Hastening Death by Stopping Eating and Drinking: Hope Wechkin, Thaddeus Pope, & Josh Briscoe

Eric 00:11

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And Alex, who do you have with us today?

Alex 00:14

We have a very full house today. Hope Wechkin brought this topic to us. Thank you, Hope, for bringing a topic to us. We love it when our guests suggest things. Hope is a palliative care doc and hospice medical director at Evergreen Health up near Seattle, Washington. Hope, welcome to the GeriPal Podcast.

Hope 00:31

Thanks. Great to be here.

Alex 00:32

And one of Hope’s collaborators, Thaddeus Pope, is a lawyer and a bioethicist and professor of law at the Mitchell Hamlin School of Law in St. Paul, Minnesota. Thaddeus, welcome to the GeriPal Podcast.

Thaddeus 00:46

Thank you.

Alex 00:48

And we’re delighted to welcome back Josh Briscoe, who’s a palliative care doc at the Durham VA Medical center in Duke and blogs at Notes from a Family Meeting. Joe, Josh, welcome back to Jerry Pal.

Josh 00:58

Thanks, y’all.

Alex 00:59

And finally, Theo Slomoff, who is a palliative care fellow at UCSF and is joining us as a guest host. He is going to jump in there and ask questions, yry to get in edgewise. Eric has so many questions to ask. So, yeah, jump in there, Theo.

Eric 01:13

Yeah, you got to jump in. Take it over. So we’ve got a lot to cover because we’re going to be talking about feeding, nutrition, hydration at the end of life’s particular, this idea of minimally comfort feeding, V said medically aided dying, how they all potentially combine or if they don’t. So a ton to talk about. But before we talk about this subject, about nutrition, hydration at the end of life, people with advanced illness, or maybe not so much. Does somebody have a song request for Alex? I do, yes. What is it, Hope?

Hope 01:50

Hungry like the Wolves by Duran Duran.

Eric 01:53

Why did you choose this song? Very apropos title.

Hope 01:58

Well, gotta think about hunger. But most importantly, I wanted to hear something from junior high.

Alex 02:08

When did this song come out?

Hope 02:10

It came out in 1982 and I. And just this morning I looked up the video. It was actually the video that came out with this. It is hilarious. The hair is amazing. And Simon Le Bon, I mean, he’s still going, but he just tears it to shreds.

Eric 02:32

So let’s see if Alex tears it to shreds.

Alex 02:38

(singing)

Eric 03:37

Thank you, Alex. So we’ve got a lot to cover. I’m going to start off with you, Hope. You wrote a paper not too long ago titled Mr. Smith has no Meal Times, Minimal Comfort feeding for Patients with Advanced Dementia. Why did you write this paper?

Hope 03:56

Well, the short version is I had no idea what I was getting myself into. I was part of a writing group that wrote clinical guidelines for VSET for voluntarily stopping eating and drinking. And after we were done with that, we thought, you know, we should define what comfort feeding only is. And just to make sure everybody knows what that is and how that’s different. And I thought, oh, how hard can that be? Like, that’s pretty easy. That’ll take an. After I had an afternoon when I could, like, write that up, and lo and behold, I started looking into it and. And I started to find out that actually, comfort feeding only is not very well described at all. It’s not very well defined at all. And then actually, what happened was right around that time, I’m a hospice medical director, and of course, it was a Friday afternoon, and I got a call from our intake department about a patient. And I knew it was a matter of time before this came along.

There was a patient who was living in Seattle at a skilled nursing facility. And she was from Oregon, of course, and in Oregon in 2012, she had completed an advanced directive for stopping eating and drinking once she had advanced dementia. And it was very clear, and she could now no longer recognize her family members. And the family members said, okay, now’s the time we need to honor her request. We need to completely stop eating all food and fluids that’s being delivered to her. And we got this as a hospice referral, and could we, you know, take her on and support her in hospice? And honestly, this was not a well planned out thing. I just, I started thinking about our CNA from West Africa who was very devout Christian, and started imagining that person trying to instruct and work with the skilled nursing facility staff to stop all food and drink. And I thought, oh, my gosh, how’s that going to work? So it really was a by the seat of my pants kind of in the moment Friday afternoon. Question is, could we compromise. Could we say, instead of adhering so strictly to these directives, could we figure out a way through in which a little bit of fluid would be made available? That’s how it started.

Eric 06:38

Because those directives were basically stopping eating and drinking by advance directive. Right. That’s what we would call it is you have this Ulysses contract. Ulysses tying himself up on the mast, saying, whatever you do when the siren starts singing, do not untie me. So this idea that, you know, past self says, you know, my ears with.

Hope 07:04

Wax first, so I can’t hear them, but if I do, then you can then keep me tied up.

Eric 07:11

So past patient without who still had capacity, said, if I, you know, develop advanced dementia, you know, stop feeding me, stop hydrating me, potentially, even if I look happy eating and drinking and don’t.

