Asymmetrical Information

I think your point is well taken-- but since we can't know exactly what a non-communicative person is thinking, we have to use our best knowledge--and that can't be an off-hand conversation-- it has to be something with more formality--more thought-out.

IMHO, only a notarized, Living Will should allow the removal of life support--other than that--nope. Too much at stake.

IMO, only a written, signed, and witnessed living will, within the boundaries permitted by the law, should carry the full weight of law. Anything else should be treated the same way as any unwitnessed/unwritten post-mortem will -- a "long shadow of doubt" cast on the contents or testimony of third parties, disbursement sometimes adjusted in ways contrary to what is claimed that the deceased would have desired.

As for what should be permitted by the law:

(1) Respirator -- clearly an artificial life enhancement. Should be withdrawn after a reasonable temporary waiting period if the injured has declared so in advance, or if the spouse/family agrees once it is clear that brain activity has ceased.

(2) Food -- may be an artifical life enhancement. Should be withdrawn after a reasonable temporary waiting period if the injured has declared so in advance. Should NOT be withdrawn in any other case if the inured is capable of breathing.

(3) Water -- may be an artificial life enhancement, but the process of dehydration and toxin buildup in the body is, in my estimation, very cruel. Should not be withdrawn under any circumstances, although if (2) is true I would have no objection to administering narcotics in order to ease the passing.

This is crazy. A person should be able to do whatever the hell they want to do with themselves. Get tatoos, scars, hang themselves...as long as they are not taken someone with them.

"With that in mind, should we let people decide to pull the plug if they're in a vegetative, or semi-vegetative, or vegetative-appearing, state? ."

Depends on what kind of vegetable. Ucky beets, pull the plug.
Yummy tomatoes..second thoughts.

We shouldn't euthanize people in these situations, but it's not because having one's face scarred or being paralyzed is less severe than being in a vegetative state; it's because people who are likely to soon be conscious and able to make the decision whether to die or not themselves. However, once the disfigured model or the paralyzed athlete wakes up, we should most definitely honor their wishes if they want to be euthanized. Preventing a conscious person from committing suicide is an outrageous infringement on individual liberty.

I might be persuaded to euthanize the paralyzed athlete if he will require significant medical expenses before he regains consciousness. There is definitely some value in allowing him to regain consciousness and decide whether a paralyzed life is worth living, but if he requires $100,000 from Medicaid to keep him alive long enough to make that decision, I'd rather let him die. Forget erring on the side of life. I'd rather err on the side of saving tax dollars.

Jane, with all due respect, you don't know what you're talking about.

I'm married to a woman who put in 10 years in an ICU unit at a large hospital. She often had to take care of patients who wanted nothing more than to die, but their families wouldn't let them.

There are two kinds patients here and you're ignoring the largest group. Many people, when they are about to die, can be kept alive for an extra couple of months with modern medicine. If you feel guilty because you haven't paid much attention to Grandma the last couple of decades, it's easy to hang on tight to her as she dies. A simple death can be turned into a six week excursion to hell.

Imagine: you wake up confused from the anethesia (many old people take a long time to get their faculties all the way back after anesthesia), you have a tube in your throat breathing for you. You are tied down, because the first thing you did was try to pull the assorted tubes out. You can't communicate, but you may be in no mental state to say anything useful anyway. You probably have pain, because you can't ask for meds (if you're sane enough, you can shake your head, but lots of them aren't) and they err on the safe side with the opiates. For all you know, you're being held down and tortured for no reason.

My wife took care of people on several occasions that simply laid in bed and shed quiet tears for weeks before dying anyway. ICU nurses had a term for it: Circling the Drain.

Note that not many young healthy people fall into this trap. It's mostly reserved for the elderly and infirm.

The right to life, IMHO, includes the right to death if the decision is made with a sound mind. Get those Living Wills filled out people!

Better watch out Jane, soon you too will be prosecuted as the RELIGIOUS ZEALOT YOU ARE!!!!!!!!!!!!!!!!!1111

A couple of disjointed points:

1. The question of the significance of a written living will, the quality and quantity of the signatures on it, and its substantive ambiguity are all just rules of evidence. You can say that in cases of life and death we should be incredibly stringent in the admission of evidence that would tend to take life, but if we then applied that same standard to criminal prosecutions you would not get many convictions. Basically, courts are excellent places to figure out whether evidence is probative and persuasive. It is a dodge to focus on the number of seals, notarizations and signatures on the document (as a couple of the commenters did). It is sort of like arguing for a three-judge panel instead of letting one judge make the call.

