Today’s podcast may be a stretch for our listeners. Please stick with us. No matter what your position on medical aid in dying (I’m ambivalent) or abortion (I’m pro-choice), this is a bioethics podcast, and I hope that we can all agree that the ethical issues at stake deserve a critical re-think. All three of today’s guests are well established bioethicists.
Let me start by quote/paraphrasing one of today’s guests, Mara Buchbinder, who puts her finger on the issue we talk about today:
“Typically when we think about conscience in medical ethics we think about it in terms of a negative claim of conscience, where a clinician refuses (or objects) to provide care. But what we know from my research and those of others, people also articulate a positive claim of conscience: they feel compelled to provide a service – whether it’s abortion provision or medical aid in dying – because of a deeply held conviction that this is the right thing to do.”
I’ll continue by quoting Lisa Harris, who wrote in the NEJM:
Bioethicists have focused on defining conditions under which conscientious refusals are acceptable but, with rare exceptions, have neglected to make the moral case for protecting the conscientious provision of care. Indeed, there is a real asymmetry between negative duties (to not do something) and positive duties (to do something) and, accordingly, between negative and positive claims of conscience. Violations of negative claims are considered morally worse than violations of positive ones.However, as bioethicist Mark Wicclair argues, the moral-asymmetry thesis does not provide adequate ethical justification for current conscience law, which protects only conscience-based refusals. Moral integrity can be injured as much by not performing an action required by one’s core beliefs as by performing an action that contradicts those beliefs.
Lisa was writing about providing abortion care, but she just as easily could have been writing about providing medical aid in dying in states where it is illegal.
Today we wrestle with this issue of conscientious provision. We start by talking with Robert Brody, an internist who recalls physicians helping patients die during the height of the AIDS epidemic in San Francisco. Robert was first asked by one of his own patients for assistance in dying in 1991, far before aid in dying was legalized in California in 2016. Robert went on to be the founding chair of the board of Compassion and Choices, the major national advocacy organization for medical aid in dying. Today, medical aid in dying is legal in some 10 states, and illegal in others.
Also today, in the wake of the Supreme Court’s recent Dobbs decision, some 13 states ban abortion. To examine how clinicians might act in the face of such bans, we turn to Lori Freedman, who wrote a book about clinicians (primarily Ob-Gyn’s) who work in Catholic Hospitals. She describes the “workarounds” these clinicians used to skirt the rules in order to provide reproductive care for women.
We talk about the parallels between these issues at the beginning and end of life, and areas in which these parallels fall apart. For example, Jack Kevorkian excepted, clinicians have not been prosecuted for providing aid in dying in states where it is illegal. In contrast, there is a justified fear of prosecution of providing abortion care in states where it is illegal.
It took contemplation on a bike ride to put my finger on why I “wrestle” with the notion of conscientious provision. On the one hand, when I hear of Ob-Gyn’s in Catholic Healthcare systems using “workarounds” to provide reproductive care, I’m standing up and cheering on the inside. On the other hand, when I hear of workarounds to assist patients to die, or even euthanize them, I worry that we’ve gone back to a time when the doctor or nurse knows best – and should be morally permitted to do whatever they think is right, according to their conscience. Do we really trust all doctors and nurses so far? Would you, with your parents, trust any doctor or nurse to make such life or death decisions, regardless of the law? There have to be limits to conscientious provision, just as there are limits placed on conscientious objection. In conscientious objection, there are general rules, such as: the patient must be given time to seek a clinician who is willing to provide the treatment; and clinicians can only object to specific treatments under specific circumstances. And yet, I worry about explicitly creating ethical rules for conscientious provision. Ought we, in bioethics, create ethical rules for providing care that is illegal? Who will follow them, and what would be their incentive for doing so? Would such ethical guidelines foster or feed suspicion of the motivations of bioethics?
We could have talked for hours. We may reconvene for another podcast as we see how these issues continue to unfold.
Oh life. It’s bigger. It’s bigger than you and you are not me.
Mara Buchbinder’s book – Scripting Death: Stories of Assisted Dying in America
Lori Freedman’s book (forthcoming) – Bishops and Bodies: Reproductive Care in American Catholic Hospitals
Lisa Harris piece mentioned on podcast
Alta Charo piece mentioned on podcast
Yvonne Lindgren article mentioned on podcast
Art Caplan piece mentioned on podcast
George Annas piece mentioned on podcast
This episode of the GeriPal Podcast is sponsored by UCSF’s Division of Palliative Medicine, an amazing group doing world class palliative care. They are looking for physician faculty to join them in the inpatient and outpatient setting. To learn more about job opportunities, please click here: https://palliativemedicine.ucsf.edu/job-openings
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we’ve got a full house today.
