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Do healthcare institutions have a conscience? · Health Ethics Podcast

• 0:08
  Welcome to Health Ethics, a series of conversations with leading experts about ethical considerations
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  associated with health and healthcare, both locally and globally. I am Brian Pilkington,
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  Professor of Bioethics in the Department of Medical Sciences at the Hackensack Meridan School
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  of Medicine. This series, like its predecessor, which focused on the COVID
• 0:29
  nineteen pandemic, relies on the idea that challenging ethical issues are best addressed by
• 0:34
  folks from diverse backgrounds practically reasoning together, and complements the Health Ethics series with
• 0:41
  its panel of leading experts from medicine, nursing, politics, economics, philosophy,
• 0:47
  and the law. Thank you and enjoy the episode. Welcome everyone to
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  the podcast. My name is Brian Pilkington, and I'm a professor of bioethics
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  at the Hackensack Meritan School of Medicine. Those familiar with the COVID Ethics series
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  and I don't know a lot about the ethical issues that have arisen during that
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  time, and now that we've shifted to broader bioethical considerations, I'm so excited
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  that our very first guest in the new season is Professor Jason Wasserman, and
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  we're going to be talking about considerations of conscience as they affect institutions. Doctor
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  Jason Adam Wasserman is Professor of Foundational Medical Studies and Pediatrics at Oakland University William
• 1:34
  Belmont School of Medicine. He is also the founding director of the Center for
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  Moral Values in Health and Medicine and lead the Holocaust in Medicine Program. He
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  co authored the book Social and Behavioral Science for Health Professionals with Brian Hinnot,
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  which was published by Roman and Littlefield in twenty twenty, and has published numerous
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  articles in journals including Social Science and Medicine, Pediatrics, JAMMA Pediatrics, American
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  Journal of Bioethics, Hasting Center Report, Mayo Clinic Proceedings, and the New
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  England Journal of Medicine. Jason, thanks so much for joining me today.
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  Oh thanks so much for having me. I appreciate it. So the topic
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  we're going to talk about is institutional conscience. Before we get into the nitty
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  gritty, what you know for students interested in bioethics or medical students other health
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  professional students who listen to the podcast, what originally turned you on to this
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  topic? Yeah, So, I mean, I think it actually traces back
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  to some of how I got into bioethics generally. And I'll try to be
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  brief, but I had an interest in bioethics dating back to high school when
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  I did Lincoln Douglas debate, and that played itself forward as I majored in
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  philosophy with a concentration in ethics in college, and then I got a little
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  bit worried about the abstract nature of philosophy and also the job market, to
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  be frank, and so I decided to move into medical sociology for my graduate
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  work. You know, I was interested in the theoretical aspects of what I
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  was doing, but I was also quite interested in what was actually happening on
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  the ground, and so I wanted to make a more empirical look at some
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  of the kinds of things that I had been studying as an undergraduate. My
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  master's work actually was in racial differences and attitudes toward youth in Asia, right,
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  so taking something that's obviously been long discussed in the bioethics realm from a
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  normative point of view and actually doing some empirical work around that. And so
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  my master's and PhD are both in medical sociology, and then as I got
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  into my early years of my career, I, you know, just kind
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  of gravitated increasingly back towards bioethics. I was a tried and true medical sociologist
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  early on, and then increasingly got back into kind of bioethics more straightforwardly.