Thaddeus 07:27

For me, even if you ask. Right. Even if I straight up say water. Water.

Hope 07:33

Right.

Eric 07:34

That’s interesting. Like, how advanced dementia was. Was this patient. It sounds like they didn’t recognize people. Were they still talking?

Hope 07:41

So this patient was, you know, she. She was at about a fast 7A. So she had. You know, she was. She was verbal, but. But minimally so she had a few words at her. Her disposal. So just because she didn’t recognize them didn’t mean she didn’t have words. So she. But she headed the instrument.

Eric 08:04

Okay.

Hope 08:05

And they took that. They took the fact that she was now, you know, they’ve been. It wasn’t an overnight decision, but they took the fact that she had. That she wasn’t recognizing them as like, okay, this is. She wouldn’t want to keep living like this.

Eric 08:18

Theo, you had a question.

Theo 08:20

I was just hoping that you could describe a little more about what that compromised state looked like. Like, what was the. What was the end point that you had reached for this patient?

Hope 08:28

Well, so what we. And what really surprised me is it was the most anticlimactic thing ever. I thought it was going to be this, like, big deal and all this controversy and all of that, but I said, well, could we just, you know, maybe give her some water if she looks thirsty? Maybe give her a little bit of ice cream if the family feels like that would be comfort. And everybody, nursing facility, hospice team, family was like, oh, yeah, let’s do that. And so what initially seemed like this really fraught, possibly contentious thing actually became a thing where everybody was on the same page.

Eric 09:15

So was the compromise here. So comfort feeding only is. We’re offering food. We’re delivering food to them. Breakfast, lunch, and dinner. We’re offering water. We’re offering all this stuff is the difference with this idea that you’re creating this minimal comfort feeding is that we’re not offering anymore. They have to request it or show sign or just request.

Hope 09:37

And obviously somebody with a cancer dementia can’t really request it, but they can demonstrate usually, and honestly, it’s more often thirst than hunger is the issue, which we know from vset, but they can have parched lips, they can have a dry tongue. So the difference between comfort feeding only and minimal comfort feeding is really that comfort feeding only says don’t give anything more than is comfortable.

Eric 10:09

Don’t over, don’t, don’t, don’t force food, don’t force hydration.

Hope 10:13

Right, don’t force it. And minimal comfort feeding says don’t give any less than is comfortable. So comfort feeding only defines the upper limit. Minimal comfort feeding defines the lower limit. And the problem with comfort feeding only is that it’s in the, in the eye of the beholder. So one person’s comfort feeding only is another person’s force feeding, you know, waking somebody up. And we see this all the time in skilled nursing facilities. Patients are, they can live for months or even years with comfort feeding only because they, they’re being fed very carefully, very diligently, very lovingly by staff members.

And the goal, even with comfort feeding only, and what was a revelation to me is it was introduced back in 2010 as a response to the recognition that tube feeding was fraught with problems, you know, caused decubitus ulcers, didn’t extend life. And so comfort feeding only was a way, or really hand feeding probably is just as good a term for it, is that hand feeding, if done properly, is at least as good, better than tube feeding. And it will serve the same purpose, which is to keep somebody alive for as long as they can. And that makes a ton of sense for a lot of people.

Thaddeus 11:42

Well, I was just gonna say, I like the word that Eric used. I think he said compromise, because in the advanced directive context, right, we’re not going to completely honor the wishes of the then self, the person that wrote the directive, nor are we going to completely honor the needs of the now self, the person in the bed right now. So we’re gonna, the person wanted to hasten their death and not live very long into late stage dementia. That’s going to happen with minimal comfort feeding because they’re not getting their nutritional needs, they’re not getting the volume of liquids that they need to sustain life, but they’re not going to die as quickly as they wanted to with a straight up visa directive. So we’re kind of honoring their wishes. They’re still getting done. It’s just not quite as quick or effective as they had desired in their advanced directive. But at the same time, we’re saving a lot of moral distress of the long term care staff in terms of having to bear watching people not have thirst needs addressed.

Alex 12:41

We should say for our listeners too. Most of our listeners are clinicians and you may be thinking, well, how do I do this? And we’ll say that we will link to an article that Hope and Thaddeus and others, I think Tim Quill was on there, wrote in journal, Pain and symptom Management, I think it was. Is that right, Hope? Yep. That describes like the difference in prognosis, right. Between these different avenues, approaches and also step by step framework approach, an algorithm that starts with mouth care and then proceeds to small sips of water. And then if beyond that several trials of that don’t seem to resolve the discomfort, then moving on to small amounts of food. We’ll have a link to that in our show notes.

Eric 13:28

And you know, reading this through, like you mentioned the status. It’s like this two person problem or this past self, now self problem. I love the TV show Severance. Anybody else watching Severance?

Alex 13:42

Oh, you started season two.

Eric 13:43

I have.

Alex 13:44

Oh, okay. I haven’t started it yet.

