of all 11 US jurisdictions were MAID is legal, that 74 million people live in a jurisdiction were MAID is a legal end of life option. If you divide that by the total US population, you can say that one in five Americans lives in a jurisdiction were MAID is a legal option. And of course, it’s ongoing where more states are looking at this. At least half of the remaining states consider bills every single year.

This year, in 2022, these are the five states that many most expect to be the next states to legalize MAID. Things have been moving in just one direction, meaning every year, there are more states that permit MAID than the year before, and generally MAID becomes more accessible each year than the year before. But it’s worth noting that there is sort of a counter movement out there. There were lawsuits brought challenging the very legitimacy of the MAID statutes in California and New Jersey. And there have been bills, in fact, there are some current bills to repeal MAID laws in New Jersey, Montana and Washington, DC. Now, those were unsuccessful, but it just highlights the fact that the US is variable right now, is probably going to remain variable in these states, these black states probably, MAID would be unlikely to be legalized in those states for a long, long time.

So, one more point on where MAID is available. We have a residency requirement. Now, of course, Canada also has a residency requirement. To get Canadian MAID, you need to be eligible for publicly funded healthcare services. Well, in the United States, since the MAID laws exist at the state level, the residency requirement also exists at the state level. So, every MAID statute says, you need to be resident, right? So, for California, you need to be resident of California, in Vermont, you need to be a resident of Vermont. Now, the residential requirement isn’t that onerous. First of all, it’s just confirmed by the attending physician, it’s not like applying for a passport or something. And the indicia of residency that the physician is to use are things like a driver’s license, voter registration, a tax return, or owning or leasing property. And I highlight that because it would be very easy for anybody on this call to lease property in any of the 11 MAID jurisdictions, and thereby, as soon as this afternoon, you have a requisite indicia of residency of that state.

So, the bar is pretty low on how residency is established. That said, for some, it still is a little bit of an obstacle. So, if you look at where Portland, Oregon is here, it’s right on the border of Washington State to the north. And this physician works in Portland, but some of his patients live on the other side of the border. Portland’s the largest city nearby, that’s where their doctor is, this is their doctor. Well, some of those Washington State patients are unwilling or are unable to become Oregon residents, and they may want MAID from their Oregon physician, but they’re not Oregon residents. So, he has brought a lawsuit challenging the residency requirements. Basically, he’s asserting that Oregon may not limit MAID to Oregonians, because that would violate something that’s in the US constitution called the privileges and immunities clause which basically says that, “The citizens of each state shall be entitled to all the privileges of citizens of other states.” So, Oregon cannot limit MAID to Oregonians, it’s constitutional.

Now, if the plaintiffs win that lawsuit, that would really expand MAID in the US. So, to give you an example, Arizona, where MAID is not legal sits right between two other states were MAID is legal, so California to the west and New Mexico to the east, right? So, if the residency requirements were on constitutional, then a terminally ill adult in Arizona could go either to New Mexico or to California, which they can’t do today. So, that’s when MAID started, that’s where MAID is available. Let me turn to who is eligible for MAID, right? In Canada, you need to be an adult, you need to have capacity, you need to provide informed consent, and you have to have a grievous and irremediable medical condition.

Now, for the first five years of Canadian MAID, your natural death had to be reason foreseeable. Now, that was never a strict temporal measure, right? It was sufficient that you had the predictable trajectory toward death, even if it was somewhat far off. Then of course, in March 2021, that reasonably foreseeable natural death requirement was eliminated altogether. Well, in the United States, we really do have a strict temporal measure. The patient must be terminally ill, which means that they have to have an incurable and irreversible disease that will result in their death within six months, six months. So, people like Truchon and Gladu would never qualify, would never qualify for MAID in any US jurisdiction.

So, the scope of eligibility of Canadian MAID is far broader than the scope of eligibility in any US MAID jurisdiction, and that’s reflected in the usage, right? Look at Canadian MAID, the 2.5% of all Canadian deaths are from MAID, and that’s still rising, has been rising, continues to rise. In the US, of course, it varies from state to state, but let me just take California, and the reason I take California as an example is because MAID started in California roughly the same time MAID started in Canada.