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  But where that kind of gives you an answer to your question about the topic
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  of institutional conscience is I'm really fascinated with where the realities of clinical practice break
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  bioethics models and you know, kind of quoting my colleague Gabe Brahman, who's
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  on the paper with me when I say that, but fascinated with where,
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  you know, our best practices and our sort of definitions and our concepts either
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  don't give us a lot of information about how to proceed, or they seem
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  wrong or not fit for the realities of the situation. And so I'm always
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  kind of well, at this stage of my career, I'm kind of using
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  my clinical work to reflect back on how I think some of our you know,
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  models and heuristics need to be changed and revised, and that that kind
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  of general drive is what's given rise to most of my work in the last
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  you know, five to ten years, including this paper, I just look
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  at the landscape of how things are going with respect to legislative and judicial overreach
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  in terms of how patients are treated and how what those sort of rights are
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  of surrogate decision makers, including some bad cases that we've had in our own
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  hospital on this account, and I started wondering about the sort of rights of
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  physicians in these cases, and you know, that kind of led us to
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  the conscientious objection space, and then we started trying to unpack whether conscientious objection
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  to patients with profound neurological injury is legitimate. And there's a lot I'm sure
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  we'll unpack about that, but it really really came out of situations we found
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  ourselves in in a clinic where it seemed like what was happening on the ground
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  was wrong, and the tools that we had to deal with it, like
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  the concept of futility, didn't really get us very far. And I wanted
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  to explore what other kinds of conceptual tools needed to be developed that would help
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  us really helpful background for student zeenary one and the idea of the kinds of
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  situations that might break our standard bioethics model I think is interesting, and we'll
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  have to get more into that. The paper that you're mentioning is out in
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  a job, are forthcoming an a job? And the title for those and
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  we'll stick this link on the page is conscientious objection to aggressive interventions for patients
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  in a vegetative state. Excellent. Let's take a step back before we get
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  into the nitty gritty of those arguments. A quick and sort of dirty definition
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  of conscience institutional conscience. When I hear conscience, I think one thing.
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  Or conscientious objection when I hear institutional conscience, I'm not totally sure. So
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  for folks who are coming to the second idea a little new, give us,
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  yeah, give us a starting point. Yeah. So, conscientious objection
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  is kind of well well traversed territory and bioethinks there's quite a bit of work
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  on it, and it basically involves situations in which individual typically individual providers,
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  have moral objections to something that nonetheless falls within the standard of care. Often
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  these are religious objections. They do not have to be they simply have to
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  be. They just have to reflect the deeply held values of the objector.
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  And so we typically talk about conscientious objection in cases, for example, where
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  someone doesn't want someone has a moral objection to something like abortion or you know,
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  the sterilization, and those fall within the standard of care, but someone
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  may have a personal moral belief that it's wrong, and conscientious objection is their
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  right to say no to those things, and though they fall within the standard
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  of care built out around that in the bioethics literature, are some best practices
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  right that the person exercising conscience should do so transparently. They should disclose that
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  it's a conscientious objection and not make some other excuse. In other words,
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  they should be honest about their reasons for refusal. It's held in a bance
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  and emergencies. You can't consciously object if you're the only provider able to provide
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  that service and it's an emergent type of situation. And then there's some more
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  and those are a couple of at least the really widely agreed upon standards,
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  and then there's some stuff that's a little bit fuzzier in the literature. In
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  my opinion, One is what the limits are in terms of what can be
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  objected to. And you know, one way in which people have solved this
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  problem is to say that people can object to procedures but not classes of patient.
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  So you can object, for example, to procedures that result in the
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  sterilization of a patient, but you shouldn't object to procedures on female patients or
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  from this particular group or that. Right, And that's I think a pretty
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  good piece of guidance, But it doesn't hold up under all conditions. So
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  you can think of examples where it may be ethically permissible to object to kinds
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  of patients, And the case of neurologically injured patients, that's sort of what
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  we have, right, we have someone who's likely to be in the case,
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  we talk about someone who's likely to be in a permanently vegetative state,
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  and that's a kind of patience. So in the objection in the case,
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  and I guess we'll get further into this is really around doing a procedure for
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  that type of patient. And so where that sort of interested me is that
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  the people procedure distinction is a great starting place. It clearly rules out certain
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  kinds of objections as deeply unethical and discriminatory, and yet there's a great space
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  in which kinds of cases may or may not be discriminatory in that way,
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  and that's what we kind of wanted to explore. Let's take sort of a
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  related step back, so that gives our audience a good feel on conscience,
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  and you know, you've laid out the realm, or at least the generally
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  greed upon points. What's your take on institutional conscience, because that seems like
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  a different kind of thing. Yeah, So, I mean, like,
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  I think, I think there's pretty widespread agreement that individuals can exercise conscience.
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  There are there are conscience nihilists out there that think that people should never do
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  that or almost never do that. Jillian cevilesqu for example, is you know,
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  sort of appears deeply opposed, but even in his writings, there's some
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  exceptions where he allows for conscience. So there's very few that's there's really almost
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  nobody that doesn't recognize conscience at at least some level. That's at the individual
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  level. Institutional conscience would be the right of an organization or a group to
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  collectively exercise a moral objection, right, So it's just it basically changes the
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  level of scale at which the objection is occurring from the individual to the institution.