Alex: We do have a full house. Today I’m delighted to welcome to our podcast Robert Brody, who’s an internist at San Francisco General Hospital. He has an interest in hospice and of life care, pain management and medical ethics. He’s the founding chair of the Board of Compassionate Choices and is currently vice chair of the Board of End of Life Choices, California.
I got it the second time. Okay, good. Welcome to the GeriPal podcast, Robert.
Alex: And we are delighted to welcome to the podcast Lori Freedman, who’s associate professor and a medical sociologist at UCSF. And she has a forthcoming book, Bishops and Bodies: Reproductive Care in American Catholic Healthcare Systems, which will come out Spring-ish. Right, Lori?
Alex: Spring-ish. Welcome to the GeriPal podcast, Lori.
Robert: Thank you. Nice to be here.
Alex: And we have me Mara Buchbinder, who is a professor and vice chair of the Department of Social Medicine at UNC Chapel Hill. She’s a medical anthropologist with an interest in culture of end of life care, among other things, and she has a book that is out called Scripting Death: Stories of Assisted Dying in America. Welcome to the GeriPal podcast, Mara.
Mara: Thanks for having me.
Eric: So, this is an interesting podcast, Alex.
Alex: Yes, it might be a stretch for our listeners.
Eric: This is a geriatrics and palliative care podcast and we’re talking about reproductive rights, abortions, looks like we’re talking about medical aid in dying, all encompassing this question of rights of conscious. Before we dive into all of this and how we’re connecting all together, I think somebody has a song request for Alex.
Lori: I think it’s me. Yeah. Alex, would you please play Losing My Religion by R.E.M.?
Alex: Yeah. Love this song. One of the first ones I learned. Here’s a little snippet.
Eric: I could always tell when Alex loves to play a song. You like that one didn’t you, Alex?
Alex: That was a fun one. Yeah, I love that one. I love R.E.M.
Lori: It’s a good song.
Eric: Lori, why’d you pick it?
Lori: Oh, I was trying to think of a song that would have some thematic connection, but I didn’t actually want it to be a literal connection. I don’t think you need to lose your religion to have a good conversation about conscience and the way that intersects with healthcare and law.
Eric: Can I ask you, Lori, how did you get interested in this as a subject around reproductive rights and all the things that we’re going to be talking about today?
Lori: So, I started out, in my sociological training, being interested in abortion care. And I was interested in just, I’d just say how medical care was delivered in that context as normal medical work, but something that is heavily politicized and stigmatized and sort of all the different tensions there. And when I ended up doing my dissertation about how physicians decided when or to include abortion in their practice or not, I ended up talking to some physicians who worked in Catholic hospitals, and they said that when they took that job, they knew that they probably wouldn’t continue to provide abortion after residency once working in the Catholic hospital because it was just pretty well widely known that it wasn’t allowed, but they were surprised to find the way that the restrictions affected various other aspects of OBGYN care.
And that’s where it got really interesting because the US bishops make policies for the hospitals that basically cover the entire institution and say what doctors can’t provide abortion, but also even in a miscarriage, you can’t treat if there’s any sign that there’s still fetal heartbeat, things like that. So, they were finding that their miscarriage management was constrained and sometimes less safe, honestly, because of the restrictions. And then they also found that some of the restrictions on contraception and tubal ligation were not quite allowing the standard of care practice. And that was fascinating to me, so I ended up doing a lot of research with doctors and patients about how Catholic doctrine affected medical practice on an everyday level. And as you… Well, the reason we’re connecting all of this today is there are also directives that relate to end of life care.
Eric: In particular, around medical aid in dying. And Bob, you’ve been, I think it’s safe to say a proponent of medical aid in dying. How did you get interested in this as a subject?
Robert: So when I started at San Francisco General in 1978, I was the naive young faculty member, and there was a task force looking at how dying patients were taken care of in the hospital. So they said, “Join this task force.” And not knowing any better, I said okay. And then there were clearly issues around how we took care of dying patients. And so we had a grant in 1980, right before the first AIDS patients came, to start a hospice unit. So, actually the first hospice unit in the UCSF system was at San Francisco General with this grant that we had for a short period of time. And then when the AIDS epidemic started rolling and getting quite terrible, the city funded a large program to take care of these patients as outpatients hospice program and AIDS program.
