SHE Pod Season 3 Episode 4: Anson Fehross on Proxy Decision Making

2:39AM May 11, 2022

Speakers:

Kathryn MacKay

Anson Fehross

Keywords:

decision

proxy

thesis

people

jehovah

patient

values

advanced care planning

advanced directives

parents

proxies

wishes

autonomy

person

required

idea

appoint

witnesses

problems

issue

Hello and welcome to the SHE Research Podcast. I'm your host Kathryn McKay and today I'm joined by Anson Fehross to discuss Anson's recently completed, PhD dissertation, 'Valuing for Others: Centering Values in Proxy Decision Making'. Hi, Anson.

Hey Kate how are you going?

I'm good. How are you doing?

Yeah not bad.

Good. Congratulations on completing your thesis.

Thank you, at long lost, all done. Quite a relief.

Dr. Fehross.

Yes.

Welcome.

Thank you.

So I'm excited to talk to you today about your thesis. I wonder if you can give us an overview, before we get into some of the findings from the conclusion?

Oh, for sure. I suppose the the overview would be. So substitute decision making is a pretty common way of making decisions in medicine, right? You... there are situations where people want to have a say over what happens to them once they lose competency to decide for themselves. So one way of doing this is the fabled Advanced Directive slash Living Will, there are all these problems with that so many authors and jurisdictions have favoured proxy decision making slash substitute decision making, they're basically mean the same thing, which is you appoint another person to make a decision on your behalf, on the basis, usually under the standard view of their deep familiarity with that patient and their wishes. My suggestion in line with a bunch of empirical literature is that that's inadequate. And instead, what we should be doing is suggesting... is appointing proxies on the basis that they value the same things that we do, and that means that they have greater insight and so on. And yeah, my thesis is an attempt to put that to work that idea out and show some of the implications and empirical I suppose you could say conclusions.

What got you interested in this topic?

Well, it's hard to say I mean, as long as I remember, at least in in, while I've been at university, I've been interested in bioethics, medical ethics, because of the deep impact (sic) can have on patients lives. But I suppose the ultimate impetus was that my parents are Jehovah's Witnesses. And as a result, you know, from as long as I literally remember had to have scepticism about the medical industry, I'm no longer Jehovah's witness, by the way.

(laughs)

Just to clarify, but yeah, Jehovah's Witnesses are this classic example and bioethics of individuals who are not necessarily served by doing things the default way in medicine, right? They refuse blood transfusions, and one of the ways that they've refused blood transfusions is via the use of advanced directives and proxy appointments. So yeah.

Yeah. And you said that the advanced directives have some serious flaws. Is that apparent in those situations? Or does it come out in some other way?

Yeah, in some ways, there have been I don't remember the legal, the legal reference. But there have been cases of people who write out these little, they're called Blood cards. They have these little things and say, I'm a Jehovah's Witness, I refuse this, this and this usually hold blood plasma, plate, platelets, red cells, things like that. They have these little cards, which they write out their wishes and sign at the bottom. But they've been these cases of people having signed it left in their wallet for two years, I know of at least one case it was in the literature of a Muslim woman who converted to being a Jehovah's Witness completed the blood card, and then seemed to drift away from the religion, but failed to remove the card from her medical documentation. So yeah, these are the sorts of failings that you can see in advance directives relying on just an inert piece of paper to express everything you want to say about a particular medical intervention is deeply inadequate, hence why we turned to individuals who can speak on our behalf.

Interesting. So I wonder if you can give us then a couple of the main points of argument.

Yeah, there's there's issues of time sensitivity, how recently was it completed? This is a common issue when it comes to people doing so called Do Not Resuscitate tattoos.

Oh, tattoos?

Yeah. Where they think that this in some way makes their decision more likely to be heeded, but at least from my impression, that's not necessarily the case. So yeah, there's time sensitivity problems. There's also problems about specificity. How specific was the Advanced Directive? Did you envisage this particular medical problem? And do you know about the results of your decision? A lot of people have very strong opinions about what should happen to them if they ever developed quadriplegia. But almost nobody has any idea what living as a quadriplegic is like. So, you know, the medical professionals arguably have a good reason to be sceptical of the validity of these documents as morally compelling.

