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Justin Clapp: Oh, is it?

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Justin Clapp: Can you… yeah, now it's definitely on.

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Justin Clapp: Okay.

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Justin Clapp: That's good, so, yeah. Yeah, sure, okay. So I'll do an abbreviated version of this, because I'm more interested in hearing Dr. Klabs.

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Justin Clapp: Yeah, let's… Alright, alright, I'll do the whole thing again.

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Justin Clapp: So…

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Justin Clapp: My name's Colin Halverson, I'm faculty in the Center for Bioethics here at IU. This is the IU Ethics, Bioethics Grand Rounds, and I am happy to introduce Dr. Justin Clapp, who is a medical anthropologist and bioethicist. You guys may have heard this before.

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Justin Clapp: Who holds a doctorate in anthropology from the University of Pennsylvania, where he also received his MPH and is now Assistant Professor of Bioethics.

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Justin Clapp: Dr. Clapp's research examines interpersonal interactions in clinical settings, studying actual language use and everything from surgical decision-making to the anthropomorphism of fetuses in reproductive medicine.

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Justin Clapp: Through his research with patients and clinicians, Dr. Clapp demonstrates the critical importance of qualitative and empirical work in understanding behaviors and beliefs in healthcare encounters.

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Justin Clapp: He argues against what he calls the, quote, vicious abstractionism of clinical bioethics, instead arguing for us to ground our analyses in the concrete context and complex realities of actual healthcare practice.

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Justin Clapp: With this pragmatic approach, he has provided robust critiques of everything from informed consent to competency checklists to IRB's measurable metrics. Today, he'll talk to us about his work on the language of values and preferences in bioethics. Thank you for joining us today.

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Justin Clapp: You know, thing is, this thing… Hold that.

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Justin Clapp: Let's see if this works.

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Justin Clapp: Winking.

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Justin Clapp: Hello? Yeah? Yeah? Good. Should I clip it?

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Justin Clapp: Alright, go with that.

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Justin Clapp: All right, thank you for the invitation to visit and give this talk. Particular thanks to Colin for showing me around, schlepping me everywhere.

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Justin Clapp: So, along the spectrum from, like, a career retrospective kind of talk to a work-in-progress talk, this will be more towards the work in progress, and I'll give some broad context before I get into it, though. I'm an anthropologist by training, and I'm often torn between doing social science of bioethics, that is, turning the anthropological lens onto bioethics itself.

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Justin Clapp: versus doing social science in bioethics, that is, using anthropological tools to help along bioethical initiatives. And this talk is part of a line of work in which I'm kind of trying to do both, or to kind of thread that needle.

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Justin Clapp: Go.

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Justin Clapp: Specifically, I've been examining the ways in which bioethics views language and social interaction. For instance, I've argued that bioethics often tacitly views language as essentially a means for individuals to describe how they see the world to each other, a view which can obscure how uses of language derive their impact from social relations. And what I'll present today is really an extension of this argument.

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Justin Clapp: And so, the structure of this talk is that I'll first examine a particular tendency in how bioethics views language and social interaction, and then I'll explore some dynamics that play out in clinical communication that I think are in danger of being overlooked because of this tendency. And to do so, I'm going to draw on an ongoing ethnographic study of medical intensive care units.

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Justin Clapp: So…

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Justin Clapp: The tendency in bioethics that I'm going to discuss is a tendency to describe the social interactions undertaken in response to medical events of various sorts as being essentially matters of valuing, preferring, understanding, believing, wanting, desiring, and so forth. On the one hand, I think this tendency helps our field.

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Justin Clapp: For example, I think it allows bioethical theories to appeal to the colloquial sensibilities of practitioners and policymakers. But I also think this tendency can cause us to overlook some of the most interesting and perhaps most ethically consequential aspects of clinical interactions.

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Justin Clapp: So the crux of my argument is that to say someone values or prefers, or wants, or believes, or understands, or desires, and so on and so forth.

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Justin Clapp: something is an event of typification. It is, in other words, to characterize that person as exhibiting the kinds of attributes and behaviors of someone who values or prefers, etc, that thing. And this is the case whether this characterization is being applied to oneself or to someone else.

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Justin Clapp: I mean, of course, any event of typification occurs in particular circumstances, and its significance is in how it alters those circumstances. But what often happens in bioethical discourse, as I hope to show momentarily, and in turn, in clinical settings, insofar as they take up this discourse, is that this event of typification and the social complexities that go along with it can actually disappear.

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Justin Clapp: So, I'll first briefly discuss how this happens in two veins of bioethical literature, first in moral philosophical accounts of autonomy, and then in accounts of medical decision making, which draw more or less explicitly on decision theory. And I focus on these two bodies of work because I believe they're the dominant ways that our field frames the general goal of ensuring that patients can participate in determining the direction of their care.

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Justin Clapp: So, first, the bioethical account of autonomy.

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Justin Clapp: In Principles of biomedical Ethics, Beauchamp and Childress define autonomy as the ability of an agent to, quote, hold views, to make choices, and to take actions based on their personal beliefs and values. While in early editions of the text they at times invoke a process of Kantian higher-order reflection, they stress that such beliefs and values should be accepted by the agent as their own.

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Justin Clapp: In later editions, they actually deny that this kind of self-endorsement is a necessary part of autonomy, arguing that this would set an impracticably high bar for patients and potential research subjects. Beechman Childress, as the years went by, stressed that the principle is not autonomy, the principle is respect for autonomy, which Childress defines as, quoted as prima facie wrong.

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Justin Clapp: to subject or attempt to subject the actions, including the others, the choices of others, to controlling influences, and which Beauchamp calls a pre-theoretical moral imperative.

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Justin Clapp: How did this particular account become so influential? For one, and I think this is actually widely recognized in our field, a largely negative conception of autonomy resonated with broad concerns about medical paternalism.

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Justin Clapp: But second, and I think this is less widely recognized, this negative account is actually combined with what by the late 20th century had become a commonsensical view of mind and action in American moral philosophy. The bioethical theory of autonomy fits quite comfortably with what the philosopher Margaret Walker calls the theoretical juridical model of ethics. Theoretical meaning

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Justin Clapp: that in Walker's words, moral capacity

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Justin Clapp: Is pictured as itself a kind of theory within an agent, or at least something the agent knows that can be represented in that form.