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  You know, you know, hence the name that it brings on board
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  all kinds of you know, I don't know on to logical questions, right,
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  and whether institutions are the kinds of entities that can even have conscience,
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  whether that even makes sense to say, And I think it seemed when you
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  ask that question, I think it seems to people at first blush that the
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  answer is not that. And there are people that have written this way that
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  conscience is a matter of human thought, human feeling, human moral orientation,
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  and therefore is resides within individuals and is a fundamentally individual disposition, and so
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  that it doesn't make sense to think that an institution collectively can have conscience.
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  But then if you step back and you look at our institutions, right,
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  many of our institutions are organized around core commitments to value, you know.
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  And you can see this probably best in religious healthcare institutions, religiously oriented healthcare
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  institutions, faith based hospital They have very clear, articulated moral commitments, and
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  they're not merely moral commitments of individuals working there. In fact, many times
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  the individuals working there don't fully share the moral commits of the institution, at
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  least from a religious point of view, and yet the institution itself, as
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  a collective entity, is organized around these core values. And so while I
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  think there's something that seems at first blush to be ridiculous about the notion of
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  institutional conscience, when you actually start looking at our institutions, they are organized
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  around deeply held values a lot of the time, especially in healthcare. And
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  that holds not just for faith based institutions in healthcare, but for secular ones,
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  which are organized around even just basic commitments to patient care, to well
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  being, if not deeper, more articulated commitments that they have. If that's
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  the case, then institutions should be able to at least theoretically gribe things that
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  they object to on the basis that it conflicts with their moral commitments. And
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  that is institutional conscientious objection. Why institutional conscience? And why not something like
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  I'm trying to understand the bounds of the claim. Why not say, Okay,
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  look, everyone's heard of mission and visions. You're part of an institution.
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  Everybody's mission planning things and all that sort of stuff. Why not think
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  that a mission for an institution? What sort of work does institutional conscience in
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  bioethics and healthcare practice. Does that give us something extra? Right? What
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  does it do that? Maybe claims of mission or vision don't because the way
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  you laid it out, and this is super helpful, I see the clear
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  comparison between you know, sincerely held beliefs and core values. I mean,
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  as you described institutions, I think that can fit. Why not just run
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  with mission and as opposed to this? Yeah? Well, I mean I
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  think the mission, the mission, vision, values and goals statements from corporations
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  or other institutions probably do point at the core values of that institution that might
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  map the conscience. But I don't think that they're always co extensive. Right,
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  So the mission, vision values of an institution may reflect all kinds of
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  different commitments that they have, and only some subset of those might be deeply
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  held moral commitments around which they want to object to kinds of intervention, for
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  example, in the case of hospitals. So yeah, I'm willing to I
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  think that they overlap. I think they make point in the same direction.
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  But insofar as conscience acts of conscience have to be rooted in deeply held values,
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  I want to say that there's at least some space in which the values
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  that form the basis of acts of conscience may not be co extensive with the
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  mission vision value statements of institutions. And then I also just want to say
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  in a much more practical way, as we all know, those mission vision
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  value statements can often be quite superficial, non actionable, arguably not even that
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  well thought out. And so I'm hesitant to say, oh, we can
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  always look to mission vision value statements to get at the deeply held values of
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  the institution. Not sure that's always true. I'm not sure they're always co
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  extensive. Well, take, for example, a hospital has a mission vision
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  value statement, it probably articulates core goals of medicine. But whether or not
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  it does, insofar as it's a hospital, the core goals of medicine to
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  me, are, you know, right there at the center of its deeply
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  held moral commitments. And that's the epicenter of any kind of action the on
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  behalf of conscience. I think if we grant or you know, if we're
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  just persuaded by the arguments, institutions have consciences and you know, could avalue
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  themselves of I guess, the protection of conscientious objection. How are we to
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  think about those institutions relative and you sort of mentioned this earlier, relative to
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  the fact that they're made up of lots of members, all of who might
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  not agree with those core values. How does the sort of disagreement get worked
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  out? Is it that? Well, once we recognize that institutions have consciences
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  properly, then if you don't go in for those values, then you shouldn't
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  be a part of that institution. Can indivn duals conscientiously object relative or with
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  respect to the institution that has its own conscience? I mean, how do
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  we think about the institution not as individuals making up the institution, but as
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  another entity of itself? Yeah, And I think there's really two interesting questions
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  embedded in there. The first is like, how do we think about the
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  relationship of these two kinds of things, institutions and individuals, and you know,
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  how conscience relates at these different levels of scale. And there I think,
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  you know, we can appeal to some basic sociology, which is that
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  groups are more than the sum of their parts. That you know, the
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  entire basis of the sociological discipline is that social structures have an existence that is
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  does not reduce merely to the membership. Right, there are the individuals.
