The Interior Experience of Prescribing Medical Aid in Dying: Carly Zapata and Dani Chammas

Eric 00:16

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:19

This is Alex Smith.

Eric 00:20

And Alex, today’s topic, it’s going to be one we get up probably a couple emails about.

Alex 00:25

We just got one this morning from our 400th podcast about this. We always get emails when we address this topic.

Eric 00:30

We’re going to be talking about the interior experience of prescribing medical aid and dying. What’s it like for a healthcare provider actually being part of that process? And who do we have to share this discussion with today?

Alex 00:42

We’re delighted to welcome Back to guest Dr. Carly Zapata, who’s a palliative care doctor, practices inpatient and outpatient palliative care, and is director of the palliative care Fellowship at UCSF. Carly, welcome to GeriPal.

Carly 00:56

Glad to be here.

Alex 00:57

And we’re delighted to welcome back frequent guest Dani Chammas, who’s a psychiatrist palliative care doctor. She practices outpatient palliative care at UCSF’s cancer center, and she writes frequently about psychological dimensions of life limiting illness, most recently in the New England Journal of Medicine essay titled Where Do I Put This?

Eric 01:17

And we will have links to that and our other podcast with Dani. Dani, welcome.

Dani 01:23

Thank you. Glad to be back, Alex.

Eric 01:26

I’m a little bit nervous because every time we have Dani on, she quizzes us.

Alex 01:29

Yeah, there could be a quiz today.

Dani 01:34

I plan on it. [laughter]

Alex 01:35

Oh, no.

Eric 01:38

Okay, before Dani starts quizzing us, who has the song request for Alex? Carly?

Alex 01:44

Carly.

Carly 01:46

We had a unanimous, you can say that about two people, a unanimous request for the same song.

Eric 01:52

What song is it?

Carly 01:54

The song is I Will Follow You into the Dark by Death Cab for Cutie, which seems like a throwback to perhaps Dani and my generation of pop culture music.

Eric 02:05

Why did you choose this song?

Carly 02:08

Well, in full disclosure, we were talking about how this was actually maybe my, like, fifth or sixth choice because 400 songs and the other ones had been chosen already, given the topic of this podcast. And so this was one song in the long list of the songs that are about, about love and relationships and mortality and as Dani pointed out, nicely, about accompaniment, which really all of those themes are a huge part of, I think, the decision to participate in MAID, or at least to consider it for those of us for whom this topic comes up.

Alex 02:55

(singing)

Eric 03:48

That was lovely. Very apropos song for this discussion. Now, we’ve had many discussion about medical aid and dying, and I know that it’s a polarizing topic. You have a lot of people who are very anti and a lot of people who are very pro. Today we’re not going to be talking about that.

Alex 04:09

Right. Today we’re going to be talking to two people who prescribe MAID and about their interior experiences. One of the reasons I wanted to do this, it actually came up when I was reading one of the My co, like Greenwall Faculty Scholars Fellows, is an abortion provider and writes about her interior experience as an abortion provider. And she coined a term for this and she calls it danger talk. Like most people feel like you gotta be all the way one way or the other way, and it’s a false dichotomy. You’re either entirely pro or entirely against.

That’s the email we got this morning from people who were entirely against. And that doesn’t leave room. It like silences people who are feeling like moral ambiguity or moral ambivalence. And so we wanted to give a space on this podcast some room for that to breathe. And we were fortunate to be joined by two wonderful guests who are willing

Eric 05:03

to talk about it. So I’m just going to start off because Alex mentioned your recent article in the New England Journal of Medicine, Dani, now, you’ve published a lot in the New England Journal of jama, but can you just, in a nutshell, describe what you wrote about in your New England Journal piece?

Dani 05:18

Yeah, it’s a narrative piece about a patient of mine who I knew quite well, working with her for years, who died with the assistance of MAID. And I was present at the bedside in her home with her family.

Eric 05:31

And MAID is medical aid in dying physician assisted death, depending Greg, who you talk to. Different terminology. Is that right?

Dani 05:39

Yes. Yeah. And if I’m honest with you, it was really, for me an article about my grief and about not knowing where to put that grief. And MAID was just a part of the story. But what happened is I ended up getting a lot of emails from People who were so intrigued by the MAID side, and they wanted to know my stance on MAID and what I think about MAID. And to both of your points. You know, we talk a lot about patients having ambivalence, but it’s not reserved for patients.

For many of us, not all of us, but many of us, that maturing can feel very murky or gray, driven by these coexisting motivational systems within ourselves. So, yeah, and I agree, we’re not here to turn gray into black or white. Those arguments already exist out there in the world. I think today we’re going to set down that need to get to right answers and just remember the importance of asking the right questions.

Eric 06:37

And are you a prescriber of. Can I ask that? Dani, are you a prescriber of medically and dying?

Dani 06:42

Yes.