And so what's your proposed solution to that?

Oh, get rid of advanced directives entirely!

(laughs)

Well, that's probably too strong. It's it's more like advanced directives can't model. That's where proxies come in. Because, at least on the standard view, they can draw upon their deep familiarity with the patient and come to a decision that the patient themselves would have made. My alternative view is that you don't necessarily need to make the same decision a patient would have made just so long as you're acting on the same values the patient would have wished to have acted upon...

Okay.

...were they able. Yeah.

Got it. How do we know?

Oh, God.

(laughs).

How do we know? How do we know what specifically?

Well, how do we know what they would have acted upon?

Oh, yeah, that's a common issue, especially with the standard view, because the standard view literally requires you to mirror the exact same decision that the patient would have made, and we've got all they... perform barely better than chance, right, I think the highest number I've seen reliably is around 68 to 69% of the time they get the answer, right. Which might sound somewhat impressive, but you know, that means about 30% of the time, they're not getting it, right, which by hypothesis means they're harming these patients. So we know that about the standard view under my account, you just need the the proxy to share the values of the patient. And then one would expect, right that this patient, sorry that this proxy, would thereby act in a way that's 'value congruent' is the term I use, right? So do... I open up my thesis with this question, right? My parents are both Jehovah's Witnesses. I'm not. What should I do about, about the fact that they one day could be rendered incompetent, and at least under the New South Wales law, I'd be auto-selected as their proxy, right? If they're both incompetent, then it goes down this this list and I'd be the one that would be picked out to choose on their behalf. And I make this point that I don't think I should because I don't value what they value. So I don't have the required insight to, to even guess what they would want. Meanwhile, if they picked a Jehovah's Witness, and I think importantly, a Jehovah's Witness who's like them, that means that they do have the epistemic insight required to basically say, Okay, well as a Jehovah's Witness, and this particular stripe of Jehovah's Witness, I think this is the best decision.. at least, that way, you've got some sort of, you can introspect, and on that basis, make decisions, which, you know, if any of your listeners are thinking, well, introspection is subject to challenge one of the responses is we reflect on our own values, this is just an extension of that.

I find that really interesting. Because even in that example, it kind of seems like you have an intimate understanding of what your parents value, even though you've, you don't value it yourself. And in a sense, you've kind of rejected it. But you still have quite an intimate understanding of it. But you think that still because you don't actively value it, that you're not the best placed person so even though it because it kind of seems to me like you could counterfactually reason your way through.

I think I can probably get some of it. But you know, I'm, I wouldn't say constantly surprised, but fairly often surprised by their positions on on things I didn't expect. So I mean, this is a, this came up a long time ago, but I didn't see it coming. My mum is effectively... at least according to her morally opposed to cremation. Oh, and I'm like, what, where that come from? This is like, I mean, I know, some old school Catholics have that position, but I didn't expect a Jehovah's Witness to have that position. So yeah, sometimes I'm surprised. So yeah, I mean, I do have kind of a repository of positions that my parents hold on my head, I could probably trot out. But the issue I guess, is whenever there's ambiguity, so the famous example in the case of Jehovah's Witnesses, okay, so you're anti plasma, you're anti whole blood, blah, blah, blah. What about interferons or other medicines that are made up of a fraction of a fraction of blood? Is that off the table as well? And the issue I guess, is even if I get my parents to recite to me all the cases, like all the various decisions about all these possible interventions, there are always ones that I'm not actually sure. So I think I give an example in the thesis of a epidural blood patch, which is basically, you get a cord like a tube of a tube leading from into part of their spine to relieve particular kinds of headaches. Right. But that requires you to effectively move blood into that part of the spine. The issue there is some Jehovah's Witnesses, don't all have an issue with the what happens if the blood flow is disconnected for a second? So I did a little experiment, I suppose. Maybe I should explain why that's an issue because some Jehovah's Witnesses think if, for instance, you're in a dialysis machine, and the machine stops for like 30 seconds, and then starts up again. And now the bloods moving back into you, you should remove it, because now it's basically like a blood transfusion.