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Justin Clapp: and juridical in that this personal theory or personal knowledge is seen as then deductively delivering moral verdicts on particular cases. And I think it was sufficient for the autonomy framework

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Justin Clapp: Within bioethics to merely allude to this basic model in which values and beliefs and preferences, etc, are basically possessions of individuals that guide action.

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Justin Clapp: Of course.

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Justin Clapp: The bioethical conception of autonomy has been heavily criticized, both within and outside the discipline. Critics have argued it doesn't do justice to the importance of social relations and medical scenarios, especially given that patients are physically and emotionally vulnerable, and thus more reliant than the average person on family members and caregivers. Revised theories of autonomy, for example, relational autonomy, have made in

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Justin Clapp: roads into bioethics. Given their quest to give a socially situated account of autonomy, these theories are often depicted as quite stark deviations from the traditional bioethical model. But they explicitly maintain that pre-theoretical commitment to autonomy as a political goal.

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Justin Clapp: And they typically wind up maintaining the same basic model of the agent acting on values, preferences, beliefs, and so on. So in other words, the social in these revised accounts of autonomy is treated as a source of inculcation.

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Justin Clapp: Agents are still portrayed as containers for values, beliefs, preferences, and so on, and the core of the original bioethical account is preserved. And in fact, the defenders of the original framework have argued that these newer theories can be readily absorbed into that framework.

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Justin Clapp: Now to that second vein of literature, in medical decision making.

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Justin Clapp: Bioethics in the adjacent fields of health services research and health policy have long had an affinity for decision theory. Actually, early bioethical work on informed consent, for example, engages directly with decision theory. It's very common in contemporary academic medical discourse, and I think we're all probably fairly familiar with this, at least those of us in the room.

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Justin Clapp: But for the goal of medicine to be portrayed as aligning or integrating care with patients' values and or preferences, right, or ensuring that care reflects those values and or preferences.

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Justin Clapp: These terms are often used with very little elaboration, and it can actually be really difficult to tell precisely what is being denoted. This usage seems to me to be more about signaling a kind of general moral stance toward patient care than describing anything in particular. However, once in a while, work on medical decision making actually will seek to define or unpack these terms. Here, for example, is a discussion of values.

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Justin Clapp: Values are ever-present. Our hopes, beliefs, politics, and religions about which we appropriately feel emotions provide us with the frame or the lens with which we see the world. Values can be thought of as a form of psychological heuristic. So here, a value is posited to be some sort of mental state.

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Justin Clapp: The authors make the move that the philosopher Gilbert Ryle spotted in The Concept of Mind, so again.

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Justin Clapp: I've argued that to say someone values something, or that some value is important to them is to typify them. It's to characterize them as exhibiting the kinds of attributes and behaviors of someone who values that thing. But here, we see an instance of that tendency, which Ryle argued was pervasive in philosophy, but I think is also really common in the social sciences, to reify

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Justin Clapp: Such a typification as a singular, intrinsic feature of a person, and so it becomes a state of mind.

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Justin Clapp: It exists in this sort of mysterious mental space. Because to characterize someone as valuing something is usually to associate them with a very wide repertoire of attributes and behaviors.

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Justin Clapp: Value often gets transposed into the mind as a particularly anterior state, for example, a lens or a frame or a heuristic through which other psychological activity proceeds.

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Justin Clapp: Preference is a more slippery construct in academic medicine. So here are two sample definitions. Preference of care is defined as a statement that indicates the importance of a specific aspect of clinical behavior of care providers or the organization of care seen from the patient's perspective.

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Justin Clapp: And then we have the term preference is used to refer to a person's most favored option, after taking into account his or her attitudes toward each option's detailed characteristics.

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Justin Clapp: So, defining a preference as a statement would seem to suggest it's an utterance, one that would take place in particular social circumstances, but then we have seen from the patient's perspective, which seems to indicate that the statement should be seen as primarily a reflection of some mental state.

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Justin Clapp: Then in the second passage, we have a person's most favored option.

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Justin Clapp: Is this an idea in the head? Is it the referent of an utterance? It's juxtapositioned with a preceding process of taking into account his or her attitudes.

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Justin Clapp: perhaps lends itself to a construal in which the individual is first undergoing a mental process involving attitudes, and then indicating their most favorite option via an utterance, and maybe it's the utterance that's the preference… but it's far from conclusive. So, because in contrast to value, one can prefer something quite specific, like eating scrambled eggs, or not undergoing a tracheostomy.

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Justin Clapp: And thus having a preference is typically associated with a much narrower repertoire of behaviors and attributes.

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Justin Clapp: Preference glides freely in this interesting way in bioethical discourse between private mental state and public utterance or activity, and back again.

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Justin Clapp: This conception of preference plays out tacitly in empirical work in bioethics and adjacent disciplines and how it's subsequently discussed. So, for example.

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Justin Clapp: There exists a body of survey studies that carry out some version of the following design, right? Respondents are asked to imagine that they're in a specific medical scenario, and they're tasked with selecting, say, a treatment to pursue, or a communication style to be adopted by the clinical team.

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Justin Clapp: And their selection is then reported by the researchers as a preference. And it can subsequently be declared that some percentage of people prefer treatment X or communication style Y.

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Justin Clapp: In scenario Z. But the circumstances of the interaction that actually produced this response then drop out, right? Because it's treated as basically just a report of some inner state of preferring, or an effect of that state. So…

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Justin Clapp: Whether it's in that… the moral, philosophical work, or the medical decision-making work.

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Justin Clapp: This way of framing the involvement of patients in their care can obscure the fact that the familiar and intuitive terms used in bioethical discourse are part of frameworks that become more or less relevant in specific clinical settings through complex social processes and achieving effects that are often unpredictable, and it becomes very difficult to grapple with these effects, and there's a sort of short-circuiting of bioethical

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Justin Clapp: analysis that happens because of this. What I'm suggesting is that bioethics might benefit from focusing less on proclaiming the importance of patients' values, preferences, etc, whatever those terms are construed to mean.

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Justin Clapp: Sussing them out, verifying their authenticity, examining their implications for care.

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Justin Clapp: and more on how clinicians, patients, and families themselves do this kind of work. So in the second part of this talk, I'll draw on some ethnographic data to examine how this kind of work gets done in the medical intensive care unit specifically.

