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Sunday, March 20, 2005

Never Again, Redux

I could do nothing but write about Terri's predicament and the philosophy that has created it. I could write in pure hysteria about reading comments that husbands have the right to withdraw even food and water from their disabled wives due to the burden the husbands carry (some of which, btw, I have read on Christian websites). I could observe that I find it amazing that women's rights organizations don't speak up to combat such a position.

I will suggest that you go read Sigmund Carl and Alfred's post on this subject. He lists an article by a rabbi whom I often read, and links to this post by My Vast Right Wing Conspiracy. This post contains links and quotes from a series of articles by Nat Hentoff of the Village Voice on the subject. I read Nat Hentoff often. I don't always agree with him, but I think he is a man who maintains an individual conscience and speaks it, whether his views are popular or not. Hentoff addresses the shoddy reporting by the press here. Here Hentoff discusses real physical evidence that Terri may have been abused by her husband. Not included in this article are statements by coworkers at the time corroborating that assumption. In other words, it is very possible that the man asserting Terri's desires might be a wife beater. In fact, the medical record does not support the contention that Terri had a heart attack. Here Hentoff looks at the historical parallels:
But there has been an American revival of eugenics in certain elite circles. A few years ago, an archconservative who had talked with some of the present-day, would-be purifiers of the American stock told me they were delighted at the deaths from AIDS of homosexuals.

But to protect the disabled from "mercy" killings, as well as eugenicists, another movement was forming here. Not long before he died, Dr. Alexander read an article in the April 12, 1984, New England Journal of Medicine by 10 physicians—part of the growing "death with dignity" brigade. They were from such prestigious medical schools as Harvard, Johns Hopkins, and the University of Virginia. These distinguished healers wrote that when a patient was in a "persistent vegetative state," it was "morally justifiable" to "withhold antibiotics and artificial nutrition (feeding tubes) and hydration, as well as other forms of life-sustaining treatment, allowing the patient to die." They ignored the finding that not all persistent vegetative states are permanent.

After reading the article, Dr. Alexander said to a friend: "It is much like Germany in the '20s and '30s. The barriers against killing are coming down."
Here Hentoff discusses the growing legality of denying treatment (a.k.a. food and water) to those who are severely handicapped. He quotes Nancy Valko:
"But," Nancy Valko emphasizes, "with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and 'quality of life' has become the overriding consideration. Over time, the ethical question, 'what is right?' became 'who decides?—which now has devolved into 'what is legally allowed?' "

In the aforementioned November 4 Philadelphia Inquirer story, Stacey Burling reported what physicians and bioethicists consider a worrisome obstacle to expanding "what is legally allowed."

"Hospital leaders [around the country] fear they would lose a lawsuit if they denied care demanded by a family." These officials and bioethicists want more case law to enable them to end lives they consider "futile."
See this account of a woman who was saved from Terri's fate only by the intervention of nurses who taught her to communicate by inking her fingers and holding up a clipboard so that she could spell out letters. Her husband advocated pulling the plug on her ventilator and feeding tube. She could not speak, and when she tried to move to protest in conferences as they stood around her bed the doctors declared she was having "seizures" and ordered her sedated. No one believed the nurses either, until she, in the presence of others, spelled out "Divorce You" on the clipboard in response to her husband's query as to what she wanted:
But, the nursing staff began to believe I was really and truly with them.

One, in particular, starting bringing in a clipboard and a broken pen when she talked to me. She would put ink on my fingers, the clipboard under my right hand and then ask me yes and no questions in the beginning.

With her I secretly progressed to answering in sentence fragments. However, by doctor's orders she was not allowed to document in my file what she was doing and that I was giving meaningful responses.

But...she did save my inky answer sheets and recorded the questions she asked. She got into a lot of trouble for that.

Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.
And so she was on trial for her life, and fully aware of it:
At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.

The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.

To prove I could not communicate, he then put ink on my fingers and asked while laughing, "There isn't anything you want to tell us, is there?"

In response I spelled out, "D-I-V-O-R-C-E Y-O-U!" The laughter got very nervous then. The doctors called for medication because I was obviously having a seizure.

Then the nurse who used the board first with me said, "Let me try" and "What do you need to tell us today?"

