When law subverts health proxy
The recent Charlie Gard case unveils a number of disturbing bioethical problems. The most serious is how parents and patients can be forced to cede control over care to physicians, hospitals and lawyers. The parents of Charlie were particularly vulnerable because of the manner in which British law functions, especially under their national system of healthcare. The British are proud of their healthcare system, but it gives a great deal of authority to experts who can be subject to political and ideological factors that have little to do with what is best for the patient.
Nonetheless, the facts of the case available from media reports are not particularly favorable to the parents, either. Charlie could have been allowed to pass at any time during his ordeal, for he was under extraordinary measures of treatment, combined with a virtual certitude that he would never improve (there is disagreement between the parents and Charlie’s physicians whether earlier use of research protocols would be beneficial). Catholic teaching holds that extraordinary treatment measures may be attempted, though they are not obligatory. If the ventilator had been removed at the parents’ request, Charlie’s death would not have been caused by them or the hospital staff, but by the underlying condition from which he suffered.
Yet a person is also entitled to pursue extraordinary treatment measures, if he desires to do so. In the case of Charlie, this decision fell to the parents. They asked for the freedom to pursue whatever measures might be available to prolong Charlie’s life, even if, in the eyes of the hospital and the physicians, they were very unlikely to succeed. In fact, an experimental procedure was proposed by a physician in the United States, but upon examination, he had to concede that Charlie was not a good candidate. In the end, the judge and the parents agreed with the hospital that further treatment would be futile. From a moral perspective, the question was whether the measures that the parents favored exceeded what the Church would understand to be extraordinary treatment. Were the parents basing their judgments on unreasonable hopes and expectations?
Perhaps. Parents, of course, desperately want to preserve the lives of their children. Should they have had the opportunity to try questionably beneficial measures in the case of Charlie Gard? The legal landscape in the United States is very different from that of Great Britain. If this question had been posed to an American judge, the decision would likely have gone in the parents’ favor. They would have had a chance to try, though it is highly unlikely that the outcome would have been any different.
What is concerning about the aftermath is how swiftly the parents’ desire to care for their loved one was overruled and frustrated by the authorities. This is an inherent danger with any nationalized healthcare system, which is one of the reasons why some opposed the Affordable Care Act here in the United States. The laws of the state then set the standard of care for patients, and these laws, as creations of the political order, can vary depending on who holds power and the prevailing cultural norms. The rise of physicianassisted suicide and euthanasia within certain states has already affected the presentation of “treatment options” to dying patients.
Although the parents of Charlie may have been unrealistic in their views of what might be done to save his life, we should share their regret and frustration that they were forbidden to play a role in the final decisions. Nothing can be more heartbreaking for parents than to find their own natural instincts suppressed. This is all the more troubling when decisions are handed down by judges, hospital administrators, and those who consider themselves the reigning cultural experts of the day. The more the power of medical decision-making is handed over to these forces through legislative enactments and political maneuvering, the more patients, surrogates, and family members will find themselves unable to take measures that they believe in their hearts are best for their loved ones.
EDWARD J. FURTON, M.A., PH.D., is an ethicist at The National Catholic Bioethics Center (Philadelphia), director of publications, and editor-in-chief of NCBC’s award-winning National Catholic Bioethics Quarterly