Lisa Blumberg: What Principles Should Govern Charlie Gard’s Case?

The Charlie Gard case concerns a young British child with a very rare genetic condition that has currently left him unable to move, breathe or eat on his own. His parents wanted to take him to the United States for experimental treatment but his London doctors, believing he has suffered enough, wanted to turn off life support before that can happen.  In the protracted legal fight, the courts have sided with the doctors. The Gards have now given up the case, believing that the time during which there was  hope that Charlie could benefit from the treatment has passed. Their only request now, which entails a battle in itself, is that they be permitted to bring him home.

I cannot get a handle on the situation from news reports.  Is Charlie terminally ill or is he instead locked in? Do his doctors even know? Is he in irremediable pain or is his suffering intuited by his “undignified” circumstances? Would the new treatment, if given timely, have offered a hope of stabilizing his condition or giving him an increase in function, even though he still might have had a considerable disability? Would the treatment be very painful?  Thus, my eye caught on the title in Stat, “Why Charlie Gard’s case is so disturbing to Americans”.

Unfortunately, the opinion piece written by American ethicist Michael S. Dauber would have been better entitled “Why Charlie Gard’s case should not be disturbing to Americans”.

Dauber believes that Americans may be disturbed by a legal body determining the manner of a person’s death.  However, he feels that what must be remembered is that this is type of thing courts do in England.

He goes on to say that “as far as medical ethics theory goes”, the justifications of the courts in this case “are comparatively noncontroversial.” Wrapping up, he asserts, “…it’s important to keep in mind that such decisions are based on perhaps the most essential and cherished elements of ethical care…the alleviation and minimization of human suffering.”

So, suck it up, Americans!  Actually, the case is a much greater cause Celebre in Britain than it is over here.

I cannot comment on the decisions in the Gard case. I haven’t read them. However, is it possible – just possible – that a court in dealing a similar scenario might range beyond the well-being of the person involved and factor in public policy considerations? Might there be a concern that if one family could challenge medical decisions, others could as well, and then where would the health care system be?

Dauber all but ignores the twist in the Gard case. The Gard’s, conceding that there is nothing more that the London doctors can do for their son, wanted to change doctors and approaches. It seems as if the right to die (or for other people to have you die) can supersede the right to try.  This may be what is really troubling folks on both sides on the pond.

In the outpatient world, where medical ethics theory holds a bit less sway, people switch doctors all the time.

Indeed there are ethicists, including some who you may not expect, who believe that the Gards should have been allowed to seek new treatment for their son when there seemed to a narrow window of opportunity, instead of forcing them into court with the clock ticking. How does that minimize suffering?

To repeat, I don’t have an informed opinion on the decisions in the Gard case. I can say though why I am so disturbed by Dauber’s piece. His view at best is parochial. He appears to think that life and death decisions can be solely made “within frameworks of medical ethics” and does not acknowledge other perspectives. He hews to the formula – no likely benefit + likely harm = no treatment – without recognition that various ethicists have defined the terms benefit, harm and treatment in hugely different ways.  Then at the  end of the piece, he conflates medical ethical theory with ethical standards and talks about “enforcing” them. Have ethicists been elevated to an unelected, shadow legislature?  Can medical ethics theory be balanced by a presumption of the merits of survival?

My bent is towards equal protection and due process, principles enshrined in the U.S. Constitution and derived from the Magna Carta.

One thought on “Lisa Blumberg: What Principles Should Govern Charlie Gard’s Case?

  1. Ethicists and bookkeepers often hang out together. The problem is that modern medical technology not only extends life and produces miracles but often this is involves great financial costs to the particular medical system involved —whether socialized as in the UK or private for-private and Medicare/Medicaid/other government medical insurance, as it is in the USA.

    Ideally, it would be wonderful if all nations could or would devote enough resources to guarantee that all citizens have a right to live as long as is medically possible and as long as the patient desires to live but is this possible or realistic?

    The compromise, therefore, is a form of “rationing” of medical care that involves ethicists who face these moral dilemmas which are particularly difficult when they involve children who are greatly loved by parents but who cannot speak for themselves.

    In the USA, equal protection under the law has nothing to do with Medical Care. In fact the disabled children and adults and the elderly in the USA are covertly targeted for savings in the USA by way of withholding life-saving care in the hospital with the use of both covert and overt DNR Code status. Their greater need and use of medical care in and out of the hospital and their already reduced life-expectancy means that the elderly and the disabled population are more expensive to insure and treat to begin with and, therefore, it is rationalized that the elderly and the disabled cannot be allowed to extend their lives by way of expensive stays in ICU and CCU units in the nation’s hospitals.

    The most we can attain, perhaps, is greater transparency about rationing of care to make it fair but the ethicists aren’t particularly interested in transparency, are they?

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