Oh, wow, okay.

Yeah. I mean, not all to be clear, right? So it's a little experiment, I was like, alright, well, we explained to my parents is epidural blood patch and see how they react. And my dad, neither of them were particularly bothered by this. And I was betting that they would be. So this is why I think I'd be a poor, poor choice. Because all that knowledge of what my parents have chosen, and the reasons they've given clearly don't provide me with the required level of insight to predict how they would react in novel situations. And that's, I think, reasonably universally accepted is required, which is why so many people in this space have suggested that the best response to these problems, proxy directives under the standard view and advanced directives is to give up and just move to something like welfare as.. welfarism, best interests, some sort of advisory role of the friends and family of this person. But yeah, I'm trying to thread away to say that you can still maintain respect for autonomy, but you do have to give up on the idea that the exact decision that the patient would have made, is made by this proxy.

Right. And so the proposal, can you repeat it again? You said that its values?

Under my model?

Yeah.

Okay. So my position is that one should appoint proxies on the basis that they share values with you, in the same manner as you which requires some unpacking in a thesis, obviously, but the basic idea is, just to give an a, a, I hope, intuitive example. If you're the stripe of Catholic who thinks that Vatican II was a move towards heresy, basically, right, like if you think that match should be held in Latin and so on. Your best bet for a Catholic proxy under my account isn't just any Catholic, it would be similar if someone... similarly old school on that perspective, and you know, you wouldn't pick one of these hippie dippie New Agey Catholics who think that abortion is probably fine, you know, you pick someone that shares your outlook in a reasonable amount of detail.

And that person clearly might not be the person who's most closely related to, you.

No, yeah, that's, I think that's actually a virtue in my account. And like, I think, right, because I do talk about domain specificity, right. So some people might be ideal for you when it comes to certain types of decisions, such as, I don't know, end of life care, but maybe they have, maybe they're less willing than you to take on, I don't know, experimental treatments or something like that. So it'd be a good idea then to not give this person authority over all decisions within your life. So you can pick and choose, and you can kind of do that now. But I guess the idea is highlighting how important that is that it will be an error to think just because somebody shares your views in one domain that they thereby share them in all. All

Right, right. So you should appoint perhaps more than one proxy, it should be like a team.

Yeah. And that's the second half of the thesis to suggest that... well second, more like final third, I suppose, is the suggests that the best way to combat various problems that we've isolated when it comes to individual decision making, because proxy is - one of the one of the theories as to why proxies under the standard view perform so poorly, is because of the influence of things like unconscious bias, emotion, slash stress, you know, just making errors, for whatever reason. And generally, there's this push from cognitive science, cognitive psychology, things like that. To basically point out the best solution to those issues is to move away from the individual decision maker and to move into a group setting, by appointing multiple people that can make this decision - sorry that collaboratively and discursively make this decision, right, they have to argue with each other to come up with a decision as to what's best. And the evidence seems to show that when you perform that you, you get de-biassing. As a result, people are less likely to act on biases, other people are attuned to picking up people on biases, and things like that. So yeah, my suggestion is, you don't want to just... one shouldn't want to appoint a single decision maker, you should, as far as possible, find multiple people who share your values, who can then argue amongst themselves as to what's best for you while you're incompetent. Given that they all share values, they're going to take these values as motivating, and then the question will thereby become: okay, how do we put these values into action in a way that we all find acceptable? So long as as I put it, the decision is value congruent, I, it either respects or furthers the patient's values. That makes it a morally, sorry, a normatively authoritative decision, it's motive... it should be motivating to others.

I want to ask you something that you might not actually touch on in the thesis, but I found it kind of intuitive, or intuitively right I guess when I read something a while back about how in situations like this, where a person becomes unable to make their own decisions, but temporarily, so say they're in a short term coma or something like that. When they come out the other side, or it might not even be a coma, it might be just like a kind of acute situation where you have to have a surgery or something like that, and you're not able to consent to it yourself. People have sometimes reported that the person who made the decision for them didn't make the decision that they would have made for themselves. But that because they care for the person who made the decision for them. They're kind of happy about the decision anyway. And it's linked to this love and affection that they feel for the person who made the decision for them. And I actually do find that kind of plausible, I feel like...