2. That having been said, we could create evidence so that the risks and incidence of vexatious and emotional litigation would decline dramatically. I can't imagine a reason why we should not require all adults to specify their answers to various of these questions. You could have a secure federal database, and all adults would have to answer specified questions about their preferences. Healthcare professionals would have access to the database for patients under their care. You could revise it at any time if your preferences changed. We could encourage compliance with the database by saying that no health care provider could be held liable for treating, or failing to treat, any adult patient who had failed to complete the questionaire. Call me a hardass, but I have detailed instructions, and have made it extremely clear (long before the Schiavo mess) to my nuclear and extended family how I feel (pull the plug if there is no meaningful chance of recovery -- I have no idea how I will feel, but I want my family to put my health behind them and move the heck on with their lives).

3. We labor under a illogical and barbaric distinction between acts and omissions. This causes us to do asinine and cruel things like remove feeding tubes. If you remove a feeding tube from a patient who cannot feed his or her self, by all means inject the patient with a sufficient dose of whatever painless drug will kill the body immediately.

Re: TigerHawk's comments, I think these decisions are too significant to be made based on responses to a government-mandated form. If you make people do it, far too many forms are going to be completed just to get them out of the way, with nowhere near the thought or reflection this requires. I think in most cases we'd still be better off relying on the testimony of relatives.

I agree whole-heartedly with point 3 though. Removing a feeding tube isn't the same as turning off a respirator - it's intentionally starving someone to death. If euthenasia is the right thing to do, then do it. Smother me with a pillow or something quick.

I had a doctor once that gave every patient a Living Will at every appointment until they filled it out and returned it to him.

Those are pretty contrived examples, and not in a forgivable way--in each cause you can wait for the person to wake up and then ask them if they want to die or not. The third hypothetical avoids this problem with extremely specific instructions, but even so, how much of a stretch would it be for them to wake up and write out "don't want this, give me a ton of morphine and take this thing out"? Even if the patient had a dread fear of waking up with a respirator, must we respect an equivalence between a half-hour of Their Worst Fear (prior to death) and an open-ended lifetime of it?

There's a good reason why all the hypothetical discussions we've had lately about living wills and guardian dilemmas focus on non-communicative patients.

We can talk about the new emotional equilibrium that people can find after life-changing accidents, but I don't see how you can rationally tie it into the guardianship issue on such a broad basis, entertaining as it may be.

The point, Brittain, is not that the hypothetical makes legal sense; it's that perhaps the whole idea of people knowing what they want when, say, they develop Alzheimer's is futile, because we know that people who mean it sincerely that they don't want to live disabled, in fact *do* want to live after they adjust.Are the mentally disabled really likely to have less will to live than the physically disabled . . . or do they simply make us more uncomfortable than the physically disabled, challenging our notion of what it means to be a person?

Very often, I've seen people express the fear NOT that they would be unhappy or uncomfortable if they suffered a destructive accident, but that they would become a burden to other people and don't wish to put anyone else through caring for them. They don't want to impose these demands on a spouse or family member. In this case, they are recognizing their own discomfort with the physically disabled as it relates to themselves. Are they entitled to this sentiment? If not, what do we have to do to shake them and make them feel they have a right to do what they fear most?

On another note, have you lost a loved one to Alzheimer's? Their last years are not times of a new emotional equilibrium--you witness ever more frequent bouts of fear and paranoia, as more and more parts of their life slip out of their control. They know things are going on, but they can't understand them. Nightfall is a terrifying time for them. It's possible that inside the fear and panic they've found a new equilibrium, but I don't think that I'm on any shakier ground than Bill Frist or Tom Coburn at diagnosing the state as one of misery and despair. Alzheimer's is not a non-communicative state.

Brittain33,

Let's put this a different way: how can a person know whether they'd want to live in a non-communicative state when they're not in it? They can't know ahead of time what it's like to be them in any given non-communicative state, because they haven't been in

So why is what they've said while they have no experience with said non-communicative state any more indicative of what they actually want when in that state than, say, consulting a magic 8-ball?

