Legal Commentary

The comments to an earlier post of mine that took on something of a life of its own, which suggested to me that this issue might be of more general interest to the blogosphere. 

At the highest level of generality the question might be posed as such: what are the limits of the domain of the health care system, or the permissible ends of medicine?  To put the matter more concretely, consider the following three cases:

(1) Adam suffers from Apotemnophilia, a condition in which people are obsessed with the idea of cutting off their limbs (for more on this condition, see Carl Elliot, Better Than Well, "Amputees by Choice" chapter, which describes the condition and attempts to get it included as part of the DSM-IV, the bible of psychiatry).  The condition is often highly psychotherapeutically treatment resistant, and there have been a number of cases where patients, refused amputative surgery, have attempted self-amputations to their detriment.  The apotemnophiliac patient often describes himself as feeling as though his body is "wrong," that the extra limb is not "him." This in turn may lead to obsessive thoughts about the limb and other forms of psychological suffering.  Assume for the purposes of the question that the limb amputation is very likely to lead the person with the condition to become psychologically "normal" (scare quotes intentional to recognize how fraught this term is), that is, that he is likely to be able to live a life similar to that of someone who loses a limb involuntarily by accident.  Should medical ethics bar a surgeon from removing the limb if all non-surgical options for treating the disorder have been exhausted and are unsuccessful? Should the state pay for the surgery, either directly or indirectly (for example by allowing its expense to count towards the medical deduction?)

(2) Ben is diagnosed with gender identity disorder. Although born as a biological male, he has had a strong and persistent gender identification of female, he feels persistent discomfort at being a male, and feels significant distress and impairment in social, occupational, or other important areas of functioning (these are some of the DSM-IV diagnostic criteria).  For example, imagine his distress has lead to unemployment (because difficult to get hired due to other-gender behavior), and drug use, as well as severe depression. He decides he wants sex-reassignment surgery. Should medical ethics bar a surgeon from performing the surgery if all non-surgical options for treating the disorder have been exhausted and are unsuccessful? Should the state pay for the surgery, either directly or indirectly (for example by allowing its expense to count towards the medical deduction?)

(3) Carl is obsessed with his nose.  He has been since he was 15.  He thinks it spoils his face. He blames it for his lack of success in dating. He finds it hard to concentrate when working near other people because he thinks they are staring at him.  Years of psychotherapy have not made this feeling go away. Finally, out of desperation, he consults a plastic surgeon to get a "nose job." Should medical ethics bar a surgeon from performing the surgery if all non-surgical options for treating the disorder have been exhausted and are unsuccessful? Should the state pay for the surgery, either directly or indirectly (for example by allowing its expense to count towards the medical deduction?)   

This issue has come up as part of the session on enhancements I do in one of my courses,  and also led to one of the most lively sessions of a conference on human enhancement we had at Harvard Law School's Petrie Flom Center.  My views on the subject have also been informed (if only to make things more complicated)  by a great panel I moderated on health care law issues for the trans community at Harvard Law School Lambda's conference on translaw issues, and the complex relationship between medicalization of the trans identity and getting access to health care and increased legal recognition.

The current state of play, as I understand it, is (1) as to amputees a doctor who performed the surgery might very well lose his license or at least be subject to significant critcism from bioethicists, and the state certainly would not pay for it or allow a tax deduction. (2) As to the trans person in distress, there are many doctors who would perform the surgery and it is generally accepted by medical ethics. A few states have in the past covered the surgery through Medicaid, and there is litigation pending as to whether it should be tax-deductible.  As to (3) Many doctors perform "nose jobs," and bioethicists are usually fine with it so long as the payment comes from private funds and not the public fisc (althoug this may overstate the consensus).  The operation is not generally tax-deductible, nor is it covered by Medicaid.

Is the current state of play normatively justifiable? What, if anything, distinguishes these cases from a normative point of view?