Eric 06:42

So is it a black and white decision for you? Like, do you or do you have some ambivalence over it?

Dani 06:48

Um, well, we can get into this, but I. I truly believe that what presents as a request for hastened death is phenomenologically a lot of different things. So I feel comfortable prescribing in the cases in which I prescribe, and that does not include every case where somebody might ask. Um, and we can get more into that. So I have ambivalence about its role in our field as a large. But I’ve structured my practice to feel comfortable for myself.

Eric 07:21

Carly, how about you?

Carly 07:23

I also prescribe medical aid and dying. And I think in our UCSF clinical practices, similar to other topics we were just talking about, physicians can opt in or out or somewhere in the middle. And so there’s a pretty broad spectrum of people who don’t opt participated at all. People who are prescribed for their own patients and for other people’s patients, people who will prescribe only for their own longitudinal patients, and then people who will consult but not prescribe. And so there’s a pretty wide spectrum. And I will be totally honest, and I wonder if this is true for you too, Dani, but I actually don’t know what anyone else’s individual choice is around their participation.

And they ask us about it every year, which implies that people have changed their minds over time, and it’s kind of worth checking in each time. And I would say something similar to Dani, which is that I am on the side of the spectrum where mostly I’m prescribing for my own longitudinal patients, and occasionally I am doing that for other people’s patients if that physician only consults or doesn’t participate at all. Or is a patient of a nurse practitioner, since nurse practitioners aren’t allowed to prescribe. And similarly, it really depends on the patient, on the context, and sometimes the legal kind of benchmarks of that make that determination for me. But it’s really where I can and it’s the question of whether I should that is sometimes the source of ambivalence.

Eric 08:54

How long have you been a MAID prescriber, Carly?

Carly 08:58

MAID was legalized in California when I was a fellow. And so I got a year of just watching people figure out their stance was. And when our institution didn’t really have a policy about that. But as of 2017, when I finished fellowship, you know, essentially since then, although the frequency with which that came up is much more now compared to 20 where public awareness was much lower, the institutional infrastructure was non existent. And so it’s been about nine years, but most of the prescribing has probably happened in the last five or six.

Eric 09:32

Has your thoughts on this ever wavered or changed over that time?

Carly 09:38

I don’t necessarily think that my philosophical framework around support for the practice in theory, like from a moral and ethical, from a moral and ethical basis has changed over that time. And there have been cases where I really felt a lot of uncertainty around what felt comfortable and what was kind of the right thing to do. And that is a pretty small minority that I would say over those 9/5 or 6 years, the overwhelmingly the overwhelming majority of those cases have kind of affirmed my support for that. That in most cases it’s pretty clear when people qualify. They’re my longitudinal patients.

And so the consistency of that request and understanding their desire for it doesn’t include a lot of ambiguity. And I see the way that it changes their ability to live fully until they’re actually dying. It changes their ability to consider how to spend their time because all of their psychological space isn’t occupied by fear of not having control of extreme suffering. The other things that having that as an option provides to people. And so 99% of the time that is the experience.

And I mostly find that to be affirming both practically and also in the way that it’s such an intimate conversation that sometimes it’s a really deep and important sense of connection, both in the content of those conversations, in the gratitude that people express that you would do this. They really view that as for them, not to them. And sometimes that’s a really important source of, of relationship building.

Dani 11:24

I mean, to give a different perspective, I, I think I mostly agree with you, Carly. When people end up proceeding It’s. It’s usually at a place where things feel settled with me if I’ve signed on. But when people just bring up the topic of MAID, I don’t think 99% of the time, for me, it feels like ending up there feels comfortable because each case is so unique and each wish to die is representing something so different. And sometimes, you know, the legality, the morality, the ethics, they don’t always align, and that can be hard. So there’s. I think there’s a distinction to be made of people who bring up this wish and then people who sort of authentically end up feeling that this is in line with what they want.

Eric 12:14

Can you tell me more about where the legality, morality, and ethics don’t align? How, like, how do you distinguish those three?

Dani 12:24

Well, legality. Legality is easier for those of you who work at the va, but legality,

Eric 12:31

the va, you can’t be a prescriber in California. You can, and there’s very. It’s prescriptive of who, who can get it and what the process looks like. Right.

Dani 12:42

Yeah, it. It puts the borders of what is permitted, what’s required, what’s prohibitive. It theoretically is our most straightforward bucket. But if I’m honest, you know, have you ever felt uncertain about a prognosis at the time?

Alex 12:56

Oh, all the time.

Carly 12:57

Or someone’s waxing and waning decision making capacity.

Dani 13:00

Yeah. Or in our law in California, it stipulates that a person has to have capacity, which is one assessment, but that even if they do have capacity, they need to have their judgment not be impaired by a mental health condition, which, my friends, is an incredibly subjective assessment to be making. So legality, probably the most straightforward of the three lenses, but by no means straightforward.

