Respectful Insolence

An update on Andrea Clarke

In the comments of my post regarding Andrea Clarke, the woman whom a Texas hospital is trying to pull the plug on because its bioethics committee has declared her care “futile” despite the fact that she is not comatose and is able to communicate her wishes comes an update posted yesterday to the Democratic Underground discussion boards:

I don’t really know how to begin this post. Everything is so different now, than it was before. It’s like everyone moved the pieces on the chessboard, while I was out of the room.

First the good news: Andrea’s white blood cell count is down, for the fourth day in a row. This signals the level of infection that she has in the repaired valve of her heart.

More good news: Andrea was on two “pressor” medications. These are drugs that increase the blood pressure, so that the organs will receive enough blood. They are very, very hard on the body, though. Andrea has now been taken off of these medications, not because it is a part of withdrawing treatment, but because she no longer needs them.

Okay, I tricked you! There’s all good news, no bad news! (I’m sorry; I’m just so happy!) The futility process has been halted. Andrea has a new doctor and the medical futility process has stopped right there, with him! He has lowered (halved) her pain medication, which she doesn’t seem to need as much of now (none of us in our family ever thought she needed as much as they were giving her, but the futility morons pour on the pain meds right before unplugging a patient that is cognizant–we have learned that this is part of the “process”).

This new doctor told us to make no mistake about it, our sister is in “serious” condition, but that doesn’t mean, he said, that she can’t get much better!

You know, my sister, who was one of the first patients ever to be operated on using the then brand new technology of the heart-lung machine, made history when she was five years old. And, having been declared “futile,” and having had her family and the rest of this country fight that death sentence…..well, she might make history again, showing that this law gives doctors too much power over people’s lives, if she continues to recover.

Knowing Andrea as I do; knowing her iron will to live, I’m putting my bets on her.

It just goes to show that we have to be very careful about how we go about declaring patients’ care “futile.” Clarke is without doubt in bad shape according to this update, but there is also little doubt that she is showing significant signs of improvement. Whether this turns out to be just blip on a downward course remains to be seen, but it would appear that there are far more reasons for optimism than the hospital has let on. It also makes it me more suspicious than ever that this was more about money than sparing Andrea Clarke further suffering. Clarke is not out of the woods yet, and apparently the hospital is planning another meeting of its ethics committee.

Sometimes in such cases it’s helpful to bring in fresh blood, so to speak, to look at the case again objectively. Lacking all the baggage that comes from caring for such a patient for a long time, a different physician may see things that can be done and may not see the case as futile. It’s human nature and all too easy for a physician who has cared for months for a patient who doesn’t appear to be getting any better to fall into the trap of losing hope and asking himself why he’s continuing to “torture” a patient who doesn’t appear to be getting better. It’s all too easy to lose objectivity when you have to face the same patient day in and day out over several months on a ventilator suffering multiple setbacks.

Comments

  1. #1 epador
    May 3, 2006

    Been there, done that, have the T-shirt. But what is the “ethics” committee’s excuse?

  2. The reason I didn’t post anything about this case on my “Bioethics Discussion Blog” was because it was fortunately not in the national spotlight both in terms of the news media or the legislatures. I felt that cases like Clarke, discussion of the merits should be left to the stakeholders and if necessary the courts. These are the parties who would know the total and detailed facts of the case including the patient’s pathology, clinical course and prognosis. They would also know what transpired in the ethics committee meeting. For the rest of us to speculate one way or another is not appropriate.

    I would say, however, that beyond not knowing the facts, there is some facts the public should know about the responsibilities and function of the attending physician and any ethics committee. As chair of my hospital’s ethics committee, I know that the individual responsible for signing the order to terminate life support would be the physician and NOT the ethics committee. The ethics committee is not licensed to practice medicine and that includes not licensed to the making of diagnoses, prognoses, ordering or discontinuing treatments. Ethics committees do not make medical decisions. Hospital ethics committees are responsible only for educating the stakeholders regarding the current law and the ethical consensus in the community, state and nation. The committee is also responsible for mediating conflicts between parties–NOT arbitrating or making decisions.

    As the law exists in California which I understand is similar to the Texas law, no physician or hospital need follow the medical request of the patient or surrogates if that request is not in keeping with the standards of medical practice or is against the moral values of the physician attending the patient. The standards of medical practice is NOT set by any ethics committee but is determined by the physician’s superiors based on what is accepted medical practice in the community. In order to prevent unprofessional and illegal abandonment of the patient, if the conflict between the physician and patient/surrogate cannot be resolved, the physician and institution must help, within a reasonable time period (usually 10 to 14 days) the patient and family obtain a physician or institution that will follow the patient’s request. If none can be found, then the physician may terminate the treatment. However, the patient/surrogate can take the issue to court for examination and for a court decision of the conflict.

