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Join Thaddeus Mason Pope, an expert in medical law and clinical ethics, as we delve into the complex landscape of medical aid in dying (MAID) legislation. Explore the evolution of MAID legislation over the past three decades, the impact of recent innovations on patient access, and the ethical considerations surrounding end-of-life care.

Thaddeus Mason Pope is a foremost expert in medical law and clinical ethics. He maintains a special focus on patient rights, health care decision-making, and end-of-life options.

He discusses the KevinMD article, “Medical aid in dying: time for evidence-based legislation.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Thaddeus Pope. He is a law professor specializing in medical law and clinical ethics. Today’s KevinMD article is “Medical aid in dying: time for evidence-based legislation.” Thaddeus, welcome to the show.

Thaddeus Mason Pope: Thanks for having me, Kevin.

Kevin Pho: So we’ll talk about your article a little bit, but first off, just briefly share your story and journey.

Thaddeus Mason Pope: Yeah, so I’m a law professor, so I’m not a typical KevinMD author or reader or listener, but I write largely for and to clinicians. And my main goal is to assure value concordant care, especially at the end of life. And what I mean by that is that patients get the care that they want, and also that they avoid the care that they don’t want.

So for example, helping to assure that, A, they complete advance directives, B, that clinicians honor those advance directives. So that’s what I’m working on, is using the law as a tool to help assure value concordant care.

Kevin Pho: So what would you say are the most common questions clinicians ask you regarding end of life issues?

Thaddeus Mason Pope: So things are changing, right? This is a rapidly in flux space. So I’ll give you one, this is a big hot thing right now, including in New Hampshire for example, at Dartmouth.

So there’s a thing called a dementia directive. The American public is very focused on dementia, they’re very afraid, many of them, of living with late stage or advanced dementia. And we now have, in addition to Dartmouth, 15 or 20 other organizations that have developed what are called dementia directives, a specialized advance directive for dementia.

And one of the things that it directs is, the patient would say, when I get to a point where I don’t recognize my friends or family, or I can’t go to the bathroom, or whatever other condition they want to put in there, stop feeding me, right, stop giving me food and fluid by mouth.

And so a very common question I’ve been having a lot of meetings about lately is, are we allowed to honor that kind of advance directive? May we honor it, must we honor it? So that’s something that’s fresh on my mind, because that’s been coming up a lot in the last few months.

Kevin Pho: So in your role as a law professor, do you meet with medical institutions individually and consult, or do you talk to a broader clinician audience to address these issues?

Thaddeus Mason Pope: So I guess I would say it’s the typical levels of interaction. So there’s grand rounds for a specific institution, there’s maybe a private meeting with the ethics committee there, and then of course maybe you go to a professional society meeting. And then of course you publish. So I just had a piece published this week in the Journal of the American Geriatrics Society on that question. So it’s, I guess it’s a multifaceted outreach effort.

Kevin Pho: All right, so let’s talk about your KevinMD article. It’s titled “Medical aid in dying: time for evidence-based legislation.” Now, for those who didn’t get a chance to read your article, just tell my audience about it.

Thaddeus Mason Pope: OK. What I wanted to do in this article was challenge the binary way in which medical aid in dying is often framed. So it’s often framed, do we authorize it, do we not authorize it, right? So it’s framed with just two options. And in fact the range of options is more complex.

So just as a quick recap for listeners, medical aid in dying is when a clinician writes a prescription for lethal medications, and they write it for an adult who has decision-making capacity and who is terminally ill with a six-month or less prognosis. And then the patient might obtain or fill the prescription, and might self ingest those medications to hasten her death.

OK, so 11 states now authorize medical aid in dying. I’m just going to call it MAID. But here’s the point of the article. Most of the remaining states, so more than 20 of the other 40 states, are actively considering legislation right now in February 2024.

And what I was alarmed by is that many of those bills are a straight copy and paste of the original 1994 Oregon Death with Dignity Act, drafted more than 30 years ago. And the reason that’s problematic is because in the last three decades we’ve learned a lot. We’ve learned a lot from the first 15,000 patients to use medical aid in dying in the United States. In fact we’ve learned so much that most of the existing current 11 jurisdictions that authorize MAID have amended their statutes, right? They moved away from the original model, the original Oregon model.