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  Right that, groups are entities that have unique characteristics aspects, actions, and
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  existing within a social fabric that can't simply be defined as each individual clumped together,
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  you know. So this has been kind of well established in sociological literature
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  and theory, you know, since the dawn of sociology, going back to
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  Campton Darkhan. So I'm pretty well persuaded that institutional conscience is distinct from the
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  consciences of the individual people within it, right, that that it's a distinct
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  phenomenon. Now, what does that mean for the exercise of institutional conscience and
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  the exercise of individual conscience, and especially when maybe they don't align. I
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  think it means a couple of things, depending on whether you're talking about refusals
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  or conscientius refusal or conscientious provision. On the conscientious refusal side, institutions,
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  obviously, individuals within institutions can conscientiously object even if the institution doesn't have that
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  particular objection. So, for example, Catholic physicians within our secular hospital can
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  refuse to do tuber legations or provide birth control or whatever. That's pretty well
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  established. There's an asymmetry when it comes to provision currently. Now there's a
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  big debate about whether there should be, but let's start with where we're at
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  currently. If you are a physician at an institution that exercises a conscientious objection,
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  say you're a non Catholic physician at a Catholic institution, then you do
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  not have the right to conscientiously provide something that is objected to by the institution.
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  Right So, for example, even if you have a deeply held belief
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  that one should prescribe birth control, if you're doing so under the auspices of
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  a Catholic employer, you're not allowed to do that. I think there's a
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  real reason to have a debate about that and whether that asymmetry stands up to
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  scrutiny. And my Colleagier Bruma has done quite a bit of work on this.
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  I think in some cases the asymmetry probably does stand up to scrutiny.
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  In cases where the provision by the individual that is objected to by the institution
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  would require high degrees of complicity of that institution, meaning a lot, using
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  a lot of their resources, a lot of you know, then I think
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  there's a reason that the institution should say no. You can't as an individual
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  defect from the institutional position on this. I think there's also times in which
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  that's not the case, and institutions should allow individuals to defect, not just
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  in terms of refusals, but in terms of what they want to provide.
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  Again, that's diving into a whole separate literature in the conscience space. But
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  I think even that debate shows that this notion of conscience is exercising itself at
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  multiple levels of scale, and we've just only been paying attention to it in
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  the literature at the individual level, and we've kind of just you know,
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  the exercise of institutional conscience is all over the place, right, I mean,
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  we see it all over the place. We've not really subjected it to
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  analysis in this way and not really extended or even raise questions about why religious
• 19:00
  institutions seem to get a pass on being able to exercise collective conscience over decisions
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  and as particularly refusals to provide things within the standard of care, and secular
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  institutions haven't explored this at all, as though they have no value commitments in
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  this space whatsoever. A really nice consistency point and highlighting the asymmetry there is
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  good, and yeah, I mean I have forty seven different questions for you,
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  just just generally unconscious and considerations, more responsibility and all that. But
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  I'm going to do my best to sort of stick within the institutional conscience framework.
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  But I can't not ask this one. So there's an epistemological question I
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  think that hangs here, which is, how can we tell if someone has
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  sincerely or deeply held beliefs? And I know lots of folks have talked about
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  this. What informs this question relative to institutions is conversations among lots of healthcare
• 19:51
  folks and institutions around most recently vaccine mandates and some places had you know,
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  folks who have to prove and I know is a long history and literature that
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  you have a sincerely held belief. I have wonky views. I don't actually
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  think that's I think that puts institutions in a really challenging situation epistemically, to
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  think that you can accurately figure out what a sincerely hell belief is. So
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  that's that's my own bias. But it seems like it might even be more
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  challenging for an institution, or maybe it's less. Maybe you read some value.