I spelled out, "D-I-V-O-R-C-E H-I-M!!!!"
Then read this lawyer's account of Terri's reaction to the news that her feeding tube would once again be withdrawn. Read Dr. Hammesfahr's medical evaluation - he was hired by one of the appeals courts. Terri tries to speak, learns, tries to move, and according to accounts tries to avoid her fate. She is partially blind. An eye examination has been denied her, so of course this limits her ability to "track" with her eyes..

Over more than a decade now, various independent witnesses have been consistent as to what letters Terri can and cannot say. She cannot say "t" or "n". Say these letters yourself - they involve moving the very tip of your tongue. She can make sounds further back in her throat. The staggering consistency of these individual accounts alone is reason enough to make them credible.

I am grieved to find what we have become and my conscience will not let me rest. Read about Nancy Cruzan and Dr. Cranford's testimony in her case. Nancy was starved to death. Dr. Cranford testified that Terri was in a persistent vegetative state. Read about other cases in which he confidently gave the same judgement:
In the cases of Paul Brophy, Nancy Jobes, Nancy Cruzan, and Christine Busalucci, Cranford was the doctor behind the efforts to end their lives. Each of these people was brain-damaged but not dying; nonetheless, he advocated death for all, by dehydration and starvation. Nancy Cruzan did not even require a feeding tube: She could be spoon-fed. But Cranford advocated denying even that, saying that even spoon-feeding constituted “medical treatment” that could be licitly withdrawn.

In cases where other doctors don’t see it, Dr. Cranford seems to have a knack for finding PVS. Cranford also diagnosed Robert Wendland as PVS. He did so in spite of the fact that Wendland could pick up specifically colored pegs or blocks and hand them to a therapy assistant on request. He did so in spite of the fact that Wendland could operate and maneuver an ordinary wheelchair with his left hand and foot, and an electric wheelchair with a joystick, of the kind that many disabled persons (most famously Dr. Stephen Hawking) use. Dr. Cranford dismissed these abilities as meaningless. Fortunately for Wendland, the California supreme court was not persuaded by Cranford’s assessment.
But Terri is not in California; Terri is in Florida. In Florida, even a talking person who is incompetent can be denied food and water while in a medical facility, even if she is begging for it. Read this nurse's account. As in Terri's case, nurses were feeding the woman by mouth and were threatened with legal action for doing so. Read the laws, with links to the Florida constitution and statutes. How many more people have ended their lives in Florida in this manner?

I don't question the procedural legality of what has been done. I just don't believe the laws and the way they are being applied are morally or ethically correct. I don't believe they are constitutional. Nor do I believe that most people in Florida know that a medical surrogate can rule that you must not be fed or given water by mouth, even if you are awake and begging and pleading for it. I don't believe that a court or anyone else has the right to deny a person who is not dying food and water unless the person has previously stated that to be his or her wish. If you have, well and good.

I believe those who are defending all this as "Terri's choice" are pushing their own agenda. I believe that many people in this country feel that people who have severe incurable medical conditions should die, and that they should want to die, and that if they don't want to die they are incompetent, irrational and irresponsible. I realize that we cannot offer all possible medical care to every person, but I find it obscene that we should pay for some to have organ transplants and deny others food and water as "futile care". This is discrimination under the law in the rankest and purest form our country has ever yet dreamed up.

The position that Judge Greer has consistently taken is that he is entitled to ignore all medical evidence that does not agree with his decision that Terri is in a persistent vegetative state. All of it. Read the excerpt from one of his rulings here. There have been many cases of an emergence from either a coma or a persistent vegetative state, but there will be none in Judge Greer's court it seems. He has explicitly stated that any medical evidence that is presented by those who do not agree that Terri is in a persistent vegetative state is "would be totally flawed".

Terri is almost certainly dying. Judge Greer also ruled that her feeding valve should be physically removed instead of simply removing the tube (it is only inserted for feeding). She is reported to be running a high fever, indicating an infection. Without water she must be suffering greatly and she will die rapidly. If you believe, pray to ease her suffering.

But for me, this does not end with Terri's death. The 'kill the useless" movement has earned my lasting enemity. I will lobby Congress to hold hearings and review the evidence. I will ask Congress to interview the doctors who examined her, to allow the disabled community to testify. I will lobby Congress for additional federal bills to defend the helpless. I will not ever forget. May God have mercy on Terri and be with her in her agony, may God ease the suffering of her family, and may God have mercy on you who advocate the willful killing of the helpless. You will need God's mercy if you find yourself dependent upon the good graces of others when you are helpless in the nation you have created.

