It’s important to know—for practical purposes such as resource allocation in research and treatment—how bad it is, say, to live with a colostomy. And it’s hard to think of much better ways of finding out than asking the relevant people. But who are the relevant people? Whom should we ask, whose answers should be considered authoritative1 on this matter? One natural suggestion is to ask the healthy, roughly, how good a life with a colostomy is. Another natural suggestion is to ask those who live with a colostomy how well their lives go. The problem Nir Eyal's paper2 starts from is that these two groups give systematically different answers. Those living with a colostomy typically evaluate their wellbeing as much, much higher compared to the evaluation of a life with a colostomy by the healthy. So we are stuck. We may, of course, offer explanations—the healthy do not know what it’s like to live with a colostomy, and their hypothetical evaluations are governed by stigmas and phobias. Those coping with the difficulties of living with a colostomy have to tell themselves encouraging stories, independently of their truth. But such explanations are problematic, and not only because they are speculative. Their force is likely to depend on how much worse the lives of those with a colostomy really are.3 So relying on such contentious explanations in trying to find out the answer to this question is unlikely to be helpful.
Eyal’s suggestion is to ask a third group of people—those who did, but no longer, live with a colostomy. They do know what it’s like. And they are less likely to be influenced by stigmas and phobias. They are also less likely to be in the grip of false self-encouraging stories. In general, they too are not infallible, but we have reason to think of them as less under the influence of distorting factors than either those who have never had a colostomy or those who currently do. They are our best shot at a good enough answer to the question we started with. We can ask them, then, and elsewhere—with regard to medical conditions where there is no group of people who no longer suffer from them—we can extrapolate from what we find when we do have this third group to ask.
I will not, in this comment, argue that Eyal is wrong about this conclusion. I do not know enough about the relevant conditions and the relevant methodologies in order to defend such a claim. What I want to do here is to highlight a consideration that seems to me extremely important and relevant, which Eyal barely considers. In a nutshell, I think that Eyal does not take sufficiently seriously the way in which overruling the evaluations of those currently living with a colostomy may amount to disrespecting them.
A good way of seeing that something is neglected here is considering a way in which the symmetry between the two groups whose evaluations Eyal is happy to overrule breaks down. Note, then, that by relying on past patients, Eyal equally overrules the evaluations of those who have always been healthy, and the evaluations of those currently living with a colostomy. Suppose, then, that Eyal explains his suggestion to members of both groups. To the first group he may say things like ‘Oh, you know, people get used to lots of stuff. Apparently, and to a limited extent, also to a colostomy. You probably didn’t take that into account when evaluating the quality of a life with a colostomy.’ While it may be too optimistic to expect all of Eyal’s interlocutors to respond with ‘Wow, I hadn’t thought of that! What a nice surprise!’, still it seems clear that members of this group—even if not fully convinced—should not be offended for being overruled in this way. But now imagine Eyal explaining his suggestion to those now living with a colostomy: ‘Oh, you know, people tend to tell themselves self-encouraging stories. Apparently, to a limited extent this is also true of you in this case. We’ve come to realize that your life is actually going considerably worse than you tell yourself.’ Here, it does not just seem clear, as a matter of descriptive fact, that Eyal’s interlocutors will be offended. It’s also clear that there needn’t be any irrationality about being offended in this way.4 They should be offended—what kind of person would not be? That the symmetry between the two (mistaken, if Eyal is right) groups breaks down in this striking way, then, is an indication of something that Eyal misses. And the thing that he misses is fully present, I suggest, even when these fictional dialogs do not in fact take place.
The problem is not one of fallibility. Everyone is fallible, all the time, about pretty much everything, the quality of one’s life included. But fallibility applies symmetrically to the evaluations of both overruled groups, so it does not explain the asymmetrical response we have just noticed. The problem is different. If we go to a restaurant together, I am of course fallible in choosing my meal—I may choose one that is not overall best for me, or even not the one I will enjoy most. Even if you know all this, and even if—as is surely possible—you are more likely to make the right choice (for me) in ordering a meal, still it would be terribly disrespectful for you to just overrule my order and order for me instead. The problem, to repeat, is not that I know better than you do what dish I will enjoy (though this too will often be the case). The problem is that my call here—even if mistaken—should not be overruled, it should be treated as the final word on the matter irrespectively of whether it’s right.