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Justin Clapp: So…

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Justin Clapp: Of course, the ICU is a setting in which patients frequently are unable to participate in discussions about their care. Nevertheless, legal decisions and decades of bioethical theorizing have formulated influential concepts for fostering patient self-determination, even during incapacitation. And I just want to quickly show, before I get into the empirical stuff, how bioethical commentary on these concepts is also wrapped up

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Justin Clapp: in this same kind of values and preferences discourse. The first idea is advanced care planning, right, with its central component, the advanced directive.

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Justin Clapp: What has long bothered bioethicists and health services researchers about advanced care planning is the ambiguity or the lack of specificity of the instructions it provides, and the consequent difficulty in applying these instructions in real medical situations.

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Justin Clapp: Beginning in the 90s, the values history approach to advanced care planning has been promoted as a way of addressing this problem by getting at underlying values that could then be used to guide medical decisions.

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Justin Clapp: Values language now takes center stage in discourse on advanced care planning. So, for example, a multidisciplinary Delphi panel defined advanced care planning recently as a process that supports adults at any stage, any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.

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Justin Clapp: The second idea I briefly want to cover is the substituted judgment standard, right? The idea that a surrogate should, as Buchanan and Brock put it in their seminal book on the topic, choose as the patient would choose if the patient were competent and aware both of the medical options and of the facts about his or her condition, including the fact that he or she is incompetent.

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Justin Clapp: Perhaps the main worry of bioethics in adjacent fields about substituted judgment has been the purported inaccuracy of surrogates in making selections for incapacitated patients. This concern is driven by a large body of experimental studies going back decades now.

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Justin Clapp: In which, similar to those preference surveys I previously described, right, respondents are presented with a hypothetical medical scenario, they are tasked with selecting a treatment approach, but in a substituted judgment twist.

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Justin Clapp: These studies also ask the respondent's potential surrogate to guess what the respondent's selection is. So it's a sort of…

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Justin Clapp: newlywed game study design, right?

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Justin Clapp: Failures of potential surrogates to guess the respondent's selection are reported as failures to, quote, predict the preferences of their loved one, and meta-analyses of these studies have concluded that about one-third of the time, surrogates cannot accurately predict preferences.

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Justin Clapp: Philosopher bioethicists have, in recent years responded to this concern about inaccuracy and predictive, you know.

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Justin Clapp: lack of ability to predict by reformulating the substituted judgment standard. So they've argued that its ethical import doesn't reside in the surrogate's ability to choose as the patient would choose, but rather in the demand it puts on surrogates to, as one article puts it, promote the life the patient valued for themselves.

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Justin Clapp: The important thing states another article is for theories of surrogacy to respect the complex ways in which surrogates actually make decisions, emphasizing the patient's underlying values, rather than trying to ferret out the specific treatments they'd choose or decline. In an article from last year,

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Justin Clapp: In age, I'm sorry.

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Justin Clapp: Argues that the value of substituted judgment at the bedside is that it tells us how to go on with what the patient considers to be her life.

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Justin Clapp: by asking about the patient's basic values or what the patient cares about. So, once again, here we are looking to values as the solution to these problems.

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Justin Clapp: So, to the ICU. Enough of the conceptual stuff.

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Justin Clapp: Currently working on a multi-sided ethnographic study in several medical ICUs.

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Justin Clapp: with Jackie Kruzer, who's an intensivist and health services researcher at Wisconsin. This study is one aim of a larger mixed methods project, characterizing the use of time-limited trials in the medical ICU. I'm not going to talk a lot about time-limited trials, but just to give you some context for the study. A time-limited trial, at least as defined in the clinical literature, is a collaborative plan.

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Justin Clapp: made by clinicians, patients, and families to use life-sustaining treatment for a specified duration, and to use particular signs of patient response to then determine whether to continue recovery-focused care or transition to a more palliative approach. So, in this first ethnographic aim, we followed 52 patients across 6 ICUs whose physicians told us they were using a time-limited trial.

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Justin Clapp: Alright, these are the study sites. These sites were selected in part based on feasibility.

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Justin Clapp: But in part because they present variation in patient race and ethnicity staffing models, in other words, whether the units have fellows, residents, advanced practice providers, hospitalists, etc, catchment areas, i.e. urban versus suburban versus rural geographic regions, and they also present variation in the intensity of end-of-life care in the referral region, according to the Dartmouth Atlas of Healthcare.

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Justin Clapp: So, this is again how we went about sampling recruitment. These were patients with acute respiratory failure who were receiving invasive mechanical ventilation. We would query whoever was on service, whatever attending was on service, and ask them, do you have any patients you're caring for that you're conducting a time-limited trial for? If they responded affirmatively, or they said they were considering a time-limited trial, like they had discussed it with the family or the team.

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Justin Clapp: We would then enroll that case. We would, we would consent, patient surrogates for, for participation.

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Justin Clapp: And like many ethnographic studies, our data collection was very, sort of, a multimodal qualitative approach. We would interview surrogates and ICU team members over time, serially, during that case, if possible. We would observe…

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Justin Clapp: ICU care and communication, for example, we would make sure to see rounds for that patient.

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Justin Clapp: We review their EHR notes and pull any relevant notes or information, and then we observed and recorded as many interactions as we could between the team and the family, which are often called family meetings in the unit, but sometimes are more informal bedside conversations.

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Justin Clapp: This is…

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Justin Clapp: the sample we ended up with. You can, of course, see demographic stuff, but what I want to draw your attention to, so you really get a sense of what's going on in these situations, is that, patients say they're using… or physicians say they're using time-limited trials when patients are really not doing well, so,

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Justin Clapp: you know, almost two-thirds of these patients died in the ICU, and three-quarters of them died, either in the hospital somewhere or were discharged to hospice.

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Justin Clapp: So, to the findings. First.

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Justin Clapp: the kind of talk that we associate with advanced care planning and substituted judgment as it plays out in the ICU makes up a register, a repertoire of behaviors that people associate with certain social roles, settings, situations, and I'm going to call this register, at least for the purposes of this presentation, I don't know if I'm going to stick with this. I'm going to call it want talk.

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Justin Clapp: Because it most commonly actually takes the form of discourse about what a patient wants, wanted, or would want. Or more commonly, as we'll see.

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Justin Clapp: didn't want, doesn't want, or wouldn't want. And sometimes the patient is involved in this discourse, and sometimes not, and this study, given that these are, you know, invasive, mechanically ventilated patients whose illnesses are unfortunately quite severe, patients are directly involved in only a small fraction of the talk.

