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Thursday, March 24, 2005

Advance directives

I don’t know if anyone is talking about “advance directives” or “living wills” or the right to refuse life-sustaining medical treatment lately, but just in case anyone is, I thought it might help to confuse things beyond measure if I pointed out that

(a) some courts have insisted that advance directives have to be quite detailed with regard to specific levels of care and specific states of injury or illness;

(b) advance directives give courts and guardians guidelines for honoring patient autonomy– most importantly, an individual’s right to refuse treatment– but, of course, cannot account for the possibility that an individual might change his or her mind about refusing treatment after becoming ill or injured (and that such an individual might be incapable of saying so); thus, there is a possibility that the ideal of patient “autonomy” can be invoked both to honor the advance directive and to set it aside in favor of the argument that a patient’s radically changed circumstances, due to illness or injury, might have induced him or her to reassess his or her desires about treatment;

(c) the difficulties of entertaining the possibility that a person might “change her mind” about her advance directive become even more impossibly complex when the person’s mindedness is precisely what’s in question, as in cases of dementia, mental illness, or injuries and illnesses that leave a person conscious but incompetent; and

(d) adults with intellectual disabilities may not be competent to execute advance directives in the first place.

I’ll be more specific.  The legal cases In re Wendland (28 P.3d 151 (Cal. 2001)) and In re Martin (450 Mich. 204; 538 NW2d 399 (1995)) involved eerily similar circumstances: relatively young men badly injured in auto accidents, both of whom had repeatedly expressed– orally, to their families– the desire to refuse medical treatment in what they considered to be extreme circumstances.  As Mary Ann Buckley summarizes the case (this link is to a .pdf file), Robert Wendland

developed a drinking problem after the death of his father-in-law, who had been maintained on a ventilator while dying from gangrene.  While watching his father-in-law in that condition, Robert told his wife, Rose, “I would never want to live like that, and I wouldn’t want my children to see me like that, and look at the hurt you’re going through seeing your father like that.” Robert told Rose that her father “wouldn’t want to live like a vegetable” and “wouldn’t want to live in a comatose state.”

Both Rose and Robert’s brother, Michael, became concerned about Robert’s safety because of his drinking.  Michael told him, “I’m going to get a call from Rosie one day, and you’re going to be in a terrible accident.” Upon Michael’s warning that he would end up laying in bed “just like a vegetable,” Robert responded, “Mike, whatever you do[,] don’t let that happen.  Don’t let them do that to me.” According to one of his children, Robert said during that conversation that “if he could not be a provider for his family, if he could not do all the things that he enjoyed doing, just enjoying the outdoors, just basic things, feeding himself, talking, communicating, if he could not do those things, he would not want to live.” Rose testified that Robert “made clear” to her that under no circumstances would he want to live if he had to have diapers, if he had to have life support, if he had to be kept alive with a feeding tube or if he could not be a “husband, father, provider.”

Robert was severely injured in an automobile accident in September 1993, as a result of his driving while intoxicated.  He remained in a coma for sixteen months.  Although he eventually regained consciousness, he was left both mentally and physically disabled.

. . . He first began to show signs of responsiveness in late 1994 and early 1995.  Between January and July of 1995, Robert’s feeding tube dislodged four times.  Rose authorized surgical replacement of the tube the first three times but refused the fourth.

At this point Robert’s estranged mother, Florence, and his sister filed for a restraining order to block removal of the feeding tube.  And here’s where things got really difficult.  Buckley writes:

Despite support for Rose’s decision by his counsel, his physician, and the ethics committee, the trial court found that Robert’s statements to his wife and brother while he was competent were not enough to show by clear and convincing evidence that he would have wanted to die if he were minimally conscious.  The trial court held that a conservator could withhold artificial nutrition and hydration from a minimally conscious conservatee if shown by clear and convincing evidence to be in the conservatee’s best interest, considering any wishes the conservatee may have previously expressed. The court found that Rose had not met her burden. [My emphasis.]

The appellate court reversed, and then in 2000 the California Supreme Court reversed the appellate court in turn, arguing (among other things) that Robert’s stated wish not to live “like a vegetable” pertained only to “persistent vegetative state” rather than the “minimally conscious but incompetent” condition in which he found himself.  Robert eventually died in July 2001 of pneumonia.

