It’s every parent’s nightmare. Your child is suffering and you are powerless to do anything about it. In most cases you would exhaust all treatment options, consult leading specialists, and even travel the globe to find a hospital for your child. Ultimately you, the parent, would make treatment decisions you believe are in the best interests of your child. That is unless you are Connie Yates and Chris Gard—parents of baby Charlie Gard.
Young Charlie Gard suffers from Mitochondrial DNA Depletion Syndrome, a rare and typically fatal genetic disorder. He is also the baby at the center of a healthcare tug-of-war between his parents and the U.K. courts. Recently, England’s high court heard impassioned pleas from Charlie’s parents to let them exhaust any and all treatment options. The Ormond Street Hospital, where Charlie is being treated, as well as lower courts in the United Kingdom, have previously determined that the baby cannot be saved and should be allowed to “die with dignity.”
How did it come to this? That is, the courts and hospital, not Charlie’s parents, making a literal life and death decision?
Charlie’s story can be explored on several moral and ethical levels. One area requiring greater exploration, however, is the fact that treatment decisions in Charlie’s case have been taken out of his parents’ hands because of the constructs of Britain’s National Health Service. The N.H.S. is the socialized healthcare system in the United Kingdom.
The decision of the hospital and courts to let Charlie die is essentially a bureaucratic one. It is based on the degree of healthcare resources—in a government-run system—required to pursue the slim possibility of a positive treatment outcome. Charlie’s continuing treatment would fall outside the scope of coverage of the N.H.S. and would be considered non-value added. It is a decision that does not account for the wishes of the two people closest to Charlie, his parents.
With bureaucratic control at the center of any socialized healthcare system, treatment decisions made by the “system” are based on saving money. This is done through rationing care, finite resource allocation, and service restrictions rather than a patient-centered collaborative effort between provider and patient. According to a 2014 U.K. survey, the use of processes like referral management and treatment limits within the N.H.S. have increased the degree to which British physicians feel rationing has negatively impacted their ability to effectively practice.
Forms of socialized healthcare, where decisions about who to treat, when to treat, and the degree of care received, hasn’t been the answer for Charlie Gard or for his parents. It isn’t the answer for the U.S. healthcare system either. Heaven forbid you are ever faced with a medical life-or-death decision as serious as Charlie’s. But if you are, shouldn’t the decision be yours?