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March 29, 2005

Comments

Good points. The first thing I would note is that the Schiavo case isn't really about 'assisted eating' IMO, because she had no swallow reflex.

I fear that it is impossible to take the bull by the horns. The reason why cessation of feeding is done, I think, is because it seems much more 'merciful' than actually administering a drug to kill someone. For someone who is in a PVS, the choice seems to be to take active measures to end their life, to rachet down the level of treatment so that some other ailment could create a situation where they die, or to withhold food and water. I don't know about the true course of death by dehydration, but several articles I have read suggest that it is as bad as has been sketched out (I'll try to find the cites, but there is so much stuff out there now, that I can't go through the history of what I browsed, nor can I think of a set of relatively unique search terms)

I'm also wondering if the term 'uncontroverted evidence' has any special legal meaning. In this case, we have had a number of apparently false affadavidits submitted which I think would act to controvert the evidence, yet I think they were submitted by people who had convinced themselves that what they imagined they had experienced was true.

Finally, if your proposals were put in place, there would have to be more (perhaps much more) support in terms of medicaid/medicare for these patients. I personally don't think that is possible for political reasons, so I'd be interested to know how you would deal with that problem

I agree that Schiavo has gotten too much attention. So lets talk about Sun Hudson. Know anything about the Texas Futile Care law? How high is the burden of proof there?

I think there is a distinction between assisted breathing and assisted eating. I'm not sure I can pin it down right now, but I think it has something to do with how quickly you die without breathing and how close to death you normally have to be before your body will stop breathing.

I think your attitude is a common one, which I wrote about elsewhere. My take is that the "how quickly you die without it" distinction is just a matter of degree. It's true that at some point a difference in degree becomes a difference in kind, so I can see how reasonable people can disagree on this. To me, air and food are both essential, going without is fatal, and I consider them both "life support."

I'm not sure I can pin it down right now, but I think it has something to do with how quickly you die without breathing and how close to death you normally have to be before your body will stop breathing. I'm not sure how the distinction would play out in law, but I would like to see it reflected somehow.

Thank you! That's the point I tried to make, just to have an army of folks pile on suggesting I was technophobic. (OK, not an actual army, but thanks for noting this too.)

Seems like you haven't been paying attention. Feeding tubes come w/ all sorts of medical complications and eventually no longer work, so you die anyway. A hospice nurse explained the degradation at Alas,A Blog under Terri's Cat Scan. I'd go over there and check it out.

I think your thoughts are a little muddled -- you theoretically support the right to refuse medical treatment that will result in death, but them seem conflicted by its actual application, as exemplified by this:

the situation that brought us to the ugly state of allowing a patient to starve to death

If she had left a clear written directive, we would be in the exact same "ugly" situation.

Also, note that the Schindler's primary contention is that she is still sentient and able to express her wishes. They also insist on the right to keep her alive to assuage their own feelings even if she was not sentient. Their position would be unchanged even if she had an express written directive. Once again, the same "ugly state."

Your ideas to promote written directives are good -- similar to procedures already in place in California about organ donation.

Finally, she is not dying of starvation -- dehydration resulting in organ failure will be her cause of death. According to medical authority, it is a peaceful death for patients in her condition. Here is one of many recent articles on this point (Miami Herald -- registration may be required).

The term "starvation" is used to falsely depict what is happening here by adding a phony gruesomeness -- I assume you are simply echoing this error without the same intent as those who deliberately misuse it, but it is part of the syndrome of medical misinformation that has plagued this story.

I disagree that "assisted" air is materially different than food and water. All three are essential to life and all three require "machinery" to "assist" someone who is not able to accomplish the function independantly. The debate seems to suggest that people view ventillation as somehow more intrusive, but the underlying actions seem very similar.

I suspect your formula for legislation is likely the best we could achieve. But from the polls that have been floating around I also suspect that a large majority of people would prefer not to be tube fed or hydrated when in a persistent vegetative state. We view declining the "assistance" as a more life affirming approach. Maybe the better default position would be to avoid tube feeding when in doubt unless a living will or a loved one directs otherwise.

