Disability Activists Call for Moratorium on Starvation and Dehydration

[deek]

For more information: Diane Coleman or Stephen Drake [phone]

Feb. 14, 2005 -- Disability activists have called for a nationwide moratorium on the dehydration and starvation of people alleged to be in "persistent vegetative state." This would apply to individuals who do not have an advance directive or durable power of attorney.

The call for a moratorium is a reaction to the newly-published report indicating high levels of brain activity in people thought to be in "minimally conscious state (MCS)." The study, published in the February issue of Neurology, discovered evidence that these individuals may hear and understand much of what is going on around them, but are unable to respond.

The study drew a distinction between MCS and Persistent Vegetative State (PVS), but the distinction is not a reliable one. In a New York Times article, Dr. Joseph Fins mentioned research indicating a'30% misdiagnosis rate of PVS, indicating that nearly a third of persons diagnosed in PVS are actually in "minimally conscious state." Fins is chief of the medical ethics division of New York Presbyterian Hospital-Weill Cornell Medical Center.

With the exception of oblique references to Terri Schiavo, current coverage of the study and its implications dance around the most important issues regarding this study. Namely, thousands of people around this country with labels of both MCS and PVS are being starved and dehydrated, often without an advance directive indicating their wishes, or a durable power of attorney appointing a substitute decision-maker they chose for themselves.

"Given the current research regarding brain activity and misdiagnosis, it's a virtual certainty that countless people have been helpless to prevent their own deaths through starvation and dehydration," says Stephen Drake, research analyst for Not Dead Yet, a national disability rights group opposed to legalization of assisted suicide and euthanasia. "There's an analogy to DNA evidence and the death penalty. Here in Illinois, the staggering numbers of innocent and wrongly convicted people on Death Row resulted in a moratorium on the death penalty. Whether you agreed with the death penalty or not, everyone was forced to find ways to make sure no innocent person ended up on Death Row again. The same amount of concern should apply to medically induced deaths, in which the numbers far exceed the number of convicted people executed each year."

http://www.notdeadyet.org/docs/moratoriumPR021405.html

[Erika]

1. MRI's are extremely helpful

They can expose what parts of the brain are left and which parts are functioning.

As with Terri, the cerebral cortex is gone as are any cognitive abilities. In my humble opinion, we need to know when to quit playing God in keeping people/shells functioning.

[deek]

2. Cerebral cortex

is only one part of the brain.

Do not presume "as are any cognitive abilites".

This is not about keeping shells functioning.

This is about allowing people with significant brain damage to be recognized as people.

[Sugarbleus]

3. Thank you...

As I said in my other post, I heard a pro life advocate for Terri speak to her abilities regardless of what some doctors say. See, one can get doctors from one side of the issue to say what they want them to say/see..and get completely different determinations from another set of physcians.

Now, to the case of starvation and dehydration techniques. If a person is truly dying and/or "gone" I still cringe at the thought of STARVING THEM. HOW ABSOLUTELY BARBARIC!!!!!!!

I cannot speak to the issue you brought up in your OP; I have to research it first, but I just had to add my two cents about starvation/dehydration. God Almighty, what a diabolical way to end a person's life!! Death row prisoners get a better deal. That's all I can say on this issue at this time.

Best, SB

[BoogDoc7]

4. As the...

Resident right-winger, I'm against the starvation and dehydration (unless specified by the patient, and questioned even then). I think that the line has to be drawn somewhere else (probably artificially keeping the heart/lungs going when they would naturally fail, barring other known brain function). They are truly people.

Probably the best discussion to have is the where and whens of when death should and does take place in this manner...

[bettyellen]

13. "specified by patient.........and questioned even then........"

how do you propose would happen? you might as well toss their living will in the garbage.
i don't think so.

[Mairead]

15. "Cerebral cortex is only one part of the brain"

Yes, the part that makes us a higher-order organism. Without it, we are no longer entitled, except perhaps by courtesy--or religious mythology--to be treated better than the lower-order creatures we exploit or uncaringly kill every single day.