Similarly, I suggest, for the case we are interested in. The reason it makes sense for a person with a colostomy who evaluates her life as not significantly worse off than it used to be when she was healthier to be offended by Eyal’s suggestion is not that she cannot be wrong about these things. Rather it’s that when it comes to evaluating her present life, with her condition, her word should be considered authoritative and treated as the final word on the matter, irrespectively of the possibility of mistake. It is this consideration that explains the asymmetry between the two groups whose evaluations Eyal overrules: there is no sense in which the healthy are entitled to have their word determine the matter here. When they evaluate the quality of life with a colostomy, they are like a bystander, sitting at the restaurant’s bar, speculating about what meal I will enjoy most. If he is overruled, this may be mistaken (if he in fact is the person with the best information on this). But he should not be offended. It’s not about him. Those with a colostomy, on the other hand, are analogous to me, the person whose meal is at stake—it is in this kind of case that being overruled amounts to being disrespected.
Because I will continue to make heavy use of the restaurant analogy, and because all analogies are suspicious, let me make two points about its limited role here.5 First, you may think that there’s something more offensive about the relevant overruling in a personal interaction as in the restaurant compared to a more political, statistical, perhaps detached, impersonal context such as the one relevant for Eyal’s proposal. I agree that more can be said here—for some purposes, in fact, we may need much more fine-grained distinctions than even the one between personal and impersonal contexts. But at the level I’m working at this is not a problem: people often do resent being paternalized and patronized by the state, and without any irrationality—such political attitudes too may amount to disrespect. If you are not convinced, think of all the contexts in which underprivileged groups protest political policies and decisions and messages as deeply disrespectful. Surely, these protests are not (all) misguided. For my purposes, then, the analogy to the restaurant case is not jeopardized by noting the impersonal nature of the health policy case. Second, you may think that a part of what makes overruling my decision in the restaurant case so offensive is that at the restaurant, the price of a mistake will be paid only or almost only by me—it’s all self-regarding. But in the kind of case relevant for Eyal’s argument, this is not so: we’re talking policy and resource allocation here, so decisions here affect many people. And this means, you may think, that the case is importantly different. Perhaps when it comes to decisions that affect primarily oneself, one’s own judgments are authoritative in a kind of way in which they are not when others are involved. This may very well be so, but this does not undermine the use to which I put the analogy with the restaurant case here. The point of this analogy is merely to highlight a moral consideration that is in play, so I argue, both in the restaurant case and in the kind of case relevant to Eyal’s argument. Overruling the claims of some people with a colostomy when they say that they are coping rather well is disrespectful—and so pro tanto wrong—in the same way that overruling my meal choice in the restaurant is. This does not yet entail, though, an all-things-considered judgment about how to proceed. Perhaps the effects on others justify a different conclusion in the colostomy case than in the restaurant case. This is something to be considered, as it were, further down the road (a point I briefly return to below). But as long as my intuition pump succeeds—as long, that is, as you recognize the disrespect involved in the restaurant case, and then recognize its scent also in the kind of case Eyal is interested in—then regardless of what happens further down the road, I’ve successfully shown that there’s a serious moral concern here, which Eyal ignores.
There is nothing special about this kind of normative structure—the one exemplified both in the restaurant case and in Eyal’s. If I will enjoy the pizza more than the pasta, this is indeed a reason for me to order the pizza. It may even be a reason for you to order the pizza for me. But still (except in highly exceptional cases) you have a very strong reason not to act on that reason, and so not to overrule me when ordering my meal. This reason is exclusionary in Joseph Raz’s sense—it is a reason not to act for some class of reasons—and it is very natural to think of the value of autonomy and of problems with paternalism precisely in terms of such exclusionary reasons.6 Similarly, even if Eyal and past patients are right about the quality of life with a colostomy (as they very well may be7), there is a reason not to act on that evaluation, and so to accept the evaluation of those currently living with colostomies as authoritative on the matter.
In the restaurant, how much better should one feel if the overruling is defended with the (true!) observation that one’s past or future self would have agreed with it? Perhaps this makes, in some contexts, the overruling less disrespectful. I’m not sure. At other times, though, it makes it even more problematic—as if it’s not bad enough you are overruling me (when it comes to my dinner!), you have the nerve to also say things about how my future self is on your side? Similarly, it seems to me, in Eyal’s case. If he adds to the conversation ‘Oh, it’s not some alien intervention or anything. You yourself will, if you’re lucky enough to return to a life without a colostomy, come to see that your life now is not as good as you tell yourself it is!’ he will be adding insult to injury.