• 20:22
  So can you help folks with the epistemology here. Yeah, it is.
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  It's tough, right because people can you know, as as we've seen
• 20:30
  in the vaccine refusal space. You know, even even when we set up
• 20:33
  standards to try to establish what that bar for sincerity is, we're simultaneously coaching
• 20:40
  people on what to say, and then they just they just give us the
• 20:44
  narrative. So you reject a request for an exemption on that mandate on the
• 20:49
  grounds that the person didn't establish and you know, sincere enough belief and they
• 20:53
  just that you're basically giving them a recipe for how to establish said belief.
• 20:59
  So it is, it is a challenging question. I think it's actually less
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  challenging at the institutional level because the value articulation is going to have to be
• 21:07
  more explicit, and we're dealing with fewer entities, right at least when it
• 21:11
  comes to hospitals, right, So, unlike you know, where we have
• 21:15
  all of these little these players running around in the individual space and then they
• 21:19
  encounter this situation and they want to object to it. Well, first of
• 21:22
  all, one of the best practices of conscientious objection is it should be stated
• 21:26
  in advance, the reason being that you want employers to be able to sort
• 21:30
  of game plan for the fact that you might not want to, you might
• 21:33
  refuse to do something, and they want to have coverage for that service.
• 21:37
  But nonetheless, in the individual space, you have all these different players running
• 21:41
  around encountering these situations and then saying I want to object to this on the
• 21:45
  grounds of conscience, and that could be pretty tough to measure. And you
• 21:49
  know, especially if we're going to have a sincerity criterion, I think in
• 21:52
  the in the institutional space, it's it's it's actually somewhat easier because we're going
• 21:59
  to have to we're going to we're going to be subjecting these larger entities to
• 22:04
  scrutiny on this point. And I think, you know, for example,
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  I don't think anyone doubts the sincerity of Catholic institutions as pertains to the question
• 22:14
  of abortion. And it's not hard, you know, it's pretty easy to
• 22:18
  see the sincerity of that because there's all sorts of theological analysis and doctrine dating
• 22:27
  back, et cetera. They've they've worked out a lot of their beliefs and
• 22:32
  their commitments on this stuff. Agree with them or disagree with them. The
• 22:34
  trail of sincerity is pretty clear. So where while I'm maybe even I'll come
• 22:40
  off a little flippant about the asymmetry between faith based institutions and secular ones,
• 22:45
  I do think that secondar institutions have, if they wanted to exercise conscience,
• 22:48
  have a long way to go in terms of articulating these deeply held values and
• 22:52
  laying out that sort of argument. And I think that they should have to
• 22:56
  do that. But when they do that, I think there's at least some
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  evidence of sincerity built into that process. I don't think it would be unstable
• 23:07
  and sort of constantly changing the way it arguably could be with individuals, right,
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  and individuals can just oh, I object to that, I object to
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  that, and it's tough to track down the sincerity of each of those objections.
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  But I think in the case of institutions, it's going to be a
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  better defined value set that maps to kinds of procedures that they just don't do.
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  It's going to end up by the nature of the fact that it's being
• 23:30
  done as an institution being much more explicit, much more transparent, and subjectible
• 23:37
  to scrutiny. And so I actually think the sincerity test is probably easier at
• 23:41
  the institutional level, just by virtually of the constraints built into institutional conscience.
• 23:48
  With a few minutes we have left, I want to turn to your more
• 23:51
  recent work on conscientious objection to aggressive interventions for patients in a vegetative state,
• 23:56
  and one of the big questions, so you can hit this and then lay
• 23:59
  up the argument, go through the case sort of whatever you think it's clearest,
• 24:02
  but one of the big ethics questions that comes in is whether exercising conscience
• 24:06
  at the institutional level, And you can run it at the individual too,
• 24:08
  if you like, constant some sort of discrimination. Is it disability discrimination when
• 24:12
  involving likely permanently unconscious patients. Well, so, kind of the way I
• 24:18
  started was to say that a lot of the cases I encounter my clinical work
• 24:21
  are giving rise to the theoretical questions that I'm most interested in, and that's
• 24:25
  kind of how this unfolded as well. So the first paper that's that's out
• 24:30
  an a job, it's forthcoming, but it's all available online right now,
• 24:33
  really involved the case where we had a profoundly neurologically injured patient had all of
• 24:37
  the predicates of being very likely to be permanently unconscious, and I know that
• 24:44
  in the contemporary landscape people are hesitant to say that. Right with the fin
• 24:48
  stuff that comes out in twenty fifteen, there's there's increasing respect for the rehabilitative
• 24:55
  potential of people with brain injuries, and I think that that's very correct.