Eric 13:45

I’m not gonna try to do any.

Alex 13:46

Big, like is this work, Eric?

Eric 13:49

This is work. But it’s really interesting because at the moment of severance, like the second that first person kind of woke up, that second person woke up in the basement after the severance, they’re a different person. And you see these two different people go in different paths. And it just reminds me when we’re thinking about, especially with stopping eating and drinking with advanced dementia due to advanced directive or these Ulysses contracts. Who do you give informed consent to? Past self or current self? And especially with eating and drinking, like when I think about it, these are not. I don’t ask any of my patients whether or not they have capacity to make a decision about eating or drinking. Like they just will be offered it. And especially in people with moderate dementia and maybe even some more severe dementia, they still may retain the ability to have capacity to decide, I want something to eat, I’m hungry.

Thaddeus 14:50

I don’t think that’s right. Because. No, because what they don’t understand, right. The na. The definition of capacity in ethics and medicine, law. Right. Is that you appreciate the consequences of what you’re doing. And for that person.

Eric 15:05

It makes me less hungry.

Thaddeus 15:06

But it’s going to prolong living in a state that you carefully deliberated, that you did not want to live in and you don’t appreciate. But it’s a risk, right? Yeah, but I mean, in healthcare you need to appreciate the risks, benefits and alternatives of the proposed intervention. And they get the benefits because they’re thirsty. They get the benefits, I’ll grant you that. But they don’t get what I would call is a risk of drinking.

Alex 15:33

Let’s bring Josh in.

Josh 15:34

Yeah, maybe if I can join Josh in. Yeah. So. And capacity is very important. I think it’s incredibly important. I’m also a psychiatrist, think about capacity a lot. I think the question that’s more interesting to me here, setting aside the issue of capacity, is what can people with dementia value and can your values change through the experience of losing cognition? So it seems to me that if we’re going to honor an advanced directive like this over the objections of the now self who says I want to drink water, even if they can’t appreciate everything that’s going on, we’re elevating the past selves, rational interests, they’ve realized a certain way of life. They don’t want to live that way over the now self’s experiential interests. Like, I’m thirsty, I want that remediated. They might not be able to articulate that, but we can all empathize with like being thirsty and when I’m thirsty, I want to drink. And losing cognition would suggest that I don’t think you lose the capacity to want to remediate that feeling of thirst.

Hope 16:36

Right. Which is, that’s, which is the point. Which is why we’re trying to address that. And to use a terrible phrase, we are trained to have our cake and eat it too. I mean, you know, we’re trying to both honor what, what the surrogate believes is the, the patient’s preference, which we do all the time with all kinds of other medical interventions and provide comfort in a humane way. I’d say as the more I thought about it, the more I thought, if I’m writing an advanced directive, even if I’m the sort of person, and I probably am the sort of person who might think I don’t want to live with advanced dementia for a long time, I would rather know that my kid is not going to have the burden of having to withhold something from me. And also I’d rather know that I myself not going to be super thirsty.

Alex 17:35

Can I interject here? Yeah. And just say Hope, I love this. Like this. This is just because this arose organically in clinical practice as a way of balancing these underlying competing ethical issues. Right. On the one hand, you have the autonomy principle, this, you know, autonomy from the Greek self rule that they said they would not want to live in this state at some point. And then you also have the expression of thirst or hunger from the person with advanced dementia in this moment. And we don’t want to ignore that. And this goes to this underlying principle that probably Immanuel Kant first articulated about respect for persons, that their personhood is worthy of something in this moment, even though it may come in conflict with. Right. In some ways, that previous expression of autonomy. And then finally you have the moral distress of the providers. Right. And this is like, you know, virtues, ethics. Well, how can I be. What does the good doctor, the good nurse do in these sorts of situations? And how can we be comfortable in our roles as providers caring for people with serious illness? And what I love about this minimally comfort feeding approach is the way it balances these competing ethical concerns to find a way forward.

Josh 18:50

Yeah, I agree. If I could jump in and say something else as well and just pick out another ethical question. Hope, I wonder what you think about this. So it strikes me that the intention of an advanced directive by stopping eating and drinking is to bring about death. Like, I don’t want to live that way, so withhold all food and drink from me so I can die. That is the intention of that directive. It strikes me that the intention of minimal comfort feeding is to comfort, comfort this person. And if they happen to die more quickly as a result, that might be a foreseen but perhaps unintended consequence. Because if you have a bottle of Ensure there, they take one sip. They don’t want any more. That’s one sip. But if they drink the whole bottle, I mean, you’re not going to withhold them just because they’re drinking more. That might sustain them longer. So your intention with minimal comfort feeding isn’t necessarily to bring about death. Have I understood that correctly?

Hope 19:42

No, I actually disagree. I think, I think that the intent. That’s the intent of comfort feeding, that. But the intent with minimal comfort feeding is to allow a person who’s, who is otherwise going to, you know, living longer than they would want to, to not live as long now, but under. More comfortable.

