RIP Terri Schiavo

[Lambchop]

There was a man with a progressive neurological disorder who lived in a hospital for years and years and years. Now, when you end up in the hospital with a condition like that, it's an indication that you're pretty far gone--what most people would consider total care and "on your way out."

Even early on, when the hospital would try to move him to a community long-term care facility, he'd be back within a week or two with pneumonia and God-only-knows what else, filthy and suffering from neglect. Seems the new doctors and staff didn't see him as having value. They saw him as a vegetable and a burden on society. They were willing let him die, the family said. Or, actively trying to help him along to death. So, the hospital finally gave up and moved him into his own room, with space for his family to stay for long periods.

For the last several years, he was so completely paralyzed that he was able to move only his eyes, and that just a little bit. He was completely dependent on a ventilator and feeding tube. He communicated by means of blinks, carrying on long, involved conversations.

To outsiders, he appeared to be a wasted life. He seemed to be a person who should have been allowed to die years before, because who would want to live like that?

He did, and he would tell you so. He needed to live for his family and he needed to live for himself. The hospital staff felt he needed to live for them. Everyone had a positive benefit from this man's continued life and from the privilege of caring for him. The clergy said he had been one of the most spiritually developed individuals they had ever known, and that watching the transformation over the years had been an incredible experience. When he finally died, after somewhere around a decade in a totally incapacitated state and substantially longer than that in the hospital, it was profoundly moving.

It's very easy to look at the ill, the elderly, and the handicapped and confuse our disgust and fear with sympathy for their plight.

[Cynth]

I would say that the main thing here is that he was able to communicate. He was conscious, he had the use of the part of his brain which made him a human being. I don't think anyone would (or should) advocate that a person in his situation should be regarded as anything but fully alive and entitled to make his own decisions about his life.

[TomB]

I would say that the main thing here is that he was able to communicate. He was conscious, he had the use of the part of his brain which made him a human being. I don't think anyone would (or should) advocate that a person in his situation should be regarded as anything but fully alive and entitled to make his own decisions about his life.

I agree, he told them what he wanted and that's what they did.

As has been discussed, there are a couple of lessons to be learned:

- In my opinion, everyone should make certain they make their own decisions on end of life issues while they are able. Jim Stone has put out a lot of info for folks to consider when doing that.

- Medical technology can keep folks "living" a lot longer, but at what price? If we don't want to live through more and more cases like this, we as a society need to make some changes. Many folks here who are against the way the Schiavo matter was handled made the excellent observation that we would not treat our pets the way we treated her. Unfortunately, we couldn't treat her that way. We think enough of our pets to put them down when they are suffering too much, even if we don't know their thoughts, because we know it's the right thing to do. When do we start showing our loved ones the same compassion, if they want that?

All the Best, Tom

[Caj]

See, but the matter is much simpler when a non-human animal is suffering.

An animal can not reason about the state it's in, and express a desire to be kept alive or let to die. This case is controversial because we had no solid evidence of the woman's wishes; we had her husband's assurance, and he custody, so legally it was an open-and-shut case. But ethically it is a tough question.

In fact, even with a living will it would be a tough question. Most of us having never been through such an experience can easily say "pull the plug if that ever happens to me," and even have that notarized; but are we really experientially qualified to make that decision? Would we change our minds in extreme circumstances?

The other problem is that we can not easily tell if someone is conscious, or has the capacity to regain it, or feels pain in a vegetative state.

Now, as for the husband having a conflict of interests and thus being unqualified to make the decision: I don't know how it is possible for you to have power of attorney over someone and *not* have a conflict of interests. If you are that close to someone, you'll be connected to that person in all sorts of ways, including financially. Who in the family could be given custody instead, whose decision wasn't impeachable on grounds of money etc?

Caj

[jim stone]

See, but the matter is much simpler when a non-human animal is suffering.

An animal can not reason about the state it's in, and express a desire to be kept alive or let to die. This case is controversial because we had no solid evidence of the woman's wishes; we had her husband's assurance, and he custody, so legally it was an open-and-shut case. But ethically it is a tough question.

In fact, even with a living will it would be a tough question. Most of us having never been through such an experience can easily say "pull the plug if that ever happens to me," and even have that notarized; but are we really experientially qualified to make that decision? Would we change our minds in extreme circumstances?

The other problem is that we can not easily tell if someone is conscious, or has the capacity to regain it, or feels pain in a vegetative state.