I appreciate Seb's effort to grapple with a subject that very clearly troubles him. But one case, no matter how controversial and celebrated, isn't a good basis for making new laws.

One thing that troubled me about the Rightist response to the Schiavo case is the Right's utter silence about the Texas law. If the issue is about 'right to life no matter what,' or about 'respecting relatives' wishes,' or about 'eugenics,' then the Texas law allowing hospitals to withhold care based on financial as well as medical considerations would seem to be a substantively better target for criticism. Particularly since there have been two recent cases where patients did face withdrawal of medical care: one in which an infant was allowed to die against the parent's wishes, and another in which the family has had to scramble to find another hospital that would take their father, or see his care ended.

But the Right hasn't even mentioned the Texas law, and I have no doubt that was because the law was supported and signed by George Bush. That silence made it abundantly clear the hysteria over Terri Schiavo was political, not moral or ethical.

CaseyL- Thanks I was feeling mighty lonesome.

I still worry though, since Texas Futile Care represents the way that many Republicans including George W. Bush think really think about patient care, don't we need to know a lot more about it?

The Catholic church has grappled with this issue for centuries and within Catholic hospitals has had opportunity to apply its moral code in practice.

The policy makes emminent sense. Here it is, straight out of my copy of the Catholic Catechism:

- "Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of 'over-zealous' treatment. Here one does not will to cause death; one's inablility to impede it is merely accepted. The decisions should be made by the patient if he is cometent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.

- Even if death is thought immenent, the ordinary care owed to a sick person cannot be legitimately interupted. The use of painkillers to alleviate the suffering of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Pallitave care is a special form of disinterested charity. As such it should be encouraged."

On the basis of this statement people in a coma or pvs are often disconnected from ventalators, feeding tubes, dialysis machines etc at Catholic hospitals throughout the country. The decision is left up to the patient or to those with the legal authority to act for the patient and 'whose reasonable will and legitimate interests must always be respected'.

Regardless of what we hear elsewhere this is the official Catholic moral teaching and overides anything anywone else says, even the Pope, until such time as it is officially changed. It is kind of like civil law in that regards.

Sebastian, I appreciate your sincere desire to do good here, but this is problematic: "But if you want to do something about the situation that brought us to the ugly state of allowing a patient to starve to death, grandstanding for Mrs. Schiavo isn't what is needed. What is needed is some concrete proposals."

Without taking up the pros or cons of your proposals, they do nothing whatever to stop "the ugly state of allowing a patient to starve to death...."

The "ugly state" is no more "ugly" than any other peaceful, painless, death, and a great deal less so than many, if not most, deaths. Withdrawal of hydration and nutritition is an utterly standard procedure performed upon hundreds of thousands of people. This is because it's the best way medical science knows how to let someone die, for now, without more active intervention. Banning it is what would lead to needlessly painful, uglier, deaths. This would be, I dare say, an extremely bad thing.

This is an immensely important, and basic, point.

"assisted eating."

I don't know what you mean by that; using a feeding tube isn't "eating" by any definition I'm familiar with. When those idiot protestors kept demanding to know why they couldn't be allowed to bring Schiavo water, or bread, for her to eat, it was because she is incapable of eating. She cannot swallow, absent the part of the brain-stem that allows it.

A feeding tube machine is a machine, by every possible definition. If someone is capable of "assisted eating," they tend to not need the feeding tube, although there are certainly cases where both are possible and called for. But the reverse isn't true: use of a feeding tube doesn't imply ability to swallow or eat. But determining whether or not the person can't live without the machine (in this case, the feeding tube machine) isn't a problem, and neither is determining what a "machine" is.

LJ: "I don't know about the true course of death by dehydration, but several articles I have read suggest that it is as bad as has been sketched out...."