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Justin Clapp: Discourse about what patients value or prefer, or what their values or preferences are, does occur in this data, but it's far, far less common. I would estimate

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Justin Clapp: Even though I'm not a frequencies guy, it's like maybe 5%, you know, 1 20th as common.

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Justin Clapp: As these kinds of want constructions that I'm going to talk about. And it comes almost exclusively from clinicians, and it actually most often crops up in EHR templates at these various institutions. So, for instance, at one institution, clinicians use an advanced care planning note type.

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Justin Clapp: to report extended interactions with patients and families, which includes a section called Patient Family Preferences Expressed that they then fill out, though in filling out this section, clinicians nearly always use WANT.

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Justin Clapp: And not anything related to preferences. At another site in the family meeting note type, clinicians choose from drop-down options to report on the conversation, and one such response option is patient and family hopes slash goals slash values slash preferences.

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Justin Clapp: For future care.

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Justin Clapp: So while the language of bioethics… oh, I gotta go back. So while the language of bioethics has made its way into the ICU, it takes a particular form there. Want talk is a sort of hybrid lay professional register, insofar as it consists mainly of characterizing what patients want.

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Justin Clapp: It uses the same kind of language we use every day, right, when we're talking about, like, what we're gonna have for breakfast. But every once in a while, terms like value and preference and wishes and goals of care are used, language that's less common in everyday talk and more clearly part of a specialized register. I need to think more about this, but I think there are consequences to this kind of

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Justin Clapp: hybridity, and I suspect it contributes to the naturalization of the use of wantTalk to direct care in this setting.

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Justin Clapp: So let's get a little more into what want talk looks like in the ICU. When families talk about incapacitated patients, sometimes they'll provide direct or indirect reports of speech. So typically, such reports occur as part of narrative, so there's at least some circumstantial detail given, right? So, for instance, a family member might recall when one of the patient's parents died.

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Justin Clapp: in a nursing home, and attribute an utterance to the patient. Like, he said this is a terrible way to go out, or he said that was a terrible way to go out. And in the more indirect formulations, right, the utterance is being presented as a paraphrase, right, in which the reporter is doing some degree of inferential work.

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Justin Clapp: And it's actually often unclear whether what's being summarized in those indirect reports is one utterance or multiple utterances.

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Justin Clapp: These reports of speech, I'll argue, are not intrinsically typifying, right? That is, in simply stating that the patient has said something in a certain situation.

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Justin Clapp: They don't directly comment on the type of person the patient is. They could certainly be taken up as evidence for a typification, and reports like he said he wouldn't want, which are very common, insofar as they can be very easily reified in subsequent discourse as he wouldn't want.

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Justin Clapp: are amenable to being taken up in that kind of typifying way. I mean, and most commonly, want talk takes precisely this latter form. So, patients are typified using some form of want. She wanted, he wants, I want, he would want.

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Justin Clapp: Want is what linguists and philosophers of language might call a verbum sentiende, a verb of feeling, as are verbs like value, prefer, desire, believe.

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Justin Clapp: A verbum sentiende can be used to report a single utterance or a single behavior, or to synthesize a series of utterances and behaviors, but these events, their number, the circumstances in which they occurred, are not made apparent in the utterance, so these formulations are highly reductive in this way.

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Justin Clapp: There's strikingly little conversation in our data among clinicians and families about how these want typifications have been derived. Clinicians often ask specifically for them.

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Justin Clapp: What does he… did he… would he want? And sometimes they reinforce this drive for reduction by adding utterances, like, as his family, you know the patient best.

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Justin Clapp: And we have seen instances in this study of clinicians commenting to each other about a perceived flip-flopping between opposing typifications. So in one case, for example, a caseworker remarked to the ethnographer, about a family that, quote, it sounds like they don't really know their dad.

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Justin Clapp: But these are rare comments, they occur behind closed doors, at least in this study, and they're not really directly questioning, like, how the typification was derived, or just kind of commenting on some inconsistency.

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Justin Clapp: Very rarely in this data, families and or clinicians will reflexively comment on the process of deriving the typification. So, here is, like, one such deviant case. An attending and family consider how to typify the gestures made by an intubated patient.

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Justin Clapp: So, the attending reports in an EHR note, after inquiring about patient's stated values, family stated that the patient is stating that he wants the breathing tube removed.

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Justin Clapp: But are not sure whether this represents discomfort with the tube, or a value statement about never wanting to have been intubated slash be intubated in the future.

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Justin Clapp: And then later that day, the ethnographer observes the attending and the patient's daughter discussing this same kind of dilemma bedside. And the ethnographer records in her field notes. The attending says, it's hard to tell if he's uncomfortable and wants it out permanently when he was pointing to the tube.

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Justin Clapp: Because he might just be uncomfortable and want the tube removed, but could still want the help with his breathing through a trach.

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Justin Clapp: But as I said, this kind of meta-commentary on the process of generating want-talk typifications is really rare in our data. Why? I can imagine several potential causes, and for one, as I've already noted, to the extent that this process is commented on at all, it's to characterize these typifications as knowledge of the patient that's being conveyed by the family.

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Justin Clapp: As opposed to, say, inferential statements made in specific contextual circumstances. Further.

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Justin Clapp: Because the usage of verba sentiende, especially really colloquial ones like want, to characterize utterances and behaviors, is so ubiquitous in our everyday speech, this move may seem totally unremarkable.

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Justin Clapp: And finally, in a fast-paced ICU environment, these want reductions provide easily decontextualizable snippets of text conveniently entered into the EHR, communicated between clinicians, and re-invoked, as we'll see in subsequent clinician-family interactions.

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Justin Clapp: Now, what sort of typifications recur in this particular dataset? The typifications made by families are highly patterned.

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Justin Clapp: There are 3 broad ones that recur frequently. And by broad here, I mean that they're associable with a quite wide array of behaviors and attributes. So families or patients say that patients didn't, don't, or wouldn't want

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Justin Clapp: To be on machines, To have tubes coming out of them.

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Justin Clapp: Or to be a vegetable. These recur over and over.

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Justin Clapp: In the much less common instances.

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Justin Clapp: in which typifications are of what the patient does or would want or did want. Families or patients say that patients want or would want to live.