Now, as for the husband having a conflict of interests and thus being unqualified to make the decision: I don't know how it is possible for you to have power of attorney over someone and *not* have a conflict of interests. If you are that close to someone, you'll be connected to that person in all sorts of ways, including financially. Who in the family could be given custody instead, whose decision wasn't impeachable on grounds of money etc?

Caj

I think it was flawed legally. The evidentiary rule in Fl is
'clear and convincing evidence' that the feeding tube being
removed in a condition in which she wasn't dying is what
Terri would have wanted. Allowing that Terri said all the things
the husband and his family said she said, I don't think
it amounted to clear and convincing evidence, on a plain
reading of those words. I've gone into this at some length
twice in the political thread, so I hesitate to do it again,
but just as an example, she said that if she is dying she
just wants to be let go; she doesn't want to be kept alive
on a machine. But the feeding tube isn't a machine
and she wasn't dying. If I'm dying, me, Jim, I don't want to be
kept alive on a machine, but I would certainly want
the feeding tube in PVS. Not the same wish, you see.

Similarly she said she didn't want to be a burden.
Neither do I, who does? But this pronoucement is
too general and vague to apply to removing a
feeding tube in PVS. Also she wasn't a burden.
Her parents desperately wanted her to stay alive
and her husband was acting for her sake, not
because he considered her a burden.

She said she didn't want to be kept alive by
artificial means. But 'artificial means,' especially
at the time she said these things, didn't for
most people connote a feeding tube, but a
respirator. So Karen Quinlan's father, seeking
to have the respirator withdrawn (artificial means)
responded to a judge's question 'Why not the feeding
tube too?' in horror:

'No, of course not. That's her food!'

Another feature of clear and convincing evidence,
is that casual remarks, even emphatic ones, don't
cut it. What one wants is something that reflects
a considered judgement, something settled:

She is reported to have said, after watching a TV
movie in which a man ends up in a coma after
an accident: 'If ever I'm like that pull all the plugs--
put that in my will!'

The difficulty is that this may well have been a casual
remark, expressing a transient response to a show
contrived to create these sentiments. Note that she
didn't put it in her will.

At the same time a close friend testified that
Terri was vehement in a conversation in 1982
that Karen Quinlan, a young woman in PVS, should
have been left on her respirator. This certainly supports
the idea that Terri would not wish her feeding tube
withdrawn if she were in Quinlan's position. Its
focused and forceful. The judge dismisses it, however, largely
on the basis of a factual blunder. The friend, Terri
Meyers, I believe her name was, reports Schiavo talking
as if Quinlan were still alive. The judge points out that
Quinlan died in 1975, when her respirator was removed,
so the conversation could not have been taking
place when Meyers said it was. His mistake is
that Quinlan began breathing on her own when
the respirator was withdrawn; she died in 1985,
so she was alive in 1982.

Put it all together and you have a lot of statements
that don't clearly apply. One statement about comas
that may or may not express a considered judgement,
plus forceful testimony to the contrary that is dismissed
on the basis of a factual blunder by the judge.
This doesn't rise to the level of clear and convincing
evidence that Terri would wish the feeding tube withdrawn
when she isn't dying, but is comatose with little
chance of recovery.

I've talked to a probate lawyer who tells me that
it is terribly hard to overturn an initial ruling like this;
the appeals court tend to accept the judge's ruling
as the trier of fact. Most of the added litigation in theSchiavo
case was about other matters, e.g. Terri's Law,
whether she could recover, whether Michael was
a fit guardian. The initial factual ruling was upheld
only once, I beleive. And of course we know that
bad legal rulings often survive repeated appeal.

There are two lenses through which to view this as law, IMO.
The first is the right of people to decline medical care,
and to express this effectively in advance of incompetence.
The second is the right of a disabled person, who lives
at the mercy of a guardian, to have adequate safeguards
in place to protect her from the guardian if he
decides to do away with her. The 'clear and convincing'
evidence standard seems a reasonable place to
draw a line. The difficulty is that, when it comes to
the disabled, there is a presumption in favor of
death. As things now stand, a disabled person is
in serious danger from a guardian who considers
her as good as dead, better off dead, or who wishes
her dead for his own reasons.

[Caj]

She is reported to have said, after watching a TV
movie in which a man ends up in a coma after
an accident: 'If ever I'm like that pull all the plugs--
put that in my will!'

The difficulty is that this may well have been a casual
remark, expressing a transient response to a show
contrived to create these sentiments. Note that she
didn't put it in her will.

