A Woman's Life

As Nat Hentoff notes, while the defenders of Terry Schiavo are frequently treated as though they're indistinguishable from the anti-abortion crowd, some of the most cogent attacks on the efforts to kill her have come from the disabled community. Twenty-one such organizations released a joint statement last week, and while I have a few minor quibbles with it, you should read it if you've ever found yourself arguing that the issue at stake is whether Schiavo's life is "worth living."

Comments

[D.A. Ridgely]

Those who wish to die should certainly be allowed to do so. My problem is with those (born and not disabled) who presume to discern whether another person who cannot now speak for him or herself would prefer not to live.

[Mark Fox]

There is a consensus about the primacy of Terri's wishes, but seems reasonable doubt as to what those wishes were. The legal system has established a chain of responsibility for those unable to speak, and Michael apparently holds the voice according to Florida law. If extreme cases make bad law, then last-minute legislation is likely to create further difficulties for more people.

If there is doubt, then shift the debate to another arena. Who's paying to feed her? Let the tube stay in until her fortune runs out and her insurance contract expires. After that, go to charities, but not to taxpayers. A deeper issue here is the extent to which our rich society is willing to rob Peter in order to keep Paul alive.

[R. C. Dean]

The question is, who decides?

Should judges and governors get to make end-of-life decisions? If you think so, then you should be thrilled with the current status of the Schiavo case.

Should a legally appointed surrogate decision-maker have the final say? If you think so, then the Schiavo case is a major blow to your beliefs, because it is all about people with no legal standing sticking their nose in, aided and abetted by headline-seeking politicians.

I say all this in full recognition that the question of what to do with someone in a permanent vegetative state is a hard one. But who should answer that question? Agents of the state, or an individual with some connection to the patient? Saying "the family" should decide is no help - the family will split (Exhibit A - the Schiavos), and sooner or later you will have to pick a single person to make the decision.

I think the choice between government functionary and family member or friend as the decisionmaker is easy. It astonishes me that so many people think otherwise.

[Mike]

Here's something to think on: If a competent, reasonable adult has the ability and the right to chose the time of his or her death, can a proxy decision maker for an incompetent individual (whether they were at one point competent or are congenitally incompetent) be constrained from making the same choice on behalf of the incompetent adult?

Put another way, the incompetent individual -- through the mechanism of the proxy decision maker -- is prevented from having the same options enjoyed by competent individuals; they have fewer rights under this theory, not equal rights. What the joint statement is really saying is that incompetent individuals need to be nannied by some third party because the otherwise legitimate proxy decision makers might make choices on behalf of the incompetent individual that the third parties don't like.

It's a disingenous tactic because a lot of reasonable people fall for it; they think the right only goes in one direction. ("We don't talk about offing competent people; therefore, we shouldn't talk about offing incompetent people, either.") But the argument implies something else entirely. Note that this breaks down if you don't think competent adults have the right to decide the time and place of their deaths; in that case, we have very little to talk about.

I find it interesting that organizations such as the ones that signed the joint statement frame their position in terms of equality, but are really asking for the creation of a separate class of individual, treated differently from the rest of society on the basis of a disability. They want different criteria applied to decisions affecting their lives, including criteria that may not be quantifiable. (I always enjoy hearing about how contemporary arguments about quality of life are biased in favor of the non-disabled -- well, that's super. Given that our hypothetical disabled individual can't tell me what he/she thinks, what criteria would you propose I use in assessing his/her quality of life?) That's not equality.

Is this kind of discrimination bad if it gets you what you want?

(This is a very frustrating case, mostly because there's nothing new here. It is, at its core, a relatively uninteresting proxy decision-making case that presents nothing novel or dramatic that requires a shift in the thinking of the legal, ethical, or medical professions. It got "interesting" solely because of the insertion of politics into what should have been a thouroughly apolitical affair.)

[Xmas]

It's funny that the joint statement contains wording that indicates Terri Schiavo is NOT in a persistant vegetative state.

If she could respond to speech therapy and eventually feed herself, she wouldn't qualify as being in persistant vegetative state. If she she isn't in a vegetative state, then she can't be taken off the feeding tube.