And I became the medical director for that program, and so I was watching and learning as the hospital was taken over by AIDS patients and the whole city was consumed by this epidemic. And it became clear that physicians who were taking care of aids, patients were helping their patients die in all kinds of ways. And then actually the first patient who asked me to help her die was in 1991, which was long before the organ law went into place. So, it’s been incremental for quite a long period of time.
Eric: Yeah. What about you, Mara?
Mara: Yeah, so I actually got interested in medical aid in dying by way of abortion research, so it’s kind of fun to be here with Lori.
Eric: You are the link right now. I’m seeing it.
Mara: Yeah. I had done work about 10 years ago, looking at the implementation of an abortion law in North Carolina and how providers were responding and adapting to that. And that got me interested in thinking about other areas of medicine where there’s a real intersection between medicine and the law. And so I decided to look at medical aid in dying. And this was in 2015 when I started to think about this project. And at that time, Vermont was the state with the most recent medical aid in dying law on the books, and so I was really interested in thinking about what happens when laws and policies are new and sort of their practical significance is being worked out on the ground as they’re being implemented. That’s what I had done with my abortion research, and I had also studied newborn screening policies evolving. So, I decided to go to Vermont and try to understand how the law was being implemented, and I did some ethnographic research there over the course of a couple of years, and that led to my book.
So, I interviewed about 145 people in Vermont, doctors, patients, caregivers, legislative stakeholders, policy folks about their experiences with the law and their perspectives on it. And I guess because of the background that I have in the abortion realm as well, I’ve been really interested in thinking about some of the parallels between these practices and also some of the divergences as well.
Eric: Just to start off, just because we’re connecting these two, what are some of the parallels?
Mara: Right. So, I mean, both of these practices are very morally contested. They operate kind of at the margins of mainstream medicine, and they have been siloed in a lot of ways from mainstream medicine. And particularly in California, we’ve seen lots of medical aid in dying practice kind of go out into these freestanding private practices because there are a lot of bureaucratic tensions with hosting these practices within hospital settings. And Lori’s first book really spoke to that quite nicely in the abortion realm. But then I think there are some important differences as well in terms of thinking about the political stakes of the movements that have driven the expansion of medical aid in dying. I think it looks different than the abortion rights movement, and I think that the role of physicians as activists has also kind of evolved a little bit differently as well. I found much more ambivalence in the physicians that I interviewed in my study, even those who were participating as prescribers. There wasn’t necessarily the same commitment to a rights based agenda that you tend to see in abortion.
Alex: Could I follow up on that? This is a key issue, and I want to cite… Here’s this nice article from Rights to Dignity: Drawing Lessons From Aid in Dying and Reproductive Rights by Yvonne Lindgren, who I don’t know. But Yvonne writes that the history of… From the historical perspective, we’ve seen abortion and medical aid in dying move in opposite directions in that… And I’d like your reflections on this, and probably go to you first, Robert. In terms of medical aid in dying, it started off… I grew up in Michigan during the era of Jack Kevorkian, and it started off as a rights-based argument, right to die, right to die. And then we had Timothy Quill, New England Journal paper and a big movement and shift towards death with dignity.
And the argument was framed more as a healthcare choice made by individuals in conjunction with their clinicians. And in the contrast, in abortion, we saw it initially framed as a choice in Roe versus Wade and that it’s moved instead towards a constitutional right, a constitutional provision, which of course has been undermined now in Dobbs, the Dobbs decision. Robert, I just want to go to you first with a sort of reflection on your sense of these sort of overlying big picture trends in the way that these issues have been framed and argued over time, of course, from your perspective, medical aid in dying.
Robert: Yeah. Well, but I think this reflects politics rather than the basic nature of these issues. These are both issues, I think, which reflect changes in ethics and morality in our culture. And I’m sitting here with a sociologist and anthropologist, and I’m daring to say this, but the diminution of the role of authority and the elevation of the role of the individual over time, I think we’ve seen that trend in ethics and in society. So religion, much less. Authority figures, much less. And an emphasis on the role of the individual and the possibility of the individual actually choosing for themselves, both at the beginning of life and at the end of life, I think that’s what connects these issues, and they’re related more to that broader movement movement in our society and in our medical culture.
Alex: Lori, I see you nodding your head. Reflections from you in this historical perspective?
