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.
I’m utterly shocked about those two cases.
I think I will add a line to the effect of “If you guys try any of that he-would-have-changed-his-mind bullshit, I’ll fucking haunt you for the rest of your natural lives.”Posted by on 03/24 at 11:42 AM
I believe the Buckley article may overstate the concern about the degree of specificity required in one’s advance directives in California. I did not read the Martin case out of Michigan, but the California Supreme Court decision, Conservatorship of Wendland (2001) 26 Cal. 4th 519 (the Supreme Court reversed the Court of Appeal decision), contained a very interesting fact: Wendland, who was conscious, was asked a series of questions and was responsive. When asked at one point if he wanted to die, he would not respond. This was obviously significant to the Supreme Court because it revealed a present position of a conscious person. Further, the Supreme Court of California found the issue of consciousness to be an important issue to consider in these situations. It then held at the end of its opinion:
“Our decision today affects only a narrow class of persons: conscious conservatees who have not left formal directions for health care and whose conservators propose to withhold life-sustaining treatment for the purpose of causing their conservatees’ deaths. Our conclusion does not affect permanently unconscious patients, including those who are comatose or in a persistent vegetative state [Citations], persons who have left legally cognizable instructions for health care [Citations], persons who have designated agents or other surrogates for health care [Citations], or conservatees for whom conservators have made medical decisions other than those intended to bring about the death of a conscious conservatee.”
Your essay was otherwise well argued, as usual. The Supreme Court’s above statement appears to agree with your point that, even though consciousness is an important issue, there are limited circumstances where a conscious person may legally choose to be allowed to die, rather than continue to be fed through a tube.
While I am not able at this time to nominate you for a law degree in California (it is not good form to cite a reversed Court of Appeal decision for one’s argument), I hereby nominate you, in the words of the Florida congressman who did the same for a particularly favorite neurologist of Sean Hannity, for the “Nobel Peace Prize in Medicine.” You would also be an excellent conservator, unlike Sean Hannity’s favorite neurologist.Posted by on 03/24 at 11:50 AM
Thanks, Mitchell. Buckley is, of course, taking issue with precisely that “narrow class of persons” passage in the Court’s opinion, and I think that in the current climate, it’s best to be exceptionally careful about the scope of Wendland—and the degree of specificity in one’s advance directive.
The agonizing thing about Wendland was precisely that Wendland himself was conscious—and responsive—at various points between 1994 and 2001. The question of whether he had the capacity to change his mind about his earlier statements regarding permanent disability and life-sustaining care, then, is not an academic one.
As for the citation error: oops! I went back and fixed it.Posted by Michael on 03/24 at 11:57 AM
It shouldn’t be a difficult matter to set up a living will, even one that includes “extremely specific and detailed advance directives.” Downloadable forms are all over the internets, and they can be tailored for state specificity. (I don’t mean state as in fugue, but as in, say, Florida. OK, fugue.)
I did mine a couple years ago, and have since updated more than once—just like a codicil to a regular will—to keep it from getting too remote.Posted by on 03/24 at 12:02 PM
I was just making this point to a friend of mine last evening (although you expressed it far more thoroughly and eloquently): even in the absence of a living will, who in the world do you think would have the *best* idea of what a spouse’s wishes would be in a case of severe mental handicap bordering on PVS? The courts? Congress? The president? The handicapped’s parents? I would argue that the competent spouse, having been the handicapped’s closest confidant during the time directly preceding the injury or illness, would be best qualified to make decisions on the handicapped’s behalf.
It’s interesting how conservative allegations of Michael Schiavo’s supposed ulterior motives betrays a fundamentally dim view of human nature. I’ve never been able to reconcile this pessimism with their unflagging hard-ons against abortion, euthanasia, and suicide.Posted by on 03/24 at 01:38 PM
I found the summary of Robert Wendland’s reasons for wanting to refuse medical care in the event of a drastic brain injury quite interesting. Amanda Marcotte had a very thought-provoking post at Pandagon a few days ago about the gender aspects of the Schiavo case, suggesting that our ideas about the patient might be different if the patient were a man. Of course, most of us, according to polls, do feel that Terri Schiavo should be let go. But I think we--and the patient’s parents--might feel (even) more horror about the position of the patient if he were male, and thus perceived to be meant to be active, autonomous, et cetera. That doesn’t seem to be the case with Robert Wendland’s parents, but I wonder if it would have made a difference to the Schiavos.Posted by on 03/24 at 01:52 PM
I think you have exactly the right take on the autonomy issue, Michael, as sensitive as the disability rights angle is.