So really, the disabled persons groups are saying Terri's just suffering from recoverible brain damage. Which is odd, since after she's spent 13 years in nursing home and hospice care, you'd think she would have, you know, recovered.

[Ron Bailey]

The question is not whether Terri Schiavo is living "a life worth living"--the question is whether she is alive at all. The statement issued by the disabilities rights leaders claims that Ms. Schiavo can communicate, can track objects with eyes, and can follow physician instructions. They seemed to have come to that conclusion by viewing ambiguous short video clips available on the web and played on TV news programs. The activists further suggest that Ms. Schiavo needs speech therapy in order to communicate her wishes.

However, several highly qualified neurologists have examined her and believe that Ms. Schiavo's brain is so damaged that she is in a permanently unconscious state. If Ms. Schiavo can in fact communicate, say by blinking her eyes in response to yes/no questions, one would not need to hear from neurologists, since it would be obvious to anyone who interacted with her that she is conscious. And although she might benefit from speech therapy, she certainly would not need it to communicate her wishes.

Neurologists can certainly be mistaken, but it seems that the strong balance of the evidence is that Ms. Schiavo is not disabled; she is dead.

[JDM]

"Should judges and governors get to make end-of-life decisions? If you think so, then you should be thrilled with the current status of the Schiavo case."

You're leaving out that the goverment is on the "let her live" side in this. The issue is entirely different if the government were forcing her husband to pull the plug.

[Jason Ligon]

Ron,

Dead people don't suffer, so this is an issue about wasting electricity from that side of the fence?

[Jesse Walker]

Saying "the family" should decide is no help - the family will split (Exhibit A - the Schiavos), and sooner or later you will have to pick a single person to make the decision.

Since there's already money set aside to keep her alive (though her husband has apparently been dipping into it to pay the lawyers who are making the case to kill her), and since the woman's parents are happy to take over as her guardians, I don't see why this is even an issue.

[Jesse Walker]

Ron: I'm sure the neurologists are coming to the best conclusions they can based on the data that's available to them. Unfortunately, there's some obvious gaps in the data that observation is, at our present state of scientific knowledge, unable to fill.

So we have a body that may or may not be conscious, and people who are willing to care for it. If she's conscious, she shouldn't be killed; and if she isn't, she isn't suffering either. To me that doesn't sound like a compelling case for euthanasia.

[Mark Fox]

I remember from an old Mortuary Science textbook, *general putrefaction is the only sure sign of death*. I guess we have to better define death before we can agree whether Terri is or is not.

Mike's argument about creating a separately-privileged class in the name of equality works for me. I am not qualified to assess another person's quality of life, vegetative or not. And I can't be absolutley sure that some future technological miracle might reveal Terri's wishes, or restore her function. It does seem quite unlikely, so this is not exactly a matter of wasting electricity, but of using it inefficiently.

[D.A. Ridgely]

For Mr. Bailey, if I understand him correctly, brain death = death. I disagree. So, apparently, do many people who are arguing over whether Ms. Schiavo should be left to die, not over whether she is already dead.

Although there may be many situations in which it simply makes no sense to continue providing life support to people, such a definition merely avoids the moral implications of that decision.

[R. C. Dean]

You're leaving out that the goverment is on the "let her live" side in this. The issue is entirely different if the government were forcing her husband to pull the plug.

No, it wouldn't. The issue of who decides is completely separate from the issue of what decision you think should be made. Besides, once the principle is established that the state decides, what makes you so confident that it will never decide to pull the plug?

Since there's already money set aside to keep her alive (though her husband has apparently been dipping into it to pay the lawyers who are making the case to kill her), and since the woman's parents are happy to take over as her guardians, I don't see why this is even an issue.

Well, sure, Jesse, if you just want to disregard all the family members, such as her husband, who disagree with your preferred outcome, you can make family disputes disappear into thin air.

Regardless, what happens when the family members who now agree have a falling out because some aren't willing to spend personal funds on her care? You still have to pick a single decisionmaker at some point.

I mean, it is hardly implausible that her husband is telling the truth when he says that he is carrying out her last wishes. Believe me, I know my wife's preferences on this issue far better than her family, and I think it entirely possible that he does too.