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Justin Clapp: to fight… And everything.

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Justin Clapp: Right? As in, like, all the medical… all the medicine.

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Justin Clapp: as we've already discussed, bioethicists have worried about the ambiguity of this kind of… these kinds of broad typifications, right? And indeed, there are some cases we've seen in which applying these typifications presents difficulties for families.

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Justin Clapp: So, a case in which a patient's wife and granddaughter argue over whether being mechanically ventilated means he has become a vegetable, as they say he so feared comes to mind, or another in which a daughter worries over whether her father would see intubation as one of the invasive treatments he always said he wanted to avoid. But by and large, I don't think it's this particular kind of indeterminacy that makes things difficult for

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Justin Clapp: the families that we've enrolled in this study. Not wanting to be a vegetable, to be on machines.

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Justin Clapp: To have tubes, these are…

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Justin Clapp: fairly fuzzy typifications, to be sure, but they're all stereotypical images of the horrors of the biomedical death, I think. The patient is alive, but incapacitated, covered in apparatus, with no hope of recovery. And it's that last aspect that I think is crucial, the possibility or lack thereof, of improvement. So, for even when the patients we studied typify patients more

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Justin Clapp: Specifically, they say things like, he wouldn't want to trach, she doesn't want to be intubated.

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Justin Clapp: It's often really difficult for them to apply these typifications because of the intense prognostic indeterminacy that's so common in the intensive care unit.

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Justin Clapp: Here, for instance, is the wife of a patient talking about what he wants in an interview with the ethnographer. And she says, even though I know what my husband wants, it doesn't sound like the options they're giving us are… how can I explain this? Like, my husband didn't want to be a burden, he's not going to want to walk around with an oxygen tank for his whole life, or maybe be on dialysis his whole life.

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Justin Clapp: But I feel like the options we're getting aren't… not sure if they're bad enough that I could say, oh yeah, he wouldn't want that at all. Do you know what I mean? The options we're getting are like, I don't know, maybe it would be okay, maybe you could still have a quality of life with this, so I guess that's it.

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Justin Clapp: So I'm going to return to this issue of prognostic indeterminacy and its relationship to want talk, but before that, I need to touch on the circumstances in which want talk usually happens during a patient's ICU stay. Wantalk is often introduced by clinicians, rather than being spontaneously undertaken by families, or at least it's heavily encouraged and reinforced by clinicians.

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Justin Clapp: Engaging in want talk is at times framed by clinicians as the central mission of families and surrogates.

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Justin Clapp: And the latter are often congratulated by clinicians for doing it, by being told, for example, that they have been quote-unquote fierce advocates for the patient over the patient's ICU stay. Wantalk can occur in… early in a patient's ICU stay, and take the form of the clinical team, as they'll sometimes say to families, getting to know the patient, but it tends to really intensify

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Justin Clapp: As patients remain in the unit without evident improvement or with worsening clinical status, which is perhaps unsurprising, right, given that so much discourse on advanced care planning and surrogacy is focused on the end of life.

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Justin Clapp: Oftentimes, clinicians encourage want talk in conjunction with delivering news about a downturn or a lack of improvement.

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Justin Clapp: Oftentimes this is done in correspondence with an utterance like, no decisions need to be made today. So, the clinician tells the family that given the increasingly grim prognostic outlook, it's time to consider, for example, what the patient would want. So here's an ethnographic field note capturing this kind of approach by a clinician when talking to a patient's family. The attending discusses possibility of tracheostomy and tells family there is, quote.

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Justin Clapp: no urgency to make a decision. But the goal of the present discussion is to know who he is and know what you have in terms of goals for him.

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Justin Clapp: While this kind of approach on its surface is merely asking the family to reflect on who the patient is or what the patient wants.

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Justin Clapp: It also signals to the family that they should begin considering the de-escalation of treatment.

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Justin Clapp: And begins to shift the responsibility for articulating such a move to the family. And we see this uptake in interviews with family members. For instance, in an interview of the patient's wife that occurred just after this attending family interaction that was captured by the ethnographer, the wife said, so that was a little scary, because he made it sound like it was our decision, and we'd have to decide if my husband would be happy with the quality of life that he had.

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Justin Clapp: may end up having.

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Justin Clapp: Sometimes want talk is taken up this way by families,

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Justin Clapp: And they actually will confront clinicians during the interaction for implying that they need to articulate some sort of choice. So, for example, here's a snippet of a conversation between an attending physician and a patient's fiance and father. This patient, unfortunately, is a young man suffering from treatment refractory lymphoma. He's been in the ICU for a week. The attending goes at length before this.

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Justin Clapp: Overall, the sort of treatment options, and why each, in turn, does not appear like it's going to realistically help the patient. And after that, hits them with a really heavy dose of want talk. The attending says.

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Justin Clapp: So you say, what do you want to think about? What I would think is, if he were sitting in this chair, and he weren't confused, if he were thinking about this and heard, we can't get you better from your cancer, this cancer is going to lead to your death, how would he want that to look like? Would he want that to be peaceful?

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Justin Clapp: Would he want that to be all the family around in a quiet environment, maybe in the hospice, or maybe here in the ICU, or something like that?

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Justin Clapp: Or would he want to be on a breathing machine? Would he want to be on a machine cleaning his blood with dialysis? Would he want all the various medicines and drips and all that kind of stuff? That's not an easy question. It's not an easy thing to hear or think about. I'm sorry.

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Justin Clapp: This is what happens after that.

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Justin Clapp: Father says, here's what you've got to understand. We're in the room for hours going home for breaks, and you want to come in here and put your whole speech out here and expect somebody to come up with an answer for you right now. Leave us alone for a little while.

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Justin Clapp: Fiance says.

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Justin Clapp: I know you're just doing your job, I understand that, I know you just gave me the facts, I understand that. Ultimately, it's left up to me. So what I'm asking now is just, I understand where we're at at the moment.

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Justin Clapp: Father, so just give us some time to process.

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Justin Clapp: And the attending says, what I'm hearing from you is, give us some time to process. What I'm hearing from you is, the father interrupts, same thing, she's saying the same thing, give us some time to process. The fiance says, it's easy for me to sit here and tell you that. You know what, it's day three, I don't think he's getting off, turn it off. It's easy for me to say that.