Eric 13:23

Yeah, and we won’t go into the topic, but encourage our listeners and readers. We did a podcast about using vsat, voluntary cessation, eating, drinking as a method to get to medical aid and dying with Thaddeus Pope.

Alex 13:36

Yeah. Another podcast that we’ll link to is our comparison of what’s happening in California with what’s happening in Canada. And we think it was called what’s up with MAID in Canada, something like that. Which in both California and Canada legalized medical aid and dying around the same time, 2016. Our. The sizes are similar in terms of population, and yet in California, the number of people per year who utilize MAID has been very stable, between 800 and a thousand somewhere in there, whereas in Canada, it’s risen year on year till it’s over 20,000.

Eric 14:12

And was that 1 in 10 deaths. I think there was Atlantic article.

Alex 14:16

Yeah, I don’t think.01. I don’t know if it’s 1 in 10, but it was pretty high proportion. And most medical aid and dying Canada is euthanasia and it is allowed for people who do not have terminal illness. But what. But one thing I wanted to point out is that Carly sent us this interesting survey that explored like 10 different hypothetical reasons for those differences between Canada and California. And what they found was it’s not the legality, what we were just talking about and like greater restrictions on prescribing according to this survey, which had a, you know, limited sample size, but instead it was the availability of MAID providers.

Like there are something like. What is it? 4 times the 6 times some 6 times the availability of MAID prescribers in Canada compared to California. And 25% of people in California were aware of that MAID is legal, whereas it was like 2/3 of people in Canada. Somewhat surprising to me because I thought it was the differences in the laws and the legality. Again, limited sample size will link to that article.

Dani 15:18

A reminder though, these decisions aren’t made in a vacuum. They’re shaped in part by the world around us. And I a limited article. It was, you know, hypothetical scenarios with non sick people. And it didn’t really get at the root of why someone would ask for me, but it did bring up this important deeper question. Are we observing authentic patient preference or are we observing the system shaping?

Eric 15:40

Yeah, well, it’s really interesting too because going off that is that I’m just also hearing like the system you are, Carly, you have. It’s the same legality. Like you’re all in the state of California, you’re all within the same healthcare system, but you have a variety of providers, some who are active participants, some who don’t want anything to do with it. Sounds like potentially. And people somewhere in the middle and maybe people are switching their minds. Is there a dynamic at all in between all of those different people?

Dani 16:13

I think you’re bringing us to the morality bucket.

Eric 16:15

Yeah.

Dani 16:18

And I think the reason our field struggles with the morality piece around MAID is that there isn’t a single universally agreed upon definition of what is morally right here. People come at these questions, we all have different belief systems, different values around suffering, dignity, meaning, life. And that means that different people can all be very deeply reasoned in their thinking, but come to quite different conclusions. I think morality is pluralistic and it’s often divergent. So what feels right or wrong to the people involved has to do with a patient’s moral framework, the clinician’s moral framework, the family or community’s moral frameworks. And we have to accept that there is a level of plurality in moral frameworks. We can’t expect us all to align on this one.

Eric 17:09

Do you feel the same, Carla?

Carly 17:11

At our clinic, I would say. I would say the same thing. And in all of our spare time, I do think it would be a really interesting exercise to ask people how they got to the decision that they have made, I think especially for the people who decide to serve as consulting physicians. So they are actually supporting that process, but aren’t willing to be the ones to prescribe the medication. I feel kind of genuine curiosity about how people have arrived at those decisions for that academic year and then how those fluctuate over time.

Dani 17:48

I was in that bucket for a little while, Carly.

Eric 17:51

Why?

Dani 17:53

Honestly. And I put this in my survey. I was like, I don’t, I don’t. I didn’t have the education. I didn’t feel comfortable with where things were at or what we describe, how we do it. This is too high stakes. I want it done right. And I said, with the right education, I will, I will be able to go beyond just consulting. But that’s what we.

Eric 18:11

So it wasn’t that you were having moral distress over people choosing this, Is that you thought you didn’t have the right education to be the prescribing provider?

Dani 18:23

Um, yeah.

Eric 18:23

Or is there more to that?

Dani 18:25

No, no, no.

Eric 18:25

I mean, not even a twinge.

Dani 18:28

Well, again, again, to be clear, I. I am not a person who does the one off consults. And. And there is some distress there because I’m thinking, gosh, am I decreasing access? But my moral distress when it comes in, comes in around. Have we misinterpreted what is beneath the surface of this request? Have we failed to tend to some dimension of suffering that we could tend to? So I don’t tend to struggle with that because I know my patients and their stories so well by the time we get to this point. But I can see how in a different framework, I might struggle with that. Should we define moral distress?

Eric 19:09

Yeah, sure. Before we define moral distress. Because I just want to bring back what I remember from the New England Journal article. Again, you can just say what you said in the England Journal article and you can generalize it to other patients. But I think in that one, you actually, you gave her the medications, Right. That you wrote about in the New England Journal, and she didn’t use it right away. Right.