And maybe I’ll just tell you some of those changes. So take Washington and Hawaii, New Mexico. So they allow not only physicians but also APRNs to write these prescriptions, or to first assess the patient and then write the prescription. And that’s because in these big rural states like New Mexico, there are big shortages of physicians in big areas of the state, and so by limiting medical aid in dying to physicians only it really constrained access. And in fact, just for context, APRNs already, in almost all states, engage in a lot of other end of life decisions. They can sign POLST forms, they can sign DNR orders. So it’s not unusual to extend it.

Second example is the traditional requirement, the original requirement was there was a 15-day waiting period. So the patient would have to ask you on day one and then ask you again for MAID on day 16. The problem is, since most patients didn’t even start exploring MAID until very, very late in their illness trajectory, typically cancer, they couldn’t wait 15 days, they’re either going to lose capacity or die in the next 15 days. So now most of the 11 states have either shortened, eliminated, or permit waiver of that waiting period. So if the physician certifies the patient’s not going to last 15 days, then they’re exempt from having to satisfy the 15-day waiting period.

So those are just a couple ways in which we’ve learned a lot and we’ve moved and changed the criteria on which MAID is available. But a lot of the new states are still considering, I guess, the old model.

Kevin Pho: So has Oregon itself amended or updated their original law?

Thaddeus Mason Pope: Yeah, so even Oregon itself. So you think, OK, the original model, the first state in the United States, in fact one of the first jurisdictions on Earth to authorize medical aid in dying, was Oregon. But even Oregon itself, the index state, they’ve shortened the waiting period, or permit waiver of the waiting period.

Another thing that Oregon did is they removed their residency requirement. So originally you could only get medical aid in dying in Oregon if you were an Oregon resident. Well, if you think of the geography of Portland, Portland Oregon, a large part of the metropolitan area is on the north side of the river, and that’s the state of Washington. But they get their health care from Oregon Health Sciences University. So they said, we want medical aid in dying, but we don’t want to have to relocate to Oregon, especially since it’s only 800 yards away. It seems ridiculous. So Oregon said, yeah, you’re right, and so they removed the residency requirement. Vermont also removed its residency requirement.

So yeah, even Oregon has moved to what you might call MAID 2.0. Even they have moved on.

Kevin Pho: So why is this happening? Why are the states considering medical aid in dying going back to what you say MAID 1.0? Why are they not considering these changes?

Thaddeus Mason Pope: Well, there’s probably two reasons. So first of all, the reason they’re considering the bills in the first place is because the American public, 70 to 80 percent, wants to have this option. Most will never use it. It’s worth remembering that of all the people that die in a given state in a given year, less than one half of 1 percent of them die from medical aid in dying, right, even in those states where it’s authorized. So 99.5 percent of all deaths completely unaffected. But people want to have the option, right? It’s not that they’ll use it, they want to have the option.

So that’s why all those bills are out there, including in New Hampshire.

Why are they sticking to the original model? Well, there’s two reasons. One is political, right? So maybe there’s somebody who said, I want to make it extra hard to get, because it makes me feel more comfortable. So if it’s a political compromise, fine, right? If we need to get Senator so and so’s vote by throwing this thing in, we don’t think it’s right, we don’t think it’s evidence-based, we don’t think it’s good for access, we don’t think it’s even necessary for patient safety, but we’ll throw it in because we need his vote, that’s fine.

What I’m a little bit more concerned about is that there hasn’t been a careful investigation of the experience of the other states. And I guess that’s more what I was reacting to.

Kevin Pho: Sure. So the states that currently have legislation, medical aid in dying legislation, are they pretty uniform in terms of all the amendments?

Thaddeus Mason Pope: So that’s a great question. That’s kind of what’s happening right now. For a long time, up until 2019, they were pretty uniform. And then for the last four years things have really started moving apart.

So there’s maybe four big ones. There’s, do you have a residency requirement or do you not have a residency requirement? Do you allow APRNs to prescribe? Some states actually also allow PAs to prescribe. Do you have, what is your waiting period?

And then another big thing along which the states have become more variable is a transparency requirement. So every state makes this opt-in only. So if you’re a clinician you don’t have to participate if you don’t want to. In fact the whole entity could decide, if it’s Catholic affiliated for example, the entire entity could say we’re not going to participate and none of our staff will either.