It certainly isn't good to use a sentiment expressed just after watching a TV movie.

Actually, I wonder how many similar statements happened just now: during the drama of Terri Schiavo, people expressing similar sentiments to loved ones, sentiments which might change after this whole thing has settled down.

Caj

[TomB]

See, but the matter is much simpler when a non-human animal is suffering.

An animal can not reason about the state it's in, and express a desire to be kept alive or let to die. This case is controversial because we had no solid evidence of the woman's wishes; we had her husband's assurance, and he custody, so legally it was an open-and-shut case. But ethically it is a tough question.

Right, the animal can't tell us, and yet we put it to sleep. Now folks are fighting over it even if one has said- I realize that there is much debate about that in this instance.

I agree with you, it is a tough question, but one, I feel, ultimately must be dealt with.

In fact, even with a living will it would be a tough question. Most of us having never been through such an experience can easily say "pull the plug if that ever happens to me," and even have that notarized; but are we really experientially qualified to make that decision? Would we change our minds in extreme circumstances?

I don't know, but I don't think I would, not if I was in a state like she was.

Now, as for the husband having a conflict of interests and thus being unqualified to make the decision: I don't know how it is possible for you to have power of attorney over someone and *not* have a conflict of interests. If you are that close to someone, you'll be connected to that person in all sorts of ways, including financially. Who in the family could be given custody instead, whose decision wasn't impeachable on grounds of money etc?

Exactly correct. Nobody could. I still maintain, that I would prefer having my spouse/significant other rather than parents, siblings, etc.

All the Best, Tom

[jim stone]

Right. The scary scenario is that we're watching TV in a
bar, a picture of Schiavo appears on the screen,
and I say to you: 'Hell, I'd rather be dead than like that!'
This gets trotted out in court as grounds to starve
me to death.

This is the tip of the iceberg, I'm afraid.
People are signing living wills as a remedy.
But the wills are signed without consulting a doctor
and most people don't know what 'PVS' MEANS.
In fact, most people diagnosed in PVS recover.
The wills are often slanted toward death,
and people are being sold on the idea that
this is a 'fate worse than death.' So you
get confused and muddled optings for death.

Often the wills MISDEFINE 'PVS' e.g. a comatose
state from which I will not recover. This
is medically mistaken.
There is a tendency to confuse 'persistent'
with 'permanent,' and its sometimes in the
wills themselves. There is nothing in the
definition of PVS that implies you will not
recover. So I sign the living will on PVS thinking
it means one thing and its interpreted by people
who take it to mean another.

Instruments this muddled or slanted, signed by people who do not
know the meanings of the operative terms, aren't
clear and convincing evidence! But of course they
will be counted as such by the courts.

One standard that is usually in place in making life
and death medical decisions is that the patient
gives informed consent. He knows what the condition
is, he knows what he's accepting or declining, he
knows the pros and cons of accepting and declining.
Without INFORMED consent there is no consent.
But Living Wills don't constitute informed consent!

In addition there is a prima facie argument that one should
opt for continued life in PVS. Suppose I'm in one for
five years, but I'm still relatively young. PVS is defined
as a condition in which there are sleep wake cycles
but no consciousness or awareness of self or environment.
In short I'm not suffering. There remains a possibility,
even a very poor one, that i will recover or that doctors
will find a way to treat my condition. Well then, it's
in my interest to gamble on continued life. What have
I got to lose? Life is no burden to me. Of course I
might recover to severe disability, still severely disabled
people are often reasonably happy. On the face of
things I should opt for life in circumstances in which
people can be happy. It isn't as though by doing
so I'll miss my chance to be dead.

This presumption that it's in my interest to stay alive
in PVS can be beaten by various
considerations. But still it exists and it's never mentioned.
You don't have informed consent if people never hear
arguements in FAVOR of opting for life!

I think that Living Wills should have little legal force UNLESS
there is an accompanying signed statement by a
physician that she has explained the operative terms,
the relevant probabilities of recovery, and the arguments pro and
con. The kind of argument I just mentioned ought
to be part of the process. Of course physicians aren't
about to do this, because they don't know what
Living Wills mean either.

This is a mess.

[Cynth]

I have made a will in which my husband will be my guardian if I am unable to take care of my life. I have said that I do not want to be kept alive by any measures if I cannot recover to have a good quality of life. Yes, that definition will vary from person to person so I suppose it would be good to be quite specific about it. I personally feel I know EXACTLY what I mean----please give me some credit for some sense. My husband and I have discussed this a number of times---he knows what quality of life I would need. I do not want to be in a coma for 5 years, no matter what the outcome. Neither does my husband. I do not need a doctor signing off on my will.