The registry links to a very useful workbook for figuring out what your feelings really are, and said workbook contained the (paraphrased) question: if your doctors told you you would be confined to a wheelchair for the rest of your life, would you want to continue living?
Talk about squicking one’s sensitivity: what a horrible insinuation, to place being in a chair on a spectrum with brain death! And yet I recognize that suicidal depression is a common effect of paraplegia and its cousins. A friend of mine killed herself this year for a very similar reason… and she was a lifelong disability activist.
I was talking with a co-worker yesterday about Terri Schiavo, she in the disability rights community, and she had bought in to the worst right-wing myths about Michael Schiavo and his motives. Distressing.
I find some structural similarity between this issue and the issue of cochlear implants, actually: the conflict between what’s right for the disabled community and what’s right for individual members of that community. And as seems to be the case for you, Michael, my knee is always going to jerk in the direction of the individual’s rights.
Shorter Clarke: Thanks for this post.Posted by Chris Clarke on 03/24 at 02:29 PM
Living in Tampa, I’ve heard about the Schiavo case for years, and I’ve been struck with the dilemmas of disability-rights activists with the Schiavo case. It’s not just the legal analysis of advanced directives but the package of arguments used by Schiavo’s parents’ lawyers. Not Dead Yet has sided with the Schindlers, even though that package starts with, “Terri’s not really in PVS,” as if that is the most important reason to disagree with Michael Schiavo’s judgment. You’ve addressed another issue I hadn’t thought of.
Thank you.Posted by Sherman Dorn on 03/24 at 03:36 PM
Thank you. After avoiding forming an opinion on this case for a long time, I’ve spent much of this week furiously studying its details. Now I’m bracing myself for the arguments I’m going to have with disability activist friends.
I feel that the cause of disability rights is being hurt by being linked to this case. This case has been fairly tried according to state law and no facts or arguments have been brought forward to prove otherwise. The Schindlers and their allies will not change the outcome, nor are they going to sway the majority of the public to their side.
This could be a “teachable moment,” where the public might learn something about the disability critique of euthanasia, the injustices of the health care system, etc. Instead, it looks as though the proposed answer to the “right to die” movement (and those who want to push for a “duty to die") is a “duty to live.”
Those who cannot represent themselves must be represented—someone has to speak for a person who cannot make his or her wishes known. It is true that people in a persistent vegetative state are not treated under the law in the same way as people in other states of consciousness, but to claim that this is a form of discrimination against the disabled requiring urgent action seems to me an ethically dubious as a principle and a politically insane strategy.
Meanwhile, in Texas the right to end medical treatment for sick children has been taken away from parents and given to hospital committees. Prejudice threatens the lives of disabled people every day. Is it necessary, though, to say that because of this prejudice, no amount of due process is sufficient to establish the intent to refuse medical care?Posted by on 03/24 at 04:43 PM
talk about a circus: that poor, poor family--all of them.
for anyone who has not read the 40 page report that was written by the 5 doctor team for Gov. Bush in 2003, i highly recommend that you do so. there is so much demonization of all the various family members involved, and this report debunks all of that nonsense, while explaining the medical and case history pretty well--
i think the only thing this case makes clear, is that such difficult, end-of-life (or not) circumstances and decisions should be PRIVATE, for FAMILY and LOVED ONES only. there are no “right” answers here that can apply to everyone, in all instances.
although these cases may wind up in the courts as a last resort when families disagree, they absolutely should be kept safely away from pandering idiot politicians, disingenuous “interest” groups, and the circus that currently passes for our media!
as for what this may end up meaning for Living Wills and Durable Powers of Attorney, i am still sure as heck going to get MY wishes and MY designated decision-maker on file, and circulated widely among my family--in particular among any who might be inclined to stand in the way of my wishes because of their own religious (or other) beliefs.