Dani 19:29

She for three plus years. The awareness that this option was available made the entire illness trajectory feel tolerable. Knowing that this piece would happen on

Alex 19:44

her terms, not that she had the medication necessarily for three years.

Dani 19:48

No, no.

Alex 19:49

Okay. Just to be clear for those.

Dani 19:51

She knew that she would have access. Yeah, yeah.

Alex 19:53

Right.

Eric 19:54

When she wanted it and when she became prognostically appropriate for it, and even

Dani 19:59

prognostically appropriate, you know, she wasn’t there yet. Like all. All the stars had to align.

Eric 20:06

Yeah.

Dani 20:07

For the time to be right. In that case.

Alex 20:09

Yeah. Can you define moral distress?

Dani 20:12

Moral distress, I would say, is the. The psychological discomfort that we feel when constraints, internal or external constraints, prevent us from acting in accordance with what we think is the morally appropriate course of action. Now, Alex, you brought up earlier, this is distinct from something like moral uncertainty where we just don’t know the right action, or a moral dilemma where we feel these really conflicting values, one going straight against the other in a situation. True moral distress tends to come when we have moral awareness.

We have a clear sense of what we think ought to be done. And for whatever reason, we are constrained in our ability to fully honor that. And enough moral distress over time, and we start to experience what has been termed moral residue, which is that lingering psychological impact, that enduring sense of unease, regret, you know, compromised integrity that can persist for people.

Eric 21:13

Now, I can imagine people on this entire spectrum of medical aid and dying, let’s say even in this clinic, may have moral distress over medical aid dying. Like. Like we, for the people who are very, very pro. Like. Like we should be thinking about how we should be doing this for people with, you know, prognosis is of longer than six months. So again, like the VSAID podcast that we did on the other end is like being in a system that actually being part of this process could be causing a lot of moral distress. Is that right?

Dani 21:45

I’m always struck when I give talks around this topic. People come up to me afterwards or in the intermission. And to your point, there’s like two poles of moral distress that they voice to me. Those clinicians who just feel like may it is coming too quickly and might have been preventable if we as a system did a better job to thoughtfully ease people’s suffering, address their dignity. They’re so bothered by how fast we get there. And then other people who are so distressed by how they feel like it’s suffering is unfairly left to go on too long. For patients who are in a system where this has become hard to access, where no alternative path is given to them, so, yes, it’s. It can really span the polls.

Carly 22:28

And I wouldn’t say, Eric, like, as somebody on the whatever side of this spectrum where I do mostly prescribe for my own patients, but will occasionally do that as a one off, you know, in fairness, it’s often for patients who are already being seen in a palliative care clinic and have a consulting physician. And so it’s not starting from scratch, but occasionally it is. But my choice to be as engaged as one can be in that process is not necessarily reflective of wishing that that were more liberalized.

I actually do not wish for that to be available for people who have a longer prognosis. And were I to work in Canada, were I to be administering the IV formulation, I might feel really differently about this. That’s not to say that I wouldn’t participate at all, but that would be kind of an entirely different consideration of whether and for whom. Yeah.

Alex 23:25

Is there a sense of maybe frustration with. Because there are so few providers per capita in California compared to, say, Canada. Not that Canada should be our benchmark for this, but like, do you ever feel like, why is it always up to me to have to do this? Why aren’t there more people? I know they’re seeing patients longitudinally. I know they’re in support of medical aid and dying. Why aren’t they prescribing too?

Dani 23:52

Maybe Carly’s looking at me and I’m looking at Carly.

Carly 23:57

I am of two minds about this. So, you know, part of why I very deliberately work at a public institution is because I want to provide care to people who. Not who cannot get it elsewhere for whatever reason. Like really about access and giving people access to good quality of care when that’s not otherwise available. And I view this as part of that. If I worked in a private system and I knew people had access somewhere else, I might approach that differently. Probably not for prescribing for my own patients, but for other peoples.

That access feels like a really big part of this, especially because of that survey in Canada and others that have been done in the US that just show that generally people’s awareness of this follows demographic trends around healthcare access and health literacy. And so the access is most limited for people who are disadvantaged in many other ways by the healthcare system. And so part of me does feel like, why does this always fall on me? If there is ever a clinical thing that I have to tend to while I’m on vacation or doing something else, it’s about this because even though it’s not meant to be done Quickly, sometimes that’s how it goes.

And the timing of that happens to fall on my day off or when I’m on vacation. I bend my professional boundaries for this in terms of time allocation more than for anything else. And the people who are consulting or not participating are not in that situation. And so I do sometimes think this doesn’t feel fair, like I’m willing to do it, but should have some other kind of compensation for that. Especially because I think part of it is related to lack of institutional support, that plenty of people like you previously, Dani, are choosing to consult because of the paperwork burden, or not knowing how, or having to do a training module. Some of that is logistical and that should be easily fixed for people who are otherwise willing to prescribe.

