Experimental treatments, decision making in the Charlie Gard case

August 16, 2017

Charlie Gard, the British child at the center of an international debate about legal and medical ethics, died July 28 from a rare genetic condition.

Commentators on the case have been quick to take sides with one of the parties (Charlie’s parents, Charlie’s hospital or the British court system) against the others.

Media outlets attempted to link Charlie’s case to larger political issues such as trends toward legalizing euthanasia or “physician-assisted suicide” or to the use of an improper “quality of life” ethic in medical decisions.

While these issues are very real — and while there are troubling aspects to this case from a policy and ethical perspective — such efforts ignore many of the nuances involved in treating real patients and that are essential to any discussion of Catholic health care principles.

What follows is not an attempt to exhaust all aspects of the case, but to discuss aspects that have not been covered prominently in the media.

Decision-making authority

Many commentators believed Charlie’s doctors (and the British court system) had improperly usurped the authority of Charlie’s parents in seeking to discontinue life-support during the final stages of his illness. One editorial asserted, “the once-assumed principle of medical ethics — that parents decide what is in the best interests of their minor child — is under threat.”

From a Catholic moral perspective, it is true that parents have authority to determine what health care is in their child’s best interests. But this fact alone does not end the inquiry.

The Church does not envision a doctor-patient relationship in which one party holds all decision-making authority and the other must accept those decisions without question.

Rather, the Church’s Ethical and Religious Directives for Catholic Health Care Services (ERDs), promulgated by the U.S. Conference of Catholic Bishops and applicable to Catholic health care institutions and providers, envision the relationship as one of partnership and mutual decision-making.

The aim of the relationship should be the maintenance or restoration of health or, where this is not possible, the provision of comfort and support.

Should a physician have the right to refuse a requested treatment, especially in light of a parent’s request? As Catholics, there are many instances in which we desire our physicians to have just such rights. Significant legislative and legal battles have taken place throughout the U.S. and elsewhere concerning the healthcare provider’s right to refuse treatments such as prescribing contraceptives, performing abortions and sterilizations, and participation in “sex-reassignment” procedures and therapies.

We inherently feel that physicians have a right and a responsibility to treat their patients ethically and with compassion, which right must include not providing treatment in some instances.

Ethics of discontinuing treatment

What can be said about the ethics of Charlie’s physicians’ request to discontinue treatment? A common assertion equated the request to discontinue life-support with euthanasia.

To evaluate the doctor’s actions, we must examine the distinction between ordinary and extraordinary (or proportionate/disproportionate) medical care. Catholic principles hold that individuals (or, in the case of children, their parents) have an obligation to use ordinary means to preserve life and health. Ordinary means are defined as those treatments offering a reasonable hope of benefit and which are not excessively burdensome (painful, expensive, etc.).

Contrariwise, a person (or his guardian) has no moral obligation to undergo disproportionate treatments to preserve life (i.e., those that have little or no hope of benefit or which are particularly painful or expensive).

Catholic medical ethics follow neither utilitarian principles (allowing withdrawal of treatment for those deemed to have a low quality of life) nor principles of vitalism (the insistence on maintaining life even when the care used is futile or potentially harmful).

Instead, a middle ground is to be followed that recognizes both the inherent dignity of each human life as well as the finite nature of that life. It is possible then that both Charlie’s physicians and his parents were acting from legitimate moral considerations, though their conclusions were opposed.

Ethics of experimental treatment

U.S. physicians offered an experimental treatment, nucleoside bypass therapy, which purportedly carried a slim chance of improving Charlie’s condition. Despite media commentators’ speculation, the fact remains that almost no one — perhaps not even those who would have administered the experimental treatment — can say with certainty whether the treatment would have helped Charlie.

Are there ethical considerations in attempting an experimental treatment? Experimental treatments for therapeutic purposes (as in Charlie’s case) are generally licit. However, from the perspective of Catholic medical ethics, two caveats are essential. First, in experimental settings, the preference is to choose those subjects that are least vulnerable (e.g., those that can voice their own preferences).

Second, while it would nonetheless be ethical to prescribe experimental therapies for Charlie (again, assuming some possibility of success), it is also true that, according to principles of extraordinary care, it would also be ethical to decline to prescribe, or to undergo, such therapies.

The need for prudence

The number of unknowns in Charlie’s case is significant. Our limited access to information through media sources renders impossible a full understanding of the parties’ motives. 

A central concern of Catholic medical ethics is the evaluation and care for each individual, as an individual, which generally precludes broad generalizations. Many have been quick to pass judgment on Charlie’s physicians, his hospital, the British Court system, or even his parents.

While it is true that there are trends toward euthanasia and a utilitarian disregard of the weakest human lives, there is — by and large — little evidence that the players in this case had bad motives and, instead, that all involved struggled to do the best for Charlie.

In such a situation, perhaps the best course is to remain mindful and vigilant, but also to exercise prudence and withhold judgment, especially in the absence of good evidence. 

And, most important, to keep in prayer those patients and medical professionals charged with navigating these complex issues daily. 

Julie Fritsch is the director of the Archdiocesan Office of Pro-Life Activities.