Lori: I mean, I think that’s why I find the Catholic hospital so fascinating, because they’re sort of clinging to the institutional authority sort of framework. I mean, it’s built deeply in within the ownership of the hospital and within the system you’re in. You must lower the policies of this national body of bishops, and the level of individual choices is very low and patients don’t necessarily have a very high… Well, actually we’ve studied this and patients don’t have a very good grasp on the policies or how they might affect their care, so they’re not coming in with a lot of knowledge and they’re facing these constraints in real time and having to adapt to this sort of top down approach. So, I think that’s both fascinating and deeply concerning, that there’s still this kind of top-down authority in what is about a sixth of our healthcare system.
Lori: Yeah, one in six hospital beds are in a Catholic hospital.
Eric: Wow. I did not know that. How did I not know that?
Lori: Very few people seem to know that. Yeah, and it’s also not always clear which hospital is Catholic. I mean, they don’t always have a Catholic sounding name. They’ve often been bought by a Catholic system, but there’s been a fairly concerted effort to have more secular branding so hospitals don’t necessarily have any sign of being Catholic. So, it’s just a real… And in five states, over 40% of the beds are in Catholic hospitals.
Lori: So, it just kind of depends on where you are. You have a high chance of getting care in a building that has to follow the policy of the US bishops.
Alex: So speaking of a statewide variation, let’s just take a check of the temperature. At the time that we’re… What’s going on right now? So, we’re going to move to right now. At the time we’re recording this podcast in early December, I think, correct me if I’m wrong, seven states have banned abortion, with fewer no exceptions. Does that sound about right?
Lori: I have 13.
Alex: Oh, 13. Okay, well-
Lori: Mara, what do you have?
Mara: Yeah, I thought it was higher than seven, but I don’t… Yeah, 13 sounds like it could be right.
Alex: It’s shifting all the time, but it’s-
Mara: Yeah, I think it’s how you read it too.
Lori: How you count.
Mara: There’s like sometimes there’s up to six weeks, but then most women may not know they’re pregnant before then, so some people consider it very virtually banned in some of those settings. So, maybe it’s what you’re saying. Seven is an outright, and maybe about 13 are functionally we cannot get abortions.
Alex: And in terms of legalized medical aid in dying, is it 10 states in Washington DC? Does that sound about right?
Alex: Yeah, okay. So, in 19… So, Art Kaplan wrote this wonderful piece in the Hasting Center report. It’s published this summer. And he starts by talking about this 1995 survey in the New England Journal of Medicine, the role of critical care nurses in euthanasia assisted suicide by David Ash. And he surveyed all the nurses who subscribed to nursing, I think it was like Nursing Magazine or something, or journal. And of the 1100 or so nurses who responded, some high proportion had engaged in medical aid in dying. I think it was 16%, had engaged in euthanasia, which is provision of medications by the physician or by the nurse to assist the patient to die, or medical aid in dying. And Bob mentioned… And Robert mentioned at the beginning of this podcast, by way of introduction, that we know that physicians have been helping patients and we know that nurses have been helping patients to die for some time, much earlier than… prior to becoming legal in California and other states.
One of the key points in this Art Kaplan article is that very few people outside of Jack Kevorkian have been convicted of murder or some other serious felony offense. And he writes, and I’d like your thoughts on this, that, “No doubt, the analogy to the current situation of post Roe, in the wake of Dobbs, has some important differences, but what is crucially important is to recognize that healthcare and society will strive to find a way to undercut crude bands inconsistent with perceived medical need and professional duty, and society will find it extraordinarily difficult to prosecute in jail healthcare professionals who support one another, who act out of compassion and whom society holds in high regard.”
I’d like your thoughts, as we’re talking about rights of conscious, on how this applies in the setting of medical aid in dying and what lessons we can learn from physicians and nurses who are providing medical aid in dying and apply to clinicians who may feel compelled to provide abortion other reproductive healthcare in states where it is banned. By way of… Sort of starting this off, it’d be great if one of you would come up and help educate our audience in some lay terms, what are rights of consciousness? What are we talking about here? What does this ethical precept mean?
Robert: I wish I knew what rights of consciousness means. I don’t see it-
Alex: Sorry. Conscientious provision. Sorry. I’m getting my terms mixed up. It’s my post-COVID brain.