My only comfort here is that if people who are not in any way concerned with me start contesting my will and my own decision about my life, I will probably not suffer because my brain will not be capable of it. The ones to suffer will be my husband and family. I do not wish to place that burden on them. My will should be considered a binding document.

My main fear is that I would recover on my own and be completely dependent on others. This is no criticism of those who have valiantly lived such lives, it is just not something I would want.

I think people have very different feelings about death. For me, there are many things worse than death.

[TomB]

Right. The scary scenario is that we're watching TV in a
bar, a picture of Schiavo appears on the screen,
and I say to you: 'Hell, I'd rather be dead than like that!'
This gets trotted out in court as grounds to starve
me to death.

This is the tip of the iceberg, I'm afraid..

Jim- I mean no offense by this, but this seems to be a typical argument of yours, if you are against something- don't change things because it may not work the way you want it to. Guess what, it's not working now.

I think that Living Wills should have little legal force UNLESS
there is an accompanying signed statement by a
physician that she has explained the operative terms,
the relevant probabilities of recovery, and the arguments pro and
con. The kind of argument I just mentioned ought
to be part of the process. Of course physicians aren't
about to do this, because they don't know what
Living Wills mean either..

See, here you present a remedy and then say it won't work- why? It can be made to work, if we want it to.

This is a mess.

I completely agree with you there. Still, my feeling is I want to make the choice.

Again, I mean no offense in the above.

All the Best, Tom

[jim stone]

Right. The scary scenario is that we're watching TV in a
bar, a picture of Schiavo appears on the screen,
and I say to you: 'Hell, I'd rather be dead than like that!'
This gets trotted out in court as grounds to starve
me to death.

This is the tip of the iceberg, I'm afraid..

Jim- I mean no offense by this, but this seems to be a typical argument of yours, if you are against something- don't change things because it may not work the way you want it to. Guess what, it's not working now.

I think that Living Wills should have little legal force UNLESS
there is an accompanying signed statement by a
physician that she has explained the operative terms,
the relevant probabilities of recovery, and the arguments pro and
con. The kind of argument I just mentioned ought
to be part of the process. Of course physicians aren't
about to do this, because they don't know what
Living Wills mean either..

See, here you present a remedy and then say it won't work- why? It can be made to work, if we want it to.

This is a mess.

I completely agree with you there. Still, my feeling is I want to make the choice.

Again, I mean no offense in the above.

All the Best, Tom

I appreciate you mean no offense and I don't understand this.
As to the first point, I've suggested changes in the law
concerning 'clear and convincing evidence' that will
explicitly exempt casual remarks. In the political thread
I offered a law that i think will 'firm up' legislatively
the 'clear and convincing evidence' standard so
that it will at least amount to what it means on
a plain reading. This will include non-written
directions, too. I'm all for fixing this.

On the second point, the problem can't be fixed, IMO,
because standard Living Wills are too vague and
nebulous to mean much of anything. Operative
terms like 'terminal condition' 'PVS' typically
don't mean what signers think they do, and
often they have no clear meaning. Physicians
aren't going to sign these things, I don't think,
cause they don't want to be liable for
the consequeces.

I agree with you that there is a real possibility that
advance directives can be made to work, but
they're not going to be standard Living Wills.
That's why my paper gives other options entirely.

Cynthia, I'm afraid you've signed something meaningless
and possibly dangerous. Remember your husband may predecease
you or be incapacitated himself; as a matter of law your
will is collected on your way into any medical facility, where
it may be interpreted by people whose views about
'good quality of life' would alarm you.


In Clinical Ethics, Jonsen, Siegler, and Winslade observe:
The phrase "quality of life" is frequently heard in clinical discussions about ethical problems. Frequent use has given the phrase neither any precise meaning nor any definite application. It seems an attempt to put a value upon some feature, or collection of features, of human experience. As such it is highly subjective; yet the phrase is often used by someone other than the person who is living the life being evaluated.

There are safer and more effective ways to go about this,
IMO. My article 'Advance Directives, Autonomy and Unintended
Death' in Bioethics 94 details them. PLEASE do not let this
get into the hands of medical facilities before you are dying,
because they do not always discriminate between a
Living Will and a DNR order. You can be no-coded before
you are terminally ill or incompetent, without being told.
People have died this way, many years before they needed
to.

