My Disaffection with Advance Directives, and Maybe Autonomy Too.

I just started teaching the Law of Death and Dying for the umpteenth time.  I’ve always more or less been a part of the cadre of (former in my case) hospital lawyers who advocate for everyone to have an advance directive so that doctors know what they’re supposed to do when you’re incompetent and life and death decisions must be made.  Innumerable studies suggest the Advance Directive experiment hasn’t worked, but we haven’t come up with anything better, and in certain populations (those for whom death in the next decade is a statistical probability due to age or diagnosis), they can help with decision-making.  The war in Iraq has caused me to become much more skeptical about Advance Directives.

Rebecca Dresser of Washington University in St. Louis employs personal identity theory to oppose exclusive reliance on  advance directives, arguing that the competent, functioning person who decides what health care she should receive, say, fifteen years hence is not the same person to whom these directives will apply.  That is, that the person now in a nursing home with Alzheimer’s Disease  who no longer recognizes his wife or children but seems basically content , is not the same “person” who executed the Advance Directive a decade or two ago with a dread of incompetence.

I have tossed my students into this debate every year.  Last year, I unequivocally took the position that Dresser is right, to the consternation of most of my students.  The prior semester, one of my (somewhat older) students was preparing to ship out to Iraq with his National Guard unit. That he enrolled in Death & Dying his semester before deployment was a remarkable thing to me, but I went with it, and we talked quite a bit about advance directives for soldiers. I even toyed with the idea of training law students to assist my student’s unit in preparing their own Advance Directives – this war’s soldiers are much more likely than those of prior wars to return home brain-injured – their torsos are pretty well protected by armor, but they still lose limbs, and the many soldiers who would previously have died are returning home with brain injuries.

But the more I learned about these  soldiers, the more convinced I became that at least for these very young adults leaving for Iraq, Dresser must be right.  There is no way an 18 year old transitioning from his high school foot ball field to boot camp, getting ready to ship out, is the same person as the injured and incompetent (otherwise the Advance Directive would be irrelevant) soldier returning to Walter Reed or a rehab institute.  While my experience with war and soldiers is pretty limited, I found myself unwilling to help the young men and women, many of whom are younger than our students, pre-plan what their treatment decisions were should they got blown up by an IED.

And of course, you can imagine the outrage of most of my students, almost none of whom ever conceived of the remote possibility they’d be plopped down in Iraq or Afganistan. But by rejecting Advance Directives for soldiers, I was refusing to respect their (my students as much as these soldiers) autonomy and constitutionally protected right of self-determination (actually, the constitutional jurisprudence is not so straightforward as they would have it).  To them, I was essentially arguing for a return to paternalism , upending the decades of progress by the adherence to the doctrine of informed consent and patient autonomy.

They are right.  I have become disenchanted with power we accord autonomy.  Sometimes other principles should prevail, and sometimes a decision is patently wrong or irrational or transient.  I can’t bring myself to aid an 18 year old who should be on a date at the movies prospectively decide whether he’s willing to live a life without legs, or imagine whether she can tolerate living with the consequences of brain injury.  My veteran student returned to school this semester.  I look forward to testing my new perspective on him.

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8 Responses

  1. Matt says:

    A few quick thoughts. I have no illusions that these questions can be solved in a blog comment so I’m not attempting to do that. But, at the least, this theory of personal identity is a controversial one in the literature on the subject. (I’m personally fairly sympathetic to the “animalism” view put forward by Eric Olson and others that would, I think, conflict with the account here quite strongly.) So, while it’s worth thinking about, it should be done with much hesitation, I think. Quite a lot of problems, including legal problems, crop up if you take this view too seriously. (Does someone have to honor a contract with the person who has changed? Why, if it’s not the same person and nothing special is put in the contractual language about honoring it with this new, other person? If you found the wallet of the person before the underwent this change, and they are now a different person, do you get to keep the wallet? You don’t have a duty to return a found wallet to some other person, do you? Etc. I’m not saying these are decisive, but just that the “new person” idea has to be a metaphor to some degree, and we don’t seem to take is seriously in many cases.)

    Secondly, on autonomy, are you not still honoring it, but now just honoring the autonomy of the “new” person? Or do you mean we should also not follow the treatment requests of people made “on the spot”, as it were? That seems a much harder position to support, and not one that’s clearly supported by the personal identity considerations.

    Third, don’t we often think that pre-commitment devices are both rational and necessary, and are not advanced directives of this sort? (Uylsses and the sirens being the paradigm case, but why is this sort of pre-commitment device any different from the many, many others that we use, and that are probably necessary?)