Martin is similarly agonizing, involving severe injuries and deeply divided families.  But this time I’ll just give you the digest summary:

In determining whether a person, now incompetent, would desire to refuse life-sustaining medical treatment under the circumstances, the predominant factor is the existence of a prior directive to that effect.  The prior directive may be written or oral.  The weight of an oral statement depends upon the remoteness, consistency, specificity, and solemnity of the statement, and a statement made in response to another’s prolonged death does not provide clear and convincing evidence of the desire to refuse treatment.  In this case, the patient was severely injured in an automobile accident, and suffered brain damage which significantly impaired his physical and mental functioning.  The injuries left him partially paralyzed; he cannot walk, talk, or eat and has no bowel control.  Although he remains conscious, his cognitive abilities are seriously affected.  Testimony established that before his accident the patient had verbally repeatedly expressed his desire not to be maintained if incapable of performing basic functions and without hope of improvement.  The patient’s expressions did not sufficiently specify the circumstances presented and did not constitute clear and convincing evidence of the desire to refuse treatment.

OK, what to make of all this?  First, that the supreme courts of Michigan and California have set an astonishingly high standard as to what constitutes “clear and compelling” evidence of an individual’s wishes.  Second, that these cases have implications that you attorneys out there would call “sweeping”: as Buckley points out, “Of the approximately six thousand deaths that occur daily in the United States, it is estimated that approximately seventy percent involve decisions to forego life-sustaining treatment. . . . [P]atients with dementia often retain some level of cognitive functioning before they are deemed terminally ill, yet after questions of life-sustaining treatments arise.  In addition, given the rarity of PVS [permanent vegetative state], it is reasonable to assume that the majority of such decisions involve patients who are at least minimally conscious.  As a result, the ‘narrow class’ that Wendland affects in fact includes a significant number of individuals.” And third, that in these cases we’re not talking about “permanent vegetative states”; we’re talking about far more ambiguous and indeterminable states of mind in which it is profoundly unclear as to whether the person in question is capable of perceiving his state and/or capable of deciding either to refuse or maintain life-sustaining medical treatment.  But if, just if, hypothetically speaking, if there were a case where you had a person in a persistent vegetative state and a court or a legislature willing to set aside his or her guardian’s decision to refuse life-sustaining treatment, then the bar for refusal of care would be almost inconceivably high.  You’d have to devise extremely specific and detailed advance directives covering all manner of states of injury, in order to provide “clear and compelling” evidence of your wishes.  And even then, the possibility would remain that your wishes would not be honored.  As Buckley points out, the California Supreme Court’s “attempt to honor autonomy has the contradictory result that patients who would have refused treatment no longer have the right to have their family assert that choice on their behalf.”

Deep breath.  Now for the paragraph that will lose me some friends in the disability community.  Yes, our society fears and stigmatizes disability, especially when it entails significant physical or cognitive impairment.  Yes, it is entirely possible that some people, upon losing some physical or cognitive functions, might come to understand the value of living with disabilities even though they had once feared and stigmatized disability themselves.  Yes, we should resist brutal, utilitarian cost/benefit analyses of the value of human life, especially if we’re living in a society where health care is privatized rather than a social good.  Yes, it’s possible that Robert Wendland and Michael Martin themselves had attitudes toward disability that some of us would find undesirable or objectionable.  And yes, finally yes, of course yes, the disability-rights critique of these cases is substantially different from the religious-fundamentalist position, and nobody pays much attention to the former while the Culture of Life® gets all the airtime.  Nevertheless.  It pains me to see disability advocates taking positions that effectively undermine the very ideal of individual autonomy on which so much of the disability rights movement rests.  I realize– in fact, I believe I acknowledged at the outset– that “autonomy” is a problematic ideal in these cases, all the more so when you’re dealing with (a) the decisions of surrogates and guardians or (b) persons who would not be able to meet the intellectual standards of “individual autonomy” at any point in their lives.  But it seems to me the truly liberal imperative here should lead us to honor the wishes of others with regard to their desires to refuse medical treatment when those wishes can be ascertained by a preponderance of the available evidence [UPDATE:  no, that’s too low a legal standard-- “clear and compelling” is the proper standard, though I still believe that Robert Wendland’s evidence was clear and compelling], and we should likewise defer to the wishes of the legal guardians of incompetent persons, charitably granting them the assumption that they are indeed acting in what they perceive to be their charges’ best interests.  And we should do so even when we ourselves disagree with other people as to their own wishes, or their perceptions of the best interests of those whom they serve as guardians.

These cases pose excruciatingly difficult moral questions and involve competing moral imperatives.  They also put ordinary and extraordinary people in wrenching emotional circumstances, in case you haven’t already noticed.  But amid all the tangle and the murk, this postmodern situational ethics and that neo-pragmatist antifoundationalism, the fundamental right to life and the fundamental right to refuse medical treatment, there is at least one constant, one bedrock principle, one thing that is certain beyond all doubt: Republicans are ghouls, and Tom DeLay is one of the foulest ghouls ever to have blighted our fair land.

Posted by Michael on 03/24 at 09:35 AM
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