Charlie Gard, 11 months old, died on July 28, 2017, of the effects of his rare genetic disorder, mitochondrial DNA depletion syndrome. His parents, Chris Gard and Connie Yates, wanted him transferred from his UK hospital to the US for experimental treatments.
Great Ormond Street Hospital denied permission for transfer citing their opinion that the treatment would be unsuccessful and would prolong the baby's suffering. Charlie's doctors stated they were acting in the best interests of their patient. British courts upheld the hospital's decision. Eventually, Charlie had to be moved to hospice, where he died.
What can be learned from Charlie and his parents?
The questions flow from a statement made by Charlie's mother. "Even if it (the experimental treatment) doesn't work, which I think it will, we know that we will have done everything."
Implicit in Ms. Yates' comment is the first question: In cases such as this, who is the patient? Is it the individual child or the child and his parents? Charlie was too young and too compromised to have, let alone express, his wishes. His parents, however, were quite clear about what they thought best for their son.
Charlie's doctors at Great Ormond Street Hospital made a medical decision that they medically believed was in Charlie's best interest. However, was this strictly a medical matter? Or was it a psychological and emotional matter as well? Should the parents' feelings about their son also have been taken into account in determining what should have happened to Charlie?
"Even if it doesn't work...we know that we will have done everything."
In harrowing cases such as Charlie's, should the emotional sustenance and psychological well being of the parents be considered as part of the treating facility's decision? In other words, should this have been a joint medical-psychological decision? Is the peace of mind that parents can achieve by knowing that they had "done everything" for their child be worth considering, as part of the hospital's decision-making process?
If the experimental treatment were unsuccessful, its outcome would have been medically negative. The individual patient, Charlie, would have died. But even if they had lost their son, Chris Gard and Connie Yates could have buried him knowing they had, indeed, done everything. Might that be considered a small, but positive outcome?
Charlie Gard taught us that there is a critical role for psychologists to play in helping physicians arrive at appropriate treatment decisions in such cases. More than medical factors are at play.