[jGilder]

After reading Jim's exlainations I'm left thinking the only way you can be sure to have your preferences carried out in the event of a situation like Terri Shaivo's is to have your wishes tatooed on your butt.

[Wanderer]

After reading Jim's exlainations I'm left thinking the only way you can be sure to have your preferences carried out in the event of a situation like Terri Shaivo's is to have your wishes tatooed on your butt.

http://news.bbc.co.uk/1/hi/health/2819149.stm

80 year old retired nurse has 'Do Not Resuscitate' tattooed on her chest.

[jim stone]

After reading Jim's exlainations I'm left thinking the only way you can be sure to have your preferences carried out in the event of a situation like Terri Shaivo's is to have your wishes tatooed on your butt.

A standard Living Will declaration would have met the
legal standard in FL--despite my concerns that people
typically don't understand what they're signing.
Courts are quite happy to let them be decisive.

If Michael had reported the following converstation:

Terri: 'I want to tell you something. I've been thinking
this over. If ever I'm alive but unconscious, like in PVS,
and I've been in it for awhile, and the doctors say
I probably won't recover, I want them to let me die.
Pull all the plugs, disconnect the tubes. Life like
that will have no meaning
to me.'

That would have done it.

Please remember that this is an odd case; most of them
never get to Court. It's only because there was a fight
that any of this happenend. Otherwise she would probably
have been disconnected in the hospital without a
legal review.

Concerning advance directives--my advice is this:

First have a proxy, indeed, have a list of proxies in case
the person at the top of the list predeceases or whatever.
Do not sign a living will. Go to a physican, take the
proxy, and write a list, in consultation with the physician,
that begins--'I want all treatments but these:

Then list as clearly as you can, in consultation with
the physician, what you do not want
and the conditions under which you do not want it.
Number the list. Have the physician sign as witness, if you can.

Write on the page: 'This is not to be given to any
medical facility, hospital, or nursing home before
I'm dying.'

The statement 'I want all treatments but these' is
meant to protect you if the thing does get into
the hands of a facility--because there is sometimes
a tendency to treat people with Living Wills
as 'people who want to die.'

[jim stone]

After reading Jim's exlainations I'm left thinking the only way you can be sure to have your preferences carried out in the event of a situation like Terri Shaivo's is to have your wishes tatooed on your butt.

http://news.bbc.co.uk/1/hi/health/2819149.stm

80 year old retired nurse has 'Do Not Resuscitate' tattooed on her chest.

Here's another about a retired nurse. Please read.

In an article in the magazine Nursing Spectrum, Diane Majka-Grandstrom, R.N. writes:
A retired nurse was admitted to the hospital for steroid therapy for multiple sclerosis. Aware of the Patient Self-Determination Act (PSDA), she brought along her living will. Her physician, upon reading it, wrote a do not resuscitate order on her chart.

If you find nothing unusual in this scenario, you may be one of many who confuse living wills with DNR orders. The nurse did, in fact, state in her living will that she did not want CPR or a long list of other treatments. However, she knew that the will would only go into effect if she became terminally ill and unable to communicate, or permanently unconscious. Multiple sclerosis is not a terminal condition. And the nurse was communicating quite well.

"Why do people confuse living wills with DNR orders?" Majka-Grandstrom asks. "As a result of the PSDA, health care professionals are informing consumers about their right to make advance directives, but the general public and health care professionals are both unclear or uninformed about the timing and process of advance directives."

This confusion can have lethal consequences. I quote from a recent letter by Phyllis J. Robb, of Fort Wayne, Indiana, to The American Medical Association News:
My mother, at 73 and in excellent health, entered the hospital for her second hip replacement. After six days, she left the hospital and entered a transitional care unit. On entry she was given a standard living will for her consideration. She signed it, not adding any special instructions; she did not take it seriously enough to even mention to us.

In our state, the living will takes effect only if the person is terminally ill and unable to communicate. It is a short simple form, and the language is clear. Regardless, a staff person wrote on mother's record "no code, patient's request." The family was not informed.

On the 11th day after surgery, mother suffered cardiac arrest due to an embolism. The staff did not call a doctor or attempt to treat her in any way; they did not wish to "go against her wishes." They stayed by her side for 20 minutes while she died. My reaction was shock and disbelief.

Robb, formerly a strong supporter of living wills, concludes that she would not sign a living will or allow information about her wishes to be entered into a facility's records. She writes: "Now I know that, to many professionals, a patient who has a living will 'wants to die.' All the fine points elude them."