But the new thing is, fine, we’re not going to change the idea that you can assert a conscience-based objection, but what Colorado, California, and Washington have done is it says, yeah, but you have to be transparent, so patients can make an informed decision about where they’re going to get their health care, what hospice they’re going to use. So now three states have a transparency requirement, the others don’t yet. So, answer to your question, more and more variability over the last four years.

Kevin Pho: So in terms of the professional medical physician organizations, what in general are their stances to this issue?

Thaddeus Mason Pope: Well, that’s all over the map. So a lot of the, again, there’s been a lot of flux here, right? So a lot of the organizations have moved to either a neutral position or a support position, while historically, going back 20 years, they were all in an opposed position. A lot of national societies have moved to neutral, which is, we’re just going to be neutral on it, but they used to be opposed. The AMA and some of the bigger ones, still not super supportive, but a lot of the other organizations have at least moved to a neutral position.

Kevin Pho: So after considering this, what is your proposed path forward? What do you suggest?

Thaddeus Mason Pope: My suggestion is, if you’re going to authorize it, and you’re going to make this option available to the terminally ill patients in your state, then make it accessible, right? So it’s sort of a false promise to legalize an option, or to authorize an end of life option, but then authorize it on terms that make it, from a practical perspective, completely inaccessible to most of the patients that might be interested in using the option.

So that, I guess, is where the article came from, which is, if you’re going to authorize it, authorize it in a way that makes it reasonably and practically accessible.

Kevin Pho: So the original MAID legislation, you’re saying, is certainly less accessible than the various changes and amendments to the original law.

Thaddeus Mason Pope: Right. If it’s only this type of clinician that can do it, if it’s this really long waiting period, if you have to be a resident of the state.

And by the way, since that was the first bill on Earth to be proposed, that wasn’t evidence-based. So they were guessing, like, oh, these would be important safeguards. So I think it’s more relevant to use the models that have evolved based on experience, than use a model that was sort of just a guess as to what might be necessary in terms of balancing access against patient safety. Because it’s always a tradeoff, right? We’re always having to calibrate that balance between access and patient safety. But why not strike the calibration based on the experience from other states that have actually done it?

Kevin Pho: Now, through your lens as a law professor, what do you think is the most likely outcome?

Thaddeus Mason Pope: I think it’s going to continue to be a giant patchwork. So probably in this year, right now, if you add up the 11 states, MAID is now available to 73 million Americans, so it’s about a fifth of the country. Probably several additional states will authorize MAID this year, probably Massachusetts, Maryland, New York, maybe a few other states. So we might probably get to 100 million Americans will have access to MAID. This is what the American public wants.

But the exact, what MAID looks like in New York may not look like MAID in New Jersey. And so I think it’s just going to continue to be a patchwork of, what does the state allow it at all, and secondly, even among the states that do allow it, the exact terms and conditions under which it’s available is going to vary from state to state to state.

Kevin Pho: So we could be in a situation like with a lot of other things related to health care, where there’s going to be variability in terms of access to medical aid in dying.

Thaddeus Mason Pope: Yeah, it’s controversial, right? So the Catholic affiliated institutions, and even Catholic organizations, just think it’s completely immoral. So it’s going to be like perhaps abortion and gender affirming health care, which is, it’s not available at all, or it’s available under very limited conditions in some jurisdictions, and more available in other jurisdictions.

Kevin Pho: It is a political lightning rod, unfortunately. We’re talking to Thaddeus Pope. He is a law professor specializing in medical law and clinical ethics. Today’s KevinMD article is “Medical aid in dying: time for evidence-based legislation.” Thaddeus, let’s end with some of your take-home messages to the KevinMD audience.

Thaddeus Mason Pope: All right, take-home messages. MAID is expanding across the United States. It’s available to 73 million Americans now, probably soon to over 100 million Americans. But it’s expanding not only in terms of where it’s available, but it’s also expanding in terms of under what conditions it’s available to terminally ill patients.

So terminally ill patients should be aware of this option, and clinicians should be prepared to counsel and advise their terminally ill patients about this option.

Kevin Pho: Thaddeus, thank you so much for coming on the show and sharing your time and perspective.

Thaddeus Mason Pope: Thanks for having me.