as i’ve been having to look these forms & rules up for my co-workers, and even for 20 year old students this past week--a word of advise, if you are not planning to consult a lawyer, get the forms that are specific to your county & state from your county Bar Association online, and even if your state does not require notarization, get a notarized copy on file with your doctor or someone anyway in case something happens to you in a state that won’t pay any attention otherwise (although i guess if you are in FLA then it is just up to Jebbie anyway.)
looking at the government’s intrusion into this family’s tragedy, and taking into account their statements and actions regarding related issues like the death penalty, abortion, and Bush’s own Texas state law that allows the hospital/state to refuse a patient care if they can’t afford to pay, even OVER the parent/guardian/person’s own wishes, i can reach only one conclusion: we are looking at a possible future where all Life and all Death are derived only and entirely from The State.
The Lord Bush Forceth Our Life Upon Us, and He Taketh also It Away (or, as my dad likes to say, “Kid, I brung you into this world, and I can damn well take you out of it, too, so listen up!")
and last, thank you Michael for making the disability issues clearer for me. i was having some trouble understanding how this case related to that community.
-L.Posted by on 03/24 at 04:59 PM
This just terrifies me. My husband and I both have advance health care directives and durable powers of attorney for health care, and they both, frankly, err on the side of death. If it looks like I’m in PVS or a permanent coma, let me go. My religious fundie in-laws are horrified by this, and refuse to say that they would respect my husband’s wishes. I had comforted myself with the knowledge that we have left written instructions and had this discussion with everyone we know, but now, I don’t know. We live in California, so who’s to say what a trial judge would decide?
And I’m sure that in the end my or my husband’s wishes would be honored, but I don’t even want to go to court (and I’m a law student). I don’t want my face plastered on billboards as a murderer, and I don’t want to be interviewed on CNN. I just want our explicit, written wishes to be honored. What more can I do to make that happen?Posted by on 03/24 at 08:01 PM
We live in a culture that teaches its children three lousy lessons(in my opinion). 1) They are taught to fear the only thing that is for absolutely sure going to happen to them--death. 2) They are taught that beauty is something that can be artifically created for them if they are not “chosen” genetically to embrace it, but that they first must access wealth. 3) They are taught those that are the best physically or artistically endowed get the financial rewards, while those that are not so gifted are ridiculed and disgraced(bullied in school, disgraced by teachers and other adults, left behind and not chosen).
These lessons, and others along these lines(take two of these pills to feel better and one of those to increase your pleasure), encourage generations of adults to see technology as a faithful savior and possibly their God’s miraculous tool of intervention. How little we know of the mystery of life??Posted by on 03/24 at 10:58 PM
Michael, I think that most decisions to forego “life-sustaining treatment” involve the end-of-life of elderly people. These cases concern heroic measures that might possibly, at great cost, give another few days or weeks of life.
Case in point: my father, unconscious, on a respirator, with heart damage, brain damage, and infection in the lungs, began to suffer kidney failure. The doctors proposed putting him on dialysis. My mother had to make a formal rejection of it - not easy - and if my dad hadn’t signed a living will and given her a durable power of attorney he would have been plugged into another machine and survived for another week or two.Posted by on 03/25 at 02:53 AM
A wonderful post as usual, and then some comments.
First, I am consistently amazed by how far we have removed ourselves from the fullness of life. The fullness of life includes what Derrida named in a title to an essay, the Gift of Death (and yes, I’m am violently oversimplifying Derrida’s position. It’s a comment to a blog, dammit). The argument about life and death is about forgetting the continuum of these only abstract descriptions of state. The entire issue has gotten worse as medical technology has made what was once a clear border between these two “states” a vast grey area. Do not misunderstand, I do not want to give up this technology, yet we must understand that death itself is part of our life.
This of course begs many questions, most of which will be left alone in this post, however…
Leslie Fiedler wrote “Love and Death in the American in the American Novel” about 45 years ago, and in it he argued (at least in one interpretation I agree with, which is again a violent simplification) that the measure of a novel is the maturity with which it approaches death. I am beginning to believe that this is a measure of a culture, a national culture. When a medical condition occurs that places us in the grey area of death, we must, as a culture, accept death as the last part of the continuum of life. When we hold on to an image of the loved one (and this is always a question of the loved one), we betray the actual life of that loved one. In the case that is unwritten in your post, the Schindlers are hanging on to an image they have of their daughter. That image is always internal. The relation to a loved one is always a relation to an internal image. Our maturity is reflected in how we place that image in dialogue with the lived experience of the actual subject of that image. To experience death is always to experience the death of the Other, the subject of who we have placed in a place of emotional importance for ourselves.