Life is filled with examples of people dreading things that they didn't mind once they came to pass. E.g. graduation. The point is not that graduation and being in a PVS is the same thing, the point is that human knowledge of the future is known to be very highly flawed.

When a person is in a communicative state, as in Jane's examples, people generally argue that they should be allowed to change their mind, despite previously thinking that they wouldn't want to live. If they're unlucky enough not to be able to communicate, does that mean that we must presume that they didn't change their mind?

It is a dodge to focus on the number of seal, notarizations and signatures on the document (as a couple of the commenters did). It is sort of like arguing for a three-judge panel instead of letting one judge make the call.

A "dodge," eh? Why is it a "dodge"?

One does not need to be a legal professional to know that written evidence -- preferably with a signature and, even better, signatory witness(es) -- is always a more sure claim of what a party intended at the time than hearsay evidence after the fact. Written, signed contracts are always harder to dispute than oral contracts; written, signed wills are always harder to dispute than oral contracts.

And moreover, written, signed documents are less subject to faulty recollection and misrepresentation (accidental or willful) of context.

This is particularly true when (a) the stakes are high, (b) the party directly affected is not available to come to his or her own defense, as in the case of severe impairment or death, and (c) the other parties coming to the table have potential conflicts of interest.

Edit:

Written, signed contracts are always harder to dispute than oral contracts; written, signed wills are always harder to dispute than [improperly completed wills or oral expressions of the deceased party's intended disbursements.]

If there is anything humanity has plenty of real life experience with it is the topic of death. We live with it constantly in the background of our lives and when we attend funerals we think of our own mortality and not just how we want to live but also how we want to die.

But we are never satisfied with just the real thing. So we fill our liturature, our plays, our movies with murder and mahem. We have even built one of our major religions around the death of the central charactor in what has often been called the 'Greatest Story Ever Told'.

Fortunes are spent to prevent it happening to ourselves with even greater amounts spent perfecting ways to cause it for others. Still, no one knows the time or the circumstance of one own death.

When I think of the irony of someone like Barbara Olson dying in an FAA certified airplane hijacked by Islamic terrorist and crashed into the Pentagon and the poltical circus surrounding the death of Terri Schiavo, I just know that I should be so lucky to have as peaceful a death as did my father.

So, if I do not get killed by some biological warfare agent or blown apart by a bomb or shot by a gun or tortured by the CIA or hung by a mob or crashed into a building, if none of these horrible things happen to me, and my impending death is by natural causes, please, please, leave me alone. Just let me and my family make the decisions; right, wrong or indifferent it doesn't matter, we are not getting out of this life alive anyway.

does that mean that we must presume that they didn't change their mind?

So are you arguing that the government should presume that their state of mind is now changed, and that any contracts the person signed about their treatment should be invalidated? Or just that people should think about this stuff a little more before they put their names on the pages?

It matters a great deal where you (and Jane) want to go with this thought experiment.

I have now read that the morphine was ordered on two occasions due to Mrs. Sciavo moaning. This suggests more presence then I understood possible in a vegative state. I think that one of the reasons this is such a contriversial case is that noone really knows what Terri is expierencing. I think Michael is trying to fulfill Teri's wishes. I think her parents love her alot and don't realize that they might be putting themselves ahead of Teri's wishes. Noone will ever know if anyone was right about anything in this case.

Jane Galt, you are passing over the issue of how long and painful the "period of adjustment" is. Suppose you were going to be tortured for 20 years. It might be small comfort to know that 10 years after the torture was over you would have recovered enough that you no longer wanted to die.

The Boston Globe had an article about someone badly injured at 17 who still wants to die at 41. I guess he's still adjusting.

And another thing, many people dread the prospect of ending up on a feeding tube. If they can reduce the chances of this by signing a living will (with the knowledge that it will be honored) this increases their current happiness which is worth something.

An acid attack that renders the model unable to communicate? You mean the acid dissolved her tongue? Your examples are not very realistic.

I think these kinds of cases are very dependent on the specific fact situation, which is why they have been dealt with at the trial court level, which although not perfect is the best way we have to ferret out the facts.

Assume, for the sake of argument, that someone's brain has dissolved--it's not longer there--and the person's body is "alive" simply because of brain stem reflexes, and assume that we somehow know this for sure, 100%. What then?