Eric 20:07

So it’s actually like the family wants the hastened death. The patient wrote this. I want to hasten death, but do it comfortably. This is the compromise and I want.

Hope 20:16

To make that point really clear that it doesn’t depend on a written directive. And that was really important because we know that for all of our efforts, lots of people don’t complete directives. And so I think of it as more like the patient who’s on document dialysis, who. The who doesn’t have the capacity to speak for themselves anymore. And the family says, dad would never want to live like this. They’re getting an intervention that, you know, he’s getting an intervention that is keeping him alive. And he never said he doesn’t have an advanced directive, but this is an intervention. This scheduled dialysis, just like this scheduled feeding and hydration is. The goal is to keep them alive, and he wouldn’t want this.

Thaddeus 21:08

Can I say one other way? I would say respond to Josh is in the 20 or so dementia directors or VSAT directors that are being distributed and completed around the country. So mostly people are asking for VSET in their advanced directive. To the extent that now MCF is newer, so there aren’t many that mention mcf, but to the extent those directives mention mcf, it’s a backup option. In other words, these are framed as, I want you to hasten my death as fast as possible when I get to late stage dementia. If the facility or my family or somebody’s not willing to do that because you’re freaked out, then at least give me mcf. Right. And again, maybe we could do an empirical study. Maybe most people will be like Hope and they put MCF first as their first choice over. But as of right now, people look like they want to hasten death as fast as possible, and MCF is just a slower way to get to the same goal. So I also agree on the intent.

Alex 22:07

Point and for our listeners who may be wondering, because we’re getting into a little lingo here, so one of my roles is to say what the listener might be wondering. V said, voluntary stopping eating and drinking and MCF minimally comfort feeding. Minimal comfort feeding. There they go there, right? Minimal comforting, female, minimal comfort feeding. And also we will link to our prior podcast with Tim Quill on voluntary stopping eating and drinking.

Eric 22:30

Yeah, and in particular the third one is stopping eating and drinking by advance directive. So V said requires voluntariness. So somebody who has capacity is making that decision versus that Ulysses contract. You got stopping in and drinking. Buy an advanced directive, which is really applying to this, you know, people who no longer have capacity. Go ahead, Theo.

Theo 22:55

I was just also curious in thinking Hope about the kind of ideal patient for minimal comfort feeding, how important their Prognosis is in establishing that kind of calculation. So I was thinking about the fast stages of dementia and could definitely imagine folks who are at a six level who are incontinent, who would say that’s not a quality of life that is tolerable to me. I would want to initiate MCF sooner. And what your thoughts would be about that?

Hope 23:24

Yeah, that’s a really great question. I think that Advanced Dementia Fest 7A and beyond that is by definition end stage. There isn’t Fest Stage 8. So I think that you can start going back further and further. You know, what about stage five? What about stage four?

Alex 23:47

Yeah. What about asymptomatic? Just got the diagnosis based on blood tests of amyloid.

Hope 23:54

So that’s different. Then just got the diagnosis. They have capacity and so then they may have the ability to engage in vsed. The burden is on them. So I would say I am comfortable with the idea of supporting. Yeah, minimal comfort feeding in somebody with advanced dementia. I don’t know about earlier than that. I don’t know yet. And I think we’re just starting to think about this and starting to get. To get more.

Eric 24:25

It does bring up an interesting point because at some point, so we talk about capacity and we’re using it almost as a global term, but it is situation specific, like decision specific. At some point, if your advanced directive says like for. Especially for stopping eating and drinking by advanced directive. If your advanced directive says something that person with moderate dementia, maybe you’re gonna argue that that patient with a mild dementia, that patient with this amyloid in the brain is going to be able to say, no. Like that was just a dumb directive. I want to continue to live. I’m fine like this. Just like that person pre amputation said, I would never want an amputation. Post amputation, yeah, life is pretty good.

Hope 25:03

But I would say that’s true. That’s true. This is why the most. I think the most important thing in advance care planning is who your surrogate is, because the surrogate has enormous influence with any other kind of medical intervention at the point that you aren’t able to make that you aren’t able to make decisions on your own behalf. So this is really. I know that food and drink gets its own sort of special category in a lot of are thinking, but I think of it as very. I think it’s. Once you cannot feed yourself, then you are dependent on somebody else to do something to you or for you, it’s now an intervention.

Eric 25:48

And Josh, I got a question for you. You brought up this Question of intent earlier. I’m going to go back to that for a second. Does that change at all your thoughts about minimal comfort feeding?