Which brings us back to Derrida. Derrida argues that my own death is non-experiencible. I do not truely experience my death. If we follow this line of reasoning (and indeed I do think it is true) we must always remember that death is always going to be the experience of those who are loved ones in our lives. This understanding has saved me from suicide. The funeral, the wake are events for those still alive, not for the actual dead. Death is, as someone once said or wrote, I don’t remember, about Samuel Beckett, a change of tenses. We now speak of the dead in the past tense. If I am dead, I speak no more.
What is offensive in the current situation is the position that so many have taken that life is purely definable, that indeed, as per your blog, it exists outside any person’s autonomy, as if a person might accept the continuum I argue exists. I can indeed chose my own death. As mentiond above, I have been suicidal, and what I have begun to understand is that my death is mine, thoug I will never truely experience it. What is left when I die is the loved ones of my life.
I’m tired and beginning to lose the train of my own thought, but two last comments and then I’ll go.
I had a conversation with my father on Sunday night. He’s 73 and I wanted to know what he wanted if I was faced with a similar situation. He choses death. As he said to me, “I’ve climbed my mountains, I am ready.” He doesn’t want to die, but he has accepted death as the end of life.
Secondly, Betsy, you are wrong. If you sit and watch the evening news, you will quickly learn that the natural end to male life is death. Any time there is a catastrophe, the story always readsa “there were X deaths, including X women and children.” One of the reasons the Schiavo case is big is because a woman is always a victim, or at least can be portrayed as a victim. If had happened to a man, there would be no media. A amn in this case qould be seen as stoicly agreeing to his natural fate. On one hand, I obviously agree, yet let me write again, the natural end of masculine life is death.
Thanks for your time everybody,
brianPosted by on 03/25 at 04:19 AM
Having in the past six weeks helped spread my mother-in-law’s ashes along her favorite hiking spot on the Columbia Gorge, and watching my stepfather now living out his last months, advance directives have been much on my mind.
My wife says that her mother and father (who died just 18 months ago of Parkinson’s) often talked about how they wouldn’t want to remain alive if they were minimally conscious or comatose with no reasonable hope of recovery. Unfortunately, they didn’t write a single word of this down, and by the time my mother-in-law’s dementia from Lewy Body Disease had robbed her of enough cognition to make her own decisions, it was too late. An advance directive, I thought, would have released her months before the end actually came. My wife and I long ago wrote living wills, granted each other durable power of attorney for health decisions and wrote thorough advance directives that I thought - until reading your commentary, Michael, and the comments thread - were ironclad.
Now, I’m not so sure.
What I do know for sure is that, assuming there’s an afterlife, I’ll be back to haunt any GOP ghoul who intervenes to rescue me from my clear intentions if I should wind up - gawd forbid - like Terri Schiavo or Robert Wendland.Posted by on 03/25 at 02:14 PM
These cases pose excruciatingly difficult moral questions and involve competing moral imperatives.
What are “moral imperatives,” per Michael? Golden Rule? Cathegorical Imperative? What?
Which particular “moral imperatives” is he referring to and do they vary under the differing conditions of 1) PVS 2) Do Not Resuscitate 3) minimum consciousness?
Assuming a “moral imperative” imposes duties on someone, who is that someone? The patient? The physicians? The medical proxy?
I don’t think I’m smart enough for this blog. Can anyone help?Posted by on 03/28 at 04:37 PM
Hi, Ellen. By “competing moral imperatives” I meant the right to life and the right to refuse medical treatment (which I mention later in the paragraph). Or you could consider this in terms of the physician’s imperative to do no harm and the liberal imperative to respect the wishes of individuals regarding their level of care. The point is that in cases like Wendland and Martin-- and Terri Schiavo-- all parties to the dispute can plausibly claim to be driven by moral considerations. Do they differ from case to case? Yes, I believe they do: cases in which patients can “speak” for themselves are qualitatively different from cases in which they have to be represented by surrogates, and of course individuals’ desires with regard to treatment in cases of PVS, incompetence, terminal illness, etc. will dictate the specifics of advance directives and surrogates’ decisions. So person A might want to block the feeding tube of someone in Wendland’s condition, believing that Wendland himself would so desire, whereas person B might want to sustain the care of someone in PVS on any number of grounds.