In any event, the settlement money is gone, already spent on her care and other expenses (inlcuding the legal expenses incurred by her legal surrogate, her husband).

[Xmas]

D.A., if your argument is correct, then brain dead people could never donate their organs.

[Anonymous]

Those who seem to think that Shiavo is somehow "alive," then what of those who have been killed in horrible accidents, perhaps effectively decapitated, but are kept "alive" for a few hours while organs are taken?

[s.w.]

If I am ever in some kind of vegetative state, I hope it is my spouse who decides what to do with me. The governor of my state is a moron.

[Jesse Walker]

R.C.: When did I say there's no family dispute? I'm saying that it's not the husband's place to declare her life over, at least as long as there are others willing to keep her alive -- and when there's no living will clearly laying out her own preferences.

[D.A. Ridgely]

Xmas, if they are in fact dead, they are in no condition to donate anything except by virtue of some prior legal instrument.

In fact, however, I wrote carelessly before. It is an empirical question whether our technology permits us to know whether mental activity is occuring in persons such as Ms. Schiavo or not. There are excellent reasons to believe that a flat EEG corrolates with the absence of mental activity (brain death), less compelling reasons to believe that the sort of external evidence of Ms. Schiavo's mental activity suffice to conclude that euthanasia is appropriate.

[Anonymous]

Those who seem to think that Shiavo is somehow "alive," then what of those who have been killed in horrible accidents, perhaps effectively decapitated, but are kept "alive" for a few hours while organs are taken?

Organs are only harvested from people who've expressed their wish to be organ donors. Right?

[JDM]

"The issue of who decides is completely separate from the issue of what decision you think should be made."

The state can protect the right to live, or to keep your child alive in spite of the husband's wishes (or the husband's best guess about what your child's wishes may have been had she been in the state he now guesses she is in) and not protect the right to pull the plug on your wife. That isn't the same as the state making life and death decisions. That's the state preventing the husband from forcing someone not to care for their disabled adult child.

I agree that the state should not be deciding who's right to life is forfeit, but I don't think a spouse should have that right either. Your position requires that the state make a decision. Mine does not. For example, if she were just a little more responsive, (or a lot more responsive) the state might decide the husband could not pull the plug on her.

If she had written out a living will, then I would say the state has to allow care to be refused to her. But in that case, there is no decision for the state to make either.

[Mark A.]

I am a bit surprised by Ron Bailey's position in this matter. According to his definition, if you get shit-faced drunk and pass out, you are dead! 🙂

Apparently, Ron means that if you have been incapable of communicating for 13 years, you are a lost cause. This really rankles the Anti-Luddite in me. Unless systemic necrosis has wiped out most or all of your neurons, you have a chance. Medical science moves on in leaps and bounds.

Also, wasn't there a case very recently about a guy in Arkansas who had been in a coma since, like 1989 or something, who suddenly came to?

Jesse hits the nail on the head. If a person is conscious, she can tell us her wishes. If she is not, she is incapable of suffering, which after all is a cognitive state. No suffering, no need to kill her. If her parents want to keep her going, so be it.

And if the state is going to make an error, better for it to err on the side of preserving life.

[Mike]

The problem with the Marks' comments about future technology is that if applied consistently and logically, it would prevent us from ever discontinuing life support on anyone (by decision of a PDM), since some advance in medical science could, in theory, restore that individual to good health and/or allow us to determine that individual's wishes. Even if the respiratory centers were destroyed, who's to say that at some point in the future we'll be able to reconstruct the neural pathways using nanotechnology -- so you'd better not take Jane Jammer off the vent.
If that doctrine were not applied consistently and logically.. what's the point of using it as a criteria in decision making?

It's a little like saying that because I might one day be able to go on a date with Elisabeth Shue, I shouldn't get married now. It might happen, and depending on where I live and what circles of people I move in it could even be a realistic possibility, but one cannot make decisions based on events that have some non-zero but still reasonably small chance of occuring at some indeterminate point in the future.

With all due respect, and no offense either intended or implied to anyone who has advanced that position, the argument is essentially a special pleading, and a poor way to think about this case (or any other medical problem, for that matter).

