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determined that there was little evidence that the therapy could improve his condition, and that life support should be withdrawn.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, physicians who treat children must determine when to honor or challenge families’ requests for different treatments.
When examining available options for care, clinicians should recommend what they think will best serve their patient’s medical needs. Two related ethical and legal concepts serve as their guideposts: the “best interest” standard and the “harm principle.” Too often, however, the key differences between these two concepts are overlooked. And using them for the wrong purposes can make it harder to resolve conflict.
In this case, Charlie’s doctors and the courts invoked the best-interest standard to deny the parents’ wish to offer their son experimental treatment. The physicians involved, and many who were not, cited the lack of evidence to support the experimental therapy, as well as the “burden” of continued life for Charlie.
But it’s hard to know whether Charlie could feel or experience much at all. Assuming he received appropriate pain medication, Charlie probably wasn’t suffering. The best-interest standard always requires a value judgment about what matters most for a patient. But in Charlie’s case, it appeared to have been applied subjectively — and his parents may have held different goals for his care.
When parents disagree with the doctors’ recommendations, doctors have to ask themselves whether to try to overrule the parents by going to the courts. But the best-interest standard is not up to that task; the harm principle is a more appropriate guide.
The harm principle, for example, can be invoked by doctors and courts when a parent refuses medical intervention on behalf of a child. However, clinicians should invoke the principle only to prevent significant risk of serious harm to a child — for instance, when parents opt against surgery that has a good chance to save a child’s life.
Use of the harm principle recognizes the very act of intervening in family decisions can be traumatic. For the medical professional facing a parent refusing to consent to a suggested course of treatment, the proper question should not be, ‘‘Is this intervention in the child’s best interest?’’ but rather, ‘‘Does the decision made by the parents significantly increase the likelihood of serious harm as compared to other options?’’ Parental choices that do not significantly increase the risk of serious harm should be considered seriously, and state intervention postponed, while doctors work with parents in a nonconfrontational manner.
In this way, the harm principle sets a higher bar for legal intervention. It gives more weight to parents’ views, reducing the chance that they will regret a decision imposed on them by doctors or courts.
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. Despite the good intentions of the physicians, hospital staff and courts, the resolution of the Charlie Gard case was undeniably tragic. It is true that Charlie’s condition was rare and serious enough that the treatment might not have been able to help. But considerable delay came from seeking clarity from the courts, and his parents might reasonably question what might have been.
The best-interest standard is a useful concept, but one that is vulnerable to personal bias and subjectivity. It is a poor way to decide when to legally override parents’ decisions. In cases like Charlie’s, the harm principle might have led to greater clarity and better decisions that appropriately incorporated his parents’ values.