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07/24/2017

Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome

The family of Charlie Gard


The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care.

The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week.

Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek not in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment?
These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these.

What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing Healthcare Treatment Decision Making for Minors, including infants, that is now more than two decades old.

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“Don’t forget about children” was Bill Bartholome’s response when I asked, shortly before his death in 1999, how we could honor him. Bill was a pediatrician, bioethicist, member of the Center for Practical Bioethics’ charter board (then known as the Midwest Bioethics Center), and a nationally known advocate for children with disabilities. I think of Bill often, and after nearly two decades still wish that we could have a glass of wine and argue (which we did with great delight) about interesting cases.
Written by Myra Christopher
A Turning Point in Rights of Children with Disabilities
In light of Charlie Gard and similar recent cases, I have wondered if Bill’s strong opinions, shaped when he was a pediatric resident at Johns Hopkins in 1971, would have changed in recent years. As a pediatrician in training, Bill was named attending for a newborn with Downs Syndrome whose stomach was not connected to his bowel. A simple surgical procedure was all it would take for the child, who came to be known as “Baby Doe” (now “Baby Doe One” or “Baby Doe Hopkins”), to grow and thrive. The problem was that Baby Doe’s parents (a nurse and a businessman) did not want a child with disabilities or a “mongoloid” as such children were often referred to then. With physicians on staff, they decided together that the baby would not be fed, allowing him to die. Baby Doe was placed in the back of the nursery and died 17 days later. 
Bill and Norm Fost, a nationally known pediatrician/bioethicist now at the University of Wisconsin (then chief resident under whom Bill served), thought the decision was inherently wrong. After going through all the “appropriate” channels to express their concerns, the two of them became whistle-blowers. In the midst of their efforts to save him, Baby Doe died. Bill persisted, however, and ultimately convinced Walter Cronkite, CBS Evening News Anchor, to do an exposé about the case during primetime television. It was a turning point in the rights of children with disabilities. Children were no longer seen as property. Rather, parents were considered custodians or stewards, and the role of society was also acknowledged.
Dying or Sick?
Disenchanted by what had happened, Bill left medicine and went to Harvard where he earned a Masters in Theological Studies and became a nationally recognized advocate for children with disabilities and a pioneer in bioethics. Ultimately, he made his way home to Kansas City where he chaired the Department of the History and Philosophy of Medicine at the University of Kansas Medical School and served on the Center’s charter board.
Under his leadership in 1995, the Center, as noted above, published a guideline for Healthcare Treatment Decision Making for Minors, which includes a section on children without capacity, i.e.,” infants, very young children and minors with cognitive impairment.” Ethics committee chairs, children’s advocates, bioethicists and pediatric healthcare professionals all joined in the work to establish the guidelines. As we were working on the document late one night, Bill said to me, “The problem here is that some children come unto us dying; others are just sick as sh.., and we can’t tell one from the other, so, we end up doing terrible things to innocent dying kids.”
As I consider the complexity of the Charlie Gard case, I wonder where Bill would place this baby’s “best interest.” What might be his guidance now?  
No Bad Guys
In reviewing the guidance document today, I am struck by how timely it remains. In particular, I am taken with this statement:
If providers believe that parental refusal of permission for a specific treatment (or non-treatment) will result in predictable harm to the health or well-being of the child, they are obligated to participate in conflict resolution procedures. If the disagreement cannot be resolved, the healthcare providers have a duty to seek permission for treatment (or withdrawal of treatment) as provided by the law. 

There are no bad guys in the Charlie Gard case. Tragically, there are only people who will carry the burden of their involvement in whatever decision is made all the days of their life. It is my hope that, when all is said and done, each one can say, “I did what I thought was best for Charlie” – no matter what is ultimately decided.  

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