As I type these words, the US Congress is preparing to meet in extraordinary session to decide whether to pass a bill granting Terri Schiavo's parents the right to take her case to federal court. This is an amazing spectacle on any number of counts. But one of the most striking to me, as a bioethicist, is that so many people are talking as though Terri Schiavo is the victim of some alarming new indignity. Thus, ABC News (video clip here; 'Questioning Intentions') showed Rep. Dave Weldon saying, on the floor of the Congress, "To order the withdrawal of food and water from somebody -- it's never been done before to my knowledge." There are only two ways to take this claim: either Rep. Weldon is lying or he has not bothered to inform himself even minimally about what he's talking about. In fact, the only thing about Terri Schiavo's case that's at all unusual is the amount of attention it has received.
The basic facts of the case are well known (there's a very good account here.) In 1990, Terri Schiavo suffered cardiac arrest, probably as a result of bulimia. (If any of you have been wondering why a woman in her twenties had cardiac arrest, that seems to be the answer. The underreporting of this aspect of the case is a real missed opportunity to educate people about the consequences of serious eating disorders.) As a result of the cardiac arrest, her brain was deprived of oxygen, which caused severe brain damage.
Eight years later, after various attempts at therapy and a successful malpractice suit (based on the doctors' failure to diagnose Terri's eating disorder), Michael Schiavo petitioned the court to determine whether her feeding tube should be removed. Many press reports talk as though he just decided that it should be removed; in fact, he left that decision to the court. He and others testified that Terri Schiavo had said that she would not want to be kept alive in a condition like the one she was in; her family of origin testified that she had said that she would. The judge found (pdf) that there was 'clear and convincing evidence' that Terri Schiavo would not have wanted to receive life-prolonging care in her current condition, and ordered that the feeding tube could be removed. (If you are wondering how the judge could have found 'clear and convincing evidence' given conflicting testimony, I urge you to read the pdf, which explains why the judge did not find her parents' testimony credible. In one case, for instance, they testified that she had made a remark supporting their position when she was an adult, but it turned out that she had said it when she was 11 or 12.) This was in 1998; in 2001, after this decision had been appealed as far as it could go and upheld, her feeding tube was removed for the first time.
However, the tube was reinserted after her parents filed another appeal based on the claim that they had new evidence and that there were new treatments that might help her regain consciousness. These appeals were heard and denied; again, the case was appealed as far as it could go, and upheld. Terri Schiavo's parents then challenged the constitutionality of the relevant laws, but this challenge was dismissed by a federal court. At this point, in October 2003, her feeding tube was removed for the second time. The Florida legislature then passed a law allowing Gov. Bush to issue a stay and have the feeding tube reinserted. After yet another series of appeals, this law was found to be unconstitutional by the Florida Supreme Court; this decision was appealed to the US Supreme Court, which denied review. The parents then filed various new motions all of which were denied; and on Friday Terri Schiavo's feeding tube was removed.
As I read this history, several things stand out. The first is that it is hard for me to see how anyone could think that Terri Schiavo's feeding tube was being removed without due consideration, since more or less every relevant aspect of it has been litigated and appealed as far as possible. Nor, as far as I can tell, is there any question about the competence of the lawyers involved: everyone seems to agree that both sides have been well represented.
The second is that there seems to be very little question about whether Terri Schiavo might ultimately recover. (Rivka at Respectful of Otters, who is a doctor, has a good post about the medical opinions offered by Terri Schiavo's parents.) As one of the court decisions in this case said (pdf; p. 7):
"Although the physicians are not in complete agreement concerning the extent of Mrs. Schiavo's brain damage, they all agree that the brain scans show extensive permanent damage to her brain. The only debate between the doctors is whether she has a small amount of isolated living tissue in her cerebral cortex or whether she has no living tissue in her cerebral cortex."
The cerebral cortex is responsible for cognition and the integration of sensation. Terri Schiavo's cerebral cortex is not only dead; it has liquified. If her cerebral cortex were still there but for some reason not working, then there might be hope that she could recover. But in her case, it's gone. In order for her to recover, it would have to be literally recreated. Here, via Alas, a blog, is a scan of Terri Schiavo's brain and a healthy brain:
My understanding is that the dark bits are spinal fluid; and thus that the fact that the scan of Terri Schiavo's brain shows huge dark areas, both in the center and elsewhere, indicates that an awful lot of her brain has been replaced by spinal fluid. I am not a doctor, of course. But Rivka, who is, writes: "The amount of brain tissue missing is truly shocking." And PZ Meyers adds: "I am not a medical doctor, but I do have that Ph.D. in neuroscience (I am eminently qualified to analyze the brains of fish and insects), and that is one ghastly mess. That's not much of a brain, it's a balloon bobbing about in there." (In using these quotes, I mean no disrespect to Ms. Schiavo, for whom I have nothing but sympathy.)