And so sometimes I have that feeling both, you know, internally and for patients and families who sometimes have to meet me, a brand new person, and have this incredibly personal and intimate conversation, sometimes via video, even when they’ve already formed a close relationship with another physician who could theoretically do that. I worry that sometimes it’s jarring for patients and families and sometimes that might feel like abandonment or negative judgment by their physician who’s consulting but not prescribing.

So I worry about it in both of those ways. And ultimately, I think, like many of us in medicine, I want to be useful to people. And so sometimes this feels like a thing that people can’t get elsewhere. And there’s some amount of, I don’t know, like whatever the opposite of moral distress is, like self actualization that feels good in being, in being useful and knowing that in some occasions I am allowing somebody access who I think should have access when that wouldn’t otherwise be an option for them.

Dani 26:48

And listen, legal or not, legal or not, some patients, this is off the table, right? This is against their values, their belief. This is not something that they would ever consider participating in. And that’s simply true for clinicians as well. Legal or not, this is off the table, right? This is against their values, their beliefs. It’s not anything that they want to participate in. So that I do not feel any frustration towards, I feel a deep amount of respect towards that. I can understand the reasoning that lands someone there. But I think to Carly’s point, frustration at a system that sometimes makes it hard for people, for people who are really interested in this to have access comes up sometimes.

Eric 27:32

Well, can I ask, because when we talk about moral distress and moral frameworks, so you also said it’s, you know, the person’s moral framework, so individual. But you also Said the community’s moral framework. Should our communities, geriatrics, hospice, palp care? Is there a shared framework around medical aid and dying? Should there be?

Dani 27:55

Well, when I mentioned the community’s moral framework, I think I was thinking a little bit about spiritual communities or just certain communities who hold very strong moral stances on things like this. I think.

Eric 28:06

What kind of a spiritual community? Well, I was palliative care, Jerry.

Dani 28:10

For those of us in medicine, what we end up doing is acknowledging that we’re in this morally pluralistic space. We go to ethics as this sort of mediating framework that isn’t derived from any individual, but instead becomes this shared language through which we can really traverse some of these hard questions together. And I think that’s what ethics gives us. That’s for us in medicine. These are the things we’re all taught when we’re in our training. You know, the do no autonomy, beneficence, non maleficence, justice, right equity kind of lives in justice. It’s that fairness that accounts for difference and disadvantage. And these are the places that we go to together when we are trying to navigate a tough terrain where our morals might not totally align.

Alex 29:01

This is the plurality of morality that you mentioned in our sort of warm up before we started recording, which I love. Like, that is quite memorable of morality.

Dani 29:11

Yes. And then as a field still left to kind of have to practice and have some kind of guidelines and principles that are guiding us.

Alex 29:19

Yeah, yeah. I know we’re only halfway through and we’re not nearing the end, but I also just want to say thank you so much for being open and honest in your deep thoughts about this issue, which is, you know, a lot of ways personal, having to do with your own experiences, morality, choices you’ve made, and feelings towards others. Where are we going next? Are we going to ethics or is that we cover that when we were talking about morality? And how do you see.

Eric 29:46

Yeah. How do you distinguish those two? Because, like, when you talk about morality, isn’t ethics just made of, like, the loudest voices coming together, deciding what the ethical right thing to do is? Is ecstatical saying, this is the ethical approach, when in truth, it’s just their shared morality.

Dani 30:07

Um, it’s the shared principles that we kind of agree on at the basis. I. I’ll tell you what I do with. With the psych residents when I teach this. And Carly, if you want me to do this with the HPM fellows, you let me know, but hear it out first, because it’s a little bit cruel, is I will give Them a series of cases, right? Patient with advanced dementia. She would never want to live like this. The family asks for MAID or a patient who says, I don’t want to be a burden.

And that’s their reason. And all of a sudden, now we’re thinking, gosh, is their motivation intrapsychic or is it reflecting a family dynamic or societal stigma, health care constraints. I give them these difficult cases. We decide together if it’s legal. Advanced dementia, that’s not legal. That person doesn’t have capacity. We pause and acknowledge that when you go around this room, morality might land differently. For some people, this would just never be okay. For some people, it would definitely be okay. Some people are just not sure if it would feel okay to them.

And then we get into ethics, and I, legit high school debate team style, give them each a side and force them to argue of it. Right. What are. On what ethical principles could you make a case for this? On what ethical principles could you make a case for that? Now, do we all land saying, this is the right answer here? No, but we have this. Ethics gives us this shared language for examining and thinking through these harder questions together. And by the end of the session, the residents are always like, man, this is. This is hard. Yeah, that’s how you should feel.

Eric 31:40

And within ethics, you have different lenses. You have your standard, like, bioethical, like, four, you know, justice, non maleficence, beneficence, principalism. Principalism. There’s feminist ethics. There’s all this stuff Alex knows about, I don’t know about.

