Tuesday, April 25, 2006

Hard decisions at end of life

There's a woman named Andrea Clark whose family is fighting the decision by her doctor to stop life saving care at St. Luke's Hospital in Houston, Texas. The story has been reported on World Net Daily and several blogs, including this one at the Houston Chronicle. (Warning, there are links to the Democratic Underground threads by one of the sisters - DU posts, and even the titles of the posts, are full of coarse language.)

This is definitely one of the "hard cases."


I think I would agree with her doctor, although I believe I'd go much more slowly and talk with the family until they agree that I'm at least trying to give care in the best interest of Mrs. Clark. I'd be against continuing dialysis in this case, on top of the ventilator, her heart disease, and the loss of mental capacities. The actual mental status the major point of dispute, evidently, and finding evidence that the family believes and trusts would be my first priority. (As a matter of fact, I'd almost bet that the doc thought the ethics committee process would lead to that end and show the family that he is right. Instead, they don't trust the committee, either.)


There are no facilities for chronic care of patients on ventilators who need hemodialysis for kidney failure. And the dialysis facilities can't handle a patient that comes in to the clinic two or three times a week on a ventilator. So Andrea Clark will have to stay in the ICU bed.

From what patients have told me, dialysis can be physically uncomfortable even when the patient knows why we're doing it to them. The kidney failure, even with the dialysis, adds to the lack of healing and to the bad circulation that aggravates the bed sores she's reported to have. And the ventilator limits the turning and repositioning the nurses would do to prevent the bedsores in a patient who can't move for herself.

The Texas Advance Directives Act has a portion, .046, which concerns the doctor who refuses to follow the request of the patient or his surrogate.

Every time I read the part of the law that is in dispute, I come away thinking of it as a "conscience clause" with an appeal process for anyone with a different conclusion, due to their conscience.

That portion of the law and its history has been described and explained very well by Katherine Jean Lopez in the National Review Online blog, "The Corner," back when Terri Schiavo was being refused oral as well as artificial nutrition and hydration:



But according to a source familiar with what went down in Texas, the then-governor signed into law the best bill he could get at the time, improving an already bad situation. Here’s some background explained:
In August 1996 the Journal of the American Medical Association published an article describing procedures then in effect in Houston hospitals. Under these procedures, if a doctor wished to deny a patient lifesaving medical treatment and the patient or the patient's surrogate instead steadfastly expressed a desire for life, the doctor would submit the case to the hospital ethics committee. The patient or surrogate would be given 72 hours notice of the committee meeting would be allowed to plead for the patient's life at it. During that short 72 hour period, the patient or surrogate, while preparing to argue for life, could also try to find another health care provider willing to give the lifesaving treatment, food or fluids.
If the ethics committee decided for death, under these procedures there was no appeal. There was no provision that the food, fluids, or lifesaving treatment be provided after the decision while the patient or family tried to find another hospital willing to keep the patient alive.
So under these procedures, the hospitals in Houston were denying life-saving treatment, food and fluids against the wishes of patients and their families, when the hospital ethics committees said their quality of life was too poor. Patients and families were being given only 72 hours after being notified of the proposed denial to find another health care provider.
In 1997 there was an advance directives bill going through the Texas legislature that would have given specific legal sanction to such involuntary denial of life-saving treatment. An effort in the Texas legislature to amend the bill to require treatment pending transfer to a health care provider willing to provide the life-saving treatment had been defeated. When that bill reached Governor George Bush’s desk, he vetoed it, and said he was vetoing it precisely because it authorized hospitals to deny lifesaving medical treatment, food, and fluids against the will of the patients.
But even without that bill, these procedures were still going on. So there was an effort in the next sitting of the legislature, in 1999, to pass protective legislation. Unfortunately, the votes just weren’t there to require lifesaving treatment, food, or fluids be provided by unwilling hospitals. So there were negotiations that resulted in a bill that gave partial protection. That 1999 bill:
first, formalized more protections for in-hospital review
second, gave patients 10 days of treatment while seeking transfer, and third, authorized court proceedings to extend the 10 days for reasonable additional periods to accomplish transfer.
Now this was not what patient advocates wanted and it wasn’t what Governor Bush wanted. However, it was an important advance over the existing situation of no legal requirement of treatment pending transfer, for any period of time. The votes were not there in the Texas legislature to accomplish a more protective bill. So Governor Bush signed it because it was an improvement over the existing law.

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