Josh 25:58

Yeah. So I think, I mean, intent has to do with the intent of the agent carrying out the task. It strikes me, I mean, the intent then formulating this idea and the intent of any given clinician might be to hasten somebody’s death, but I don’t think that’s a necessary criterion of the procedure. You could intend to comfort this person through providing the feeding without intending their death. You know, you’re not going to twist their arm and make them aspirate on the bottle of Inshore, trying to make sure they get their nutrition in just because you want them to live longer. You’re going to withhold that drink when they start to show signs they don’t want to drink anymore. But if they want to drink one bottle, two bottle, three bottles, it strikes me that you’re probably not going to cut it off and say no more. Is that, I mean, well, no, actually. I mean, so you will cut it off even if they’re requesting more?

Hope 26:50

Well, I think if a person is requesting more, that is going to take, that’s going to take a whole big look at. That’s like, okay, stop, let’s everybody think about this. What’s really going on? You may have to wrestle with that. But if there’s agreement that, okay, my intent is to honor this person’s, what I think this person would want for themselves. There is actually. What’s outlined in the paper is, is an algorithm that says first do this, then do that, and then offer them 260ccs of fluid. And of that they still see, you know, then do hand feeding for no more than 15 minutes. So in an effort to be clear, I don’t want to sugarcoat it like the point is, is to honor what is understood as the patient’s intention. The intention.

Eric 27:45

They don’t want to live in this condition.

Hope 27:47

They don’t want to live like this anymore.

Josh 27:50

And my concern in doing that is you elevate rational interests of the past self over the experiential interests of the current self. And in doing that, you’re saying people who can rationally choose things that matter to them, that’s somehow more valid choice than people who can only choose things they can experience.

Thaddeus 28:08

Josh, isn’t that true of all advanced directives? Right? It’s a, it’s a, it’s a past self directing healthcare for a future self. You know, obviously we could maybe exclude the people who have severe, prolonged disorders of consciousness. But there’s people that have some levels of consciousness, so they are experiencing the world. And we’re going to take them off dialysis. We’re going to not give them artificial nutrition, hydration. We’re going to do lots of stuff to them. But we honor. I guess I’m wondering how you distinguish this from other advanced directives where past self is killing a future self.

Josh 28:38

Yeah, I think there’s two questions there. One is validity. Like the efficacy of advanced directives, which I know y’all have done podcasts on that before. Like, I mean, can we project into the future the things that we do want? And Eric alluded to this, like, often we’re wrong. You know, I would never want to live like that. And then that happens and it’s like, actually this isn’t so bad. And so that should give us pause, I think. I think the other question is in thinking that way, there’s a weighing of burdens and benefits around medical therapies. And if, if somebody who’s cognitively impaired is wanting a drink, they’re signaling, gesturing that they want more to drink. The burdens of that seem minimal as long as they’re able to swallow, whereas the benefits in their impaired state seem great. I mean, they, they get to slake their thirst.

Hope 29:27

But that’s exactly. But that’s where the surrogate comes in. And that’s why I. This is not about a dance directed. It’s very intentionally not about advanced. Surrogates are asked all the time to make judgments about what they think is that their person would say. And so the vast majority of the time, I think a surrogate who sees their mom downing the cans of Ensure is going to say, she seems to really like the Ensure. And I don’t want to put any restrictions on that. Let’s stick with comfort feeding only. So again, this is for the. I don’t know if it’s a minority, I don’t know if it’s majority. We don’t know yet. But this is for the situation in which comfort feeding only is keeping somebody alive longer than the surrogate thinks is is what they would want.

Eric 30:28

I love this discussion and so many ethical issues around it. And I love the part of this idea of like compromising, like we’re thinking this through using the surrogate. I’m going to push a little bit more on a bigger, another ethical issue and I’m going to switch tracks just a little bit. So we’ve talked about vsat, voluntary cessation of eating and drinking I have capacity. I am going to decide I am no longer going to eat or drink, which is going to cause my death, likely. I just heard from Greg Vanderkeef on HPM Talk in general. Average eight to nine days later, but it could be a little bit longer, could be a little bit shorter, but I’m going to stop eating and drinking. Thaddeus, you wrote an article in JAGS not too long ago. How long ago is that? Maybe six months. I lose track of time. Yeah, but basically in that is this idea that if you initiate VSED in some states, you may now be eligible for medical aid and dying, Is that right?

Thaddeus 31:34

That’s right. So to take your description of Greg’s talk, VSET has a long duration, Right. So sometimes it’s 1214. It could be long, you know, and so that’s a long time for the patient to have to go through that. It’s a long time for the family to have to grieve and go through that. And it’s expensive because you need nursing care, doula care for that whole time. Right. So it’s 15, 20, $25,000. It’s expensive. So for all of those reasons, many people would. MAID is faster, obviously. MAID is way faster. Maid’s an hour. And so they now they can’t access MAID directly because dementia is too long of a timeline.

Eric 32:16

Every time I’ve given like a medical aid in dying talk, physician aid in dying talk, like there’s always one person in the crowd who raises their hand who says, oh, if I have dementia, if I have Alzheimer’s disease, I would want medical aid in dying. That’s not for you, right?

