Imagine your dad is in the ICU with a stroke, struggling for life.
Imagine, having listened to the wise voices in bioethics, that he wrote an advance directive, leaving instructions about the medical treatment he wanted if incapacitated.
Imagine, that dad believes life itself is an intrinsic good, that he wants ”everything” done to keep him going, which he has told you repeatedly and also set forth explicitly in his directive.
Imagine that the treatment he was receiving in the ICU was working as designed–keeping dad alive. Yes, it was difficult, but in his cogent moments, dad gave you a thumbs up about how he was doing.
Now, imagine dad’s doctors don’t believe dad’s life or prospects were worth the suffering caused by the treatment–even though dad accepts the struggle–or the cost.
Whose values should prevail? Should doctors be allowed to refuse efficacious treatment that sustains life because they think it isn’t worth it, even though the recipient of the care wants it?
In Texas, the answer often is that doctors’ values win.
You see, the law permits doctors who disagree with patient choices to bring the matter before a hospital bioethics committee–made up of people he or she knows well, who have been trained by bioethicists, and who all share the institutional culture. That’s hardly an objective circumstance.
After holding meetings in which all parties to the dispute are heard, the bioethics committee has the legal power to turn thumbs down to wanted care–even though it is working. Once that happens, the patient must find another hospital within 10 days–even if another doctor is willing to take over the case–or the treatment will be stopped unilaterally.
And get this: There is no formal record of the “case” maintained. There is no formal right of appeal. In essence, it is a star chamber proceeding in which the values of utilitarian bioethics can be imposed on patients and their families.
I have always believed the law to be unconstitutional. And now, thanks to a lawsuit brought by a family whose loved one was victimized by the futile care authoritarianism, the statute is in the dock. From the Houston Chronicle story:
Nixon [the plaintiff's lawyer] emphasized that the lawsuit, which asks for $1 in damages, is not about Dunn’s care at Methodist.
“The issue is the authority given hospitals to withdraw care altogether, the lack of due process,” he said. “The only other time the state is allowed to take a life is capital punishment and look at all the procedural safeguards there.”
He rattled off a litany of what he said are problems with the law: it provides no definition of futile care; no criteria for the make-up of the ethics committee; no right for the patient to have an advocate at the committee hearing; no record of the hearing or right of review; and no avenue for court appeal.
The law is so bad, Texas’s Attorney General is not defending it.
Defenders of the law claim it actually improves care:
Among the law’s defenders is Tom Mayo, a Southern Methodist University lawyer and bioethicist.
“The law may not be a perfect statute, but it’s constitutional,” said Mayo, who helped draft the law. “It was designed to improve care, and it accomplishes that on a regular basis. Families often have unrealistic expectations about what medicine can accomplish. This law tamps down those expectations.”
People resisting futile care impositions expect their doctors to help them remain alive, not judge their “quality of life.” It is not up to the “law” to tamp down such expectations. Besides, sometimes doctors make mistakes, and people not expected to survived, do.
I am not a vitalist. I believe there comes a time to enter palliative care and allow nature to take its course.
But that’s for me. Other people have different beliefs.
Certainly, when it comes to life-sustaining treatment that is sustaining life–sometimes called non elective care–whether to accept or refuse should be the patient/family’s, not the doctors and strangers in a star chamber bioethics committee.
This case is more important than simply what happens in Texas. If it passes muster, we can expect other states to try and follow the Lone Star State’s lead. If it is tossed, the bioethics movement will have to go back to the drawing board for imposing its utilitarian values on the rest of us.
So, let us hope the law is tossed and hospital bioethics committees in Texas restored to their proper role as mediating and advisory panels that help patients and families negotiate the sometimes excruciating choices that must be made.
If we want the people to trust the healthcare system, bioethics committees should not be accorded quasi-judicial powers over life and death. If a case is so egregious that it is worth litigating, that controversy belongs in open court, with the family granted full due process rights, including the right to cross examination, the burden of proof on the hospital that wants to stop treatment, and to appeal.
UPDATE: Alas, the judge threw out the constitutional challenge. This bodes ill for the medically vulnerable.