Robert: I don’t see that as a reasonable term at all. I think when professionals act in the interests of their patients, they are acting under their professional duty to patients, period. There’s nothing special about it. I don’t think it needs a special term particularly.
Alex: So, you view this as a central component of the doctor’s-
Robert: Professional relationship.
Alex: … professional relationship to the patient?
Robert: Yes, I do.
Alex: And in what sense would you frame that in… Would you frame that in ethical terms?
Robert: Not true? What you mean by that?
Eric: I guess my question is, when I think about this, is there are plenty of situations where from an ethics team member, I hear from providers that we should or should not be doing something and they feel it’s morally incorrect, but actually thinking through the ethical problems and our own kind of local VA policies, which is where I’m on the ethics team, I feel like the provider is wrong and the ethics team kind of agrees. So, I do think putting some type of box around what we’re talking about here… Just because somebody feels like, “Oh, I think this is… Personally, I think this thing is wrong or right to do in this situation,” doesn’t automatically mean, as a provider, you should actually be doing X or Y or not doing X or Y. So, how should we think about that?
Robert: And I’m not going to what the individual provider believes is right or wrong. I think that the individual provider needs to have some ethical basis for that feeling. So, it’s within the constraints of normal ethical behavior that can, and does at times, conflict with hospital policies, whether it’s Catholic or the VA. Or with law.
Robert: What does one do in that situation? It is still ethical, professionally ethical, but it is illegal or contrary to policy. That’s what we’re talking about, isn’t it? I hope.
Alex: Mara, I see you want to jump in here? Please jump in.
Mara: I do. Well, I thought maybe I could take a step back for a second just to talk about the way that conscience kind of figures into these discussions. Typically when we think about conscience in medical ethics, it often comes up in terms of thinking about refusal or a negative kind of claim where a healthcare provider might not want to participate in a particular act for moral or religious reasons.
Eric: Like medical aid in dying, right?
Eric: So in California, medical aid in dying law is you have the right to conscientious objection. You can say, even if your institution allows it, you can say, “I’m going to object. This is not something I want to participate in.” Is that right?
Mara: Right. That’s right.But what we know from some of the research that’s been done by myself and others is that oftentimes, people also articulate a positive claim of conscience when it comes to participating in both abortion provision and medical aid in dying provision, which is to say that they are compelled to provide this service because of those same kinds of conscience based reasons. There’s a deeply held conviction that providing this service is the right thing to do. And Alta Charo has written about this, Lisa Harris has written about this, lots of folks have written about it, and I saw it in my medical aid in dying research as well, that even people who might sort of have some reservations about medical aid in dying might still participate in helping a patient get access to that service because of some kind of sense that there was an obligation to this patient to help them get what they wanted.
So anyway, I think the question is that we’re all kind of building toward is what is one to do when the law prevents you or puts up a barrier from acting in line with your conscience? And there’s been some interesting discussions about this lately. Matt [inaudible] had a perspectives piece in the New England Journal about whether civil disobedience is appropriate in these kinds of settings. But I do think that there’s a real difference, in terms of the legal and policy context, between abortion and medical aid in dying when we’re talking about breaking the law because the legal stakes are very, very different.
Eric: How so?
Mara: Well, the laws that are being written now in some of these states with abortion bans and severe restrictions offer a criminal punishment for physicians that are very, very severe for participating. And that’s not the case with medical aid in dying because we’re medical aid in dying is not legal, there’s no law kind of saying that it can’t be done. So there might be restrictions on assisting a suicide, but they’re not politicized in the same way that these abortion laws are being written. And so we know some of the early research coming out of Texas with SB8, physicians are very scared of providing what is sometimes seen as essential medical care, like miscarriage management, because of the way that those laws are written.
Lori: Absolutely. I think it’s hard to sort of parallel the chilling effect that we’re seeing in abortion. I think that maybe sit apart. I mean, in the cases Mara was referring to in Texas, there are stories of doctors doing a procedure that is more dangerous in order to not look like they’re doing an abortion or delaying care in a dangerous way, even though it would qualify as an exception. So, the chilling effect of the law is intense because of the politicization and scrutiny. And I don’t know myself of a parallel in the aid in dying world. Do any of you?
Robert: So, that’s an interesting perspective. If you… I’ve heard physicians say this. They say if they do get caught or there’s an aggressive prosecutor in the county where they happen to live, then what they’re facing is manslaughter or murder charges.
Alex: You’re talking about made medical aid in dying here.