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Justin Clapp: It's not easy, I'm sorry. Yeah, technically, that's what you're all saying. It's easy for me to say that it's day 3 and you need the bed, right? Things get more acrimonious from there.

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Justin Clapp: Until there's an ethics council.

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Justin Clapp: Other times, wantalk apparently actually goes unrecognized as a register by the family member, and its particular moralizing force is completely not taken up.

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Justin Clapp: Here, for example, an attending reports a phone conversation with a mechanically ventilated patient's daughter. This patient had been moving between the ICU and various inpatient care facilities for the last year after suffering a series of strokes.

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Justin Clapp: The attending writes in the EHR, I asked if she was sure this is the quality of life he would want.

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Justin Clapp: She expressed concern about poor conditions at the patient's inpatient rehab facility. So this combination of want and quality of life is not dinging in the same way for this family member, who then starts talking about the quality of the rehab facility.

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Justin Clapp: In many cases, the discussions that occur as a patient becomes sicker take place against the backdrop of prior interactions in which families have already typified patients, or patients themselves, earlier in the ICU stay.

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Justin Clapp: So while, as I noted earlier, there's very little dissection of these typifications when they initially happen, once they've been made.

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Justin Clapp: clinicians readily return to them to probe families about whether the current course of care is, or a future course of care would be appropriate in light of the typification that the family has made. And when this happens, a two-fold reduction is accomplished. So, for one.

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Justin Clapp: What may have initially been more along the lines of a report of the patient saying something in particular circumstances.

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Justin Clapp: when it's uttered by the family, becomes a typification of the patient when it's repeated by the clinician with much less circumstantial detail. So there's a sort of reification or a centralization that happens.

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Justin Clapp: But second, and what I want to talk about now, is that the details of the interaction between the family and the clinical team that initially produced that report or typification about the patient get erased when it gets brought back up later by the clinician. And what then moves out of sight is the fact that this was a characterization of the patient

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Justin Clapp: Produced by an event of speech occurring in particular circumstances.

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Justin Clapp: I found just one instance in this data so far of a family, like, contesting this type of reduction or erasure, which I think is interesting.

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Justin Clapp: On the second day of a patient's stay in the ICU, a family is reported in the EHR as stating that the patient would not want to be supported by machines. Over the next few days, the patient shows little improvement, but the clinicians actually repeatedly bring up this machine's typification and suggest that the family should use it to reflect on whether the patient would want to continue with life-sustaining treatment.

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Justin Clapp: On the patient's fifth day in the unit,

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Justin Clapp: A resident meets with the family. As we can see in this exchange, the resident again refers back to that initial typification to suggest that continuing with life-sustaining treatment is not the right approach.

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Justin Clapp: And in response, we'll see the patient's son actually goes back and describes the circumstances of the typification to contest the way the resident is actually applying it. So the resident says.

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Justin Clapp: Ultimately, what we would be talking about, that would involve… that would involve doing a tracheostomy, because he can't be with the breathing tube in his mouth for more than 7 to 10 days or so. So it would be an invasive procedure by cutting into his neck. He would need a feeding tube in his stomach to provide him with nutrition. And it sounds like those interventions might not be things that he would want, based on what you have told us.

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Justin Clapp: The patient's son says, I understand, but you wasn't there. My mom saw him. In other words, when she first came into the ICU. And mom was shocked, and I mean, I knew what it entails, but she wasn't prepared for that. And that's the issue here, is that we thought he had been through enough, as far as invasive treatment, and we just didn't want to stress the body anymore. We just thought he'd been through enough at that point.

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Justin Clapp: And so we do need to talk about this, we really, really need to talk about this. And then the resident moves away, and they have a discussion as a family.

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Justin Clapp: Now, I said I'd return to the relationship between want talk and prognostic indeterminacy, and this is the last thing I'll talk about.

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Justin Clapp: In short, and I'm still very much thinking about this, but I think that want talk and talk about prognosis, which I'll just call prognosis talk, mutually reinforce one another.

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Justin Clapp: Each allows the other to become narrowed and hardened. What do I mean by this? So, specifically, want talk often licenses the use of blunter prognosis talk by clinicians.

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Justin Clapp: While prognosis talk often encourages the use of more specific or categorical typifications of the patient. And through this mutual reinforcement, want talk, I think, is actually crucial to reducing prognostic indeterminacy, even when the patient's clinical status hasn't really substantially changed.

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Justin Clapp: I would even argue that this is, like, a central function of long talk in the ICU. This can happen over the course of multiple interactions, or within a single interaction, so I'm going to provide an extended example here from a single interaction between a nurse practitioner and a patient's family.

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Justin Clapp: Early on in this meeting, the NP harks back, right, once again, to a prior event of typification. The NP says, a lot of what we talked about this morning, and she refers to the husband, what you brought up was that the patient's wishes are not uncertain. She would not want to live permanently on mechanical or machine support. Is that true?

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Justin Clapp: One of the daughters says,

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Justin Clapp: MP continues, she would not want to live in a nursing home.

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Justin Clapp: With that in mind, I don't think it's impossible that we could get to the point where we could get the breathing tube out, but I don't see any sort of possibility where she would leave the hospital and be able to go home. I think our best-case scenario is going to be going through a nursing home or rehab facility for at minimum months, potentially permanently. Again, that's our best-case scenario.

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Justin Clapp: Here, the NP typifies the patient as would not want to live permanently on mechanical or machine support, and would not want to live in a nursing home. The NP does briefly reference the prior speech event that produced this typification. She doesn't elite it entirely, like in other cases.

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Justin Clapp: But actually, I think doing so pins the responsibility for the typification to the family. When the NP transitions with that in mind, right, to a prognostic prediction, she does through… so through the lens of the want typification.

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Justin Clapp: After this, after this exchange, in other words, and before the next exchange I'm going to show you, the patient's daughter responds by saying she's confused about how well or poorly the patient is doing. She says one clinician told them, quote, she's going to die, a 90% chance, unquote, while others were telling them that the patient was quote-unquote stable.

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Justin Clapp: The NP then responds that the patient is, quote, in the dying process, unquote, but that that could take days or months.

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Justin Clapp: That does not clear things up prognostically for the daughter, and then the NP returns to want talk after this kind of bout of prognosis talk.

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Justin Clapp: And the NP says.