[pop goes the weasel]

16. speaking as an atheist

I think that we do ourselves psychological harm by mistreating the bodies of the dead (obviously no longer alive) and those unable to speak for themselves, for whatever reason. Our rational thought process may be able to make fine distinctions between humans based on medical evidence, but our emotional processes do not parse out humanity that way. I find it very disturbing that there have been so many voices on DU calling Terri Schiavo dead, when clearly, no matter what mental state she has, she is still alive. When her death certificate is signed it will read 2005, not 1990. To declare people who are still alive, though poorly functioning, dead is a psychological move of distancing, of dehumanizing.

[Mairead]

17. Speaking as an agnostic, I find it interesting that it seems to be

the church-going, overtly religious people who want to put off final death as long as possible, by any means possible. You'd think it would be the other way around, wouldn't you?

I agree with you that cheapening life is not a good idea, psychologically. But exalting it beyond reason is at least as bad.

Someone in Ms Schiavo's position has lost her position on the evolutionary scale. Her body is still almost completely functioning (the lack of the ability to swallow is fairly important) but there is no 'Theresa Schindler Schiavo' there anymore. That entity, and her person-nature, died long ago. Operating her body is something that resembles, cognitively, a sort of disabled fish or snake. Disabled by the fact that fish and snakes have a complete, hardwired behavioral repertoire to draw upon, and what's left in her skull hasn't. Actually, it might even be worse than that; what's certain is that her body doesn't have as much cognitive ability as even a bird does, now. And her body's cognitive capability is far below that of the mice who are routinely sacrificed for trivial gains in biochemical knowledge.

Unless we go all over mystical and impute to our genetic map itself a priori supernormal worth, or go religious and claim there's a 'soul' in there even after the owner is gone, then I think we betray our heritage with all this hoo-hah and theater.

[pop goes the weasel]

18. nothing is certain

about what we know of human awareness in a case like Schiavo's. To pretend otherwise is pure artifice. She isn't dead, as of this writing. And she isn't able-bodied--that much I think we can all agree on. What's left but disability? Extreme disability, to be sure, but still disability. That she may not have the cognitive capacity of a lab mouse doesn't trouble me nearly as much as your (and others) apparent readiness to de-humanize her. And that has nothing to do with Terri Schiavo and everything to do with the need to maintain a humane, conscientious society. As long as so many people with power approach disability and end-of-life issues from a Malthusian economic perspective, we need to be extremely cautious in how we decide a life is over. Since we each get but the one life, I think it best to not shuffle anyone off in haste.

(If I thought for one moment that Terri Schiavo was suffering as a result of living, and that the only way to ease her suffering was death, then I would agree that she should have recourse to death. But I don't see any evidence of suffering on her part.)

When you talk of "exalting life beyond all reason," do you mean human life in general, Terri Schiavo's life in particular, or some subset in between? What do you mean by "exalting life beyond all reason," anyway? What is the reasonable standard? And who makes that decision? You earlier said that we all make that standard, but clearly, we all do not agree on that standard or there would be no present argument. Reasonable people, even compassionate people, can have different views. This is why the disability rights movement thinks that Sen. Harkin's effort to create a federal review for contested cases is good. I don't think it is in anyway a betrayal of federalist principles to have such review of civil rights cases, and cases in which someone is going to be killed are always civil rights cases. (I know you will object to my using "killed," but let's be straight forward here. As long as Terri Schiavo was getting food and water, she was in no danger of dying. For her to die, she has to be deprived in an active way. Actively hastening a death is called "killing.")

One other thing, and it is personal to me but a pretty common experience among people with disabilities, is the great fear of the able-bodied about disability. I am not severely disabled. I repeat, NOT. My condition varies from day to day, hour to hour. Most people most of the time don't realize I am really truly disabled until I fall down in front of them. But even I have been told, "I couldn't live like that." Like me. Hey, it wouldn't have been my first choice either, but come one, this is far from a horrible life. And being the only one I've got, I'm determined to make the best of it. Now, with that particular experience, I have grown inclined to think that people usually underestimate the value of other people's lives. I find that my personal perspective is widely shared by others with disabilities, though not all. And so, judging from my own perspective, I'm inclined to give Terri Schiavo's life the benefit of the doubt. Maybe it has value for her. I don't know. Even Michael Schiavo has admitted that he doesn't know.

Finally, Mairead, I want to emphasize above all else how much I appreciate your willingness to discuss this. It has been hard for people on all sides of the issue to maintain respect for others with different opinions. I think you are someone who really tries to maintain your respect for others.