Robert: Aid in dying, absolutely. So, I think the difference is that you have providers who are used to being very comfortable providing a service, which all of a sudden they cannot, and they’re feeling different from the situation where providers have not ever been comfortable and are not now comfortable. And so the chilling feels different. One, you’re chronically chilled, and the other is you’re acutely chilled if you’re,
Mara: But also, it’s a little bit about the murkiness of the line to me. And tell me if I’m wrong, but I sort of feel like you’re either providing medical aid in dying or you are not. You’re either giving that prescription or you are not. And in these cases of obstetric complications with doctors literally not doing what was standard practice last month or before the ban, and not knowing whether they would be able to defend themselves for helping a woman come through a miscarriage by using Pitocin for example. So, this kind of murkiness and gray areas around, which drugs can I use, and which will be perceived as facilitating the end of this pregnancy?
Robert: Actually in the cases of end life care that have come to litigation, not litigation, but actually charges, it’s often murky in the sense that the provider argues that they’re trying to relieve suffering. These medications are not to end the patient’s life, but to relieve their suffering. So, the murkiness is there a as well sometimes.
Mara: So, in the sense that they were not prescribing… They’re defending themselves to saying that the intention was not to have an aid in dying situation. Their intention was just pain relief or whatever suffering there was?
Eric: Well, it’s interesting, Bob, because… Yeah, because I’m going to follow up on that is… I can see the murkiness is around higher and higher doses of opiates, which we generally don’t think of medical aid in dying, right? Because when I think about medical aid in dying, the doses are… If your intent is medical aid in dying, you are not using anywhere near… You’re using grams of drugs that we’re dosing usually in milligrams. There, it’s like a… To me, I can clearly see that differentiation just based on what did you prescribe?
Eric: Is the argument in these cases, “I’m prescribing these grams of doses. My intent is not to end their life but to relieve suffering?” And is that what we’re seeing with this, or is it really the murky side?
Robert: Well in those states where it’s legal-
Robert: … the cocktail that has been developed by the clinicians who are involved with this, as you say, in order to predictably end somebody’s life in a very short period of time does involve these grams and grams. But in the states where it’s illegal, I don’t think that that’s happening in the same way.
Robert: What’s happening is more the opiate overdose, if it’s happening at all. So, the murkiness is more there. So, there’s some murkiness.
Eric: And can I also take a back a step? Is that okay Alex?
Alex: Yeah, yeah, go for it.
Eric: I’ve never thought of conscientious provision. I’ve always thought about conscientious objective. I know, Robert, maybe we shouldn’t be using those terms, but from my head, it’s interesting because in California, clearly delineates, and we got laws that say there is this part where you can use conscientious objection. Is that leap to conscientious provision a given? Is that also enshrined? How do we think about conscientious provision?
Alex: Mara, maybe coming back to you if you have thoughts on this.
Mara: Well, I mean, we don’t have laws that protect the conscientious provision of these contested services, so I think that’s part of what scholars that have tried to draw attention to conscientious provision of care have been trying to point out that inconsistency, that we have a lot of protections for those who want to opt out, but we don’t have the same kind of legal protections for those that want to opt in.
Alex: Lori, I wonder if I could go back to you and ask for examples of clinicians who are working within Catholic healthcare systems who felt obligated to provide care, though it was not permissible by the dictates of the system within which they worked. Any sort of concrete examples that you could share with our listeners?
Lori: Sure. I mean, that’s a lot of what I write about because many of the doctors I spoke with, they were really interested in avoiding harm. They really wanted to… They could see how the directive, if followed to the letter, would be harmful, and so they would do a variety of things. I call them workarounds, but that’s kind of a really catchall term, but basically to try to be as close to the standard of care as possible. So in the case of let’s say a woman is actively miscarrying, but there are still feel heart tones, but she’s uncomfortable and she experiencing pain, bleeding, it’s been going on for a long time, she’s ready to be done, in a non-Catholic hospital, you could just say, “Okay, this is definitely inevitable. We cannot save this pregnancy. If you’re done, we can offer you medication or procedure.” And so she gets to choose when. But in a Catholic hospital, you don’t get to choose when.
So, a doctor might exaggerate her symptoms. They might say, “Oh, that there’s some uterine tenderness.” As one person told me, they claim a certain amount of uterine tenderness and their concerns about infection and they can appeal to the ethics committee, “I need to go ahead, and in order for her not to become sick and die, I need to do this.” And there was great variation. Some doctors said, “Oh, I could do that.” And then some doctors said, “No, I could never do that. I have to show that the fever is 105 before the ethics committee will let me intervene.”