Jane,

Jehovah's witnesses can and do refuse transfusions.

Assuming they still sell guns, knives, poison, rope, etc to ex-models who've had acid thrown at them, such a person remains perfectly capable of killing herself if she decides after the fact that she really wants to.

But in every case, I'd say "in the absence of unequivocal proof otherwise, assume the patient wants to live". And "unequivolcal proof" pretty much means a notarized Living Will or a contemporary declaration by a conscious patient to his or her doctors.

People who are utterly able to communicate their own wishes vary in how they view their lives... even with no disability involved. We all know people for whom the glass tends always to be half-full (or half-empty). In the presence of an advance directive of the "let me go" type combined with loved ones who vehemently oppose it, should the person's general level of optimism or pessimism have any weight? Should the differential between the person's condition at time of signing versus his/her current straits mean anything - i.e., directive written while young & healthy, applied when old, with advancing dementia and infirmity, as opposed to directive written when aches & pains & forgetfulness are already setting in?

I said elsewhere that I'd recently read that in that kind of case, med. personnel often disregard the directive, because to honor it is to eliminate, irrevocably, any possibility of changed mind(s) later, whereas to disregard it preserves that possibility. What to do? In the non-vacuum in which we live, do the left-behind count for anything, or is individual license everything?

I use the term "license," instead of "rights," deliberately. Most people have relationships. To say that suicide affects only oneself is usually a horrible lie. Even from a hospital bed, where one's earning potential may be over and one's conversational skills gone, assisted suicide may still cause the left-behind great pain, depending on the circumstances. So what to do?

I think your wishes should be put on your drivers license, similar to your (non) participation as an organ donor. Or on you're walkers ID. Or maybe your marriage license. People do change their minds, but what we should be trying to do is allow each individual as much responsibility in selecting their treatment in this situation as possible. This won't stop the court cases, the Schindlers have stated they would have challenged removing the feeding tube even if it were known to be Terri's absolute wish. But it would remove the spouse as a villian.

But as it's been pointed out elsewhere, you'd also have to require regular updating. I'd imagine that if I were in the Schindlers' place (may the good Lord spare me that pain), thinking about my mid-20s daughter's offhand comments about not wanting to live like Quinlan or like an elderly relative who died hooked up to machines, I'd wonder too whether to imbue those comments with the force of a living will.

So Fabulous wrote: "I think her parents love her alot and don't realize that they might be putting themselves ahead of Teri's wishes."

If I recall correctly, Terri's mother told the court that she would not have the feeding tube removed even if Terri had left undisputed unwritten wishes to the contrary. Sorry, I don't have a cite.

OTOH, perhaps Terri's father is feeling guilt over his decision to terminate his mother's life without written instructions? He gave his mother one week and then pulled the plug.

michigander: "OTOH, perhaps Terri's father is feeling guilt over his decision to terminate his mother's life without written instructions? He gave his mother one week and then pulled the plug."

Huh? I had not heard that one. Can you provide a cite?

The thing that bothers me most in this case is the government trying to overrule what is, basically, a private matter; and the parents trying to overrule what is the spouse's perogative. IIRC, a spouse is assumed to speak for your wishes?

Cite for Robert Schindler's decision to terminate life support for his mother (last paragraph):

http://www.guardian.co.uk/usa/story/0,12271,1077219,00.html

"Cite for Robert Schindler's decision to terminate life support for his mother (last paragraph):"

Thank you....**Sniffs air** I love the smell of hypocrisy in the morning....

I bet Schindler's mother had a better prognosis on dialysis than his daughter has...I've known people who lived 15 years on dialysis as happy, productive members of society. I wonder what he'd have said if someone had tried to overrule HIM.

"I wonder what he'd have said if someone had tried to overrule HIM."

I don't know. He'd probably have been outraged.

I'm not suggesting he made the wrong decision. But it's one that he made without being dragged into court 30 times. Without being called a murderer.

"But, given the vehemence with which he has been fighting to prolong Terri's life, it is a little surprising to learn that Robert decided to turn off the life-support system for his mother. She was 79 at the time, and had been ill with pneumonia for a week, when her kidneys gave out. 'I can remember like yesterday the doctors said she had a good life. I asked, "If you put her on a ventilator does she have a chance of surviving, of coming out of this thing?"' Robert says. 'I was very angry with God because I didn't want to make those decisions.'"

