Why Charlie Gard’s case is so disturbing to Americans

Charlie Gard, the 11-month-old English boy with fatal mitochondrial DNA depletion syndrome, is at the center of an international debate about who has the right to turn off a patient’s life support system. Charlie’s care team at Great Ormond Street Hospital in London applied for permission to remove him from life support, arguing that he should not be forced to suffer any further since he is sure to die from the disease. Both the British High Court and the European Court of Human Rights supported the request, arguing it would be cruel and inhumane to force Charlie to suffer through further treatments that will not help him. Charlie’s parents want him to stay on life support so they can try an experimental treatment.

What may be disturbing to Americans is the idea that a legal body can decide to withdraw life-sustaining treatment from a patient.

At its heart, this is a classic ethical issue. As someone who has served as a clinical ethicist, I can tell you that such cases occur often in hospitals across America. I have often encountered families who wished to keep a loved one on life support indefinitely even as doctors explained there was nothing more that could be done for the patient. I have even encountered cases involving newborns, some younger than Charlie.

Modern ethicists have debated how to handle such issues for decades. Controversial thinkers like James Rachels and Peter Singer have extensively discussed the distinction between killing a patient and letting him or her die. They have argued that, all other things being equal, patients should not be forced to suffer any longer than they have to if there are no further treatments available. Within frameworks of medical ethics, it is commonly held that physicians should not offer therapies that are unlikely to benefit patients and that are likely to cause significant harm. As far as medical ethics theory goes, the justifications of the High Court and the European Court of Human Rights are comparatively uncontroversial.

In America, however, numerous state laws explicitly state that quality-of-life determinations and decisions about withdrawing life-sustaining care must come from the patient, his or her family, or another available surrogate, as in New York’s Family Health Care Decisions Act. In clinical practice in the U.S., ethicists often encounter cases in which the care team thinks that life support should be turned off for the same reasons cited by the British and European courts in Charlie’s case. But as long as there is an available surrogate decision maker, no one other than that individual can decide to withdraw life support.

In the American system, clinicians can decline to offer a treatment. They can decide, for example, not to resuscitate a patient or not to offer dialysis if they believe it will cause more harm than good. Clinicians cannot, however, withdraw life support without the consent of a decision-maker. In contrast, such decisions in England have largely been left to courts to decide.

Charlie’s case is somewhat complicated by an extra safeguard in British law. Under the Children Act of 1989, patients in Charlie’s situation can be assigned their own independent legal representative to ensure that their interests are met, rather than the interests of their families. Charlie’s guardian agreed that life support should be withdrawn, generating a complex legal case involving the hospital, Charlie’s appointed legal guardian, and his parents.

The case may trouble many Americans because our system essentially holds that only the patient or a surrogate that he or she has chosen has the final say in such decisions. Institutions might sue for guardianship, say to ease discharge planning or to get access to further treatment, but never to withdraw life support if a surrogate is available to make that decision.

Charlie Gard’s case raises significant ethical questions about health care, experimental treatment, quality of life, and end-of-life decision-making. It is a sad reality that families all around the globe must confront such terrible situations every day.

The case is also far from over: The hospital has asked the High Court to reconsider Charlie’s situation as more evidence for experimental treatments has been made available. As we watch it continue to unfold, it is crucial to consider the ethical frameworks involved and to remember the sharp legal distinctions between the American and British systems.

Charlie’s case also raises serious questions about the authority of states to enforce ethical standards based largely on medical speculation. We can never be completely certain of clinical outcomes, so can a state be justified in determining when a life will end? While we might be suspicious of any legal body determining the manner of someone’s death, it’s important to keep in mind that such decisions are based on perhaps the most essential and cherished element of ethical care and human concern: the alleviation and minimization of suffering. We can only hope that Charlie, his family, and everyone in similar positions receive help with that burden.

Michael S. Dauber is a bioethicist who has served as a clinical ethicist and a member of an institutional review board.