I mean this to open up a discussion, but let me examine a few initial possible grounds of distinction:

(I) Irreversibility -- It would be tempting to separate the amputation case on this ground, but all of these are irreversible to some extent. Especially for MTF trans people seeking the surgery, it appears to equally irreversible.

(II) Externalities: Arguably only the amputation case imposes third party externalities (beyond the cost of providing the surgery). During the conference Judge Posner asked whether this person could then demand ADA coverage, etc. I think this is a valid distinction, although perhaps we could get rid of it by imposing some kind of waiver condition as to the coverage of these statutes. If the issue is not externalities but moral hazard, it seems somewhat far-fetched -- it seems implausible that someone might amputate just get government benefit for the disabled.

(III) Wrong to choose a disability: We might argue that what is wrong with amputation is that it is wrong to for medicine to facilitate a choice to "disabled." This might either be argued (a) from a more Aristotelian or virtue ethic point of view, that the excellence of being human is to have all one's limbs.  Or it might be argued on (b) a more welfarist ground, that overall welfare is decreased by the surgery. Or it might be argued for (c) on the ends of medicine

(a) may have difficulties distinguishing the trans case.  Of course, I am not suggesting that to choose to be a member of the opposite sex is to choose to be disabled, but one is choosing to be a "disabled" (again scare quotes) member of the opposite sex, in that one cannot achieve pregnancy in the MTF case. It is unclear how good an argument this is.  On the one hand, for purposes of ADA coverage, the Supreme Court treated "reproduction" as a major life activity, the substantial limitation of which gave rise to a "disability" in Bragdon v. Abott.  On the other hand, many individuals voluntarialy choose to make exactly this choice, e.g., through getting one's tubes tied, and sometimes irreversibly (here the Sen/Nussbaum distinction between capabilities and functions might be useful, having a capacity versus choosing to excercise it).  Does this argument problematically express a view on the "humanity" or "virtue" of those who are missing a limb not by choice? Does it thus problematically smack of "ableism"? I think not, but maybe others will disagree (this discussion has played out somewhat in bioethics, although with the added twist of choosing for a child, in the controversy over whether deaf parents should be allowed to use Prenatal Genetic Diagnosis to select a deaf preembryo for implantation).

On (b) the problem is that it is unclear how the calculus might come out. While losing one limb might both make you worse off and make others worse off because you are less productive, that has to be measured against a baseline of how good you and others are in your current apotemnophiliac condition. One can imagine that some obsessive thinking would be so persistent as to have worse welfare consequences for the individual and society, than the limb amputation.  Some of this would turn on how the externality argument is resolved.

On (c) the question then becomes what is the proper ends of medicine.  Is it "health" and what does that mean? If health means curing disease, simplicter? Well then we will have to define disease, and whether psychiatric disorders count, and whether they have to be part of the DSM-IV (we'd have a further argument about whether deferring to the psychiatric community, its internal processes, its biases, makes sense). The "nose job" would probably be excluded, unless it was part of something like body dysmorphic disorder.

On the other hand, there is the famously broad definition of the WHO constitution preamble, which says that health is "a state of complete physical, mental and social well-being, not merely the absence of disease or infirmity." On this definition, while the amputation surgery would decrease physical well-being, it may improve mental (and possibly social) well-being to a great extent.  Can we trade one category for the other? The more the answer seems yes, the more this might collapse into a purely welfarist account, which leads us to interesting (and well-trod) questions relating to happiness versus well-being (Soma anyone?) This answer will lead us to put less stock in divisions between the three cases, and instead might focus on how much welfare is gained at how much cost (which mimicks, to some extent, the QALY approach to health rationing).

There are also attempts at intermediate definitions, such as Norm Daniel's "species typical functioning" approach. 

The analysis for the purposes of determining whether there should be a prohibition on getting surgery X with private dollars vs. government subsidization of X (in some form) also seems to me crucially different, especially because the latter requires (to a greater extent) consideration of how the individual's needs compare to other individuals in the system, scarcity and choice.

This is all just tentative thoughts to get everyone going on something I've been thinking about as of late....