Dani 31:58

And ethics doesn’t even always align with itself. Right. Do you know, is it more harm to have someone suffer longer or to prematurely take their life? Right. Is it more equitable to say, hey, just because your illness pertains to the brain, that’s so not fair that you don’t have access to this privilege? Or is it more protective for us to say, you’re vulnerable and your thinking is vulnerable, and we’re going to go the extra mile to protect you? The ethics doesn’t always align, but that tension is where the heart of the work is.

Carly 32:26

Really?

Alex 32:27

Yeah.

Eric 32:27

How many times when you do this exercise, does thinking about the ethical principles shift someone’s internal sense of what’s the morally right thing to do or potentially change the moral distress they have over some of these hypotheticals? Does it?

Dani 32:45

I think, in part, it depends on how they’re coming in. Right. I think some people haven’t thought about it, and they’re coming in somewhat morally uncertain, and there’s some shifting that happens. And I think people. Other people come in with this deep sense of moral awareness, and there isn’t a shifting within themselves, but there’s a greater understanding of why someone else’s stance was reached in a reasoned way, logical way. So we get pulled a little bit farther from this idea of saying, you are absolutely wrong and I am absolutely right, as if we lived with one single objective reality of right now.

Alex 33:22

We’re 15 minutes from the end of the podcast, and we haven’t yet been quizzed.

Eric 33:26

Oh, no, no, I’m gonna. Because I got another question.

Alex 33:32

Okay, you go. You go.

Eric 33:33

Because of that. I just thinking you’ve been a program director for a hospital care fellowship for a long time now. What have you seen as far as trainees going through this program? Has there been a lot of distress amongst them? Do they come in kind of knowing what they would do and then, you know, they’re unchanged at the end of fellowship?

Carly 33:56

I would say both similar to what Dani was saying. You know, there’s so much that people bring into fellowship depending on the culture of their institution, whether it was legal, where they trained previously or not, still spiritual and religious practices, all kinds of things. And I think what I would say is, especially for fellows who are coming from other states where MAID is not legal, they really just come in with a lot of curiosity and ask to be present for the visits where people are making those requests, when we know in advance that some visits are scheduled specifically for that reason.

And even though legally trainees are allowed to participate in that process, institutionally, they are not. And so they kind of get this year of just observing and leading those conversations to the extent that they’re comfortable or not, and seeing a little bit of the spectrum of the ways that the rest of us practice. And the way that they come out at the end of the year is also pretty variable. But there’s not necessarily a pre and post, because I think most people don’t have a very clear sense of their moral framework or ethical or cultural framework for that when they start. They just kind of get to absorb the way that that comes up in clinic and in the hospital, which, you know, includes the va, includes lots of. Includes lots of different hospitals where the conversations around that, or lack thereof, are pretty different.

Dani 35:17

My question to quiz you.

Alex 35:19

Oh, okay. All right, Go ahead. You can ask questions if you want. No, no, no. I. I don’t think my question will get at your quiz topic, so you

Dani 35:29

should quiz us first, because we’ve been. We’ve been doing a lovely job together, of Swimming in the gray and staying in the gray. But at the end of the day, like, how are we gonna help people who are listening to this and wanting to know, what do I do with all of this? So present me with nearly any form of patient suffering. And my stance remains the same. I’m about to say two words I’ve said on every GeriPal podcast.

Eric 35:53

Formulation.

Dani 35:54

That’s one of them.

Alex 35:56

Countertransference.

Dani 35:57

Oh, oh, my heart is happy. Now you can each define the one that you. That you named.

Eric 36:03

Oh, no.

Alex 36:06

Hey, can we switch?

Eric 36:07

Yeah, go ahead. Formulation.

Alex 36:08

I’ll do formulation. Formulation is kind of. This is how I think about. This is going to be wrong. But I think about it as, like, what’s the story that you develop? What’s your hypothesis for what’s going on psychologically for this patient? That they’ve arrived at this decision, this behavior, this way of expressing themselves? How’d I do?

Dani 36:28

You just crushed that. Right. And so in may feel like having

Eric 36:33

Dani on for 10 times, we finally

Alex 36:35

remember, I say you retain 15% every time you hear it. So

Dani 36:43

for Maeve, though, what it gets at is what is beneath the request. Right. Is this wish to die a wish to end suffering, whether pain, depression, existential distress. Right. This foundational work by Harvey Chachinov, Bill Breitbart, it reminds us that these ex. These requests are often at that nexus of dignity and meaning and identity. Or is it a wish to avoid functional decline or to protect family from the burden of caregiving? Is it a wish to regain control, like Carly was talking about earlier? Simply knowing that there’s an escape hatch opens the door to some sense of security in life.

Eric 37:19

So then does it matter what their underlying reason is as long as they want it?