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Justin Clapp: From what I'm hearing from you, from her family, is that there are things that the patient would absolutely never want. To be in a nursing home, to rely on these machines and supports 24-7, and where we're at, and what we're all realizing, is that there isn't a future in which the patient can survive without these things. So notice here that the typification has become more categorical. Now the patient would absolutely never want these things.

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Justin Clapp: And the key qualifier of not wanting to live permanently on machines, right, which was in the previous typification, has dropped out. The prognostic statement that then follows is built completely on the content of the typification made in the preceding WANT talk.

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Justin Clapp: I'm not gonna spend more time presenting the rest of this lengthy interaction, but hopefully it suffices to at least suggest, what I'm talking about and thinking about. What ends up happening in this conversation is the NP actually winds up working through several more, sort of, cycles of want talk and prognosis talk.

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Justin Clapp: Kind of through the lens of that want talk before the meeting concludes, and the family ends up transitioning to a palliative approach shortly after its conclusion.

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Justin Clapp: I have one last observation about this data I want to briefly touch on.

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Justin Clapp: very, nascent thought, but, worth presenting, I guess. Any interactions.

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Justin Clapp: Where we've caught… in which families kind of first explicitly convey to the clinical team a willingness to withdraw the patient from life-sustaining treatment.

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Justin Clapp: Family members commonly make statements like, she wouldn't want this, or she didn't want to live like this, often accompanied by a physical gesture, a sort of sweeping physical gesture toward the patient and the various devices connected to them.

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Justin Clapp: These are powerfully dyketic statements, that is, if they are to have any significance, it resides in their linkage to context. She didn't want to live like this, right, that final pronoun, referring in very sweeping fashion to just the circumstances at hand. These statements often occur in conjunction with the family member saying, I don't want her to suffer anymore, or something similar. What I think is interesting about these utterances and their occurrence at these kind of decisive moments is

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Justin Clapp: They are want typifications, but they're totally moored to context. They make a nod to want talk.

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Justin Clapp: But they also introduce a different suffering-based rationale for the de-escalation of treatment, one in which it's the family member who wants something.

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Justin Clapp: Their anchoring to context makes them different from other want typifications, like he doesn't want to be on machines, etc, which, as we've seen, have a sort of detachability and portability that makes them fair game for usage by clinicians. I'm not…

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Justin Clapp: sure exactly what's going on here yet, but it's almost as if there's a sort of personalizing quality to this particular strain of want talk, a sort of reassertion of the family's ownership of the move to withdraw life-sustaining care.

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Justin Clapp: I'm gonna end there, somewhat abruptly, I realize. I'm not gonna conclude with any statements about which of these findings are good and which are bad.

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Justin Clapp: in part because I'm an anthropologist, in part because we're still working through the data. But I do find, kind of, tend to find it more interesting in the spirit of empirical bioethics to ask things like.

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Justin Clapp: Could any of this look different? How could it look different? With what implications? Lastly, I want to acknowledge the many, many people who have worked in some capacity on this ethnographic aim.

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Justin Clapp: That's it.

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Justin Clapp: So, we'll open it up for questions from the audience. I'm gonna throw around the cube. I love our cube.

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Justin Clapp: Yeah, we'd like to open this to questions and comments, maybe first, if there's anything on… Hi, Coco.

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Justin Clapp: Okay, cool.

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Justin Clapp: The action came here. Jane has two questions.

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Justin Clapp: Two questions, we'll give her one to start. Okay, alright, so, Jane has two questions. First one, she says that the fight language is not want talk, it's identity talk, for lack of a better word. The family identifies the patient as a fighter. Even the bee of burden feels like identity, not want. Wondering if you've looked at the way perceptions of identity,

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Justin Clapp: app, Hold on.

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Justin Clapp: Well, I can… well, I can't get this out of the way, let me…

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Justin Clapp: Yeah, it's just, I'm trying to remove this. There we go, okay, what I call I am statements in my consults, feature in these settings, so…

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Justin Clapp: And then the second is… I completely agree with Jane. In fact, that's sort of, like, the move that I'm trying to make by saying that these are typifying statements, right? In the sense that…

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Justin Clapp: moving them away from thinking of them as wants that sort of reside within the patient in this kind of essentializing way, and saying, okay, these are sort of social figures or personae that are actually being put out there. We don't think of want statements in that way, oftentimes, because we tend to kind of essentialize them.

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Justin Clapp: And this sort of as urges, or psychological entities, or whatever. So, completely agree. I think…

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Justin Clapp: That said, these kinds of typifications are more or less kind of widely distributed, right, and sort of stereotyped, right? Even among ICU clinicians, you know, the patient who doesn't want to be on machines recurs so much that I think

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Justin Clapp: that is a sort of social persona or identity, right? There are others that are kind of more idiosyncratic and are less stereotyped, but I would say, Jane, I basically totally… I basically totally agree with you. I'll take the…

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Justin Clapp: Next question. So, first of all, shame on you.

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Justin Clapp: For saying, oh, I'm an anthropologist, I won't say which of this is good and bad. So I heard your appointment is actually the Bioethics Center, so… so… so when I say… I just… I'm fascinated, I was sitting there all the time, started squirming, because you're describing the typification, you're describing the family's ownership.

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Justin Clapp: But these have very functional roles, it seems, although also dysfunctional roles. So, I was asking if we push you a little bit on

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Justin Clapp: sort of, to put on the bioethics hat a little bit, or the… Yeah, sure. …sort of normative hat, like, what did you see that went wrong? Just saying they typify, they forget the context, they put ownership of the… that can be done good and bad, and do you have any feelings about what this is doing to that conversation? I would say that there are cases I can think of where the kind of reduction that these typifications accomplish

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Justin Clapp: They then get used in this very decontextualized way

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Justin Clapp: To sort of strongly suggest certain courses of care.

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Justin Clapp: And, like, kind of in the case that I showed, where the sun kind of contests that, I don't know that that's the most kind of productive usage of want talk, right?

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Justin Clapp: without sensitivity to what was going on when that statement was made 4 days ago, or whenever it was made. And it becomes a sort of… I remember in an interview, one attending actually kind of reflected on this indirectly, and described it as a sort of hammering the families with these characterizations of the patient, and I think that's what can…

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Justin Clapp: Happen, and it can damage relations between the clinical team and the patient.

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Justin Clapp: I think, and I'm still really thinking about what's good or bad about, like, the narrowing of prognosis piece. I think that's a really key function, and I think that's very much one where I could see that in some ways being good sometimes.

