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Saturday, April 29, 2006

Andrea Clark And Futile Care Laws

Andrea Clark is a patient at St Luke's Episcopal Hospital in Texas. She is very ill (endocarditis) and on a ventilator and dialysis. The hospital's bioethics committee voted to invoke the "futile care" law and remove her from the ventilator and dialysis, which action will certainly kill her. Her family is desperately fighting to save her. The latest news is that she is doing better, and has a reprieve until Tuesday:
Andrea is quite ill still, but there seem to be signs that she's on a path to getting at least slightly better. Her white cell count is normal for the second day in a row, and that hasn't been true in a long time. Her blood pressure is still too low, a sign that her heart is pretty weak from the infection and all, but her meds have been lowered, which is a good sign. Her lungs are also finally clear for the first time in months. In other words, she's still very ill and in the intensive care unit but doing much better than she was doing even just three days ago.

There's a new doctor in the mix now who is reviewing her case and helping the family know what's going on and how to deal with the hospital. He's of the opinion that Andrea isn't out of the woods yet but doing better than had been reported.
Democratic Underground threads: One, Two, Three, Four. Previously Andrea's sister, Melanie, had reported that Andrea had been sedated to the point of unconsciousness. One wonders if all the media attention hasn't produced a few treatment modifications. If you have faith, you might believe that all those praying for her did. Then there is the very real possibility that she is turning the corner, and may continue to improve.

Beth of My Vast Right Wing Conspiracy has been very active in the battle. For her pains she is now banned from DU. I knew this would happen - the right-to-kill crowd is pretty strident over there and are probably appalled to see a strong joint left-right coalition forming on this issue. Beth has a superb contact list available here, and links to other sources here.

Hyscience points out the irony that a supposedly faith-based hospital would do this. Weeell, there's faith and there's faith; I have previously written about why I abandoned the Episcopal Church. Nonetheless, even the Catholic church maintains that one need not take extraordinary measures to prolong the life of a dying person. No faith requires this.

But is Andrea Clark dying? That is the question with an uncertain answer, unless the bioethics committee renders it certain, and it is the problem with futile care laws. As(edited to fix name) Wesley J. Smith notes:
For years I have been warning that bioethicists are getting their ducks in a row to permit them to refuse wanted life sustaining treatment that is removed because it keeps the patient alive, not because it doesn't provide medical benefit. These are value judgments, not medical determinations.
Note that the treatment is apparently being removed because it works, not because it doesn't--which means, in effect, that the hospital ethics committee has declared the patient's life to be futile.
And expensive. Let us not forget expensive! This is all about money, isn't it? I doubt that human beings can handle such distinctions made in such a way ethically. Maybe this is something we should just concede. It is true that some treatments are very unlikely to help some patients - but it is also true that when you start to withdraw life-sustaining treatments because you have made the judgment that a particular life is no longer worthy of them that you have stepped into dangerous territory.

Andrea Clark's case is not about choice. According to her family, she had clearly expressed the wish that she wanted to continue these treatments. Andrea Clark's case is about who makes the decision to withdraw treatment, and when, and for what reasons. Andrea Clark's case may be about whether hospitals are deliberately oversedating patients they want to remove, since heavy sedation for a patient with breathing problems and heart problems can definitely kill the patient, or it may not, because in some cases sedating a patient allows enough rest for the patient to improve.

The chronicle of the case in the Democratic Underground threads is interesting, because it brings up questions of the varying opinions of doctors and the role of the insurance company. However, if you read them I would like to make a few points to offset some of the flat untruths in the threads:

Terri Schiavo was never brain dead until she was killed. There was a real question of whether she was in a PVS state, and the autopsy could not confirm whether she was or she wasn't. The doctors in the Andrea Clark case are unlikely to be the villains; there is so much unknown in medicine that certainty often only emerges from autopsies. Most states have some sort of futile care laws or standards. Texas did not come up with this concept on its own, and George Bush vetoed the first draft of the Texas futile care law and was active in negotiating for a longer grace period. In many cases, courts have been the leaders in instituting "futile care" standards. Take, for example, this Massachusetts ruling in 1995:
Miss Gilgunn's lawyers, led by Donald E. McNamee of Boston, said the case was about how society treated its most vulnerable members, people like Mrs. Gilgunn who could not speak for themselves.

Frank E. Reardon, a lawyer for the hospital, countered that the case was about the limits to patients' rights, and whether doctors and hospitals should be required to provide care that they believe is futile and only prolongs the process of dying.

"I guess the real point," Mr. Reardon said in a telephone interview yesterday, "is that in very rare instances, particularly in situations at the end of life, where medicine simply cannot hold off death, that physicians can't be required to do things that they feel would be inappropriate and harmful to the patient."
Dr. Sherwood Gorbach, chairman of the ethics committee at New England Medical Center in Boston, said the ruling was "enormously important." He said that virtually every week doctors at his hospital were confronted with families who demanded care that doctors thought was futile.