So, it was great local variation, the cultural geographic, but they’re doing things to try to make it work. And some doctors would do things like… Normally, I would just meet my patient at the hospital if she called me concerned about miscarriage. Now, I ask a lot of questions and send her to a non-Catholic hospital and say, “Sorry, I’m going to have to turn you over to that care somewhere else now cause I’m concerned you’re going to be in one of these limbo situations. So, either avoiding getting into that situation the first place or exaggerating symptoms. Those are some examples that I saw.
Alex: And Mara, from your research, any similar parallels and examples of workarounds in medical aid in dying?
Mara: Well, I mean I was really focused on people that were working within the legal structure, right? So, I was following physicians that were providing medical aid in dying legally. So, workarounds didn’t come up in quite the same way. I mean, there were some similar kinds of challenges. For example, one physician that I interviewed with medical aid in dying, in the US everywhere except Montana, you need to have the diagnosis and prognosis confirmed by a second physician. And so there was one patient for whom a second physician denied the or disagreed with the six month prognosis, right? So, there’s things that can kind of crop up that way where then you might need to look for another physician, but it’s really… Thinking about the situation that Lori is working or was working in is quite different from the kinds of examples that were coming up in my research.
Alex: And Robert, how about-
Robert: Can give you an example? In the days before the currently used cocktail of the grams of medication, as Eric noted, in the days when we were using Seconol for aid in dying, the physician would say, “You’re having trouble sleeping. Here’s a prescription for Seconol for sleep. Save them up.” And a three month supply would be sufficient. That was a workaround that people used at that time. Now, of course, Seconol is horrendously expensive and not readily available at all, so that workaround has gone away, but that was an example.
Alex: And as we’re listening to these, I’m interested in how our readers are feeling as they’re listening to these. I can imagine two different kinds of ends of reactions. One is… Well first of all, everybody probably is thinking, oh, compassion for doctors, nurses who are struggling under difficult circumstances to provide care that, as Robert said, they feel they’re obligated to provide to the patient out of a moral sense of obligation that this is the right sort of care for the patient in front of me. And they’re working within a system where that’s not allowed, not permitted. And I also wonder if people are feeling uncomfortable about this in the same way that we might say we feel uncomfortable about say slow codes where I feel that this patient is full code and I’ve had this conversation with them many times, they insist on being full code, but I just feel like this is futile. This is going to be harmful to them and their family at the end of life. This is going to be traumatic for the residents who are involved, who are coding this patient for half hour.
We’re going to make this a slow code. I’ve been much written about the dangers of slow code, the ethics and ethical concerns about slow codes. Responses from you all about how you feel from an ethical standpoint about these workarounds, understanding there may be considerable ambivalence as sort of how I feel about it?
Robert: The issue with slow codes is that they go against the patient’s wishes, and that’s not what we’re talking about here. So, the analogy, I think, is not a great one. And I see this not as-
Alex: Okay, here’s a different… Let me come back at with a different analogy. You have right… Jack Kevorkian was the extreme, right?
Robert: He lost a lot of style points.
Alex: Yes, exactly. This sense of cavalier medicine, doctor can do what they want as long as they believe that it’s in the best interest of their patients, should have some constraints around it. And how far are we willing to allow doctors to operate with these workarounds, whether that’s in medical aid in dying and whether that’s in provision of reproductive healthcare to women in states where abortion is banned?
Eric: And I’ll give you another example. So, imagine you’re a doctor and you feel like patients with dementia should have the ability to use medical aid in dying or euthanasia, and I feel strongly about that. So whether or not, earlier on in the course of dementia, giving the people that right, or making sure that their decision a couple years ago is done when they no longer have capacity, so really pushing for euthanasia in those individuals, which right now, is against the law in every state, and federal laws against that too for VA providers. How much should individual providers be allowed to… should we be… Not be allowed, because they’re not allowed, that we say that that is ethically permissible?
Mara: I mean ethics and the law don’t always align neatly, so there may be cases when it seems like such a workaround is ethical even though it’s not legally permitted. And I think that’s kind of hard to answer in a general global kind of way. I think it depends a lot on the case and the circumstance. I think one really interesting and relevant example of this with medical aid in dying is the self ingestion requirement, which is designed to ensure that the patient is taking the medication voluntarily but then excludes people who have swallowing difficulties and who have various other kinds of disabilities that prevent them from taking the medication into their hands and swallowing it. And so there have been some workarounds there with inserting it rectally and other kinds of things. And so I think, I guess my answer is, it really depends.