• 25:00
  I think that's correct. We should we should be have more humility about our
• 25:03
  ability to make prognoses as pertains to people with brain injury. They've clearly the
• 25:08
  data shows they have more rehabilitative potential than we have historically given them credit for.
• 25:12
  And all of that said, the data is still quite clear that there
• 25:15
  are predicates of permanent unconsciousness that make rehabilitative potential and recovery of any consciousness exceedingly
• 25:23
  unlikely, to a degree that in other spaces we would have no problem making
• 25:29
  clinical judgments on the basis of those probabilities. Right, So, when a
• 25:33
  patient is anoxic, for example, in an oxic injury versus a traumatic brain
• 25:37
  injury confers a very poor prognosis with recovery. The more time spent anoxic makes
• 25:44
  that recovery even less likely. The other kinds of things like status eplecticus,
• 25:48
  lasting greater than I think it's fifteen minutes within it twelve twelve hours of emission.
• 25:53
  I mean, I'm maybe messing up some of the details here. All
• 25:56
  of these things are proven to be predictors of potential for recovery. In the
• 26:02
  case that we had, the patient had all of the all of these predictors,
• 26:06
  and it foretold of almost certain permanent unconsciousness even early in the course.
• 26:12
  Again, a lot of people say, oh, you can't tell for a
• 26:15
  month. It's just not true statistically that there are early clinical predictors that would
• 26:22
  confer levels of probability that we would have no problem being, you know,
• 26:26
  acting on in other contexts. So the neurological injury space is becoming a little
• 26:33
  dogmatic on this point. And I just want to be clear, there are
• 26:36
  statistically valid predicates of permanent unconsciousness. Doesn't mean it's one hundred percent nothing derived
• 26:41
  from any study ever is. But this guy was basically highly, highly likely
• 26:47
  to be permanently unconscious. But his daughter had an account of why this would
• 26:52
  be a sufficient way to live for him, that that it mapped to his
• 26:56
  religious values, and that she wasn't and she didn't come at it from a
• 27:03
  you know, having a difficulty company to terms with the prognosis or anything like
• 27:07
  that. She understood the prognosis and said that that's okay. I still want
• 27:11
  him to live. And we argue in the paper more extensively that therefore some
• 27:17
  of the measures like tracheostomy and PEG that would sustain his life were ethically permissible
• 27:23
  and they fall within the standard of care. And I think for people who
• 27:27
  are not brain dead but neurologically interest that these kinds of interventions can and do
• 27:32
  fall within the standard of care, particularly if they're consistent with the goals of
• 27:34
  the patient. That was the case, and yet we had an e int
• 27:37
  who basically said I can't do the tracheostomy and wrote in the note in good
• 27:42
  conscience and claimed that the intervention was futile. Now, as most of us
• 27:48
  know and any medical students listening to this, futile or the word futility is
• 27:53
  perhaps the most abused term in the clinical space. This was clearly not futile.
• 27:57
  The tracheostomy appsly would protect the airway, mitigate the swelling and a demon
• 28:03
  in the swelling of the tongue and the pressure ulcers from intubation, etc.
