A Minnesota futile care theory case illustrates why I believe that disputes over whether to continue wanted life sustaining treatment belong in court, not in secret and confidential bioethics committee meetings. From the story:
Lana Barnes entered Hennepin County Probate Court Wednesday morning determined to win aggressive care for her frail husband and remain his medical decision-maker. Instead, Barnes possibly could face lawsuits and criminal charges after making a startling admission on the witness stand: She altered a legal document governing her ailing husband’s care. Lana Barnes testified that as guardian for her husband, Al, she felt justified in eliminating two pages of his 1993 health care directive, including passages in which he said he didn’t want to be kept alive by machines. When she admitted her 85-year-old husband to Methodist Hospital in December she provided only a page identifying her as guardian. In several hearings over the past 10 days, Methodist has sought to remove her from that role, contending that Al is too sick to recover and that her insistence on aggressive care is incorrect and reckless.
The point of this post isn’t whether the hospital is right. Rather, it is to illustrate that if we are to have futile care decisions in which a surrogate’s decision to maintain life-sustaining treatment is overturned—and occasionally that is the right call—the proper venue is in front of a judge in open court, with witnesses under oath, a public record, the right to cross examination, and appeal.
These are issues of life and death and they don’t belong in secret star chamber proceedings, in front of bioethics committees, in which the surrogate decision maker can be viewed as the enemy to the institutional culture—such as the law of Texas provides. I know. I represented a woman (pro bono) in front of such a committee in California. It was a very hostile environment, in which the doctor who wanted to force my client’s husband off a feeding tube because he had Alzheimer’s—even though my client had agreed to a DNR and to not provide antibiotics. The doctor interacted in a friendly and jovial manner with the committee members before the “meeting,” which felt more like a trial than a conversation, but became white-faced with rage toward my client. Had I not been there to represent her, I know the feeding tube would have been pulled. Instead, after some vigorous push-back from yours truly, we agreed to transfer his care to another doctor and he lived for three years. She was thrilled that he wasn’t pushed out of the lifeboat before his time.
Anyone who has followed my work for any length of time knows I am an opponent of most futile care impositions. But this case showed the proper approach—which allowed the public to see not only the woman’s wrongdoing, but also that his sons had a different view about his care. Thus, rather than breeding paranoia—sometimes they really are after you—and the suspicion that the decision might have been based on saving the hospital money, having the matter decided in open court publicly revealed important facts that were very germane to the ultimate decision.