    In conclusion, no ethics committee is making a decision, giving orders or trying to “kill” anyone. If society finds that the Texas and California laws are not what they want, they can always go to court or have the legislature make changes. Unless the law is changed, the ethics committee has no option other than explaining to the parties what the law says and that’s that! The final decision is up to the physician. ..Maurice.

  3. #3 Orac
    May 4, 2006

    In conclusion, no ethics committee is making a decision, giving orders or trying to “kill” anyone. If society finds that the Texas and California laws are not what they want, they can always go to court or have the legislature make changes. Unless the law is changed, the ethics committee has no option other than explaining to the parties what the law says and that’s that! The final decision is up to the physician.

    Come on now. That’s being a bit disingenuous, don’t you think? The doctor needs the cover of the law and ethics committee to order for support to be withdrawn. If he doesn’t get it, he leaves himself open to serious liability, and if he decides he can’t take care of the patient anymore he risks being sued for abandonment. Indeed, he wouldn’t have gone to the ethics committee in the first place if he hadn’t already made up his mind that the care was futile! The Texas law gives the hospital the power to withdraw care without the surrogate’s consent but only if the ethics committee concludes that the care is “futile.: That may mean that ethics committee may not order withdrawal of care, but it does give the hospital permission to do so. It gives it cover. It either accepts or denies the physician’s assessment that the care has become “futile.”

    This case, from all the information I’ve been able to gather, sounds pretty egregious. Not even the hospital is arguing that the patient can’t make her wishes known. I would also point out that, by remaining silent on cases like this as compared to right to die cases, the bioethics community gives ammunition to the right wingers who made so much hay out of the Schiavo case and are making hay out of another case of a woman in a persistent vegetative state in Texas. Heck, it even gives me the impression that the sarcastic comment I quoted about cases like this (“you have the right to choose, as long as you choose death”) is not without basis. Finally, I didn’t see such reticence (“I felt that cases like Clarke, discussion of the merits should be left to the stakeholders and if necessary the courts”) in the case of Terri Schiavo. This case is far more of a grey area, precisely the kind of case where the input of the bioethics community is needed!

  4. Orac,thanks for your response. To me the ethical issue that the ethics committee had to deal with from whatever little I know about the Clarke case was whether the patient or family surrogate had autonomy to make their request and whether any decision made by the physician would be beneficent to the patient and consistent with the existing law. It was NOT whether the treatment was futile or not. Believe it or not, that decision is a medical one and an ethics committee has no business to make it. Judgment of treatment futility is based on whether the treatment is physiologically futile (that is that it cannot accomplish the physiologic function it is being used. E.g. IV fluids being used to provide respiratory ventilation or use of a magnet to cure ovarian cancer.) But in the longer term, the treatment, even if physiologically non-futile, might be futile in rehabilitating the patient to a quality of life which is acceptable to the patient. This is also a medical evaluation understanding the potential clinical outcome despite the use of the treatment. This is not an ethics issue. All the hospital ethics committee can say to a doctor who wants to stop life-supportive treatment for a patient is whether the act conforms to what is allowed by law and whether, because of the prognosis learned by the committee, the act is beneficent to the patient. If the ethics committee has any doubts whether the treatment is indeed futile in the long run, additional medical consultation may be required for the committee’s understanding.

    Of course the physician looks to the ethics committee for support but the hospital ethics committee is not beholden to any physician. If an ethics committee believes that the physician is not following the law or performing an unethical act, the committee has the obligation to take the matter to court before the act is carried out.

    I am not speaking for the Texas ethics committee. What I have written is the way our hospital ethics committee behaves and what I believe many other committees do too. ..Maurice.

  5. #5 anonymous
    November 25, 2006

    Dear Orac

    Long time after this article is written, but after I was driving to work this week and thinking about this article for some reason or other, I thought of a question— Did ALL the hospitals in Texas turn her down, and did this include Catholic hospitals? If it did, how does this square with the whole Terry Schiavo fiasco and all the posturing and such that the religious right was a part of?

    My family member worked in a religious hospital in Texas in the early to mid nineties. It was a church based hospital, and it had just recently started dealing with the relities of managed care. The sisters were appalled at the callousness shown their patients by faceless bureaucrats in offices who pushed paper and counted pennies.

    I guess my question then becomes, if a case like this happens, and if people believe in right to life vs quality of life, should it not behoove the church based hospitals to accept these cases, if for no other reason than it fits with their purported aims? Or is it a case of if people don’t know they won’t care, and no-one wants people to know, so we keep it secret? This to me seems utterly horrid that a religious hospital could ever turn away patients.