The overwhelming reason I've tried to avoid talking about this is that I've just been through this, and it makes me really really mad to read people saying these sorts of things, to the point of a completely inappropriate level of feeling on my part. So that's all I'll say; I'm glad you've never gone through this with someone you love, but sorry you don't have the resulting knowledge.

I knew I shouldn't have touched on these issues.

Sebastian, I appreciate your sincere desire to do good here, but this is problematic: "But if you want to do something about the situation that brought us to the ugly state of allowing a patient to starve to death, grandstanding for Mrs. Schiavo isn't what is needed. What is needed is some concrete proposals."

Without taking up the pros or cons of your proposals, they do nothing whatever to stop "the ugly state of allowing a patient to starve to death...."

The "ugly state" is no more "ugly" than any other peaceful, painless, death, and a great deal less so than many, if not most, deaths. Withdrawal of hydration and nutritition is an utterly standard procedure performed upon hundreds of thousands of people. This is because it's the best way medical science knows how to let someone die, for now, without more active intervention. Banning it is what would lead to needlessly painful, uglier, deaths. This would be, I dare say, an extremely bad thing.

This is an immensely important, and basic, point.

"assisted eating."

I don't know what you mean by that; using a feeding tube isn't "eating" by any definition I'm familiar with. When those idiot protestors kept demanding to know why they couldn't be allowed to bring Schiavo water, or bread, for her to eat, it was because she is incapable of eating. She cannot swallow, absent the part of the brain-stem that allows it.

A feeding tube machine is a machine, by every possible definition. If someone is capable of "assisted eating," they tend to not need the feeding tube, although there are certainly cases where both are possible and called for. But the reverse isn't true: use of a feeding tube doesn't imply ability to swallow or eat. But determining whether or not the person can't live without the machine (in this case, the feeding tube machine) isn't a problem, and neither is determining what a "machine" is.

LJ: "I don't know about the true course of death by dehydration, but several articles I have read suggest that it is as bad as has been sketched out...."

The overwhelming reason I've tried to avoid talking about this is that I've just been through this, and it makes me really really mad to read people saying these sorts of things, to the point of a completely inappropriate level of feeling on my part. So that's all I'll say; I'm glad you've never gone through this with someone you love, but sorry you don't have the resulting knowledge.

I knew I shouldn't have touched on these issues.

Sorry for the double post; I got a complex error message that said the post failed.

Edward says: "That's the point I tried to make...."

Fine, but what is the point?

Edward says: "That's the point I tried to make...."

Fine, but what is the point?

Overall, that there's an accumulative (and somewhat aesthetic) limit to intervention as well as a physiological one that, for me at least, comes into consideration in making decisions about when enough's enough.

Call me vain, but I don't want my loved ones seeing me rigged up like Doctor Octopus if there's no chance all that would restore me to some semblance of my old self. Mostly because I don't want to see them "living" that way unless it's gonna make them better.

I know it's silly to some, but it's the sort of personal preference I insist be honored in my case.

Edward says: "That's the point I tried to make...."

Fine, but what is the point?

Overall, that there's an accumulative (and somewhat aesthetic) limit to intervention as well as a physiological one that, for me at least, comes into consideration in making decisions about when enough's enough.

Call me vain, but I don't want my loved ones seeing me rigged up like Doctor Octopus if there's no chance all that would restore me to some semblance of my old self. Mostly because I don't want to see them "living" that way unless it's gonna make them better.

I know it's silly to some, but it's the sort of personal preference I insist be honored in my case.

What's up with the double posts?

In my mind, the distinction between eating, drinking and breathing and therefore the technological assistance in each can be traced to the activity of the reptilian cortex. My recollection from Biology is that the reptilian cortex keeps you breathing when nearly all else fails. I do not recall hearing that the reptilian cortex will force you to eat or drink the nearest, well, anything, when you are hungry or thirsty. But, once a lack of 02 causes the upper brain function to disappear (you "pass out"), the reptilian cortex will force you to breath water causing people to drown, or CO2 if surrounded by that.