Yeah.

I would probably feel that way myself. And I wonder what you think about that having done so much more research on this than me? And what, how this bears on your value congruence?

I mean, how to put this... given on I think, Angus Dawson points out the you know, I'm deeply committed to autonomy, right? Which I am, and that would mean that - how do I put this - one has to be happy with that sort of, like, whatever the patient thinks, however, the patient wants the decision to be made. That's respect for autonomy, then right? If if the patient doesn't really care about whether or not their decisions are exactly mirrored, or maybe they very much do. You don't respect the autonomy of... autonomy by imposing a decision procedure on this person that they would disavow or not want. So I'm kind of with... so John Hardwick is one that's written on this, basically suggesting that no, there there is nothing wrong with that, even though medicine has a issue, right. The idea is we tell people as acting as proxy... under the standard view, at least, you have to leave your values at the door, and you have to make a decision solely on the basis of what the patient would have wanted, without any regard as to what's best for you. But Hardwick points out well, what happens if the other patient would have wanted is what's best for you?

(laughs).

So, I mean, yeah, I think that's, that's right. But I do think there is a useful distinction to be made between a proxy decision and what we might call a deferral. And it strikes me that, you know, if we don't if what we care about is that the person making the decisions is making those decisions on the basis of a particular kind of motive, but we're not particularly bothered by what the decisions are. I think that's a distinct kind of phenomenon, maybe just as worthy of protection, and probably just as normatively motivating. But yeah, it's a distinct kind of phenomenon. I think I do talk about deferral a bit. But mostly to distinguish it, I'm not necessarily in favour of the idea that we should just go for deferral. But I also don't think that we should disavow it. Yeah.

Interesting. So we're coming to the end of our time here. I wonder if there's a sort of main takeaway message that you want to communicate through this project?

Oh, there's many, maybe I'll try to prioritise. I don't want to be one of these... So I guess, all right. One of the things I want to say in general is it was an error a while ago, I don't know when this started, I did try to find out but it's kind of lost to history. Maybe a actual historian could figure this out but you why we're so invested in the idea of getting people to make these kinds of decisions, right? To make to... for instance, in the UK during the COVID crisis, we had people going into nursing homes armed effectively with advanced directives and pressuring. .. and I use that word deliberately - pressuring elderly people who are at risk to fill out these advanced directives refusing care. And I think the reasoning behind this sort of thing is, is something along the lines of it's always a good idea to get someone to engage in advanced care planning to talk about their wishes and so on. I think that's probably not true. I don't think it's always a good idea. It certainly shouldn't be defaulted. Right? Like the idea of me being appointed my parents proxies even, even though I... my parents proxy, even though I don't share values and so on, you know, automatically, that's an issue. I think advanced care planning is important for people who care about what happens to them after they lose competency. It's hard, right? That's something we haven't emphasised enough. There's been all these efforts to make advanced care planning easier and easier. I think my thesis successfully shows I hope that no, this is valuable, but it's not easy. It's not. It's not the sort of thing you can just write a form or have a few conversations. It's an ongoing thing. The appointment stage, as I put it, for proxies would be an ongoing conversation, probably over one's lifetime, because it's an evolving thing, what one values and wishes and so on. So I guess the ultimate takeaway is, this is difficult, we should stop pretending otherwise, and we being by with us as medicine society. And instead, hammer the idea that for those who really care about this stuff, no, it is possible to to appoint proxies in such a way that one's interests are taken care of and autonomy is respected. But that's not for everyone. I hope that wasn't too rambley.

No, that's great. And it's super interesting. Thanks so much for speaking with me Anson it was really interesting, or thanks, cut, and we're looking forward to seeing some of your thesis in print at some point soon. That'll be great.

Yeah, that's the hope. Thank you.

No problem. And thank you everyone for listening to this episode of the SHE Research Podcast. You can find a transcript of our conversation linked in this episode's notes, and SHE Pod is hosted by me Kathryn McKay and produced by Madeline Goldberger. You'll find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.