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07/20/2017

More about Charlie Gard

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.

The columnist William McGurn took exception to this attitude in The Wall Street Journal earlier this week.  “This is our call, [the doctors and courts] say,” he writes.  And this is the necessary attitude of single-payer healthcare, he claims: “at the heart of single payer is single authority.”  The hospital, McGurn charges, “even wants the last word on love: ‘In one respect, Charlie is immensely fortunate” to have such loving parents, but that respect apparently has nothing to do with this decision, for which their love apparently disqualifies them.  (BTW, perhaps you have seen the report that the court-appointed “guardian” for Charlie chairs an organization that is a sister organization to one that promotes doctor-assisted suicide.)

Dr. Truog’s second point is that distributive justice trumps (my word, no political pun intended, honest) the money Charlie’s parents have raised for his experimental care.  In fact, justice demands we disqualify that fundraising effort, because to allow them to pay is to elevate their ability to pay over others who may be in need of scarce resources.  He says that public funds have stood up the hospital and British health system overall, so the Gard family does not, as it were, “own” it or lay privileged claim to access.  I find this argument of Dr. Truog’s specious.  There is no certainty at all that Charlie would block other needed care—unless, I suppose, it is allowed that Britian’s National Health Service already rations care to the point of extreme scarcity!—and they harm no one by possibly paying for experimental care.

That leaves the third issue—is treatment, admittedly experimental in this case, ethical?  Dr. Truog says no, because the chance of success is so low and “does not meet a threshold of scientific plausibility.”  He argues that the rationale is theoretical only, and complains that the proposed experimental treatment has not been tested in animals or humans before.  But again, this is at least partially specious.  Charlie suffers from an extremely rare condition, animal models may be lacking or entirely unpredictive (medical researchers operate with this general conceit that animal studies DO predict—boy can I tell you how often we are wrong about that!), and when a condition is rare, EVERY individual case provides the opportunity to learn something.  Medical history is replete with work based on the careful observation of clinicians, even apart from the randomized clinical trial, which could never be done in such a rare condition as Charlie’s.

It is of course possible to object that the risk-benefit ratio for giving Charlie the experimental treatment is a judgment call that should be made against treatment.  If the doctor is truly being reckless with the proposed treatment, is profiteering, or if there is no reasonable possibility, at acceptable risk, for direct benefit to Charlie or for useful knowledge to be gained, then the proposed treatment should be deemed unethical.  In the U.S., that would be a call for an IRB and the FDA.  And again, they might say “no,” in which they would be speaking more to the doctor than the patient’s parents.

But in this case I think the British courts should defer to the parents and allow them to pursue that question in the U.S.

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