Though common, this kind of normative structure remains often challenging and problematic, and anyway highly context dependent. For instance, in some contexts—perhaps of close friends sharing a meal—while it would be unacceptable for you to order my food for me, it would be entirely acceptable for you to make a suggestion or recommendation. (‘Really? The pasta? Sure you don’t want to try their pizza? I think it’s exactly the kind you like most.’). In others—some more formal dinners, perhaps—even this much would be offensive. Our case, it seems to me, much more closely resembles the latter. It’s not just that no ethics committee will approve (I hope) the experiment in which Eyal asks people with colostomies questions like ‘Are you sure your life right now is pretty good? I mean, that’s not what that guy says about when he used to have a colostomy.’ It’s also that asking this question seems already disrespectful (and this, to repeat, even if they are overestimating the quality of their life).8
One may go even further. Perhaps there’s something offensive, or disrespectful, not just in overruling my meal order, or in saying I’m wrong, or even sometimes in just raising the option that I’m wrong. Perhaps respecting me rules out even your believing that I’m wrong in ordering the pasta. Perhaps, in our case, it is already disrespectful if Eyal merely believes that the lives of those with a colostomy go less well than they report they do. This thought raises deep, controversial issues that are fairly widely discussed in epistemology these days. It’s hard to deny that some discomfort is present already in the case of the belief—even without acting on it. It’s even harder to deny that we are often offended by what people believe of us, even independently of how they (otherwise) treat us. Given this, some have argued for doxastic wrongdoing: for the thesis, roughly, that believing itself may wrong people, perhaps even when the belief is well grounded in the available evidence. In the opposite direction, some insist that belief is governed solely by epistemic norms, so that if the evidence supports the belief, say, that someone’s life goes less well than they say, this is the thing to believe.9 Fortunately, we do not have to decide all this. For our purposes here, it’s sufficient that in the practical, political contexts Eyal has in mind, and whatever you should believe about how well someone’s life goes, there is something deeply offensive and disrespectful about second-guessing them when they say they actually cope rather well with the difficulties of living with a colostomy. Maybe the evidence shows they are wrong. But still, you have a strong reason to treat them as if they are right.
In order to do justice to this consideration, then—to the need to sometimes not second-guess people’s evaluation of how well their life is going—what we really need is both a deeper and a wider story. We need it to be wide enough to explain when this is so, and when it is not. For instance, if someone (sincerely but ridiculously) reports that their life is going rather poorly (maybe because they spend a lot of time on Facebook, learning about the purportedly better lives of others), it’s not as if we have to just take their word for it, certainly not when it comes to the possibility of allocating resources. So we need to know how to distinguish between the cases in which we are, and those in which we are not, required not to second-guess someone’s evaluation, or orders at a restaurant, or other beliefs and choices. And in all likelihood, the way to get a theory with such wide implications is to go deeper—to try and better understand what it is that makes second-guessing the colostomy patient’s evaluation of his or her life so offensive. I do not have such a wide and deep theory up my sleeve.10 But it’s this kind of theory we’d need in order to fully assess Eyal’s suggestion. Here’s one seemingly relevant consideration, though: in the cases in which Eyal is interested, the evaluations of those currently coping with the relevant condition of their own lives is mistaken—so says Eyal—in being overly high. Consequently, their mistake does not make an excessive demand on public resources. Rather, it saves public resources. Overruling people in such cases seems especially offensive and disrespectful. The main—perhaps only—consideration supporting overruling them is the hyper-paternalistic one, of protecting them from their own mistakes. The thought that there’s nothing problematic—not even pro tanto—about so doing is highly implausible.
All of this is consistent, as I already said, with Eyal’s conclusion turning out to be true. Perhaps, in other words, the consideration I’ve been highlighting—while of pro tanto weight—is always or almost always outweighed by other considerations (like the overall benefits that can be achieved if we attribute the right value to the quality of life of everyone involved). This is not impossible, but if it turned out to be true this would be as surprising as the claim that while there’s something disrespectful about you ordering for me, still this consideration is always outweighed by how much better you are at choosing dishes.
Even if the advantages of Eyal’s suggestion do not always defeat the weight of the consideration I’ve been emphasizing, it’s still possible that they do so often, indeed often enough for policy purposes. Still, if I’m right, the way to make progress on these matters is to take seriously the concern I’ve been highlighting and tackle it head on, not to ignore or downplay it.
Let me conclude with two final thoughts: one about such further policy considerations, and one about an alternative lesson that may be learned from Eyal’s discussion.