Just to be sure we're all talking about the same thing here, that's the last para from the Guardian article cited above. Salient points: Schindler's mother was 79, had been ill with pneumonia (serious at that age - at any age) when her kidneys shut down (medical professionals: does this tend to indicate organ failure, being organ failure and all?), and (implied but not stated) apparently was not taken off a ventilator but was rather not placed on one, possibly because assisting her breathing was only one of several interventions that would be needed to keep her alive, dialysis being another, and - help me out, I'm obviously unschooled in this field - once you have a ventilator, you HAVE to have a feeding tube, don't you? Am I reading it correctly?

Find me one, just one, rabid right-wing fundamentalist Christian - I'm not even going to ask for a moderate Republican or anything - who denies the reality of death. Everyone, or almost everyone at any rate, knows that we all die. The question here is whether we die in God's/Nature's time or in someone else's. The argument that a hospitalized 79-year-old woman with pneumonia and failing kidneys (note that the article is silent on whether she was hospitalized FOR the pneumonia or whether it was post-op or a complication of any other condition she may have had) was in the process of dying in God's/Nature's time, but that Terri is dying in Michael Schiavo's, doesn't seem especially hypocritical to me.

OTOH, see http://nationalreview.com/comment/pfeiffer200503301030.asp, evil as it may be, for some discussion of George Felos's view on death, including the following: "His apparent lack of concern for Terri Schiavo's plight might be better understood in the context of his belief that '[i]n reality you have never been born and never can die.'" And "Felos claims to have used his mental powers to cause a plane he was passenger on to nearly crash. By simply asking himself, 'I wonder what it would be like to die right now?' the plane's autopilot program mysteriously ceased to function and the plane descended into free fall. Felos then observed, 'At that instant a clear, distinctly independent and slightly stern voice said to me, "Be careful what you think. You are more powerful than you realize." In quick succession I was startled, humbled and blessed by God's admonishment.'" Apparently both quotations are from Felos's 2002 Litigation as Spiritual Practice. (I'd add that the other passengers on that plane were only blessed by God's - ahem - admonition [are there no editors any more?], since clearly the power of their thoughts wasn't enough to save them. Also that I always want to fly on Felos's plane as long as he's disciplined about his thoughts, since no doubt every adult who's ever gone down in a plane crash has spent at least some part of those final moments thinking, "I don't want to die!" yet only Felos seems to be able to control the situation.) Lest anyone think all the nuts are on one side.

Jamie, I'll bite.

I'm making an assumption that Schindler's mother could have lived on a ventilator and feeding tube indefinitely (We'll never know...he didn't even give her that chance). This assumption may be flawed; we don't have enough information to tell although she seemed to live for a week.

If you accept that assumption, how can he unplug Mom and object to unplugging daughter? Neither mother nor daughter have/had any chance of recovering to what they were before the medical problems started.

OTOH, who is George Felos and what relevance does a malfunctioning autopilot have to anything?!?!?

"...in the process of dying in God's/Nature's time"

It is an interesting point.

But wasn't Terri Schiavo in that process in 1990? God and/or Nature would have taken her then.

BTW, my best friend was on a ventilator for 43 days and did not have a feeding tube. Nutrition was by IV. He didn't make it.

Back to the topic, from some of the other comments here:

"only a notarized, Living Will should allow the removal of life support"

"only a written, signed, and witnessed living will, within the boundaries permitted by the law"

This is not the standard that was applied to Bob Schindler's mother. Nor Tom Delay's father. Nor is being applied to Spiro Nikolouzos. Go search that name. There is no family member who wants to terminate Spiro Nikolouzos's life. But in Texas, under a law signed by George W. Bush, the decision can be made without the family's consent.

"Should we take into account those wishes, and kill her before she wakes up?"

She's going to die before she wakes up regardless of what choice is made. Her mind was permanently destroyed over a decade ago.

We're arguing over what to do with an empty husk. Empty husks don't have wishes.

Speaking from a pop-psychology view: I believe that many healthy people who state "I would not want to live like that" are subconsciously comparing their current healthy state versus a prospective disabled state. It's like a bluff in a negotiation.