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Justin Clapp: And other times, I think it's a sort of… maybe a weaponization of these want… of this sort of substitute… the sort of moral force of substituted judgment.

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Justin Clapp: When families… that's not… and then it becomes, and you can see it, like, in interviews with clinicians, they'll frame the core issue as, like, oh, the families just, you know, they have… they know what the patient wants, and they're not applying that, right?

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Justin Clapp: I think… I don't… I don't think that's the core issue. I think the core issue is the prognostic indeterminacy.

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Justin Clapp: And to the extent that it sort of shifts things to this substituted judgment realm, and puts a particular kind of moral pressure on families, then I start to…

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Justin Clapp: squirm myself a little bit. So, yeah. Now, I have some ideas about… about good or bad, but still… still working through them.

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Justin Clapp: I think I'll… I'll take, this first bit of this is mainly a comment, just for, maybe a little bit more…

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Justin Clapp: like, concrete discussion. And then I do have a, maybe, provocation, I don't know if this one's gonna be interesting for you, but over breakfast, I know we were talking about Warfanism. Yeah. And I wanted to see if you could talk a little bit more concretely about this step

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Justin Clapp: back, because I see kind of two aspects to this that I think are, like, ethically relevant, where you have this want talk or values talk that,

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Justin Clapp: that reconstitutes the communication as though it was always already about prefab values, prefab wants. And that seems to not just, like, in this, like, in the antagonism case,

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Justin Clapp: like, have some kind of cognitive dissonance for the people who are actually probably coming from, I don't know if you want to say virtue ethics, but more this characterological, like, I'm interested in representing a figure, but you're asking me to reduce this to something that…

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Justin Clapp: maybe intuitively, I know didn't already exist, because we're living through such radically unusual times.

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Justin Clapp: But then the other thing that it seems to do that I think is also interesting is reinforce

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Justin Clapp: if you can find those things in the world, there's some kind of magical thinking, too, where if you, can typify, you successfully typify communication as want talk, or as value talk, then all of a sudden, you've proved that there were always already the values, there were already, always, already the wants. Yeah.

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Justin Clapp: Yeah.

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Justin Clapp: I think those are…

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Justin Clapp: good insights that I agree with. Yeah. I think the Warpian thing is something that I can draw out more without getting into…

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Justin Clapp: what I mean by morphine here, right? Basically the idea, right, that the way we kind of talk about things

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Justin Clapp: can sometimes, you know, kind of beneath our awareness of it, really shape the way we think and act in the world, right? And I think that's something I could probably draw out, like, maybe in a paper. That's kind of what made me start thinking about

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Justin Clapp: this verba sentiende piece, like, the very everyday usage of these terms, like want, whatever, prefer, right, very commonly being used to report on what were really social encounters, right, and what the effects are of that. Well, then it makes them into these

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Justin Clapp: private, psychological things, right, instead of public…

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Justin Clapp: Right? Utterances, and… which is, like, hugely common, right? But to the extent that I think bioethicists are kind of falling into that trap, right? Which is a very kind of, like, common vernacular trap.

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Justin Clapp: it's something that, yeah, I'd like to kind of expound on a little bit.

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Justin Clapp: Yeah.

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Justin Clapp: Thank you. I think, did Jane have another?

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Justin Clapp: Question, or did somebody else in the audience have a question?

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Justin Clapp: I've got a lot more to say, but… Yeah, we can also talk at lunch, yeah, yeah.

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Justin Clapp: Right.

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Justin Clapp: So, I've got two, two things really quick, and then that'll probably be, that'll probably be it. Jane, just really quick had another comment that she likes the phrase, want talk, and that if you're taking votes, that has her vote. And Dr. David Craig, had a question slash comment. He said, I think wants are related to identity. Want implies the regularity, frequency, or intensity of a person's habitual characteristics.

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Justin Clapp: expressed values or preferences. That seems like an important difference between the ethnographic findings about once versus the theoretical emphasis on values and preferences in bioethics literature.

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Justin Clapp: Yeah, I would say…

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Justin Clapp: Insofar as I understand what he's getting at there, very much agree that, like, that's what Wantalk functions to do, like, in this very Rileyan way of…

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Justin Clapp: like, Ryle calls them, like, dispositional terms, right? Like, this idea that you're commenting on, sort of, patterned or habitual behavior

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Justin Clapp: whether you're applying that to yourself or to another person. What I… what Ryle identified is a tendency in philosophy to…

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Justin Clapp: kind of overlook that, right, and to essentialize these characteristics as kind of things that people carry around, which is, I think, one strain of what's going on, both in bioethical discourse, and to the extent that that discourse makes it into the clinic, I think that can happen a bit.

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Justin Clapp: In the clinic as… as well, potentially, through these… very slowly, through these kinds of reductive moves.

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Justin Clapp: But mostly my argument is that, like, it's bioethicists who have been doing that, and people in medical decision-making, and…

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Justin Clapp: that makes it very difficult to even want to pay attention to this kind of stuff, right? And you just keep repeating, let's do the values and preferences thing, and it's kind of like, well, what is that?

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Justin Clapp: Thank you for all the time.

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Justin Clapp: I like how you say that, but I wonder, because I wonder, like you said, it's a vernacular assumption as well, that people are these vessels carrying preferences. And so, if you say, well, we should talk in a different way, that wouldn't just be about fixing bioethics, but about fixing how we talk about people, and I'm not quite sure we're anyone here knowing how to replace that kind of talk. I think that's a super interesting point, and I think it is a vernacular… it is in the vernacular as well.

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Justin Clapp: I just think that in the vernacular, it hasn't been made into, like…

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Justin Clapp: this super potent moral framework in the way that it has been in bioethics? Maybe. I mean, it's difficult sometimes… one of my gripes with bioethics is that it's so located, like, in the way lay people talk.

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Justin Clapp: that… that's part of its power, but it also starts to really… these… these fuzzy things… like, did that come from vernacular usage, or did it come from bioethics? And bioethics is a really influential field, and so people picked it up as patients and families who've been in the ICU for a while, et cetera, et cetera. But yeah, super interesting point.

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Justin Clapp: Well, thank you so much for being here. Thank you, thank you again for the invitation, I appreciate it.

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Justin Clapp: Do you have a cubes I've… no, I…