So much for the basic facts. Why is this happening, and what are the ethical issues involved? To understand this, you need to understand three basic facts about current law.
First, in this country competent adults have the right to decline medical treatment. This is a very good thing, since many of the things doctors do to their patients would constitute assault if done against those patients' wills. It is this right that allows cancer patients to decide not to undergo that last excruciating round of chemo that would give them only a slight chance of survival, Jehovah's Witnesses to refuse the blood transfusions that they believe it would be sinful to receive, and people with painful terminal illnesses to refuse treatment for other diseases, like pneumonia, that offer them the chance of an easier death. This right is extremely important: without it, we could be subjected to serious assaults on our body without our consent, so long as some physician said that those assaults were medically necessary.
Second, courts have held that for these purposes, nutrition and hydration count as life-prolonging treatments, and thus that competent adults have the right to refuse them as well. This is also important: having a feeding tube inserted is a serious violation of a person's bodily integrity, and people have the right to refuse it. It's also a point that is often neglected in the coverage of Terri Schiavo's case. What is happening is not that a court has ordered that she be killed. If courts could order that, there would be no reason to wait for her to die; the court could simply order a lethal injection of some sort. The court has found that she would not have wanted this sort of medical treatment, and thus that it cannot be forced on her. This is completely different.
In the comments on a previous thread, in the course of a discussion about the difference between withholding treatment and killing, felixrayman wrote: "If she isn't fed, she'll be dead in a week or two. There is no substantial difference here." There is no substantial difference in the outcome of the two, in this case. Likewise, when a terminal cancer patient declines chemo, and a court upholds her right to do so, the outcome is the same as if someone shot her, since in both cases she dies. But there is a huge and important difference between what is done to produce that outcome. In the first case, the reason the patient dies is that she has decided to refuse treatment. If we deny her that right in cases in which she will die without treatment, we are denying her the right to determine what happens to her body. By contrast, if I shoot her, I have not just accepted her autonomy; I have taken matters into my own hands and killed her. As I said in another context, consent makes all the difference (and that post contains several other examples of cases in which "there is no substantial difference" in outcomes, but a very substantial difference morally.)
Of course, the obvious reply is that in the case at hand, Terri Schiavo did not ask that her feeding tube be removed. This brings me to my third point: In cases in which a patient is not competent to consent to or refuse treatment, there is a well-established way to proceed. First, you ask whether the patient has prepared a living will or an advanced directive, or has given a durable power of attorney to some other person, authorizing him or her to make decisions if the patient becomes incompetent. In this case, as often happens, there were no such documents. Second, you look around for other evidence about what the person would have wanted. That was done in this case, and the courts found "clear and convincing" evidence that Terri Schiavo would not have wanted to be kept alive in her current state. If there is no such evidence, a guardian gets to decide, based on the patient's best interests.
As I noted earlier, in this case Michael Schiavo is his wife's guardian, and might have decided what she would have wanted. However, he chose instead to ask the court to consider the evidence about what she would have wanted, and to make its own evaluation. It found that she would not have wanted to be kept alive. That is: this is not a case in which anyone is proceeding in the absence of evidence about what she would have wanted, nor is it a case in which Michael Schiavo is acting only on his sense of what his wife would have wanted, without allowing a hearing for anyone else's view.
Under current law, when a person is incompetent to consent to or refuse treatment, evidence of that person's views and wishes is used to determine whether or not s/he would have consented to treatment. In Terri Schiavo's case, the courts have determined that she would not have consented. In accordance with what they have found to be her wishes, they are seeking to discontinue the treatment to which she would not have consented. That is: legally, this is a matter of letting her views about her life and her body govern the treatment she is subjected to, not a matter of anyone else's deciding whether she will live or die. What's at issue in this case is not "life"; it's patient autonomy.
It seems to me that in order to say that Terri Schiavo's feeding tube should not be removed, you have either to challenge the basic facts of the case as found by the courts, or to say that one of the three points I have just made is wrong. I don't imagine that many people will say that competent adults should not have the right to decline medical treatment. Some people may be tempted by the idea of denying that feeding and hydration are among the things competent adults should be able to decline, but if you think about the huge intrusion on people's bodily integrity and autonomy that giving the government the right to force you to have a feeding tube implanted against your will would represent, I think this view will seem less attractive.
The most plausible place to disagree, I think, is on the third point: taking evidence of an incompetent person's views and wishes to determine whether that person would have consented to treatment. Here I think it's important to bear several things in mind. First, requiring 100% certainty about someone's wishes would make it impossible to decide what to do for any incompetent patient. Suppose, for instance, that that patient left a living will: living wills are almost never detailed enough to cover all possible contingencies, and they often need to be interpreted to yield a conclusion about actual treatment decisions. (A case I sometimes use in class involves a nursing home patient who has made it clear that she does not want to be resuscitated artificially, who has a really bad reaction to a new medication and goes into shock, and who can almost certainly be immediately and completely resuscitated with an epi stick. Depending on the details, it can be pretty clear that this was not the case the patient had in mind when she asked not to be resuscitated; that she was thinking of herself having gone into a serious decline and being kept alive with tubes and then suffering cardiac arrest, not of a quick and reversible allergic reaction.)