In essence, you can choose not to eat or drink and die from that. You cannot choose not to breath. That's the distinction.

However, I don't know what the point of making that distinction would be.

Sebastian: about the difference between assisted nutrition and hydration on the one hand and respirators on the other do you think (1) that there is a difference of the sort that might make you personally (or Edward) choose to refuse a respirator but not a feeding tube? or (2) that there is a difference that should be written into law, so that no one can refuse a feeding tube? I can see (1) (I myself would choose to have neither in a PVS), but I really can't see (2) at all. The insertion of a feeding tube involves surgery, and I don't think people should be forced to undergo surgery against their will, even to save their lives.

Gary
I'm sorry to have touched on an issue that is sensitive to you. Obviously it is impossible to read everything statement associated with this question that has arisen from the case. However, links like this link that discusses what I was pointing out. Here are some of the other links that discuss this here and here. If the information in these links is in error, my apologies.

Hilzoy, I believe that an adult can refuse any treatment. The distinction is when we are imputing someone's wishes when they aren't able to communicate them. I don't really believe that someone saying that they wouldn't want to live on a respirator is objecting to the same class of support as a feeding tube. I don't think someone imagining death after a few minutes off of a respirator is necessarily agreeing to a few days of dehydration.

Your dog.. You love your dog don't you? Would any of you keep your dog alive like this?

Your dog.. You love your dog don't you? Would any of you keep your dog alive like this?

Hilzoy, I believe that an adult can refuse any treatment. The distinction is when we are imputing someone's wishes when they aren't able to communicate them. I don't really believe that someone saying that they wouldn't want to live on a respirator is objecting to the same class of support as a feeding tube. I don't think someone imagining death after a few minutes off of a respirator is necessarily agreeing to a few days of dehydration.

An excellent point. How lucky for us that the law has provisions for this, designating someone who would -- theoretically -- best be able to make the decision for you in case you were incapacitated.

In fact, I believe there's this "marriage license" thing you sign when you get married that -- among other things -- specifies your "spouse" as that person.

And -- and this is just crazy here, what the law does! -- if for some reason some relative or friend thinks this "Decision Making Person" isn't doing a good job, they can take it to the courts who can try to determine if this "Decision Making Person" is doing his job properly.

And -- and this is the CRAZIEST part of the whole thing -- it turns out that's [i]exactly what happened here[/i].

The long and short of it is simple: Sooner or later, SOMEONE has to make the decision. People in a PVS can't make decisions, and people in a PVS can't go back in time to make that decision before their got hurt. Now, admittedly, there's no magic wand to make EVERYONE agree to the decision -- but sooner or later someone has to make it.

And since you seem to agree that "Remove the feeding tube" is a valid medical choice -- that is, if I write it up in my living will, you'd consider it a choice I was legally and ethically allowed to make -- then the only argument here is you don't like the decision or don't like the means of reaching that decision.

On the first -- obviously it's not your decision and your opinion means bupkiss. However, I'm pretty sure you're stuck on the later -- to which I ask what other choice is there.

Where's the problem? The personal legally compelled to make the choice made it. Her family objected, and several courts sided with the husband -- not just on legal "He's the Guy Who Gets to Decide" grounds but on the actual merits of the claim "Terri would have wanted this".

We sentence people to massive fines, to jail, even to death with less litigation than this.

So what, exactly, are you objecting to? The decision? Or the way it was reached?

"An excellent point. How lucky for us that the law has provisions for this, designating someone who would -- theoretically -- best be able to make the decision for you in case you were incapacitated.

In fact, I believe there's this "marriage license" thing you sign when you get married that -- among other things -- specifies your "spouse" as that person."

It doesn't always, and it doesn't have to.

Morat: Where's the problem? The personal legally compelled to make the choice made it. Her family objected, and several courts sided with the husband -- not just on legal "He's the Guy Who Gets to Decide" grounds but on the actual merits of the claim "Terri would have wanted this".