It’s only one-tenth of 1% of all deaths in California are from MAID, right? That’s 2500% less than in Canada. And even if you take another state like Oregon where MAID has been available for 24 years, it still only comprises six-tenths of 1% of all deaths in Oregon, still far, far less than Canadian MAID. So, let me turn now to how MAID is provided. In Canada, as you guys know, MAID can be clinician-administered or it could be patient-administered. Now, of course, while both are available, 99.9% of all Canadian MAID is clinician-administered, but in the US, it’s exactly the opposite, sort of black and white here. In the US, it’s only and always patient-administered. There’s no IVs, never IVs in the US. Now, what the patient can do is ask and receive a prescription drug that they then may self-administer to hasten their death at some later point in time. The main drug now is called D-DMAPh, digoxin, diazepam, morphine, amitriptyline and phenobarbital.

And the patient can take that in three different ways. Most patients drink it, so it would be mixed with something like apple juice and just drunk out of a cup. Some patients can’t do that, so you could also press the plunger on a feeding tube, or you can press the plunger on a rectal tube, but the patient has to do that. Others can help prepare the meds, mix them up, but they may not help administer the meds, the patient has to do that. The patient alone takes the final overt act causing the medication to go into their body. In Canada, clinician administers the medication 99.9% of the time. The clinician therefore is present 100% of the time. In the US, the clinician prescribes, that’s their role. The clinician prescribes the medication, the patient administers it, and the clinician is present less than half the time.

So, we’ve covered when MAID started, where it’s available, who’s eligible and how it is administered. Let me just turn now to what’s coming up next in the US. US MAID law is changing. For the first 25 years, we followed this Oregon model pretty closely because it worked. Now, I wrote this article where I pointed out that there actually are variations from state to state, to state among the 11 states, but those are pretty minor. Generally, the Oregon model has been followed. We might call this MAID 1.0, but starting in 2019, things started to change a little bit. We started to break that Oregon, that mold and that’s because we’ve started to focus more on access. The old focus used to be is MAID legal or is MAID not legal? So, it’s sort of a binary framing of things. Now, we’re looking beyond that, and now we’re asking not only is MAID legal, but can patients actually get it, the qualified patients?

So, we’re looking at the precise terms and conditions under which MAID is available. And so, we might call this MAID 2.0, and there’s three big… These aren’t the only three, but these are the three big things that are happening right now. We’re focusing on who are the qualified clinicians? What are the waiting periods? And how exactly does self-administration work? So, in terms of qualified clinicians, in Canada, it can be a physician or a nurse practitioner in most provinces. In the US, the traditional rule has been that your eligibility needs to be confirmed by two clinicians, and that both of those are physicians, an MD or DO, but we have a real shortage of physicians in many states, especially in rural areas of those states. So, the move has now been to extend the role of the MAID clinician to nurse practitioners and physician assistants. That’s already happened in New Mexico, and there are bills to do that in MAID states like Hawaii and in prospective MAID states as well.

The second move that’s happening pertains to the waiting period. So, in Canada, as you know, for the first five years, there was a 10-day waiting period, reflection period, and of course, that was deleted in March 2021. In the US, the general rule, the traditional rule has been a 15-day waiting period between requests. So, the patient has to make at least two oral requests for MAID, and those two requests need to be separated by at least 15 days. In Hawaii, it’s 20 days, just one of those examples of how the states aren’t exactly identical. And the idea of course, is to assure reflection, assure that the request is enduring, assure to careful consideration on the part of the patient, but this waiting period constitutes for many, many patients in undue burden, because they just can’t wait that long.

And there’s a lot of data on this. You have Canadian data, but during the process, a third or more of patients lose capacity and a significant fraction of patients die during the waiting period. So, the response to this has been what? Has been to either waive the waiting period for patients not expected to last that long, or just to shorten it categorically for all patients. And so, that’s already happened in Oregon, California, and New Mexico, and there are bills to shorten or waive the waiting period in a number of current MAID states and prospective MAID states. And then the third thing that’s changing pertains to the mode of medication administration. In Canada, as I said, as you know, MAID could be administered by the clinician or by the patient, of course, it’s almost always by the clinician. In the US, it’s always self-administration, it’s always by the patient. The patient is the one that ingests the meds herself, again, it could be drinking it, press pressing a plunger on a feeding tube or pressing a plunger on a rectal tube.