    Finally, would there really be an advanced directive possible, or made, that said that if an otherwise savable person had his or her legs blown off they wouldn’t want to live? I’ve never heard anything like that and suspect they would not be allowed or honored in most cases anyway. For one thing, that’s not a case where one is no longer able to make decisions. I’d be interested to hear if I’m wrong, but if not, it’s a distraction to include it in the debate.

    Anyway, these are important and difficult problems that I’m glad to see people think about.

  2. Kathleen,

    This is a great post. I am quite sympathetic to Dresser’s perspective, and think it takes on even more importance, as Carol Gill noted in a 2004 article, when one considers the undeniable fact that able-bodied persons are uniformly disastrous at making QOL determinations for even severely disabled persons.

    Thus, combining this empirical point with Dresser’s argument suggests there are profound reasons to be very suspicious of advance directives made by able-bodied persons that rely on QOL determinations that we have every reason to believe are quite unreliable.

    Of course, the alternative, that advance directives are morally untenable, is problematic for a number of reasons Matt notes, as well as the notion that it seems to devalue the notion of agency itself, quite independent of the metaphysical point regarding identity. (That is, one could consistently maintain both that the self at T1 is different from the self at T2 and that respecting the agency of the self at T1 requires we honor the advance directive. This, as I understand it, was the basis of Nelson and Frader’s response to Gill).

    And I, like you, have become deeply disenchanted with the power we accord autonomy, mostly because we typically fail to understand the myriad ways in which the conditions of life dramatically shape such autonomy. Autonomy is a perfectly fine principle, but moral action occurs on the local, particular level rather than the abstract plane, and hence I tend to find the principle itself rather unhelpful as an action guide in the many, many situations in which principles seem to conflict.

  3. Matthew Reid Krell says:

    Tough question. I kind of frame this differently in my mind – this may or may not be useful in thinking about it, though:

    To what extent does compliance with past choices regarding current care (like the advance directive and its ilk) constitute dead hand control that we tend to generally disfavor? And to what extent is that control justified by an inability to make choices at the present time?

    I don’t have a good answer, because I’m not as familiar with this topic as I’d like. But I feel like we don’t have a good enough standard for incompetence. That might be a place to start.

  4. There’s much I agree with in the above comments, especially the second and third paragraphs by Matt and Daniel’s point about QOL determinations made by able-bodied persons. And there’s the simpler point that those making Advance Directives are often profoundly ignorant as to what they might entail. Carl Schneider tells the following story:

    “I recall a patient who was admitted to a hospital and was fast becoming unable to breathe. He arrived wielding an advance directive announcing his wish not to be intubated. A physician pressed him on the point and told him he would surely survive if, but only if, he allowed himself to be intubated for a few days. The patient expostulated that of course he wanted to be intubated, that his advance directive had only meant he did not want to be kept alive in a perpetual coma, to live like a vegetable.”

    Of course it is well-known that many people are reluctant to make medical decisions for themselves (prospective or otherwise) and their reasons for doing so can be either reasonable and irrational. In the latter case, myopia, self-deception, wishful thinking, states of denial, and so forth may lead an individual to refuse to think about states of affairs considerably different from the present (i.e., a precipitous decline in well-being), including a future marked by significantly diminished bodily and mental capacities and functions, let alone death and dying. Young people generally have a difficult time in our society contemplating the reality of death and dying until or unless someone near and dear to them dies or they themselves become afflicted with a serious illness.

    Which brings me to the specific question here regarding Advance Directives for soldiers. I think it would be important to at least broach the subject with soldiers/students in a way that makes clear your concerns or reservations, making the assumption that you probably will not be the only person to speak with them on this topic although you may be the most informed with regard to the legal and perhaps ethical issues. Not having Advance Directives can put considerable burdens on those responsible for one’s health care and it’s possible others one may NOT want to be making decisions for one will be placed in a position to do so (by legal default). On occasion, family members or surrogate decision makers may make wholly unreasonable decisions or family members may vigorously degree as to the course or nature of treatment or non-treatment, in which case the requisite decision making will be in the hands of a hospital bioethics committee (or something of the sort).

    I admit to being troubled by this closing comment: “I can’t bring myself to aid an 18 year old who should be on a date at the movies prospectively decide whether he’s willing to live a life without legs, or imagine whether she can tolerate living with the consequences of brain injury.” It seems to me that this is tantamount to a denial of reality, of postponing the sorts of decision-making that adults must make, however uncomfortable and despite the degree of uncertaintly involved. Certainly young men and women who are doing are bidding in police actions or war and are trained to kill other (combatants or soldiers) on our behalf should possess the psychological maturity to confront the kinds of questions one is compelled to deal with in the use of Advance Directives in this case.

