Charlie Gard and Parents’ Judgments of their Child’s Interests

[ By on July 19, 2017 ]

I have been following the case of Charlie Gard.  Charlie, a one year old boy from the UK, was born apparently healthy, but began showing signs of serious problems at just a few months old.  Ultimately, he was diagnosed with Mitochondrial DNA Depletion Syndrome (MDDS), a disease that is going to kill him, a conclusion that can be made with virtually 100% certainty.  For more on his case, please see the Wikipedia entry.  Though it is exceedingly difficult to get unbiased information in these cases, I am strangely devoted to Wikipedia because I feel that all of those who have a stake in this case will do what they can to have their point of view recorded accurately.

I am drawn to this case because it brings together so many of the essential scientific and ethical issues we try to get our heads around in Bioethics.  First, there is the science.  MDDS, though rare, is a simple autosomal recessive disorder, the inheritance of which can be understood by ninth graders.  In addition, the role of the protein encoded by the gene can be easily understood (its involved in DNA nucleotide production).  However, the disorder is exceedingly rare.  Many news sources say that only about 15 people have been diagnosed with this disorder.  To make things more complicated, its not clear to me whether those other patients have the same mutation Charlie has.  Given that, Charlie’s parents don’t have the same descriptions of prognosis that parents of a child with a more common disorder (say, acute lymphocytic leukemia) might have.  Furthermore, finding experts on such rare disorders can be quite difficult.  In other words, though it is clear that Charlie will almost certainly die of this disorder, pointing to survival rates in the literature is difficult, so doctors communicate Charlie’s future prospects or lack there of, based on their observations and judgment.  (Ultimately, this is always the case.  However, it must be noted that the parents receiving this information is meaningfully different in the case of a rare disorder.)  Charlie’s doctors have done all that they can, but he is deaf, unable to breathe and is experiencing multiple organ failure.  Charlie’s parents have identified a doctor in the US who is willing to try an experimental therapy on the child. Initially, Charlie’s doctors agreed with this approach. However, Charlie’s condition worsened and they no longer supported it.  His doctors from the Great Ormond Street Hospital have concluded that any further treatment is futile; Charlie’s life support should be withdrawn and he should be allowed to die.  Before I write further, I should state that I believe this is the right decision.

Understandably, Charlie’s parents want to try everything they can to give their son whatever life they can.  But, the case has gone to court and the courts have sided with the doctors from GOSH.  As an American, I found this notable and surprising.  I can’t put my finger on it, but I can’t imagine American courts not saying “OK, give the experimental treatment a try.”  It is hard to believe, but I keep thinking of Peter Singer’s essay on Voluntary Euthanasia in which he invokes John Stuart Mills’ idea that individuals are the best judges of their own situations and so should be trusted to make their own decisions.  (Isn’t it ironic that Peter Singer’s piece is the one that comes to mind in order to allow treatment!)  Of course, Charlie Gard cannot make the decision, but shouldn’t his parents by proxy be able to do so?  Most news reports suggest that they do understand the gravity of the situation and, though they have hope for some additional time with their son, don’t expect Charlie to be cured or live a long life.  The key issue to me is whether Charlie is going to suffer from continued life support or the experimental treatment option.  In reality, we do not know the answer to that question (a point that was acknowledged in the court proceedings in the UK).  Here, we have a higher degree of uncertainty than we do about Charlie’s prognosis.  So, the parents and the courts are left with the question “given that we do not know if continued life support and the experimental treatment will cause Charlie suffering and has a very low chance of giving him additional life, ought we go ahead?”  I can’t help but believe that Charlie would not suffer given the extremely deficient mental capacities he is exhibiting.  Would I try the experimental treatment?  No.  Do I think it is permissible for Charlie’s parents to do so?  Yes.

As I was writing this, an opinion piece by Elisha Waldmen, a pediatric palliative care specialist, was published in the NYT.  Her opinion largely matches my own.

Interestingly, after the case proceeded through many levels of the British courts, they relented and are letting Charlie stay on life support while US neurologist Dr. Michio Hirano travels to GOSH to evaluate Charlie.  We will see what happens next.  There are a few things I know for sure: 1) The doctors at GOSH are not monsters who want to kill an innocent young boy.  2) Charlie’s parents are not deluded.  Unless evidence exists to the contrary, we should assume that they have their child’s best interests at the center of their decision making.  3) The president of the US has nothing to do with this case.

Updates:

Charlie’s parents, apparently after seeing the writing on the wall, withdrew the request to bring their son to the US for the possible treatment.  It appears that Dr. Hirano’s evaluation of the child influenced this decision.  Though one can’t help but be heartbroken for them, I hope this decision brings them peace.  Now, the challenge is to help the family help the child pass away peacefully.  Even that, though, seems to bring disagreement.  The parents wanted Charlie to die at home, but it is unfeasible (impossible?) to bring the ventilator to the home.  He is to be moved to a hospice and life support to be removed promptly.  His parents wanted a week, but the courts have not agreed to that.  I am perplexed by the continued disagreements between the parents and the courts.  There is no hope for Charlie, but the conflicts seem to be increasing the suffering, even though both the parents and the courts have the same goal at this point, to spare any further indignity.  Farewell, young lad.

 

 

 

 

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