• 28:08
  It was not a futile intervention. But it raised an interesting question insofar as
• 28:15
  this is within the standard of care and not futile and not clearly inappropriate,
• 28:19
  could the physician conscientiously object? And as we've sort of worked our way through
• 28:25
  that, our answer was, yeah, we think that they can. As
• 28:29
  you point out, the big question is does this constitute an unreasonable form of
• 28:33
  discrimination, a form of invidious discrimination? To borrow the language from the conscience
• 28:38
  statement by the American Thoracic Society. And it's an interesting question because recall that
• 28:44
  a lot of people try to work this problem out of what is legitimate active
• 28:48
  conscience versus a discriminatory and unethical active conscience by using that people procedure distinction,
• 28:53
  where you can object to procedures but not to classes of people. But this
• 28:57
  is of course an objection into a kind of patient, right, It's not
• 29:02
  this E and T doesn't object to tracheostomies. He objects to tracheostomies on these
• 29:07
  kinds of patients. And this is a case though, where I think there
• 29:11
  are at least three reasons to think it's nonetheless not in vidious discrimination, or
• 29:18
  at least that it's legitimate. It's a legitimate exercise of conscience, And it
• 29:23
  has to do with the fact that conscience as a tool in any profession,
• 29:30
  but especially medicine, does its work in whenever there's reasonable disagreements, right,
• 29:36
  And so Jason ebral has written a little bit more about this if people are
• 29:40
  interested, but it's it's spaces of reasonable disagreement where we have to appeal to
• 29:47
  conscience to sort of navigate our way through that. And I think there's reasonable
• 29:51
  disagreement on at least three fronts when it comes to whether or not one can
• 29:55
  object to tracheostomy for individuals very likely to be in a permanently unconscious. One
• 30:00
  is whether sustaining a life in a permanently unconscious state fits with the goals of
• 30:07
  medicine. And I think you can argue that it does. But I think
• 30:11
  you can also argue that it does not. Right that some ability to appreciate
• 30:15
  one's life is required by e consciousness is required to buy the goals of medicine
• 30:22
  to promote well being. Right, So if we think of the goal of
• 30:25
  medicine to promote well being, we could easily suggest that some level of consciousness
• 30:30
  is necessary to achieve that goal. I think people can dispute that. I
• 30:33
  think that people could say no. I don't think consciousness is necessary to that
• 30:37
  end, but I think there's enough reasonable disagreement about it that we should turn
• 30:41
  it over to conscience. And we can legitimately give space to conscience on that
• 30:45
  front, because there's reasonable disagreement about the goals of medicine as pertains to likely
• 30:49
  permanently unconscious patients. Secondly, I think there's reasonable disagreement about how much uncertainty
• 30:56
  is tolerable right And in the case of this patient, there was arguably some
• 31:03
  small probability that he had rehabilitative potential and could recover some consciousness. But that
• 31:07
  probability was so small that I think there's reasonable disagreement about how to act on
• 31:14
  the basis of that probability. I think if you look in other spaces,
• 31:15
  the probability that he would recover consciousness was so small that in other spaces,
• 31:21
  like say offering a surgery or a cancer treatment, we would have no problem
• 31:25
  refusing to offer surgery or chemotherapy with odds this small that there would be benefit.
• 31:30
  But I'm willing to say that other people could say no if there's a
• 31:34
  level of chance here that is reasonable to intervene on behalf of and that we
• 31:40
  should provide tracheosity. But because there's that reasonable disagreement about whether his odds of
• 31:45
  recovering consciousness were sufficient, I think again we have to appeal to conscience.
• 31:51
  And then the third thing, and perhaps the more interesting thing, is whether
• 31:53
  or not permanent unconsciousness constitutes a disability that deserves protection as a vulnerability. So
• 32:00
  the Americans with Disabilities Act is written in a very broad way to clearly cover
• 32:05
  patients who are technically speaking, patients who are permanently unconscious. It's a condition
• 32:10
  that impacts substantially limits one or more of their major life activities, right,
• 32:15
  And that's the sort of broad definition in the Americans with Disabilities Act. But
• 32:19
  there's actually debate about whether permanently unconscious patients are disabled in a metaphysical sense and
• 32:25
  therefore deserving of the kind of special protections that other disabilities can and should have
• 32:30
  in this landscape. And it turns out that even some of the architects of
• 32:35
  the Americans with Disabilities Act kind of hadn't meant to include permanently unconscious patients,
• 32:40
  and that even many disabilities advocates argue that disability rights advocates and disability ethicists argue
• 32:47
  that at least some level of consciousness is required from a metaphysical point of view
• 32:52
  to properly classify someone as disabled. Right, And I'm willing to say that
• 32:59
  both IDEs have a legitimate argument in that space, and there's but but where
• 33:04
  is that place is? Well, it places us in a space of reasonable
• 33:07
  disagreement about whether someone who is permanently unconscious should be considered disabled in a way
• 33:13
  that confers protection in terms of what interventions we owe them. And in that
• 33:16
  space of reasonable disagreement, again, we appeal to conscience, so that that
• 33:22
  that's the basic argument for favoring the legitimacy of this individual ants exercise of conscience.
