by Johan Bester MBchB, PhD, MPhil and Eric Kodish MD
The case of Charlie Gard, a terminally ill British 11-month-old who passed away Friday, is deeply tragic for all involved: the parents who must try to come to terms with the fact that no curative therapy existed for their child; the physicians and nurses who have dedicated their lives to helping children and must continue to do what they think is best for the patient; and the judges who use phrases such as “heaviest of hearts” when handing down their judgments.
The tragedy is compounded when such cases become politicized, as has happened with Charlie.
Charlie was born with encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), a rare genetic illness. Charlie suffered respiratory failure, muscle weakness, congenital deafness, encephalopathy, and eventual structural brain damage.
Charlie’s parents hoped to pursue an experimental treatment in the U.S. – nucleoside therapy – which has never been tried for Charlie’s variant of MDDS, but has shown some extension of life expectancy in patients with a different genetic variant of MDDS.
However, doctors at London’s Great Ormond Street Hospital did not believe this to be in Charlie’s best interest, and sought permission from the British courts to withdraw life-sustaining treatment and move Charlie to palliative care, where the focus would be on ensuring that his last days would be as comfortable as possible.
A lengthy series of court cases followed. At each stage – at the High Court, the Supreme Court and to the European Court of Human Rights – judges agreed that life sustaining treatment be withdrawn, that a palliative care approach should be followed, and that nucleoside therapy would be inconsistent with Charlie’s best interest. At this point, Charlie was considered to be terminally ill.
The court judgments explicitly rejected financial considerations as a basis for making the judgment, focusing instead on evidence of benefit versus harm and Charlie’s best interest.
As news coverage of the case exploded, it did not take long for coverage of the case to take on a political and ideological tone.
President Donald Trump and Pope Francis both offered to intervene to provide continued treatment to Charlie. Not long after, Vice President Mike Pence stated in an interview that Charlie’s parents were “submitted to a government program that says, ‘No, we’re going to remove life support from your precious 11-month-old child’ because the government has decided that the prospects of their life are such that they no longer warrant an investment in health services,” and “the American people ought to reflect on the fact that for all the talk on the left about single-payer, that’s where it takes us.”
Although the leaders on the left have been largely silent on Charlie’s case, some voices from the left responded with a rebuttal; some rightly pointed out that the central consideration in Charlie’s case had always been about Charlie’s best interests. Others went further, decrying the “political vampirism” of the right and defending universal healthcare systems.
The effect of all of this is to politicize the case.
Jonathan Haidt, an ethicist and social psychologist, tells us what happens in the psychology of politics: Otherwise reasonable people adopt a team mentality, us-against-them. When confronted with a politicized issue, they instinctively choose as their team would choose, and then come up with rational arguments to defend their choice afterwards.
Reasoned dialogue becomes less possible; people form into groups, aligned with their political tribe, becoming more and more entrenched in their respective ideologies.
Politicizing Charlie means that suddenly his case ceases to be about the suffering of a boy and his parents; it has been co-opted for a political and ideological purposes, complete with a set of villains who are ready to withhold from a child and parents what are rightly theirs.
It uses the emotion around the case to galvanize people towards a specific political goal. It now becomes about us against them. The facts of the case and the suffering caused is now almost incidental to what has become a political phenomenon.
In all of this, a greater tragedy occurs.
The case is used for a purpose that has nothing to do with those whose interests are at stake. Central to this case are grieving parents and healthcare professionals and, most importantly, a sick child. Because this case has now become a political football, their interests are compromised. The parents cannot grieve on their own; their every emotion, decision, and question is broadcast in the media and scrutinized by those who have an agenda.
It is hard for parents to come to terms with the loss of a child. It is even harder when they do it in public, and as the public faces of a political agenda. In the public discourse Charlie’s best interests take a back seat to the political purpose he serves. He has become an object rather than a person.
Politicizing such tragedies unnecessarily adds pain and angst to an already heartbreaking situation. The healthcare of children should not be a partisan issue, and it should not be politicized. Wherever one is on the political spectrum, what is best for the child should be the central consideration when making healthcare decisions for children.
What can we do to avoid politicizing future cases? First, we call for media restraint. It is difficult to report nuanced ethical and legal issues in medicine in a way that clarifies rather than confuses. If this cannot be done, it should not be done. Sensationalism should be avoided at all costs.
Second, we recommend that courts, hospitals and doctors adopt policies to keep things private that should be private. This is challenging, but should be thought through carefully.
Lastly, this case and others like it underlines the place for clinical ethics consultation in hospitals. In situations like these, clinical ethicists are invaluable at the bedside and on the hospital floor. We’d like to see clinical ethics consultation be part of every hospital.
Charlie’s case was not the first to be politicized; think of other high-profile cases such as the Sciavo case. In all such cases, tragedy is made worse by politicizing it. Let us hope that Charlie’s will be the last.
Johan Bester, MBchB, Ph.D., M.Phil., is the director of Bioethics at the UNLV School of Medicine, University of Las Vegas, Nevada. Eric Kodish, M.D., is a professor of Pediatrics and Bioethics at Cleveland Clinic’s Lerner College of Medicine.