Thaddeus 32:33

Not yet. I mean, obviously, you know, there’s SB 1196. So California may be the first state to cross that line.

Eric 32:39

But, you know, what’s SB11?

Thaddeus 32:43

Senator Blake Spear, who’s a senator, California senator in Southern California is, you know, is trying to amend the California End of Life Option act to basically instead of that six month prognosis, just to put out dementia as a separate pathway toward eligibility for maid.

Eric 33:01

Has that happened anywhere? I feel like everything comes from Oregon and Washington around this. This is coming from California. Does any of this happen anywhere else.

Thaddeus 33:08

In the U.S. no.

Eric 33:09

Yeah. No. All right.

Thaddeus 33:10

Nobody’s done that yet. Everybody still has the six month, basically the hospice type rule. Yeah.

Eric 33:16

So if you have dementia, you’re not eligible for medical aid and dying because you don’t have less than six months to live. By the time you do have less than six months to live, you don’t have Capacity so you cannot do medical.

Alex 33:27

Aid and dying before we leave that point about this new proposed legislation. Is the legislation propose to allow a pathway for dementia at a point at which they still have capacity, like earlier stage dementia and can make this decision and self ingest? Or is the legislation proposed to allow pathway for dementia for patients who have advanced dementia and do not have capacity and have a short time to live?

Thaddeus 33:54

Yeah. So it’s the former for a lot of reasons, Right. Political right. Which is it’s gonna be hard enough to pass at all. Right. But to go on to do what Quebec is doing or Spain. Right. And allow advanced directives for euthanasia. First of all, you’d have to allow it through advanced directive as opposed to contemporaneous request. Second, you’d have to change it from assisted suicide to euthanasia because the patient can’t self administer, somebody else is going to have to administer. So that second thing you just said would be too many changes from the current world. Right. So all we’re saying is. But it raises the question we were talking about about five minutes ago, which is, okay, what I’m trying to avoid is stage seven, but I’m gonna have to get them aid by stage three because I have to have capacity at the time that I request the medications. So it’s gonna have to be relatively premature. I have to kill myself now in order to avoid something three or five years later. But yes, you have to have capacity and you still have to self administer.

Eric 34:57

So for this you have to have. So this idea of using V said to maid, it happens earlier on in the course of the disease while you have capacity because it’s vset. You have to have capacity for V said you also have to have capacity for maid. And then why not. Why is this happening now?

Thaddeus 35:15

Well, okay, so the reason I wrote about it is because of the case, right? So I heard that people were doing it and people brought those cases to me and I thought, well, that, wow, I hadn’t thought of it myself.

Eric 35:28

So we’ll have a link to the case in a JAGS article. We’ll link to that in our show notes. Can you give us like a one sentence discussion of the case?

Thaddeus 35:35

So she had. This was a dementia case and she could have done a V said directive or MCF directive, but it’s unsure whether those will be honored. Okay, so that would have been her first choice because then you don’t have to hasten your death earlier than you want to. But it’s not clear that that would have been complied with so her second, you know, she would like maid. But of course, as you just described, she’s not eligible for maid. So she started to vsed. Okay. Now she could have just kept going to the V said and following the Greg van der Keefe, she would have been dead in nine days or so. But why do it for nine days? It’s nine long days. Right.

Eric 36:14

So instead 20 could be 20 or 20.

Thaddeus 36:17

Right.

Hope 36:18

It couldn’t. If she’s really doing D said, it’s not going to be 20. That would be.

Thaddeus 36:22

That, that’s dehydration level, but it could be 12. Okay, but basically she’s about two days in the maid. Clinicians certified her as terminally ill because of the V said. Right. As Greg described at the conference, you’ll be dead in nine days. Nine days is way less than six months. Right? So you are terminally ill. You are probably going to be dead in under six months. You can sign your name on the dotted line for that. And, and you have capacity. And so you’re eligible and you’re an adult and you’re a resident of Oregon. So yes, you’re eligible for maid. Here are your maid drugs. The reason we hadn’t heard about this before is because originally all the states had a 15 day waiting period, which means you have to make a request, wait 15 days and then make the request again. Well, if you became eligible for maid because of vsed, as Hope just said about you’re going to be dead before you can make your second request, you could be dead from VSED before you can make your second MAID request. But as California did, California dropped to 48 hours. Many, many other states dropped to zero. Right. No waiting period. At least if you can demonstrate that you’re not gonna make it to the end of the waiting period, it can be waived. So that’s why I think it’s possible. And it kind of came onto the scene more recently because the states dropped the waiting period, so that bridging is only relatively newly available as an option.

Eric 37:54

And Josh, you wrote an accompanying editorial with me, actually. But you are far smarter than me, so I’d love to hear your thoughts on this concept of made to vset.

