Why The Texas Futile Care Law Must Fall

This correspondence is from Texas lawyer Jerri Ward, who has proved worthy of the honorific, attorney at law for fighting tooth and tong against futile care impositions in Texas (Andrea Clarke, for example). Jerri asked that I post it here at Secondhand Smoke. I do so because I trust Jerri. She has never steered me wrong:

“I attended an ethics committee meeting yesterday concerning a 15 month old baby. The baby is suspected of having Leigh’s disease-although that is only the best guess of the neurologists and neuro-radiologists and not a medical certainty. The results of the tissue biopsies are not all back.

“According to the mother, the hospitalist pediatrician had refused to write an order for the insertion of a peg tube and trach so that the baby could be transferred to a pediatric snf (skilled nursing facility). The pediatrician pretty much admitted to this during the meeting.

“The neurologist spouted the usual nonsense about the baby’s life not really being a ‘life’ and made the burden argument. He tried to express that it’s not in the baby’s interest to continue life—but immediately segued into an argument about how hard the situation is on the care-takers. I called him on that and said that we needed to transfer the baby to the pediatric snf where they care for children in similar situations day in and day out and the caretakers don’t consider it a burden upon them to give care to such children. The hospital lawyer interjected with some calculated coaching to keep the doctor from descending further into a utilitarian argument.

The pediatrician, who has been very rude according to the family-slamming doors in the mother’s face and the like, was an appalling woman. She openly admitted that the trach and the peg tube would not be complicated because the baby has no co-morbidities that would cause problems. She admitted that it was probable that he would be readily admitted to a pediatric snf-yet she tried to justify obstructing all that and removing life-support because of the benefits burden argument—and she argued that point like an impassioned parrot of current futility faddism. In order to counter that, I was able to open up the mother in an equally impassioned description of how the baby responds to the love and attention of the family and how important it was for her to continue giving all that until Jesus takes the baby into his Arms.

This baby could live months or even years longer with good—but simple care. All he needs is a respirator, ventilator and the attendant care, anh, and a vitamin regimen—along with daily custodial care.

The ethics committee decided not to invoke the 10 day period. As of now, I am uncertain if the pediatrician will write the order for the trach and the peg tube. It is imperative that these orders be written so that the baby can be transferred away from doctors who believe that he should die right now...

“Would you please blog about this. I don’t want to reveal the hospital name until I know whether or not the fight is over. If it’s not—I will reveal this information.

Jerri Lynn Ward, J.D.”

I post this, realizing it presents only one side, because it vividly illustrates the hostility that some families face in some hospitals merely because they wish to keep their loved ones in the land of the living. (I had a similar experience when I represented pro bono the wife of an Alzheimer’s patient. She had agreed to a DNR and no antibiotics, but would not agree to dehydrate him to death. The doctor’s ultimate goal was to remove tube feeding. He was literally white with rage for being defied.)