Testimony on Texas Advanced Directive Act

Yesterday, the House Public Health Committee in Austin, Texas met to hear invited and public testimony on the Advanced Directive Act, which includes a provision for the refusal by a physician to follow the end of life care plans of a patient or patient's surrogate when that care is medically inappropriate. The Committee heard testimony from 10:00 AM until 11:30 PM.

As I said last night, the testimony from the families who feel that the law puts too much power in the hands of doctors to decide life and death matters is heart-wrenching. I can see so many places where there truly was rudeness on the part of members of the ethics committee. I can also see where the family members are upset because they don't believe that their feelings were taken into account. I see some places where the communications broke down and others where the family members are just too demanding.

I haven't been able to watch the first 6 hours, which is evidently mostly from the Coalition members and the staff and doctors who deal with this issue most often in Texas.

(You can watch the video online at Texas Legislature Online. At the link in that last sentence, click on the broadcast icon for Human Services. Or try here. You will need "Real Play" to watch the August 9, 2006 meeting archive.)

I did watch the middle 5 hours or so. Be sure and listen to the doctor at about 6 and a half hours in until 7 hours.

This doctor does an excellent job of discussing so many of the errors and flaws in the cases he's seen and in the law, itself. He makes excellent suggestions.

I do disagree with his "all or nothing" stance - and that of so many of the doctors and ethics committees that we hear about. It is perfectly appropriate to say, "This much and no more. We will continue the ventilator, but no more dialysis." or, "If there is further deterioration or another crisis, we will not intervene, we will continue our comfort care, and even the level of treatment that we've begun, but we will not add new medicines or machines."

One patient that I helped care for did not want CPR, IV's or a permanent feeding tube, but did not mind a trial of a temporary feeding tube and any treatment that we could give that way. Another wanted chest compressions, oxygen by mouth and even shocking, but refused any and all IV's or shots for medications in the event that his heart stopped.

It took me a while to get around to the point of understanding this way of thinking, but I can see the wisdom in it now. The interventions and invasions were unwanted after a certain point. The patient did not want to die, he did not want to refuse intervention, but he did not want invasion of his body or prolonged intervention and manipulation. We did not kill Mrs. X because we didn't give her IV's. Her disease killed her when the antibiotics by the nasogastric tube were no longer absorbed well enough to fight her kidney infection.


"This much, and no more."

From the testimony of Andrea Clark's sister, the primary doctor did suggest just this plan, while offering to continuing the ventilator. Evidently, when the family insisted on doing everything, he decided to go to the ethics committee.

Any law may be abused by the people who are charged to carry out that law. However, I have not (so far) heard testimony on decisions to withhold or withdraw care that I might not have agreed to at the time. However, I do find that some of the reports of individual behavior and attitudes are rude, high-handed and/or unwise in a law-suit-happy society. If half of the behavior of one of the members of the Andrea Clark ethics committee is true, that man needs to at least take a break from the committee, if not resign completely. I can't imagine his peers tolerating either his lists of qualifications for quality of life or his body language.

Yes, there are miracles and I am thrilled to hear about them. But, I believe that I heard about the withholding of care, by "Hospital B," even in the case of one of those miracles. In this case, dialysis was not begun because of low blood pressure. In the case of Andrea Clark, dialysis was begun and continued, even as ever higher medicines were necessary to maintain her blood pressure in order to do so.

But, for some reason, the family members of the miracle lady do not react to the withholding of dialysis by Hospital B as though it's wrong.

I'm afraid that most of the problems that I heard about were "acts of God" (the woman who was found with her ventilator tube dislodged) or angry people reacting poorly. I keep wanting to talk back to the screen (probably why the Lord decided to keep me away from the meeting) and ask, "Where were the nurses during all this?" In my experience, a good nurse who could liaison between the different parties woud have just about fixed all the problems.