Indeed, and the latter part - "Terri would have wanted this" is more important, IMO. I'll be interested to see how Sebastian responds to this part of your comment.

I've already responded. To reiterate, if a patient's wishes are clearly known you should abide by them. I think there was a large enough margin of doubt in this case to make removal of care a bad idea. That is why I was proposing the kernel of what I think is a better system--make it easier for wishes to be known, make it easy for families as a whole to give evidence about decisions, make it difficult to kill/allow someone to die if there is controversy about their actual wishes in the absence of a writing which addresses the subject. But I really think that the best push would be in encouraging people to make whatever wishes they have on the subject explicit.

But seb, it's difficult to see how your proposals could not help but cause a Medicare financial crisis as well as forcing the courts into even more cases, as I assume that the majority of people who go into PVS do not leave clear written statements, especially since this is a 'young person's condition' in that a person who is relatively healthy is more likely to survive. Who would pay for this care? Who would be responsible for paying for this care? Why wouldn't we end up with PVS farms where people are kept in sub-minimal conditions because the law would require they be kept alive? By removing the responsibility from those who it has traditionally fallen upon, this seems like the exact inverse of conservative principles.

I'm not sold. Basically, all of the objective items you recommended were done, but you are emotionally unwilling to accept the results. I don't have a problem with the process or the results here, because it is clear to me that someone in PVS is someone who is essentially dead anyway.

This is far worse than any coma, but, because it happens to destroy the part of the brain that makes one human, rather than the part that makes it possible for parts of your body to function, the body can function as long as there is a major medical intervention. In my set of priorities, it ranks just above public funding for selective plastic surgery.


If you have a problem with the starvation, the only solution is to legalize chemical euthanasia. Otherwise starvation and dehydration are how it's going to be done, unless you're "lucky" enough to get an infection.

" I don't really believe that someone saying that they wouldn't want to live on a respirator is objecting to the same class of support as a feeding tube. "

I'm not convinced. People generally say that in reference to living in a coma or similar unresponsive or minimally responsive state without hope of recovery.

That's really what people are talking about, not specifically the fact of being on a respirator. I don't think people tend to be that specific in their language or meaning. They aren't going to specifically delineate the devices they would endure being hooked up to, and the devices they would not.

It's more of a blanket statement on quality of life which one would not want to endure.

Whether it's a feeding tube or a respirator is kind of beside the point. The point is the prospect of an prolonged, mindless un-death. The cause of that is the irreversible brain damage. The feeding tube or the respirator just facilitate the unwanted state of being.

Sebastian, I understand where you are coming from, but it still gives me the willies. I mean, I remember reading Sartre's No Exit in the original French. Schiavo's situation is sort of like the real-world equivalent for purgatory or limbo. It is a state that I would not want prolonged.

In that sleep of death ... what dreams may come must give us pause.

Schiavo is living those dreams now. It gives me cold willies. It's one thing when the Pope says that suicide is a sin: suicide is an act of personal will. But when your entire will has been taken by some occurence, it is hard to understand where any additional sin is involved: a sin is an act of will, either of commission or omission. Terry Schiavo is long past all acts of conscious will at this point. (Although, if God is old-testament vengeful, it is possible that Schiavo is daily committing various sins of omission: for instance, she hasn't taken any sacraments in a long while.)

And let it be clear: I do not believe that acts of will are possible if you are missing vast chunks of your brain. A "persistent vegitative state" is a medical term for medically prolonged death, as far as I can understand it.

And to John H: "Quality of life" is not a sufficient argument when religion enters the picture or even if it does not. Permanent Lack of individual will, on the other hand, is a much more profound foundation for a theory of life and death.