"We have all kinds of permutations of this main theme -- the conflict between doctors wanting to do what is best for their patients and not provide futile care and prolong suffering when families want to carry on," Dr. Gorbach said.
Note the contradiction in the article. The "very rare cases" according to the lawyer are encountered "virtually every week" according to the doctor. What was true in Massachusetts in 1995 is true in Texas in 2006; Andrea Clark's situation may well have a direct effect on the life of someone in your family. All socialist health care systems do ration treatment in this way, and the more socialist a health care system gets the more quickly the plug is pulled on patients who are very ill and especially on those who are expected to be chronically ill. "Futile care" standards are about deciding who is worthy of life, and bioethics committees make decisions based on cost and their assumptions about "quality of life" for the patient. The Schiavo case was not about choice and this one isn't either. The Schiavo case was about declaring disabled humans unworthy of life. So is this one.

Isn't it interesting that as anti-Semitism rises in Europe and the US, the Lebensunwertig crowd comes snarling back out of their skull-filled closet? I urge you to read this:
That the Holocaust proceeded from a debate about the limits of law may surprise those who, lead perhaps by the popular media, take the Holocaust as an expression of mindless hatred. Many may be surprised as well to discover -- as Raul Hilberg, the dean of Holocaust studies, seeks always to remind us -- that the Holocaust was a surprise to all involved, victims, bystanders and perpetrators alike (indeed, Hilberg reports that Heydrich himself was "ashen-faced" on first being informed that the Final Solution meant the physical destruction of European Jewry). However, conceiving of the Holocaust in any other fashion -- as an orgy of murder rather than as an act of state framed by the discourses of civilized life or as a vision pursued and planned rather than as a sequence of events made possible, but not inevitable, by certain moral and political commitments -- shelters us from the Holocaust's horrific historical and moral burden: its revelation, as human possibilities, of a new form of death, Vernichtung, death as manufacture, desacralized and meaningless, nothing, and of a new form of being, Lebensunwertig, life unworthy of life, meaningless even to itself, an insult to life. It is its invention of these -- this understanding of morality and this form of being -- that will forever burden Germany with shame and guilt, and the rest of the world with an irreparable harm, that insidious mistrust which ever since shrouds our sense and experience of life.
The points here are true. The Jews could not have been killed as they were if the theory that some life was unworthy had not taken hold in Germany. The first organized effort at mass murder, which coordinated medical committees and hospitals, were gassings, murder by starvation and/or dehydration and killing at birth of disabled people. Now we are doing the same thing, and it will have the same result - the same tragedy under a different name.

I have come to terms with the idea that, as a person with a pretty severe medical condition, I must decide to limit the type of medical treatment I seek for myself. As a free person in a free nation I adamantly refuse to participate in any system in which I or others make this decision, by default or explicitly, for any other person. That is a state of affairs that no sane nation can afford itself. If you have accepted the idea that medical care and even simple food and water for the disabled is too expensive, stop and consider how expensive it is to go down the path of the Holocaust and the inevitable, self-inflicted destruction of the society which chooses such a path.

Hospitals are no longer havens for curing and caring; they are money-making businesses. Curing must be quick and caring must be incidental or there is not as much money to be made via turnover.

Which is no doubt what Florence Nightingale is doing in her grave.

As long as hospital administrators are first and foremost businesspeople who are at the beck and call of insurance companies, we can expect more and more of this kind of situation, ie allowing a patient sufficient time in which to get better is financially impractical; therefore, shut them off, move them out, and get someone else in the bed for whom we can get some fast and more economical results.

"Useless eater" has suddenly become a word associated with the present, not necessarily with the horrific "this could NEVER happen again!!!!" past.

I honestly do not know how some people can sleep at night after making some of the decisions they make during the day. I guess if concentration camp commandants could do it, so can a hospital administrator. I'm racking my brain now. . . . what's the difference again?
Mamacita, it's worth pointing out that St Luke's is a non-profit.

The love of money (individual self-seeking) may be the root of all evil, but our justifications for this sort of thing seem to be rooted in our need to deny the reality of tragedy and our helplessness in some cases in the face of that tragedy.

To me, especially in light of the Haleigh Poutre case, it seems as if we as a society feel almost offended by those we cannot make whole and respond by declaring them legally dead to us.

I can't for the life of me figure out what the difference is between this mentality and the mentality that drove Nazi Germany. It may be there is none.

It's true that there are some medical treatments that we probably cannot afford to extend to all people. Yet a system which is paying for Viagra for millions of people cannot truly plead a lack of money as a justification for making the decision to withdraw treatment in Andrea Clark's case. Instead, we are making such decisions on the basis of how normal we believe people are.

We'll be killing millions of disabled people within fifteen years if we stay on this path. They are already doing that in the UK and the Netherlands. If a child has a bad lung problem, for example, a hospital won't want to treat bronchitis with antibiotics, but with lethal doses of a sedative.
"non-profit" doesn't necessarily mean not money-motivated. Even if an institution is run by a saint, it still must be concerned with generating enough income to stay in operation.

And there is little evidence that nonprofits tend to be run by saints. Many of them pay their executives extremely well...indeed, one could snarkily point out that the main thing about a nonprofit is that there are no pesky shareholders with whom the money must be shared...
Just a short correcction. Your quote on bio-ethicists and futiles lives is from Wesley Smith, not Wesley Clark.
Much appreciated, LTC. I'll fix it.

David, of course you are right about non-profits. There have been some pretty big scandals about insiders misusing non-profit funds.

Considering the dependency upon insurance funding, I'm not sure that non-profit hospitals operate in a different economic environment than for-profits.
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