Suppose the living will turns out to cover exactly the case at hand, so that no interpretation is needed. One might still wonder: might the patient have changed her mind after writing the living will, but never gotten around to updating it? If she didn't mention any such change of heart to anyone, that's hardly proof that none occurred. But even if, by some huge coincidence, she was discussing an exactly similar case at the very moment when she collapsed, that's not proof either. It often happens that people's views about what they would want in a given case are wrong. People think they'll be happy if they get promoted, and then find themselves just as miserable as before; they think they could never learn to live without the use of their legs, but then go on to live perfectly happy wheelchair-bound lives; they think that some medical problem would be easy to deal with, but when it actually occurs find that it completely undoes them. So knowledge of Terri Schiavo's views on this exact case at the very moment when she went into cardiac arrest would not guarantee any knowledge of what she'd want if, per impossibile, she were able to have desires now. But surely it's one's views at the time, not one's views in the past, that should dictate one's treatment.
This means that if we require 100% certainty about people's wishes in order to refrain from treating them, we will never refrain from treating any incompetent patient. (Maybe we won't refrain from treating competent patients either: after all, they could be lying.) And this in turn means that a lot of people's wishes about what medical treatments they would like to receive, and what they do and do not want done to their body, will be violated. There is, it seems to me, no getting around this point.
This might not seem significant if one thought that there was no harm that could even be compared to the harm of losing your life, where 'losing your life' does not mean 'being killed', but simply dying. I do not think this is true: there are things I would rather die than undergo, and one of them is having my fate made the object of a political circus, as Terri Schiavo's is. More importantly, though, this is not the way our legal system is currently set up. We do not act to rescue people's lives whatever the circumstances. We do not force cancer patients to undergo that one last desperate round of chemo on the grounds that it might save their lives, and that this outweighs the violation of their autonomy that forcing chemotherapy on them against their wills would represent. We place autonomy first, allowing patients to decide for themselves which treatments to undergo, even when their decisions shorten their lives. I think this is as it should be. But if one accepts this, then it's hard to see how we can also say that we should never accept evidence that an incompetent patient would choose to refuse treatment on the grounds that we might be wrong. To take that view is to protect life at the expense of patients' autonomy, which we rightly do not do.
Suppose we relax our standard somewhat and say, as felix did: we will respect living wills, but not other forms of evidence. In this case, it seems to me, one would have to explain what is so special about living wills. If, as soon as a person formed a view about being treated in a given condition, a living will automatically wrote itself, that would be one thing. But obviously this doesn't happen. Lots of people have very strong views about treatment, views that they have expressed repeatedly and in detail, but have not written a living will. It is not the least clear to me why we should not accept other people's reports about what a patient has said about relevant cases, especially since we accept witness testimony in all other legal proceedings, including those on the basis of which we sentence people to an involuntary death.
It is of course true that the credibility of a witness's statement should be carefully considered. Witnesses can lie. (And living wills can be forged.) But I don't see why, after careful examination of one or (preferably) several witnesses' statements, one could not conclude that they constituted adequate evidence of a patient's wishes. The alternative is, I think, accepting a standard of adequacy so high that almost no incompetent patient could be denied treatment. And as I said earlier, this would involve a massive denial of patient autonomy.
In Terri Schiavo's case, the statements of various witnesses were heard, considered, and evaluated for credibility. On the basis of these statements, the court found that she would not have wanted to be kept on a feeding tube. That decision was appealed as far as it could go, and upheld each time. To my mind, relying on witness statements, critically examined, as evidence of a patient's wishes is perfectly appropriate, especially since most people do not, in fact, write living wills, whether or not they have strong views on the sort of treatment they would choose to receive.
On reflection, I'm going to save what I have to say about the Congress's actions for a later post. This one is too long already. But the takehome message is: first, it's about autonomy. Second, the result in this case follows from basic facts about the way we adjudicate these cases. There is nothing novel about the case itself. Third, if you think about what would be involved in changing these basic principles, it doesn't seem very attractive.
That, I take it, is part of the reason why Congress will pass a bill narrowly targeted at this case. To say that we will not allow feeding and hydration to be withdrawn regardless of a patient's wishes, or that we will not accept testimony about incompetent patients' wishes to count as evidence, would have huge and disastrous effects for a lot of patients and their loved ones. It would also be very unpopular. So Congress is trying to avoid acting in a way that would affect any other case, however similar. This is, in my view, cynical and contemptible.
Update: if you are new to this site, please read this before making assumptions about what sort of blog this is.
Also, having followed a few of the referrals to this post, I think I should point out that I am one of those mysterious female bloggers you hear so much about these days.