Josh 38:09

Yeah, thanks, Eric. Yeah, and your contributions were invaluable, very important. So my concern is that if you’re going to be doing something that results in somebody’s death, you really want to make sure you’re above board about it. And so it if we. I wouldn’t look for a loophole around a law and I would say this is a loophole that plays on some ambiguity about what it means to have a disease that’s incurable or terminal or irreversible.

Eric 38:41

Because. Right. The law says how they’re defining a terminal disease is something that’s incurable and irreversible that will cause you death in the next six months.

Thaddeus 38:50

Yeah.

Josh 38:50

And so the way V said’s being construed here is that dehydration has become irreversible and incurable, but by nature of the patient’s choice, it’s not going to be reversed because they’ve chosen it to be so. But if that’s the case, then why not just make the patient’s choice to be the thing that puts you in eligibility for this procedure? And then it could just be anybody. I mean, anybody who elects. I could walk into the office and say, I’m V setting within the past hour. My choice will inevitably result in my death in many days. And that’s what would qualify you. That strikes me as a loophole that gets around the spirit of the law with the safeguards that are built into it. Most states, as I understand them. And so if this is a concern like Thaddeus was describing before, the law should be amended rather than advising a loophole.

Eric 39:40

Thaddeus, your thoughts?

Thaddeus 39:41

I don’t know if I agree that it’s a loophole. I mean, so dementia is incurable, Right? I mean, it’d be great if we could cure it, but we can’t. So it is incurable. And her dementia is gonna cause her death in the next six months because of the way.

Eric 39:56

Oh, you’re saying. Because she’s doing vset.

Thaddeus 39:58

That’s how she decided to manage it.

Eric 40:00

But the dementia is not gonna kill her in the next six months. It’s the dehydration that’s gonna kill her in the next six months. And if you hydrated her, she wouldn’t be dead any. It would be curable. It would be like me saying, you know, I am not gonna take your antibiotics for pneumonia, so I have an incurable or irreversible disease.

Thaddeus 40:22

Big fraction.

Eric 40:23

I don’t. I just decided not to.

Thaddeus 40:25

Big, big fraction of MAID patients in California are eligible for MAID because of choices that they made. They made themselves terminally ill through their choices. It’s not some just natural organic process. They refused chemo. They refused antibiotics. I mean, so they made choices. And. But for their choices, they would not be terminally ill.

Eric 40:49

I’m going to disagree with you because, like, those people have an advanced cancer als. That is an Incurable, irreversible condition versus dehydration, Very curable, very irreversible.

Josh 41:04

And I think part of this also hinges on, I mean, if I think.

Eric 41:07

About it, very reversible, very curable.

Josh 41:09

If I think about filling out a death certificate and Thaddeus, I suspect you disagree with this, but if I’m filling out a death certificate on this particular patient, the cause of death is dehydration, and that’s the cause of death. There’s no additional thing beyond that. They didn’t die as a dehydration as a result of dementia like we typically think of people dying from dementia, even though I wouldn’t write dehydration on the death certificate and just a natural death. But I mean, if you’re going to die from dehuman dementia, you die from infection or malnutrition, dehydration, you know, these sorts of things we all know about. But in the case of a, in this case, I wouldn’t imagine myself writing dehydration caused by dementia when they vsetted into their death. That that’s not how I would imagine that’s going.

Hope 41:53

Like this is, this is all fascinating and all interesting and all that, but I think there’s a much more common issue than VSED as a bridge to maid. And that is, but, but linked and that is hospice eligibility as a result of vsed. And that I think, like there are a lot more people who are going to be affected by that. And we should talk about. Maybe we’ll talk about that next time.

Eric 42:22

But Josh, you actually talked about that in our paper. You describe it. It’s different, right?

Josh 42:27

Yeah, yeah, yeah. So I mean, as far as I know, I mean, in order to be eligible for hospice, right, you have to have a prognosis of less than six months. If the disease runs its natural course, regardless of what the disease is, it doesn’t have to be irreversible, it doesn’t have to be incurable. It’s just that the disease runs its natural course less than six months.

Hope 42:46

Now, I think, and I went to NHPCO to say this, that we now have data and we’ve tracked 20 patient, 20 cases in our own hospice that show that once a person starts vset for whatever their, whatever reason, whatever their prognosis was before, once they start it, 100% of the time they complete it. We’ve had no patients and there’s. And Rob Horowitz at the, at United University of Rochester has a similar, Their numbers are like 80 something percent, but similar.

Alex 43:26

It’s not 100%. I mean, we certainly heard stories.

Eric 43:29

And you had a case like this too, right, Alex?

Alex 43:31

I had a case like this. A person did die. But Guy Miko, who we’ve had on the podcast before, has had patients who have started the voluntary stopping eating and drinking. But then the person becomes delirious. The patient and ask for food and water. And the wife says, I can’t deny them this. I’m gonna give them this. And they’re back where they started.

Hope 43:51

Every now and then it happens. But there’s an over but your ability to prognosticate a person who says, I just started VSET yesterday. Our ability to prognosticate with VSET is better than our ability to prognosticate with any other.

