An editorial in the NEJM this week concerns medical futility in Texas. Dr. Robert Truog MD writes about the case of Emilio Gonzalez.
Emilio had been diagnosed with Leigh’s disease, a pediatric illness which is fatal. Sometime before he was 2, he ended up on life support at Children’s Hospital of Austin for five months! Dr. Truog describes some of the painful events, especially how the mother refused to let the hospital move the child. She took the hospital to court, but before the judge could issue a ruling, the child died.
(Does this outcome vindicate the judgment of the doctors? Hmmmm….)
Anyway, it’s a sad ending to a sad case. But this is not what made me angry.
It’s Dr. Truog’s take on ethics committees themselves. Here’s what he says:
“ ...most members are physicians, nurses, and other clinicians from the hospital staff... they are unavoidably “insiders,” completely acculturated to the clinical world and its attendant values. This is hardly a “jury of peers” for a low-income woman of color and her infant son.”
He feels that the ethics committees agree too often with providers. (He states later that ethics committee at Baylor agreed with the clinicians 43 out of 47 times. Gee, I wonder why.)
I will tell you why: Because they know what they are doing.
First, I hate the seamy implication that because the woman is of “color” and is “low income”, that the doctors involved (pediatricians, I suppose) were more willing to treat them unfairly. They kept him on life support for FIVE MONTHS!!! And he died of his TERMINAL ILLNESS!!! (It’s like Terri Schiavo all over again).
Additionally, I do not understand AT ALL his beef that the committee is made up of mostly doctors, nurses and people who are “insiders”. WHO SHOULD IT BE??? Lawyers and people who have never cared for a sick person a day in their life!!???
I’m sure we’d all like someone with no clinical judgment or experience except what they’ve seen on TV to offer an ethical opinion. That makes as much sense as letting a postal worker manage your finances!
Ethics committees are correctly loaded with people who understand a life is at stake, and that family members are the best advocates of the patient. The fact that they agree with practitioners is a testament to the practitioners’ clinical judgment, NOT evidence of a “conspiracy”. I mean, did anyone ever meet someone on an ethics committee who wasn't a "touchy feely" do-gooder? I sure haven't.
Also, what is with his obsession with the whole “jury of peers” and “due process” systema? This isn’t a court of law. It’s an ethics committee. There is no need for a “jury of peers”. No one is on trial. Doctors, nurses, social workers and clinical minds are trying to come to a solution, much the same way a “tumor board” works. I don’t think anyone would call for a “jury of peers” at Tumor Board, if a patient’s cancer treatment was to be decided. That’s because it isn’t appropriate.
Dr. Truog has got it wrong.