Here's an experiment to try: talk to a sample of people about end stage renal disease and the quality of life on dialysis. Ask them how long they would choose to live on dialysis.

Then compare with the cohort of people who actually do develop end stage renal disease. Over their lifetimes, approximately 10% of these patients voluntarily withdraw from dialysis while they are still alive, resulting in their certain death after a week or two.

http://archinte.ama-assn.org/cgi/content/abstract/155/1/42

Then compare the two. Are the verbal expressions of healthy people consistent with the actual actions of ESRD patients?

On the legal front, as long as there is some way for competent people to express their desires in a binding form in advance, that will relieve a lot of the problem. I'll just have to take responsibility and write a living will.

I used to think that I didn't need a living will. However, social norms are changing, and the law may soon follow. I'll have to write a living will that says, yes, I really DO want a feeding tube, a ventilator, and anything else that will prolong my life.

Michigander, one of those statements you excerpted was mine; and as for your comments against it, I unoriginally respond, text out of context is pretext. Re-read what I actually wrote, please, and then compare it to our host's own question to which I was responding.

This is, like, y'know, "The Perfect Storm," right?
For the politicians and the media and the religious zealots, that is....
As if there haven't been a zillion other cases just like this.... Cases which haven't attracted even 1% of the attention.
Nobody wants to live as less than a hot 24-year-old, in principle.
Almost nobody wants to die, ever, in practice.
Human weakness: it's not just your sad little life, it's "The Law...."

Henry Reardon:
George Felos is Michael Schiavo's lawyer.

The article said Schindler's mom's kidneys were failing - that's where I pulled the dialysis from. My lay understanding is that kidney failure not related to kidney disease is often a precursor to death by multiple organ failure. Am I misinformed? (It wouldn't surprise me. But in this case, the clear implication was that dialysis would have been necessary.)

Michigander:
Thanks for the info - I wasn't sure whether IV feeding was viable long-term. I'm sorry to hear that in your friend's case, as least, it wasn't.

As for dying in God's/Nature's time, heaven help us to make good decisions, we live in this difficult age in which the formerly always-fatal isn't always fatal. The initial act having been performed to restart Terri's heart, and several years of family support on both sides for doing what could be done to help her live as well as she could under the circumstances, I consider the window shut and latched against going back and claiming that removal of nutrition by any means - tube, IV, or mouth - is just a delay in letting her die in God's/Nature's time.

That, of course, is me speaking ex cathedra. Speaking of which, I understand the Pope is now on both breathing support and a feeding tube, and is very frail.

anony-mouse, I went back and re-read your comments.

You're correct, I took then out of context. The error was one of haste, not of intent. I apologize.

The comments by afiesq do match the viewpoint I mentioned.

Terri Schindler Schiavo has died. RIP.

Michigander: cheers...

Jamie writes: "As for dying in God's/Nature's time, heaven help us to make good decisions, we live in this difficult age in which the formerly always-fatal isn't always fatal."

I've gone through about three or four versions of a reply to this.

Let me say from personal experience, it's a very difficult decision to make. I held (and still hold it for another) written witnessed notarized authority, drawn up by an lawyer, entered into years before.

But it's still an awful decision. I am firmly convinced that I did the right thing. I remember the call, agreeing with the doctor that it was time to change care for my father to one of comfort. I did this at work and I was calm. I then walked into the parking lot and cried like a baby.

What would have happened if it hads turned into a years-long public battle? I can't imagine that.

I know an RN who works in post-transplant ICU. She has told me that she can keep someone alive almost indefinitely. Many people are kept alive for weeks or months, in a condition that rivals anything that Edgar Allen Poe wrote. They fail, piece by piece, and we plug in something to replace the failed piece. We spend hundreds of thousands of dollars to keep someone alive for an extra three months, while they lay in bed in agony. At least, sometimes we do.

Jamie, let me echo your remark. "Heaven help us to make good decisions."

Well, what's your counterfactual?

On the acid attacks on fashion models the counterfactual is the opinion of the model once she wakes up & can start communicating. Ditto for the athletic spouse.

The trouble with the apparently perpetual vegetative state is that they're, as far as we can tell, not going to wake up. So the counter-factuals are:

Which is the better alternative? Or am I missing an alternative, and if so is it a better one?

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