Thaddeus 44:06

I mean, and for both maid or hospice, you only need to be 51% confident that they’re going to be dead.

Hope 44:13

So I think a much bigger concern is why is that person who has an overwhelmingly likely chance of dying in the next six months, why is that person being denied access to federal benefits in the form of hospice care?

Eric 44:32

And you feel like they are. People are, oh, I know that they are.

Hope 44:35

I know that they are. They aren’t at our hospice, but there are many, many hospices because the hospices require that they have of limited prognosis on the basis of their underlying illness, not on the basis of them undertaking vsit. And I think that’s actually, I think that’s actually a violation of their rights to their to access their federal benefits.

Alex 44:59

We should get Theo on. I’ll just interject quickly to say I think I said this on our prior podcast about eating disorders and palliative care, that I think we should have a low bar and a low barrier to entry for palliative care. People have serious illness, they should get into palliative care. We should have a higher bar for hospice. And we do. We have a less than six month prognosis and people who voluntarily stop eating and drinking. I’ve had a patient who did that and then enrolled in hospice. And I was perfectly comfortable with that, as was the hospice. We should have an even higher bar for medical aid in dying in places where it’s legal and that it should be medical aid and dying should be reserved for those people who are taking control of the timing and manner of their inevitable death. And I don’t see voluntary stopping eating and drinking is falling into that pathway. Theo, you’re up.

Eric 45:43

Wait. Can I ask one question? Thaddys, do you agree with what Alex just said?

Thaddeus 45:48

No, because I Think a lot of the VSED people, they’re both means of hastening death. Right. And frankly, almost everybody I’ve ever seen that uses VSED would have preferred maid. So, I mean, VSED is their backup.

Eric 46:04

Theo, go ahead.

Theo 46:06

Yeah, I just keep thinking about the person in each of Eric’s maid talks who’s raising their hand to say I imagine myself with dementia and that I would want access to medical aid and dying. I think this is speaking to the reason this is coming up is that it’s speaking to with the growing incidence of dementia that people want to envision that they can reassert some control in that situation. If they don’t have the V said to maid option, it seems like they do have still the option to file an advance directive for vsaid or for minimal comfort feeding, as Hope had mentioned.

Eric 46:38

Yeah.

Theo 46:39

And I guess I wonder the way that that seems to land with people is that that, as that had mentioned, is a little too long and brutal to go through, you know, the fully stopping eating and drinking. So I’m just wondering from your perspectives what the pathway should be for those people, which might just be that they don’t have the experiential knowledge to say they don’t want to live with dem before they have it. Or it might be that there has.

Eric 47:04

To be some lightning round question each of you have to answer. Theo, Josh, I’m going to start off with you.

Josh 47:10

Yeah. I think we should continue to take really good care of people with dementia. I haven’t had the chance to make this case robustly, but I don’t think we should intend our patients deaths. So we should care for them in whatever way we can. We shouldn’t intend their death. And I’ll just tag on real quick to Hope’s concern about hospices not signing on people that V said. I mean, that might be a concern around participating in quote unquote, assisted suicide, which I think is a misperception. I mean, you can walk along some aside somebody making a choice you disagree with and still palliate their symptoms and care for them. People do. I mean, patients do all the time. They disagree with things we recommend. And so I think there’s lots of ways to care for folks even if you’re disagreeing with the choices they’re making.

Eric 47:55

Great. Thaddeus.

Thaddeus 47:57

So first we need to use shared decision making with certified patient decision aid so the person makes a choice and they really understand what the maid is all about. And they’re not acting based on stigma or stereotypes, but they should have access to maid. It might be a little too early to give them access to advanced directive to maid until we see how things work out in Quebec, Spain and the countries that basically just started doing that.

Eric 48:23

Yeah, great. Hope, end us off robust research into.

Hope 48:31

Minimal comfort feeding, massive education, and consider what minimal comfort feeding for even moderate dementia might look like.

Eric 48:41

I love that in your paper. When you talk about minimal comfort feeding, you actually talk about the need for research around this before it’s like widely implemented. Is that right?

Hope 48:50

Absolutely.

Eric 48:51

Great. Theo, any last thoughts? No more questions. But last thoughts?

Theo 48:56

Oh, no. Just so grateful to have such a dedicated group of people thinking through these really difficult and challenging cases.

Eric 49:03

Hope, Thaddeus, Josh. Agree. All brilliant minds. Love having you on this podcast. Thanks for joining us. But before we end, maybe a little bit more Duran Duran.

Hope 49:13

Yes.

Alex 49:17

(singing)

Eric 50:16

Thank you all for being on this podcast. It was a pleasure. Love the ethical debate and thoughts. And thank you for everything that you’re doing.

Josh 50:24

Thank you all.

Hope 50:25

Thanks, guys.

Eric 50:26

And thank you to all of our guests for your continued support.

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Disclosures:
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