But, but what about neurological diseases like ALS, right? In later stages of ALS, you may not have the muscular ability to drink the medication or press a plunger. So, there’s a new lawsuit brought in California by this patient and some others, and what they’re arguing in the lawsuit is that the California End of Life Option Act violates the Americans with Disabilities Act. And they charge that the California MAID law discriminates against those who are physically unable to administer. So, if you have two terminally ill patients, this one has cancer, they can self-administer. This person’s also terminally ill, also wants MAID, and the only reason she can’t have MAID is because she can’t self-administer the medication. So, she’s deprived of MAID because of her physical disability. Now, that lawsuit is really just getting underway. It really just started, so we don’t know yet, but that’s another thing that’s happening in the US.

So, let me just recap. There are three moves to improve access. We’re expanding the types of qualified clinicians, we’re shortening the waiting period, and we perhaps may permit some assistance with the ingestion. So, let me just wrap up. As of today, we have MAID as a legal end of life option in 11 US jurisdictions. This year, we may add some additional jurisdictions and we likely will make MAID more accessible in the jurisdictions where it’s already a legal end of life option. Thank you.

Great. Thank you so much. I really did not know that much about MAID in the US. So, I’ve learned a lot, and yeah, it’s really fascinating. I love how you compared the two to sort of make it quite clear. And so, thank you so much for that. Okay. So, a few questions have come in. So, we may as well get started. So, someone said, “You mentioned how often a might be present for a MAID death, who else is usually present at a death in the US? I’ve heard of volunteers with right to die organizations who are there to support patients and family members. Is this common in your experience?”

That’s a great question. One unfortunate fact of US MAID is one of the ways in which the states vary is in the way in which they collect and report data. So, we don’t know the answer to that question in some states, because it’s just not something either that the state Department of Health collects or that they report back out publicly. Some states do collect that, and so in Oregon, for example, they break it down, I think into three or four ways. So, the first, they’ll say, “How often was the prescribing clinician present?” The same person that prescribed it, how often were they present? That’s pretty uncommon, I think that might be around 20% of the time, but second they say, “Well, how often was some other clinician present?” So, let’s say, normally that the prescriber’s going to be a physician, or maybe that physician, there was a nurse that works for that physician, the nurse was present. So, that’s more often, so that may be 30% of the time.

And then even if neither the prescribing physician nor her nurse was present, there is in some states, especially Washington and Oregon, a pretty vibrant volunteer network. And so, yeah, so they’ll be present. And that really helps so the family can focus on being with the… They don’t have to worry about mixing the medications and doing it correctly and all that sort of stuff. So, it is very, very helpful. So, it’s rarely the case that the family is completely unaccompanied.

Yeah. So, interesting. Thank you. Someone was wondering if you could talk about the public support for MAID across the US. I think what this person means is are there a lot of people who seem to support MAID, or is there more resistance to MAID sort of becoming more available in various states?

So, we have lots of professional polling agencies like Gallup and Harris and others, and consistently for years, they’ve reported an overwhelming support. So, 70% to 80% of the general public support MAID as a legal end of life option, even among physicians, because you can break it down, even if you just polled just physicians, it’s a majority of physicians. It’s lower than the general public, but it’s still a majority. So, the support is very, very strong.

Great. Thank you. Someone said, “Is there significant risk in the future of some of these laws perhaps being backtracked, and maybe things sort of shifting to restrict MAID perhaps in certain areas more than it already is?

Well, so I did say that, I wasn’t going to do that, but I did include it in the presentation that there have been bill. So, sure, there’s a risk because there’s already a demonstrated track record of a risk. So, as an example… Because these bills actually got pretty close. In Montana, like I said, there’s not really an affirmative MAID statute, it’s just that the Supreme court of Montana said, “The current law doesn’t prohibit it.” And so, some clinicians provide MAID in Montana, even though there’s no statutory scheme that tells you who’s eligible and how you do it and all that. But there have been bills that have passed at least one chamber, either the House or the Senate in Montana over the last several years that would, I will use this verb, recriminalize, right? Although maybe arguably, it was never criminal in Montana, but instead of saying recriminalize, I would say criminalize, that would criminalize MAID, even though it’s not currently a crime.