At the very least, MoM, I hope this motivates people to make out a living will so they will never leave their care up to chance and a judge.
I hope so, Esther. Who would want your spouse, parents or child to have to make such terribly difficult decisions alone?

But then she was in her twenties, and it is hard to think about this in your twenties. Still, it's a kindness, a comfort and a protection for those close to you.
Have you read the decision of the court in this case? Pretty hard to disagree with it. The judge all but called the two doctors who testified that Terri Schiavo could recover quacks and liars--and he gave them every opportunity to present credible evidence, which they couldn't.

One of them runs a "cash-upfront-only" clinic for whiplash patients, and had no documentation of any kind to support his testimony.

I read the decision and thought the judge was more than fair. It's a sad case but it really seems like a lot of honest effort went into the decision.

Check it out. This blog has two great posts on it:

I know that you feel strongly about this issue and that it is easy to dismiss me as a heartless liberal, but I would encourage you to stop by at my blog, for some different thoughts on the case, how it relates to the Sun Hudson case and what it says about government involvement in medical issues.
I would never consider you a heartless liberal. I have already been to your blog and left you a long article.

I can't agree with the implied equivalence of removing ventilation vs denying food and water to some one, even by spoon feeding. That is equivalent, in my eyes, to not only removing Sun from the ventilator but putting a bag over his head if he did not stop breathing on his own.

I'll tell you one thing though - I think we have a major battle coming in this country over social justice. As always, the losers will be the poor, the old and the helpless. I can understand that we literally can't pay for intensive medical care for everyone. I can't go the step further and say that the chronically disabled who require only nursing home care should be taken off the balance sheet by withholding food and water. If an individual chooses it knowingly, it's fine with me.

We are about to face a fiscal crisis on the scale of the Great Depression. If I don't speak now it will be too late in ten years.
I can't go the step further and say that the chronically disabled who require only nursing home care should be taken off the balance sheet by withholding food and water.

But should those in "a persistent or permanent vegetative state" be forced to stay on a feeding tube because relatives--who aren't legal next of kin--decide they prefer it?

Even if they lose court case after court case about it? Even if all the credible medical evidence is that she has no hope of recovery? Even if the credible evidence indicates that she really doesn't respond to them they way they claim?

Why should anyone be forced to live like that?

Would YOU want to be remembered like that?
It's not a very clear diagnosis, is it? I keep reading all these studies saying that new brain imaging techniqes are showing us that a lot of people we have said aren't conscious really are. I looked at that study saying that 43% of those diagnosed as being PVS really weren't, because they emerged from that state.

Maybe we are trying to force the medical profession to be more accurate than it possibly can be. I've met several people who were paralyzed and were told they would never walk again who did learn to walk again. Interestingly, it wasn't due to new medical treatments - both of them just cover No diagnosis is a hundred percent certain.

Whether I would want to be remembered like that is not the question. The question is what her wishes were. It's a choice a person must make for his- or herself, I think. To assume that someone else would want to die when I would or that someone else would want to live when I would is extremely arrogant and I know for a fact it's not true.

I have had relatives rail at me on and on for not seeking more aggressive treatment for a condition that I have, and I have seen other people subjected to the same sort of thing. To be honest, I would consider accepting a major organ transplant to be immoral - but that doesn't mean I haven't filled out my organ donor card. To each his own.

The other question here is the burden upon the state. Obviously, the state has a pressing interest in favor of people deciding that they want to die when they become acutely disabled. With the upcoming Medicare/Medicaid budgetary crisis, I am afraid it will be all too easy for us to decide what other people's wishes are, and those decisions will be made in favor of offing Granny and xing out that "vegetable" in the bed over there, because hey, they wouldn't want to live anyway.

But when those people are begging for food and water, is it so easy to be sure that you have made the best choice for that person? Should we decide that if they are able to beg verbally that they should be fed, when someone who might really have more cognitive powers will not be?

These are difficult ethical dilemmas. I don't want to live in a world in which a passerby has no right to give water and food to someone begging for it. If this becomes SOP, what kind of people will we have working in nursing homes? There is a huge difference between not putting a feeding tube in a person who is dying rapidly and not feeding someone in order to cause their death.
related stuff. If you are interested come and check it out if you get time.
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