[Stephen Fetchet]

Jesse hits the nail on the head. If a person is conscious, she can tell us her wishes. If she is not, she is incapable of suffering, which after all is a cognitive state.

That's bullshit. One of the folks leading the battle to keep Schiavo alive was in a persistent vegetative state for several months. He has commented a couple times on the frustration and rage he felt, listening to the conversations about withholding medical care from him, while being completely unable to make any physical gesture whatsoever. I think it's really presumptious to assume that because somebody looks like they are catatonic, that they are completely out of it, and nothing at all is at stake.

At one time, most libertarians had an almost fanatical devotion to the sanctity of the individual, part of that being human life. It is informative (and a little breathtaking) to see the low regard in which human life is apparently held around here. This is a particularly ugly brand of libertarianism - it's not just individualism, it's rampant prejudice against anybody else's rights except our own. Nope, there's no enlightened self interest about that - it's just pure selfishness.

And as for her husband, who stands to inherit millions (and be free to marry his longstanding girlfriend) if she dies, it isn't a question about her right to die. It's about his right to off her, in order to inherit money. He happens to be the sole person she allegedly expressed her interest to, and his motives are thoroughly suspect. Until fairly recently, somebody who was that compromised, was not even allowed to testify in probate court or in conservatorship actions, the idea being that their motives were so sullied, that there was no way that the testimony could be reliable. Even if it was true, it would only muddy the waters. The state's stepping in on this issue is more of a limit on the conflicted Mr. Schiavo's ability to off his wife, than it is some broad anti-suicide statement.

Now leave me alone. I'm off to eat some Soylent Green.

[Anonymous]

Stephen: "Bullshit"? I'm not sure if you noticed this, but you and Mark are on the same side.

[Mark A.]

Mike, the difference between your argument and mine is that I am perfectly willing to be reasonable, as in "...Unless systemic necrosis has wiped out most or all of your neurons...". I acknowledge that there is a line to be drawn. Your entire argument is predicated on the supposition that I do not make that achknowledgement. Reductio-ad-absurdum-style arguments are often silly and can be just plain insulting to anyone with non-zero IQ, and really shouldn't be advanced.

My position allows for the possibility of a lost cause. This woman ain't it.

Uh, Stephen -- WTF?

[thoreau]

Forget all the other issues. There's one very simple fact that makes this whole thing so tragic, and such a dilemma from a libertarian standpoint:

No matter what happens, her most personal decisions will be made by somebody other than herself.

When an individual is deprived by nature (i.e. injury) of the ability to make her own decisions, somebody else will have to do it. Parents, governor, husband, judge, bloggers, whoever. We can debate for all of eternity who is best qualified or most eligible to make those decisions. We can debate for all of eternity what those decisions should be. But the simple fact is that she won't be making her own decisions.

Given that we're in the situation of somebody making decisions for somebody else, there is no good libertarian position. Libertarians are all about individuals having the right to make their own decisions. When that becomes impossible, there is no easy answer.

So we can debate all day: "Nobody has the right to end her life." "This is a family decision, not a government decision." "Her medical condition is such that she's practically dead." "She's not dead yet! She doesn't want to go on the cart!" (Monty Python reference)

But in the end, I don't think there's really a good libertarian answer to the question "What decisions should be made for other people?"

Pity that life has to be so darn difficult, that we can't answer all questions by invoking libertarian postulates. Damn reality!

[Joe2]

I can't figure out why Terri's husband is still alive. Didn't she have any relatives with some balls? (or, er, ovaries)

[Mike]

Mark A.: My apologies if you felt insulted; that was not my intent. I concede your point, but we're back to the question of having to define where unsalvagability occurs, and in the present case under discussion, that definition needs to be considered in the context of current medical science rather than some hypothetical treatment that may emerge in the future. Based on the limited amount of information I've seen so far, what makes you conclude that we're not yet at that point? Short of "systemic necrosis wiping out most of your neurons," what criteria do you want to use to qualify the degree of unsalvagability?

That's not a snide question, BTW; I'm genuinely curious as to what you think constitutes a lost cause in the absence of the example you provided.