Lori: Yeah, I don’t… Actually, I don’t know. I’m going to pass on this one.
Alex: Okay, fair enough. Robert?
Robert: Can I jump in here?
Robert: I think the Eric’s question is a great one because the ethics of end of life care choice for demented patients is still a very hot topic and unresolved, even… I was speaking to a Dutch physician a while ago, and even in the Netherlands, there’s discomfort with that, so it’s a great point. And the question with dementia is when. Okay? It’s not just losing capacity, it’s when. If you were going to allow this, when would that happen? But I see this as a professional obligation, keeping your eye on the patient and the patient’s desires, especially if the patient has the capacity to make that desire known, and fulfilling that patient-centric care, if you will, is what we need to focus on, and this is part of it. And in the situations where policy and law obstruct patient-centric care, what do we do? We do what we can. We do workarounds. We do everything that we can to stay out of jail and to help the patient.
Mara: One of the things I thought was sort of interesting talking to people about workarounds in Catholic hospitals was how they would kind of normalize them to some extent because there’s so many workarounds in medicine in general, and they would sort of… It became something similar. This is how we get this eligibility for this patient in this way, and this is how we just get the right to do the miscarriage management and that way, and it’s all kind of this game we play. And so anyway, I think it’s just sort of gets strangely normalized. And now with the law change on abortion, I think it’s probably less so because the consequences are so extreme.
Eric: So, that’s the interesting thing about workarounds. It’s a way to skirt around, not directly confront the issue, but to skirt around the issue, and in some ways, cover yourself also both legally, potentially ethically because there’s a lot of questions around, even when we think about intent, do we really know what our true intentions are? Yeah. I wish we had another hour to discuss this because I am particularly interested in… Again, I’ve never really given much thought to this using our conscious to provide care versus not provide care. And again, for me, my worry is the provision against is conscientious objection is you can find another provider. Conscientious provision is, I’m just going to do it anyways. And my worry is what’s the oversight for that provider? Because what if they’re thinking about this wrong? And where do societal norms come into play with this too versus the idea of this one person’s morality?
Robert: In Lori’s case, with the different ethics committees in different hospitals, one would have to question their ethics when they require a fever of 105.
Lori: Yeah. And to that point, I think what we’re talking about often is within the standard of care, but there’s a law or an institutional policy limiting it.
Lori: I mean, in my case. And so with medical aid in dying, we’re kind of… Yeah that’s not quite-
Eric: It’s hard because that’s where it kind of the similarities break in a way. Because in one way is the standard of care very much… If you look at from AMA and everybody else, people should have the right to reproductive choices and healthcare, and there are limitations based on state or by, I guess, hospital too.
Alex: Yeah. George Janis wrote this article in a law review. This is, I think, in the nineties. “Making decisions at the beginning and end of life can be life defining, and individuals should have great discretion in such matters. Beginnings and endings are not the same, however, and its constitutional rights applicable to decisions making about reproduction are not likely to be easily transposed to decisions individuals make at or near the end of their lives.” We’re running out of time, so we got to get to the song. Mara, last word. You get the privilege.
Mara: Well, I was just going to say really quickly that conscientious provision of care can happen within the limits of the law in addition to outside the law, and I think that’s important to keep in mind in this discussion as well.
Alex: All right.
Eric: Can you just… Wait, wait. I know we’re out of time out. Can you describe what you mean by that, especially when we’re talking about reproductive rights?
Mara: Sure. So some people provide abortion or medical aid in dying in a legal way, but they’re compelled by their conscience to do so. So, it’s not something that only operates in a setting in which one is breaking the law or going outside of the law.
Eric: Okay. Again, I’d love another hour. I think we’re going to have to all of you back.
Alex: This is a great.
Eric: But Alex, I know you want to get to the song.
Alex: A little more Losing My Religion.
Eric: Well, I want to thank all of you for joining us today, Mara, Lori, and Robert, really big, big thank you.
Mara: Thanks for having us.
Lori: Thank you.
Eric: And to all of our listeners, thanks for joining this GeriPal podcast. I know we didn’t have a clear “this is what you should do,” but this is why I love ethics…it brings up often more questions than it answers. So yeah, maybe we’ll talk more in the future about this.