Dani 37:24

I would argue that it does. Right. Well, I will. I will add to, though I will answer that. But like, for some people, is it a. A wish to communicate their distress? Right. They’re signaling to us, hey, the system isn’t seeing my needs.

Alex 37:39

Yeah.

Dani 37:39

And then for some, is this a wish to die in a way that feels very, very deeply authentic and consistent with their values and their sense of self and these phenomenologically distinct. And I think that it matters because not just assessing eligibility, which you talked about, but understanding what kind of suffering may be speaking helps us know whether there’s anything that remains that could meaningfully shift the experience.

So rather than reflexively saying, you know, you qualify, here’s how, you can die, or, we’re just not going to go there, we can really choose to lean into the story get really close to the story, so close that we know it so well. And for me, as a clinician, this is when clarity emerges. And it’s very protective for moral distress, because some requests really are deeply consistent with who a person is. That’s the case in the. In the New England Journal piece I wrote. But other times, I reveal this unmet need, and it’s something that can be tended to or advocated for or relieved. And like, interestingly, Carly, I wonder if you experienced this as well.

But in these moments, that act of leaning in, of listening to just really understand somebody itself becomes an intervention because we accompany their distress. And in doing so, we sometimes help restore that sense of personhood that has gone missing just by knowing them as a person. This is what Chechenov’s work around dignity really speaks to, how being seen, being heard, being known can shape the experience of suffering and can change the way people feel about requests for hastened death. So, yes, I deeply care what my formulation is, because I’m working with something very different in one case.

Eric 39:21

So I’m getting this. Even if you’re hearing that they don’t want to be a burden to their children, that’s not enough. That is not a formula. Like, you’re trying to figure out why. The underlying hypothesis of why they’re worth

Dani 39:33

feeling this way, and is there something there to be tended to, or is this depression?

Alex 39:40

Yeah.

Dani 39:40

And that’s treatable.

Eric 39:42

Oh, yeah. I got another question, because not everybody has a Dani, Eric, Carly. Like, not everybody who’s going to be prescribing these drugs are going to do that. Like, isn’t that a case against medical aid and dying? Because maybe there are a lot of people who are just signing off on it with the most basic of questions.

Dani 40:03

We’re going to answer that, but don’t think you’re off the hook of defiance.

Alex 40:06

I know. I love this strategy of just asking questions till the podcast ends and we run out of time.

Dani 40:12

Carly, do you want to take a first step?

Carly 40:14

Well, I was going to very much agree with you, Dani, about how part of the therapeutic relationship that can be built from this is around this.

Dani 40:21

Like, the.

Carly 40:21

Just the conversation itself and the way that bringing it up can be a signal of the amount of suffering that people are experiencing of any kind, both to us as their clinician, but often to their families, who sometimes are in a very different place around what is happening to someone’s body and in their mind and the trajectory of their illness. And so I find that to be a way for them to bring that conversation to us, but also sometimes as a signal to their family that they don’t have another way of communicating. I do think that that is a really good opportunity to explore some kinds of suffering that may not have been fully vetted in other scenarios.

And I would say that, and at least for me, those two things are not mutually exclusive, that there are lots of tools that we use, and this is one of them. And so I don’t necessarily think if this person is asking for it because of pain, which is not the most common reason, by the way, most common reason is really like existential worry about kind of loss of autonomy, loss of dignity, functional decline, those. Those kinds of things. I think pain is third on the list. I’m trying to think about what the second one is, but it’s. But it’s like a, a big difference, a big difference from one to two, and, and beyond that.

And so, you know, if someone is saying that they’re doing it because of pain, I’m going to try real hard to manage their pain. Probably have already. And sometimes even when people’s pain is managed, that doesn’t alleviate their desire for this. And so having tended to all of their sources of suffering to the extent possible, does not mean that I’m not going to prescribe MAID afterwards, that I want to make sure to address those things from a relationship standpoint, from a dignity standpoint, and for a physical symptom standpoint, and still end up giving them access to those medications on plenty of occasions.

Dani 42:19

Yeah, Kylie, we see the same in the, you know, treat the depression. Sometimes the request goes away, sometimes it doesn’t. But the task is similar, to understand the experience as fully as possible, to address the modifiable contributors to suffering, and then to assess what wishes persist, deepen, or shift over time. And to your point, Eric, I do think that this is one of the arguments against made.

Not philosophically, not is it like a philosophical thing, me saying, should someone have or not have access to that. But I think just in everyday practice, and I think a lot of people have argued this concern. There is a concern that maybe will get used with a patient who could have had a meaningfully different desire, meaningfully different values, if their suffering had been tended to in different ways. And that is a real concern with how we operationalize acting.

Alex 43:14

Yeah. And you don’t want people choosing MAID because of failures of the system to care for people who are very sick, very elderly, very frail. There was that kind of Atlantic article that had that explosive title and headlines sort of stories, but One of them was about a guy who’s in the hospital gurney for three days, right. And developed bed sores and wanted to request MAID. Like, that’s. That’s a systems failure. And that.

