The tragic Charlie Gard case and what we can learn from it

Some people value life in all forms; others believe that a life lacking capacity for interaction with others is meaningless. We should strive to remember, at a minimum, that reasonable people disagree about the best way to proceed in cases like these.

MEDICAL cases like Charlie Gard’s ignite public debate about what should happen when hospitals and courts disagree with families about what is best for a child. Charlie, 11 months, died July 28 of infantile-onset mitochondrial DNA depletion syndrome, a rare progressive condition that left him unable to breathe or move on his own.

In Charlie’s case, the British doctors and courts opposed the parents’ desire to take their son to the United States to try experimental treatment. The courts determined that there was little evidence that the therapy could improve his condition, and that life support should be withdrawn.

After months of legal battles, Charlie’s parents heard from a U.S. medical specialist that it was too late for the longshot therapy to be of any potential help. They stopped contesting the case and spent Charlie’s last day at his bedside in a hospice center — after the court denied their wish to take him home.

There is much we cannot know, but we think the hospital should have honored Charlie’s parents’ initial wish to explore experimental treatment options and accommodated their desire to take him home to die. Allowing the parents to feel that they had exhausted their options, instead of escalating the boy’s case to a court, likely would have led to a better outcome.

As pediatric bioethicists, we are familiar with such cases and the mechanisms to resolve collisions between deeply held values and medical recommendations. Although the public scrutiny and outcry about this case was unusual, such disagreements are not. Every day,…

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