On whom are duties imposed? Good question: when you’re dealing with persons who cannot represent themselves, that’s precisely the question. Who, in the end, is charged with interpreting the patient’s wishes, insofar as these can be ascertained? And what moral weight will that person’s judgment be granted, over against that of medical professionals and bioethics commissions? (That 1999 Texas law, after all, allows doctors to withhold care in cases that are deemed “futile,” regardless of the wishes of parents or surrogates, pending review of such doctors’ decisions by an ethics board.) That’s exactly what’s at stake in decisions to withhold or refuse medical care.
This blog is not smart enough to adjudicate all such decisions. All I wanted to do was to suggest that advance directives don’t actually solve all the problems attendant on these decisions.Posted by on 03/28 at 06:02 PM
What do you think of “terrified” and “wind up - gawd forbid” comments above? Is this not the disability bias you are referring to? What about the Texas law?
Assuming you are a Consequentialist, could it be that “advanced directives” encourage the presumption of guardians that their ward would not want to life a particular way?
Just thinking out loud.Posted by on 03/29 at 12:26 AM
I think that’s unfair. Not wanting extraordinary end-of-life measures is not disability bias. I’m not saying I’d want to die if my disability became more extreme; I’m saying that if I were in a PVS, I wouldn’t want a feeding tube. And I certainly wouldn’t want to be called a Nazi or a murderer if I followed my husband’s wishes.Posted by on 03/29 at 02:45 AM
Honestly, Quentin, it sounds to me like jengould and Meteor Blades used the phrases “this just terrifies me” and “Gawd forbid” (respectively) not with regard to disability per se but to the condition of being incapacitated, as is Schiavo and as was Wendland, and having one’s previously expressed wishes ignored. To fear that your wishes will be set aside by a court or a legislature-- and that you will be denied the right to refuse medical treatment, and kept alive against your will-- is not necessarily to participate in the stigmatization of disability.Posted by Michael on 03/29 at 08:24 AM
Thank you for taking me seriously. I would also like to mention that I also have an “Advanced Directive”. But, I am still trying to work this out. I want to make sure I know why I want certain things.
I have written this post many times and it keeps coming out quite long. But, I am not sure that is good for blog comments so here is a short question:
You said “To fear that your wishes will be set aside ... and kept alive against your will”.
Do you mean your “will” at the time? Plainly not if you are missing most of your brain. So, we are referring to your current “will” (and “wishes") towards a future personal state. But really what do you care? Are you you then? Do you feel your dignity is being violated *at the time* even when you *at the time* would not be able to recognize it? Why do you care about your “right to refuse medical treatment” when *at the time* you would not recognize the concept of “rights”? If you consider “yourself” to be mostly your mind then why worry so much about your body?Posted by on 03/29 at 12:48 PM
For me personally, Quentin, and anybody else who’s still reading, this really is a simple matter. Whether I should be resuscitated, tube-fed, ventilated or otherwise kept alive in a minimally conscious or PVS state should be my choice (as expressed by me when my mind was working). Whether you should be resuscitated, tube-fed, et cetera, should be your choice.
I’m not out to persuade other people - you or anybody else - to choose my choice. On the contrary. The law should be constructed so as to follow my choice and your choice, not somebody else’s choice for either of us. That’s why I was taken aback after reading Michael‘s essay on this matter, which indicated that my choice, as written in fairly detailed form, might not be followed.
Distinguishing between state of mind when one has a mind, and in the state it would be at the time an advance directive would be carried out could, I suppose, make for an interesting discussion, with all kinds of philosophical nooks and crannies along the lines of cogito cogito ergo cogito sum, but this kind of splitting hairs has never been my forte.