That is problematic when we start getting those requests, real though they are, because that suffering is genuine and true. But, boy, that talk about moral distress, because, you know, the failure of the system is leading to this. Not. Not an illness that we exacerbated. But you were going to ask Eric a question before he requests the song,

Dani 44:03

before he gets us to the end. Define countertransference, and I’ll give you my one snippet about why I think it really matters in this situation.

Eric 44:13

When I think about it, it’s like our emotional reaction, inner state when working with patients of, like, if. If somebody is depressed in front of me, it’s my own internal feeling around that. That depression. It’s. That. That’s probably a better way to define it. Dani, give me a better definition.

Dani 44:31

Your spot on. It’s what arises within us when we’re caring for a patient. So our emotional or internal reactions to a case. And let me tell you something, requests for hasten, hastened death can give us a huge array of reactions. Urgency, rescue impulses, compassion, dread, relief, sometimes a mix of things. And they aren’t inherently right or wrong, but why they matter so much is that they’re really important data, and they’re cue to us to turn inwards because sometimes they’re telling us something about the patient experience that we really need to look at.

And sometimes they’re telling us something about ourselves, our values, our thresholds. So if I feel uncomfortable, maybe it’s because not enough has been done to address this patient’s suffering. Or maybe it’s because I have a sense that this actually isn’t in alignment with their deeper values. They’re just worried about, you know, their family having to care for them. Or maybe it has nothing to do with them and it’s about my own moral boundaries and what feels permissible to me as a clinician. Maybe it’s something else. There isn’t a single conclusion, but there’s a responsibility to examine it. Because how we understand our own reactions really shapes how we show up for patients.

Eric 45:39

Yeah, and I can imagine that. Carly, I’m going to go to you because, like, while we would love to live in a world where systems don’t influence our decisions, like, it’s kind of naive to think that they don’t. Like, we’re not all billionaires who can afford two caregivers caring for us so our family members don’t get burdened, is that we have. There are limitations to everything. There’s just, even in the perfectly designed system, even outside of the US and these, like, there are limitations. And I can imagine that brings up some of this countertransference, some of this distress.

Carly 46:15

Does, does. I would say that, that my flavor of countertransference or like, kind of what that includes has, has changed a lot over time, even if my prescribing choices haven’t. The internal experience of that has changed a lot of. A lot over time, partly because of now having enough clinical experience to have seen more situations than I would, you know, care to remember about. Even where just physical suffering could not be alleviated, despite all of the medications that exist. Like, I think in the very beginning, even if I had agreed to prescribe, my thought was, oh, well, you know, there are enough opioids and ketamine and everything else to get people comfortable.

And, and you know, after you have that not be true, despite your very best efforts for a while, that instills a lot of humility around my ability to alleviate suffering, no matter how much I have explored it and attempted that with people. And I very much agree with you that, that we can say that we don’t want people to request this or access it because of the failures of the system. And yet as a society, this is the system that we choose over and over and over again.

And so when someone chooses, when someone asks for this because they don’t want to die in a nursing home and they can’t afford caregiving, we choose constantly to not give people the support that they need to be at home and have a quality of life that is acceptable to them. And so both of those things are true, that, that suffering is real and there’s not a way to alleviate it through systemic reform because we’re not gonna do that or we haven’t done that.

Dani 47:53

And that’s where some real moral distress for me, because it’s one thing to really tend to everything in a person’s personhood and case and say this is their authentic values. It’s another to look at someone and say, we are not equipped to meet your needs. Our system is not equipped to meet your needs. And this feels like your only permissible option when in my heart of hearts, you deserve something better.

Eric 48:19

Yeah. What do you do in a case like that? Like, you are the limit. You’re at the limit of what our system can do, right or wrong.

Dani 48:28

I mean, I think in a case like that we. This is more of a societal ethical.

Eric 48:33

Yeah.

Dani 48:34

I think as a society we need to think about what we offer to people in this chapter of their lives.

Alex 48:41

Yeah.

Eric 48:43

I want to thank both of you. I don’t know. We’ll leave it at that.

Alex 48:45

Unanswered question, but more we could have talked about. I was going to do lightning round. Do you think this is suicide? But that is not a lightning round question, dear listeners.

Eric 48:57

Well, it’s probably not going to be our last metaphor podcast.

Alex 49:01

Probably not.

Eric 49:02

Walk Me through the Dark Alex,

Alex 49:16

(singing)

Eric 50:25

Carly, Dani, thank you for joining us on this podcast.

Dani 50:28

Thanks so much for having us.

Eric 50:30

And I really want to thank you for sharing some of your kind of internal mindset on this. Really appreciate that. Thanks a lot of courage and thank you to all of our listeners for your continued support.

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