Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA). By all means read it.
Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article. He says the case is about “the best interest of the patient, financial interest, and scientific validity.” On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients. This caution seems wise. As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases. I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness. My thought process runs through the checkpoints. First, the patient’s wishes are paramount. In this case, the patient cannot express wishes and may not be able to form them. In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes. Here, the parents are available to speak for the patient. It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control. Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker. Under the rubric I’m used to, the parent’s wishes would control. Here, the British authorities argue, they do not.