And like I said, somebody introduced a bill this year to repeal the New Jersey MAID statute. It was passed in 2019, somebody introduced a bill just days ago to repeal it. So, yes, there’s a push. And if you look at what’s going on in the US with abortion, I think we might see that as the canary in the coal mine for potential risks to MAID.

Yeah. Certainly. You can definitely draw many similarities in those cases for sure. That makes a lot of sense. Somebody was asking, “Are there issues with doctors refusing to prescribe even to patients who do meet the criteria in the law? And then in those cases, what rights do the patients have if this does happen to someone?”

So, that’s a great question, and I know that Canada’s still working with this too. When we pass the MAID statutes, almost always, there’s a pretty broad scope of conscience-based objections. So, no individual clinician that doesn’t want to participate in MAID needs to participate in MAID, and no entity, so whether hospice or hospital, long-term care facility that doesn’t want to participate in MAID needs to participate in MAID. So, that’s the general rule. Now, if you’re opting out because of a conscience-based objection, the general rule… Now, this again, may vary a little bit from state to state, but the general rule is you don’t even need to refer, because we’re trying to balance the clinician’s right to not participate in something that they feel is immoral versus the patient’s right to access a legal end of life option.

And the way that balance is usually struck is by saying, “You got to transfer the records.” So, the patient will go find a new doctor. You don’t have to help them find that new doctor, but when the patient finds that new doctor, you have to transfer the records. So, it’s all you have to do. Now, some doctors will say, “Even that makes me complicit in MAID, because I’m helping to further the MAID.” But that’s the way we struck the balance. Some states require a little bit more in terms of referring the patient to a place where they can learn about this option like in Vermont. So, Vermont, I guess, would tip the balance a little bit more in favor of the patient when there’s a conscience-based objection, but that’s… And it gets tricky. Not to get into the details, but it gets super tricky because sometimes we have complicated issues where the entity opts out.

So, let’s say it’s a Catholic hospital, they don’t participate. They can prohibit their clinicians for participating, but only when they’re on the clock, or when they’re on the property or when they’re on duty. So, when that physician is on her own time, out in the community, the Catholic hospital can’t prohibit her from providing MAID out there, although some are trying to do that, even though that contravenes the state law. So, we’re having some battles about what the scope of those conscience-based objections are.

That is fascinating. Institutions within themselves having that sort of rule or whatnot, yeah, that’s so fascinating. Someone is asking, “How does one find a MAID doctor in the US, and how expensive is it? What does it usually cost, the whole process or accessing the medication?”

So, in terms of finding the doctor, well, often you would start perhaps with your own doctor. Most people who use MAID in the US, I think as in Canada have cancer. So, that’s by far the most common diagnosis. So, you’re going to have an oncologist and you might start there. But if your current treating physicians are not helpful, then the two main sources would be the ACAMAID, the American Clinicians Academy on Medical Aid in Dying, ACAMAID. And the other would be Compassion & Choices. So, both of those, they would take your zip code and figure out who are MAID clinicians. Generally, people don’t publish those sorts of things, because they don’t want that kind of publicity, but they’ll make a match for you.

In terms of costs, well, firstly, almost everybody who’s ever gotten MAID in the US has had health insurance, and most people who have gotten MAID have already been on hospice, which is a Medicare… Most people over the age of 65 in the United States, their primary form of health insurance is Medicare, and most people go on hospice which is basically a wraparound palliative care benefit offered for people who are terminally ill within six months of death. So, you already have been determined. So, this has already been paid for, right? So, the fact you’ve been diagnosed is terminally ill, the fact that… So, generally, all that’s been paid for. So, the one thing that Medicare prohibits, and this is a federal law in the United States, federal healthcare dollars like Medicare cannot be used to pay for medical aid in dying. So, you would have to pay for the drug itself out of pocket, but it used to be… There was a problem a few years ago, but really, it’s probably… I’m sure it varies tremendously, but I’m just going to say $500.