• 33:29
  Now, he didn't do it well, so don't get me wrong on
• 33:31
  that, but he could have done it well, and people could conscientiously object
• 33:36
  to this. And we've actually written it into our futility policy at our hospital
• 33:39
  that even if we decide something is not futile, it may still be a
• 33:45
  potential space for an individual active conscience. And we've had multiplely antise sense conscientiously
• 33:50
  object in some of in some similar cases, basically all of those arguments that
• 33:54
  you can make that either this is not clearly discriminatory as an active conscience,
• 34:01
  or at least there's reasonable disagreement sufficient to give space to conscience as pertains to
• 34:09
  the interventions for patients very likely to be permanently unconscious. I think you can
• 34:14
  run all of those same arguments at the institutional level. Institutions can have the
• 34:17
  very same kinds of value commitments, or they could operationalize and inculcate into their
• 34:22
  institutions the very same interpretations of the right goals of medicine. They can have
• 34:28
  positions on what constitutes reasonable probability that would require action and what constitutes sufficiently small
• 34:34
  probabilities that would would require non act. And they could certainly take a position
• 34:39
  on whether patients who are permanently unconscious constitute a protected class of disabled individuals.
• 34:46
  And I think therefore institutions could end the same way that individuals do exercise conscience
• 34:52
  on this in this space and say, as an institution, we simply don't
• 34:57
  offer aggressive interventions to patients who are very very likely to be permanent unconscious.
• 35:04
  And that may sound kind of scary, because you know the idea that an
• 35:07
  entire that an institution's going to wholesale reject these interventions. But again I'll close
• 35:13
  with cautioning people, we already do this. We already allow faith based institutions
• 35:17
  to refuse to offer things that are well within the standard of care, that
• 35:21
  are often deeply urgent for patients that are life altering, and we allow them
• 35:27
  the space to exercise wholesale conscience claims at the institutional level. And so I
• 35:32
  think ultimately I see on the institutional front only three ways out right to make
• 35:37
  this all make sense. There's only three options. We can get rid of
• 35:42
  institutional conscience altogether and say that even faith based institutions cannot exercise moral commitments in
• 35:47
  the way that they have enjoyed doing. B We can say that only faith
• 35:52
  based institutions can exercise conscience, but that runs a foul of really the First
• 35:59
  Amendment and the inability of the state to define religion. We can't confer protections
• 36:02
  to religious institutions because we can't define what is a religious belief, and that's
• 36:08
  why the conscience space doesn't select out only religious belief but all deeply held value.
• 36:14
  So the asymmetry isn't sustainable, and the only other option is that secular
• 36:17
  institutions, insofar as they have value commitments, can exercise conscience in the very
• 36:23
  same way that faith based institutions do. To me, that's the only tolerable
• 36:28
  way to resolve the inconsistency that we currently have. Super helpful and the points
• 36:31
  about consistency are will taken. In fact, for the medical students from the
• 36:36
  Hackensack Meritey in School Medicine who listen to this, we just had a session
• 36:39
  with probably more kant than they wanted, but sort of thinking clearly and hard
• 36:43
  about the importance of consistency in medicine and medical ethics. So great work.
• 36:47
  And again I've been speaking with doctor Jason Adam Wasserman, Professor of Foundational Medical
• 36:52
  Studies and Pediatrics at Oakland University William Beaumont School of Medicine. Really interesting stuff
• 36:59
  and important I think advances in considerations of conscious really think about institutions and about
• 37:04
  patients who might be right potentially discriminated. Again, so Jason, I really
• 37:07
  appreciate it. For everyone listening, We'll have links to the a job paper
• 37:13
  and other work that Jason's put out for those interested on our web page.
• 37:16
  And yeah, Jason, thank you so much. This was excellent. Hey,
• 37:20
  thanks for having me. I really enjoyed it. This podcast series is
• 37:23
  a production of the Health Ethics Lab, and I am grateful to colleagues in
• 37:27
  the Department of Medical Sciences, the IHS Library, and the Hackensack I'm ready
• 37:30
  in the School of Medicine for making this collaboration possible. To learn more about
• 37:35
  our work or to engage with the series content, reach out to me Brian
• 37:38
  Pilkington at Brian dot Pilkington at hmh N dot org.