Once we move from highlighting one important pro tanto consideration to all-things-considered policy decision, we of course need to take into account a host of other considerations. Here’s one that seems to me especially important, and that Eyal does not consider. Throughout the paper, Eyal takes seriously—as he should—people’s preferences and perceptions. But the relations between policy decisions and preferences are not one-directional. Yes, policies should be shaped with information about people’s preferences in mind. But also, and sometimes importantly, policies also serve a role in shaping preferences, and when they can be expected to do so, this too affects the desirability of different policies. Now, this is an empirical speculation, but it’s not implausible to think that if we shape policy according to the evaluations of past patients (thereby overruling current patients’ higher evaluations of their own wellbeing), this will play a role in shaping (or solidifying) highly negative perceptions of life with the relevant illness or disability, compared to if we shape policy according to the much more optimistic evaluations of current patients. So, when Eyal writes ‘The resulting figures could help determine how urgent it is to prevent, treat, cure, or mitigate that condition’ he (accurately) describes only a part of the picture. The resulting figures and the policies based on them can also play a role in making such prevention or cure more or less urgent. Needless to say, this complicates matters considerably, in ways that I cannot get into here. But if we think that it’s not a good idea to push people’s preferences and perceptions of a life with disability (and other challenges) in this way, this in itself is a reason not to overrule the judgment of current patients in the way Eyal suggests.
Second, perhaps the discussion should push us in another direction entirely.11 Perhaps, then, I am right that current patients’ (higher) evaluation should not be second-guessed, at least not without weighty considerations that outweigh the main consideration I’ve been highlighting throughout. Still, perhaps Eyal is right that when it comes to policy decisions, current patients’ (perhaps mistaken) judgments should not receive special status. If so, what follows is that we should sever the tie between the relevant policy decisions and comparative judgments about wellbeing. Perhaps in line with views that downplay the significance of comparative judgments of wellbeing to general discussions of justice and equality, maybe we should come up with alternative ways of allocating resources and determining priorities, ways that do not exclusively depend on comparative assessments of wellbeing. It goes without saying, though, that pursuing this is far beyond the scope of this comment.
Footnotes
It will emerge that this way of putting the question—one of the ways Eyal uses to put the question—is importantly ambiguous as between an epistemic reading (whose answer is likely to best indicate the truth) and a more political one (who should get the last word on this matter, as it were).
Nir Eyal, Measuring Health-State Utility via Cured Patients, in Disability, Health, Law, and Bioethics 266–279 (I. G. Cohen, C. Shachar, A. Silvers, M. A. Stein eds., 2020).
This way of putting things assumes a—very minimal—sense in which assessments of wellbeing are objective. That is, it assumes that people may be wrong about how well their life is going. While I am happy to commit myself to much stronger objectivity theses, it’s important both to note that for the purposes of this comment I do not have to, and to see how minimal the assumption here is. In particular, even if what makes it the case that a life goes more or less well is something about the preferences of the person whose life it is, still a person may be wrong about that, about how well their life is going (or will go or would go) in such preference-satisfaction terms. Even if much of the relevant discussion is conducted, then, in QALY-related terms, this does not threaten my main point in this comment. I thank an anonymous referee for a relevant point.
Nor will it help if Eyal continues: ‘Oh, but you do not understand! Relying on past patients’ evaluations—rather than on yours—will benefit you! You will be getting more compensation!’ If anything, this is likely to offend even more. What’s at stake in the consideration that Eyal misses is, as I am about to argue in the text, not how much those with a colostomy are benefited, but whether they are respected. And in this way too (like the one I am about to highlight in the text), this case is in line with common cases of paternalism.
I thank two anonymous referees for pressing me on related points.
See ‘David Enoch, What's Wrong with Paternalism: Autonomy, Belief, and Action, 116 Proc. Aristot. Soc. 21–48 (2016)’ and the references there.
Eyal writes: ‘Some are keen to use the phenomenon of disability adaptation to claim that disability is not worse, just different.’ As you can see from the text, this is not my line.
The point in the text is consistent with there being (rare and somewhat atypical) cases that more closely resemble the case of the close friend reminding you of your love for pizza.
For some recent discussion, see Philosophical Topics 46(1) (2018)—a whole issue dedicated to doxastic wrongdoing. For my own (uncompromisingly evidentialist) view, in the context of a discussion of paternalism, again see Enoch, supra note 6. And for some related discussion, see ‘David Enoch & Levi Spectre, Statistical Resentment: What’s Wrong with Acting, Blaming and Believing on the Basis of Statistics Alone (unpublished manuscript)’.
Though I pursue some related questions in ‘David Enoch, False Consciousness for Liberals, Part I: Consent, Autonomy, and Adaptive Preferences, 129 Philos. Rev. 159–210 (2020)’, and I hope to pursue even more closely related questions in Part II of that paper (which is yet to be written).
I thank an anonymous referee for comments that made me see this option.
ACKNOWLEDGEMENTS
I thank Nir Eyal and two anonymous readers of the Journal of Law and the Biosciences for comments on a previous version. Funding source: The Israel Science Foundation, grant number 439/15.