Thank you. “What is determined as the cause of death in the United States with a MAID death? Will it say MAID specifically or would it be the underlying condition, so for example cancer?

It’s almost always the underlying condition often that’s actually specifically required by the law. So, you’re not even allowed to write MAID, it would be the underlying illness. That’s specifically required by state law and many states, and in the other states, it’s the standard of care.

Thank you.

By the way, just for context, that’s the same thing we do in other end of life care. So, let’s say somebody who’s in the hospital and they had an advanced directive and they had a DNR order or they turned off to the mechanical ventilator, or they disconnected a feeding tube, we don’t write disconnection of the feeding… It’s always the underlying illness. So, this is not unusual. That’s the way in which we designate the cause of death. Even though we obviously took a specific act, and took off the ventilator or stopped… We don’t write stop dialysis, that’s why they died.

Yeah. People are so worried about that, having MAID be the cause of death, when in order to access MAID, in this case, like you said, it’s not the feeding tube or whatnot that is what’s written. So, yeah, definitely, I know important for folks to not have that as the cause of death. So, there are a lot of questions coming in about the fact that it’s being self-administered. And so, asking about sort of complications, is the procedure always successful, or are there cases where there are complications? And if that does happen, what happens in that case?

So, this is another thing that to some extent, in some states, even the publicly reported data from the Department of Health. So, the Department of health every year in most of these states, again, the quality varies, puts out an annual report saying, this is how many people got MAID, this is the demographics, these are their underlying illnesses and things like that. Some of those states report complications. So, Oregon, for example, the complication rate is significant, right? So, it might be 5% to 7%, which is ridiculously high, and that I think is probably a feature of the self-administration. I think the complication rate in Canada is close to zero, A, because it’s IV administration and second, you have a qualified clinician right there. First of all, ingestion, so going through the gut is not the most effective way, it takes longer, might take two hours. Canadian MAID, probably takes 10 minutes from administration to death. So, it’s slower and it’s not quite as effective. Absolutely. That’s a great question.

What the response is, I guess, depends upon what exactly happened, right? So, you might regurgitate the meds, normally, you’d fall asleep and then die later, you might wake back up. And what I don’t know, and I don’t know if this has been carefully studied is how… You asked a question earlier about who’s present, right? Is it a volunteer? Is it a layperson? Is it nobody? I suspect, but I don’t know that I’ve seen this studied, it correlates, right? So, if you have a clinician present, the complication rate is probably lower, because the meds were prepared correctly and they were administered correctly, right? And that may be less likely to be true when it’s just a family member doing it for another family member.

But in any case, one thing you’d want do, and I’m sure this is advised is you’d want to have an advanced directive and you’d want to have a POLST. We have what we call a POLST in the United States, Physician Orders for Life-Sustaining Treatment clarifying that you don’t want to be resuscitated, and you don’t want CPR and you don’t want… That would be important just in case some of these complications do happen.

Definitely.

It’s unfortunate, because you may not be to try again, right? Because you may have injured your capacity, for example, to a degree where you’re not dead, but also you’re not back to baseline where you could just reingest the meds.

Right. Yeah. What you were saying before of folks who would qualify for MAID, But they aren’t physically able to administer those medications. Really, I didn’t think about that before. Okay. So, still some really great ones coming in. Is there any fund that you know of that sort of allows people without financial resources to access MAID or for folks, if it is let’s say $500 or so, folks to be able to sort of have a fund that they can access? Any programs like that that exist, that you’re aware of?

Oh, that’s a great question. I don’t. Again, I would check with the biggest advocacy organizations, but I honestly don’t know if they do that or not. There’s a little risk there because it could appear coercive, that you’re paying for it. But yeah, it’s a great question. That’s one where you got me.

Yeah. It’s interesting. I do wonder if there’s any initiatives out there or if maybe it’s in the works, who knows? But yeah, it would be interesting to look into, for sure. So, when a person is successful in accessing MAID, is the person’s life insurance valid or invalid, how does that affect their insurance?