    We should also keep in mind the myriad conceptions of “autonomy” floating around, most of which are NOT of a strictly Kantian moral sort but more along the lines of personal independence or ideological notions of individuality and self-expression (e.g., rugged individualism or the ‘self-made’ man variety), or the various notions of self and personhood one finds in the history of Anglo-American Liberalism. I suspect Daniel is conflating or invoking both the Kantian notion as well as the broader if not more inchoate conceptions that many of us explicitly or tacitly subscribe to: thus, the sentence beginning, “And I, like you, have become deeply disenchanted with the power we accord autonomy,” relies on the latter notions, while the sentence, “Autonomy is a perfectly fine principle, but moral action occurs on the local, particular level rather than the abstract plane…,” reflects irritation with the Kantian conception of moral autonomy, which is often accused, among other things, of being too abstract (and formal, etc.). I’d like to address this criticism as I think it’s fairly common although mistaken (and Lord knows Daniel and I have been down this road before, so my remarks are not addressed so much to him as for the benefit of others).

    The abstract character of moral autonomy is absolutely unavoidable and in no way to the detriment of the particular or local, the unique exigencies of circumstance. It is abstract because it entails universalizability, which is indispensable, as Kant showed us, because it reveals a commitment on the part of the moral agent to principles of practical rationality in the sense that, as J. David Velleman says, “to act for reasons is to act on the basis of considerations that would be valid for anyone in similar circumstances….” The converse, namely, adherence to maxims that are not universalizable, is ethically unpalatable if only because it means (or often means) “commitment to the consequences of their universal adoption would be incompatible with a commitment to the means of acting on them” [or a ‘pragmatic contradiction’ inasmuch as it is the ethical analogue of what Elster discusses under the rubric of ‘willing what cannot be willed,’ for example, the attempt to ‘will’ spontaneity] (Onora O’Neill).

    The ethical principle of autonomy, or principles thought instrinsic to or derived from same, like other universal (or ‘generalizable’) principles, as O’Neill informs us, “need not mandate uniform treatment; indeed they may mandate differentiated treatment. Principles such as ‘taxation should be proportionate to ability to pay’ or ‘punishment must fit the crime’ are universal in scope but demand differentiated treatment. Even principles that do not specifically mandate differentiated treatment will be indeterminate, so leave room for differentiated application.”

    O’Neill addresses specifically the disenchantment with the “abstract” quality of such principles as well, in other words, that they’re too abstract to serve as useful guides for action. She notes that Kant himself emphasized that the application of principles to cases “involves judgment and deliberation” and this too requires sensitivity to circumstance (Daniel’s ‘the local, particular level’). Indeed, the abstract character of principles is essential to their function as “side constraints,” in which case they GUIDE and do not MAKE (say, on the order of algorithms) decisions.

    I would recommend the following books to think more about some of the issues raised above:

    O’Neill, Onora. Autonomy and Trust in Bioethics (2002).

    Saks, Elyn R. Refusing Care: Forced Treatment and the Rights of the Mentally Ill (2002). [Not directly on point, to be sure, but there’s much in this book directly and indirectly pertinent to our topic.]

    Schneider, Carl E. The Practice of Autonomy: Patients, Doctors, and Medical Decisions (1998)

    Tauber, Alfred I. Patient Autonomy and the Ethics of Responsibility (2005).

    Velleman, J. David. Self to Self: Selected Essays (2006).

    Kathleen,

    Perhaps you and/or your students would be interested in the bibliography I assembled on “death and dying,” found here: http://ratiojuris.blogspot.com/2009/07/death-dying-selected-bibliography.html (Click on the highlighted phrase in the post for the bibliography as a Word doc.)

  5. In the fourth para. above, please read: “…or family members may vigorously disagree….”

  6. Thaddeus Hoffmeister says:

    First, I wish this posting had been around when I wrote my article about advance medical directives (AMDs) in the military (177 Mil. L. Rev. 110). As an advocate of AMDs in the military, I was constantly faced with the following question by soldiers, how can I precisely predict in the future what medical treatment I will or will not want? You can’t, no one can with certainty. However, what is the alternative? Something is better than nothing. AMDs also take some of the pressure off of your health care providers and or family members who are generally left with making the tough decisions.

  7. ParatrooperJJ says:

    Does DOD even consider ADs of servicemembers valid in combat casualty care?

  8. Bill Poser says:

    Your point is well taken, but I wonder to what extent the issue should be not the attitude of the person who has been injured and whether or not the person issuing the advance directive can be considered the same person, but rather the comfort that the advance directive, and the knowledge that it will be obeyed, gives to the issuer PRIOR to the injury? To take my personal example, I am not all that concerned about loss of memory and incompetence. What frightens me is the idea that I might be injured in such a way that I could no longer communicate and was, at best, unable to do anything and bored to tears, or worse, in great pain or discomfort. Being kept alive in such circumstances would be torture. The value of an advance directive dealing with this case is in considerable part the comfort that it gives me NOW.