Schiavo's case is not the same as euthenasia (nasty!) or even "assisted suicide" (problematic!). When all will is lost -- unrecoverable consciousness -- the possiblity of making new choices is lost. In religious terms, it seems to me that you are beyond sin or salvation. Now, if you believe in active physical miracles, as in "God can put back Schiavo's brain if He feels like it", then you are in another realm altogether.

It means you have accepted the radical right's post-enlightenment theology. It's not so different from the radical left. No wonder Horowitz fits in so easily. Leopards and spots....

i just wrote something to this effect at the tail end of hilzoy's schiavo post, but to reiterate, notwithstanding visceral assessments of difference between feeding tubes and respirators, the law recognizes them as equal because in both cases, indeed even in the milder case of an injection of antibiotic, in the absence of actual or inferred consent, the treatment is an unlawful touching -- a battery. this is a bright-line principle, evident in cruzan.

regarding your proposals, sebastian, i think your equivocation regarding the standard of proof is missing the fact that, if you require the uncontroverted testimony of two qualified witnesses, you are, in effect, imposing a reasonable doubt standard. not to mention that even in the context of reasonable doubt cases, nobody asks that all evidence be uncontroverted. to impose such a requirement anywhere in law would be to effectively preclude the effectuation of whatever such proof would be required to enable -- it would be utterly impracticable.

finally, i really don't see how written documentation changes any of the underlying principles: if i fill out a DNR now, and am in a PVS ten years from now, what's more authoritative -- the ten-year old, dust covered document fished out from the back of my file cabinet or the testimony of my beloved spouse of the five years preceding my accident, whom i met two years after i executed the DNR? if oral testimony is categorically insufficient, why should the law recognize any oral contracts?

I don't think there is anything beyond on sentimental reasons to see a distinction between feeding tubes and respirators. There are plenty of alert, completely communicative people, people holding down jobs and raising families, who cannot breath on their own or who cannot eat food for a variety of medical reasons.

I've never heard of anyone using a feeding tube when a body was being kept in "alive" for organ donation - but there are dozens and dozens of reasons why a person might need a feeding tube (ingesting caustic poisons is one) and dozens and dozens of reasons why a person might need a respirator - or dialysis, or aggressive care to ensure that problems with their skin (an organ that has failures like any other) doesn't kill them. This is all beside the point. The point is that technology can keep the heart pumping and cells regenerating beyond they point that any reasonable and prudent person would call life.

And outside of tragic accidents like this case, and outside of genetic problems that make life impossible - there is there very large problem of elderly people who get an extra week, or an extra day, or an extra three hours because of heroic measures.

The reality is, we as a society need to know when to make the call. The genie doesn't go back in the bottle.

Terri Schiavo has now died.

Terri Schiavo has now died.

Thank God for that.

I saw that Anarch.

I'm sort of at a loss for what to say, but on some level actually don't feel I have a right to a response. I knew so very little about her.

Other than the sorrow I'd feel for anyone whose life ended so tragically, I think anything else is more response to the circus it generated than a reflection of what this means to me personally.

I saw that Anarch.

I'm sort of at a loss for what to say, but on some level actually don't feel I have a right to a response. I knew so very little about her.

Other than the sorrow I'd feel for anyone whose life ended so tragically, I think anything else is more response to the circus it generated than a reflection of what this means to me personally.

I only just got back from North Carolina, where I was giving a talk, to find this news. I wish her peace.

many disabled people, who have trouble swallowing have feeding tubes,...if you break your legs, please don't use crutches, because that is artificial, if your grandmother uses a walker to help her walk, please take it away from her, she should be walking on her own! if you wear glasses to help you see, take them off! that is artificial! if you ever break your jaw & cannot eat, or have trouble swallowing, please don't be fed with the help of a tube...just starve to death, people who are saying a feeding tube is artificial, medical means of support, use artificial means to support their lives everyday, they just don't realize it, and terri didn't have to "improve" or "get better" to deserve food & water..many mentally challenged people will never emotionallly grow past 4 or 5..they are, technically, not going to "get better"...but we don't stop feeding them do we? use common sense

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