It doesn’t affect it at all, and that’s for a number of reasons. First of all, you asked an earlier question about what’s the underlying cause of death? The underlying cause of death is the underlying illness, so there’s no suicide. And like I said, it’s specifically legally. This is defined as not being suicide. So, apart from the fact of what goes on the death certificate, separate, in addition to that, legally, dying from MAID is not a suicide. So, you would never trigger any suicide exclusion clause in a life insurance contract. On top of that, at least in the US, life insurance contracts that have suicide exclusion clauses, those are only there for one or two years, meaning it’s only if you committed suicide within a year of buying the policy. So, if you bought the policy five years ago, even if it were suicide, it wouldn’t trigger the exclusion clause, but that doesn’t even matter here because it’s just not suicide. And so, they’re not allowed to, they’re not allowed to deny payment because of MAID. So, that’s one of the things that the statutes do is clarify that protection.

Yep. Yeah. Thank you. And yeah, in Canada, MAID is also not considered death by suicide, so that’s good to know how it works as well in the states. So, what are the barriers to clinician-administered MAID? Are there conscious objectors to the issue and are there folks that are really trying to push for this legislative shift in certain states?

That’s a great question. So, first of all, forget the political part aside, there will be fewer clinicians willing to participate, right? So, you have… Obviously, not all clinicians are even willing to participate with current US MAID. If you move to physician-administered MAID, there might be current MAID prescribers who are like, “I’m fine being a prescriber, but I don’t want to be a physician who actually administers it.” So, that might be a smaller scope of physicians. On the political front, I honestly can’t think of a bill in any state in the last 20 years that anybody even was seeking to allow physician-administered MAID. So, it’s not even part of the… You know what I mean? It’s not on the radar screen like where candidates talking about stuff that’s not even on our scope and that… Yeah, apart from that lawsuit that I mentioned in California, where they’re saying, well, we should be allowed to help the patients who can’t administer, there hasn’t really been a lot of talk about moving from patient self-administration to physician-administration. It just hasn’t been part of the conversation.

Yeah. Fascinating. Okay. Supreme Court justices said no in 1997, so then it was up to the states, is there any possibility of a MAID case going in front of the Supreme court again, similar to how in Canada, Rodriguez lost in the nineties and then Carter was successful in 2015?

Yeah. Well, actually, quick note, because you have the Switzerland talk coming up. Switzerland also requires self-administration. So, that’s one thing Switzerland and United States share is requirement for self-administration, no clinician-administration. So, be sure to ask that question again on February 9th, but no, 0% chance. Here’s why, nobody who supports MAID would bring a case to the US Supreme Court now, because of the current composition of the US Supreme Court. Trump made three appointments to the court, it’s overwhelmingly conservative, and you would not get a different result than you got in 1997. So, I don’t know why, unless it were framed in a special peculiar sort of way, like with these narrower questions like I was saying about the privileges and immunities clause in that Oregon case or the Americans With Disabilities Act question in the California case.

So, it’s not about a general overarching right to MAID, maybe a Supreme Court case on one of those narrower questions, but you’re not going to redo the 1997 until the comp of the court changes.

[crosstalk 00:51:09].

This is a court that is predicted to retract on fundamental cases like Roe versus Wade and Casey, which undergird the right to abortion. So, we’re not in a time where we’re going to expand individual rights in United States, we’re in an era where we’re going to move backward in terms of individual rights in the United States.

Yeah, absolutely. And on that note, someone said, “Can the federal Supreme court strike down state laws on MAID?”

No, because the Supreme court in 1997 said the constitution doesn’t… So, what they were saying is the states can’t criminalize it, because it’s a constitutional right. It’s the same thing as with the abortion, which is you can’t criminalize abortion in the state of Texas, because I have a right to abortion under the federal constitution, and that’s what Roe versus Wade said. In 1997, he said, “You can’t criminalize MAID in the state of New York, because I have a federal constitutional right.” But the absence of a constitutional right doesn’t equate to a prohibition. It’s just the absence of a right. The feds have tried to do that. I suppose, that could happen again. So, in enduring the Bush presidency, they tried to basically say that federal law prohibited MAID.