Stephen wrote: And as for her husband, who stands to inherit millions..

Everything that follows from this statement could also equally be applied to anyone who stood to benefit from a life insurance policy -- does being the recipient of a life insurance policy automatically disqualify someone as a proxy decision-maker? The other comment about running off with his girlfriend.. it's been 13 years. Is expecting that someone stay with a partner who can (barely / not) acknowledge their presence for that length of time reasonable?

[MIke]

Err, sorry: "Based on the limited amount of information we've seen so far." Please don't try to read my mind. 🙂

[Mark Fox]

Thoreau,

Maybe the libertarian answer is to acknowledge there is no broadly-applicable answer, and thus not endorse any law or policy which supposes a general solution. It might be that this sad case is nobody's business but their own.

Part of the price for freedom from the Nanny State and other intrusive busybodies will be paid by the lives and suffering of those who are unable to speak for their own interests. Each person can make a moral choice deciding which principles are worth which costs.

As an absurdist thought-- What if some life-supporting group pledged to keep Terri connected, making a contract that freed Michael from future obligation, and gave him whatever booty remains from her estate? He gets what he wants, a better future, and the lifers get what they want, the chance for a miracle.

[thoreau]

Mark-

I like when you say: Maybe the libertarian answer is to acknowledge there is no broadly-applicable answer, and thus not endorse any law or policy which supposes a general solution.

I'm more queasy when you say: Part of the price for freedom from the Nanny State and other intrusive busybodies will be paid by the lives and suffering of those who are unable to speak for their own interests.

I'm all for limiting gov't in general. In fact, in this particular case I think the facts (as I understand them) indicate that the feeding tube should be removed. But I'm against those who say as a matter of reflex "Keep the state out of it." When a person wants end another person's life without that person's explicit and documented consent, well, I think maybe the government ought to take a look at the situation. Call me a statist, but I think that's a good idea.

In this case, I believe that there's already been more than sufficient government involvement (court after court repeatedly siding with the husband). But I do think there should be at least some sort of government involvement before a person ends another person's life without explicit and documented permission.

Maybe the biggest lesson from this is that everybody who wants control of his or her own endgame should have a living will. Even people of the "Keep the feeding tubes in me until the bitter end" type should have a living will to state that explicitly. Otherwise somebody might try to remove it without their consent. Likewise, those of the "let me go, don't even try to fight it" type should have that in writing as well.

My wife and I are going to do our living wills this weekend. Not a cheery thought, but it needs to be done. I told her that I don't care what decisions she makes in her will, as long as she makes them explicit, because I don't think I'd be able to decide rationally if she was unconscious and injured.

[Xmas]

You should check out Terri's husband on Larry King live. They had a brain x-ray, if the interpretation they present is correct, that showed a big black spot in the center of the brain.

The interpretation they gave was that the parts of the brain that control higher functions had completely atrophied. The big black spot was spinal fluid that had leaked into the brain cavity.

[Mark Fox]

Thoreau,

It makes me queasy, too. It is not an unthinking, reflexive position. I'm not in favor of anybody's suffering, but it seems inevitable.

It is not statist to value some limited governmental oversight. It seems reasonable, but I have a different tolerance for government intervention.

Ending a life without the lifeholder's consent is some form of crime. So we get back to the question of what death is, and possibly charge a tube-puller with murder.

And I've thought about a living will, but I don't know for myself if I want my tube in or out.

[D.A. Ridgely]

And the difference, in terms of whether or not a life is worth living, between the unborn and the disabled is...?

[JSM]

...the difference is the disabled may have an opportunity to express their wishes. In this case, did Terri tell her husband that she would rather die then live through artificial means. Is Michael fighting to honor her wishes?

It is now irrelevant, Jeb Bush gets to decide.

[Occupational Therapist]

There are often news stories about people who came out of comas - comas are no more alike than "kidney problems." I haven't seen one credible report of a person who was considered brain dead who "woke up."

People, including Mr. Fetchet, keep suggesting that this has and does happen - links, please.

And, Mr. Fetchet, you are completely wrong about the financial aspects of the issue so one wonders if you have correctly assessed the rest of the case.