[IndianaGreen]

19. Someone in Ms Schiavo's position has lost her position on the evolutionary

Someone in Ms Schiavo's position has lost her position on the evolutionary scale.

Aliens land on Earth tomorrow and begin harvesting lower life forms, particularly homo sapiens, for food. They also begin conducting experiments on the homo sapiens to determine their position on the evolutionary scale and to develop better cosmetics for the aliens.

You are no longer part of the self-appointed masters of Creation. You are now shit out of luck, specimen# 1,764,357,841!

Long Live Mizar 3!

[DemBones DemBones]

5. I agree completely with this. No one should be put to death because

it's convenient for someone else.

When people refuse treatment for themselves, they can control their intake of food, water, drugs. My mother-in-law died of ALS (Lou Gehrig's disease) and she chose not to have a feeding tube to prolong her life by a few weeks. She chose to enjoy eating as long as she could, though as time went by she was getting less and less nutrition since eating was increasingly difficult for her. She stuck to her decision against a feeding tube, though.

But I always smile to remember her sucking on a Goo Goo Cluster (a Southern candy involving caramel, chocolate, pecans) a week or so before her death. We had to make quite a few emergency runs to buy Goo Goos late at night for her -- she had eaten properly for decades and figured to hell with that when she knew she was dying. She did drink the liquid meals and try to eat what healthy foods she could manage, too, but she enjoyed her candy.

[u4ic]

6. The MCS is very confusing

as there is already an MCS 'diagnosis'...Multiple Chemical Sensitivity.

That being said, I think it is cruel and inhumane to starve people to death. I can see both sides of this case, but I find it a bit disturbing that some want to let her go because she is not functioning as a 'normal person'. I realize that this is with the best of intentions and not with malice, but we are all valuable human beings, regardless of ability.

[undergroundpanther]

7. Criminals get more kindness

They get lethal injection.
Why do we have to starve people like Terry why not give them an overdose of barbiturates? And let them die peacefully without pain?

Lastly why is it the living people who cannot respond in a way "normals" recognize always the ones preyed upon to be killed by the utilitarian?
The suffering of unwanted fetuses with 3 cells,(morning after pills) are given consideration in the womb, but once you are born you are on your own..If you get disabled and you aren't a fetus,watch out,you are now a useless eater.

[Bariztr]

8. No they don't

As a criminal defense lawyer I can tell you that no criminal gets his/her case heard by 19 different judges over a ten year period. No criminal gets the level of scrutiny of their cases that Terry has. No criminal is missing a cerbral cortex when they are given the lethal injection. They know full well they are going to be killed.

I fully agree that in cases such as this there is absolutely no reason to give them a way of passing that is quick and without pain. Unfortunately that is not going to happen. So this chosen method, which has been and will be repeated by others in quite hospital rooms, will continue until we as a society grow up.

[Sugarbleus]

10. We don't execute the mentally retarded??????????

As a person who has family members that have spent significant time in Prisons...... we do understand that the injections they give to DRIs aren't as pain free even, as they could be. Matter of fact, I don't believe in the death penalty period.

I too am disgusted with the level of interference by the media, the husband, and the courts on this matter.

What we the disabled are trying to say is that we don't want a precedent set for offing people who can still breath, whose hearts are still beating, and whose brains are still awake--not flat lined (in which case the patient would be a prime organ donor then)--and for people whose families WANT TO CARE FOR THEM.

As it is, the poor with disabilities are being treated as "baggage/a burden" in the healthcare system and elsewhere, more often than not. That look in some doctors faces, the public's faces that says, Gee, this guy is a "useless eater" why not just do as little as possible for him/her, "Maybe he's better off dead" is frightening for the patient and the extended families.

[Crandor]

9. She's not functioning *at all*

her brain is completely destroyed now, any movements are just involuntary reflexes.

[LisaL]

14. Her brain is not completely destroyed. She is not brain dead.

If he was brain dead, she would be dead, because brain dead people can not breathe on their own. If her brain was completely destroyed, she would be dead as well. But she is not dead, because her brain stem functions.

[Name removed]

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[filet mignon]

12. Deek

can you instant message me? (aol instant messaging)