So, notwithstanding what Oregon was doing, they tried to say no… Because federal law trump state law, right? That’s just the nature of the government, right? And so, federal law prohibits using controlled substances in this way, and therefore, you can’t do what you’re doing in Oregon. The Supreme Court struck that down, right? So, the Supreme court said that the federal government could not prohibit the states from allowing MAID. So, to take your question, yes, perhaps a new… You would have to have the stars lining up on this, but let’s say Trump gets reelected, and the Trump administration says that we’re going to try to do what the Bush administration tried to do, and this time unlike the first time, the Supreme Court might uphold that just to give an example.

Yeah. Oh, man. Okay. Thank you for that.

Just to say, all that is not completely off the universe, the idea that Trump might get reelected, and the idea that that might happen is not crazy. So, it’s just not total fantasy.

Crazier things have happened, for sure. Okay. So, I think we have time for a couple of more questions before we wrap up. So, one of them is, “Does a MAID death at home constitute a coroner’s case and who pronounces the patient dead?”

No, you don’t need… Well, first of all, the main reason is not the only reason, but like I said, 95% of patients who get MAID in the United States are on hospice. So, generally if you die on hospice, it’s an expected death, right? And therefore, there’s no need for a coronial investigation.

That makes sense. Thank you. How proactive is the education in the United States regarding end of life choice and advanced care planning?

That’s a great question. There’s so much happening. There’s so much advanced care planning embedded into hospital systems, embedded into insurance coverage, embedded in a lot of non-profits, but, it doesn’t work all that well, meaning we have an advanced directive completion rate of like 27%. So, there’s a lot happening. There’s a lot of tools, but not a lot of outcomes.

Yeah. That’s interesting too, and it would be interesting to see what those organizations like Compassion & Choices and whatnot, how they’ve really helped sort of expand that education since it seems more like something you would have to seek out instead of something that maybe just you come across on your own, perhaps.

Yeah.

Yeah. Okay. So, one last question, let’s see here. So, we’ve sort of touched on this, but I guess, any final points on maybe what are some key factors holding back some state from legalizing assisted dying, and what are some of the enablers for these state? What would you say?

Yeah, it’s a good question. I guess, it moves a little bit to the political realm from the ethics and policy and legal realm, but the biggest opposition is the Catholic church and disability rights advocates. And frankly, have a lot of money, at least the Catholic church does. So, at some level, it’s not about the facts or making the case effectively, a lot of it, it’s just about money. Unfortunately, that’s the way politics often works. I do think that the data, every year gets stronger and stronger, because we have more and more experience from more and more states. So, the cases just gets overwhelmingly positive, right? That you have a very solid patient safety track record from the existing states.

You also, what you have, what’s very effective is a lot of faces, right? So, a lot more people, meaning legislatures themselves, people in the Senate, people in the House have family members who had bad deaths or family members who even used MAID. And so, people know it, right? They are more familiar with it and they’re more prepared to talk about it. So, I think that really helps. Data is one thing, but narratives, personal stories and narratives is another, and we have a lot more of those. So, in Boston, you have a lot of people going in Massachusetts legislature telling their stories, story after story, after story, and they’re powerful, they’re powerful stories. So, I think that’s a key thing that’s changing.

Mm-hmm (affirmative). Yeah. Normalizing conversations, or even hearing MAID as something that folks talk about. Absolutely. Yeah. Well, thank you so, so much for all of this. I want to read some of the comments that have come in. People have been so grateful and have really loved it. Someone said, “This has been a fabulous and informative session. Wow. Extremely interesting comparison between the US and Canada. I would like to compliment the speaker. I’ve attended lots of Zoom presentations and this talk was so well organized, and I really enjoyed the slideshow as well. What an informative and interesting presentation. So many fantastic observations. Thank you so much.” So, yeah, I want to say the same, thank you so for being here. It’s been really informative. We talk so much about what’s happening in Canada that, yeah, I’ve been really looking forward to this, to learn more about what’s happening in the states. So, thank you so, so much.

Yeah. No, thank you for having me. And thank you to Kelsey and Nicole.

Yeah. Absolutely. And thank you everyone for joining us today. So, as Kelsey said at the beginning, we have one more session, assisted dying in Switzerland, which is going to be also extremely fascinating. So, feel free to register for that, the link should still be in the chat. And I hope you all have a nice rest of your day. Take care.