The truth is, if I come to a time when my mind is gone but my brain stem keeps my heart pumping, then, of course, it won’t make a difference to “me.” However, having seen the devastating effect on family members of watching such a person hang on for months or years is one of the reasons I have written an advance directive. I want my family to be able to let me go and get on with their lives in the clear, unguilty, unquandaried knowledge that this is what I wanted when I was fully capable of making the decision. And I sure as hell don’t want Tom DeLay or anybody else second-guessing me or my family.Posted by on 03/29 at 03:31 PM
Thanks Meteor Blades for the comments! Quick questions/comments if you do not mind:
You said: “However, having seen the devastating effect on family members of watching such a person hang on for months or years....” The disability advocates respond usually with: (1) In Terri’s case, the “devastating” effect is on the parents who are “devastated” that her death is being caused by the denial of food and water; and (2) In the general case, why is anyone “devastated” at such a condition? Could it be the “disability/handicap” bias from society?
Therefore, if you are considering the effects on those left behind has your reasoning behind your choices enumerated in your advanced directive, why not simply leave the decision up to *them*, and not their (and/or the court’s) determination of *your* wishes? One could write: “I give my guardian all rights, priviledges, and powers to deny any and all medical treatments, including food and water, as they see fit, without regard to any and all previous statments made by me in the past, written or oral.” So, if your family finds it tramatic to see you in a particular condition they can ‘let you go’. If they do not want to ‘let you go’ yet then they have that option also.
[For record, I do not believe I am trolling. First, I actually agree with Berube and Blades. Second, I am having a second discussion/debate over on ZNet w/ a disability advocate. I hope no one minds too much, I am just looking for a discussion on this. I will stop of y’all want.]Posted by on 03/29 at 03:56 PM
What do you think of “terrified” and “wind up - gawd forbid” comments above? Is this not the disability bias you are referring to?
Misconceptions about disabilities need to be challenged, and oftentimes those misconceptions color our responses to the thought of becoming disabled ourselves. But I think there’s nothing wrong with saying “Gawd forbid” at the hypothetical prospect of taking on a new disability. In fact, saying otherwise can verge on condescension.
I support radical accessibility laws and my definition of “reasonable accomodations” is rather unreasonable in the direction of inclusion. I’ve hired people whose disabilities not only required accomodation, but in fact affected work output (though not quality) and I’ve been glad to do so.
Still, there’s a marked difference between bias against people with disabilities (which is, obviously, wrong) and regarding disability itself as, in the main, unfortunate. I think society should be radically remade to allow full, independent, and fulfilling lives to people who cannot walk, and yet I don’t mind saying I hope I can always walk. Though there is some controversy about individual examples of this issue, and though some conditions thought of as disabilities do have notable positive aspects, I have met very few disabled people who would keep their disability if offered the option of walking, or seeing, or having a respite from their depression, or whatever.Posted by Chris Clarke on 03/29 at 03:57 PM
Quentin, I wrote my advance directive after extensive discussion with family members. They all said they felt better knowing what my wishes were and expressed some relief that they would not have to make the decisions you suggest I leave to their judgment.Posted by on 03/29 at 04:47 PM
First point. Let me assure you, giving someone the authority to let you die is the least of your worries. The bit that you’re likely to have second thoughts about when you emerge from your coma is that by appointing a surrogate you’ve given them the option to discontinue pain relief. Schiavo’s husband, for example, nixed antibiotics for her UTI, which are good and painful, because his case was based on her being in PVS and thus, according to the definition, insensible to pain.
Second point. I’m looking at writing up what the legal system should be in regard to uncommunicative patients, and the first point that comes up in the American context is that you can’t get there from here. Your laws are _so_ knotted. Take, for example, the Supreme Court of California holding that ‘Our conclusion does not affect permanently unconscious patients, including those who are comatose or in a persistent vegetative state’”
Now, there are a whole roil of problems with the concept of permanent vegetative state - for more discussion see http://home.vicnet.net.au/~borth/PVS.htm - but before we even get to look at them we have to note that in every medical-professional definition there is ‘persistent vegetative state’ is the one you occasionally recover from and ‘permanent vegetative state’ is the one that (it’s claimed that) you don’t. Every American law and every judgement has incorporated an oxymoron, and after Schiavo I don’t know that you’ll ever be able to sort that out. A total fuckup.
And even if you did, you can’t fix the PVS issue without a national health insurance system.Posted by Chris B on 03/30 at 01:07 AM
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