THE CULTURE OF DEATH-Catholic Bioethicist: Authorities ‘Usurped’ Role of Charlie Gard’s Parents

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The culture of death has poisoned the relationship of trust that should bind physicians, patients and loved ones.

By Joan Desmond, EWTNNews, 7/8/17

Earlier this year, a British hospital asked a court to decide whether it was legal, and in the best interests of Charlie Gard, to remove the terminally-ill infant from life support — even if that decision violated his own parents’ wishes.

Justice Nicholas Francis of the Family Division of the High Court of Justice ruled in favor of the hospital. Citing the “unanimity of experts” regarding Charlie’s irremediable brain damage, he concluded that the hospital could withdraw all treatment, except for palliative care, and so let the infant “die with dignity.”

Then, even after Charlie’s parents lost their final appeal in the case, the hospital has stood by a puzzling decision that appeared to have little to do with the infant’s medical treatment: the hospital still refused to release Charlie to his mother and father, who hoped to take him for experimental treatment in the U.S., but who also acknowledged that they would like to bring him home, if only for the short period remaining of his life.

Today, I asked John Haas, the president of the National Catholic Bioethics Center, which advises Catholic dioceses and heath care services, for his assessment of the Charlie Gard case, and he outlined several important points.

First, the “courts (and the hospital) have immorally usurped the authority of the parents,” said Dr. Haas.

“Treatment decisions are to be made by the patient. If the patient is incompetent, a proxy makes decisions on behalf of the patient—in this case, the parents of Charlie. If the parents had actually become abusive of the child, custody could be removed from them and the child would become a ward of the state with the state making decisions on its behalf. But that is not the case here.” Wesley Smith explores this theme in detail in a penetrating article in First Things.

Second, we are not required to pursue extraordinary treatment, but patients—or if they are minors, their patients—make that decision.

Directive 57 of the U.S. Bishops’ Ethical and Religious Directives—guidelines that provide a clear moral framework for Catholic hospitals dealing with complex cases—states the following: “A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”

“Note, it says ‘in the patient’s judgment.’ In this case the proxies for Charlie, his parents,” said Haas.This point is key. Some secular media reports on the Charlie Bard controversy have wrongly suggested that Church authorities are divided on whether it is ethically right to pusue experimental treatment or acknowledge the reality of imminent death and cease all treatment.  In fact, church teaching is clear: Charlie’s parents are not obligated to pursue experimental treatment, or other extraordinary efforts, but they have the right to make that call.

Third, disputes between health care providers and patients in the United Kingdom are resolved by the courts. “It is my understanding that that is the law there,” said Haas. “It is not here [in the U.S.], even though the courts often become involved.”

Indeed,  while Boris Johnson, the British foreign secretary,  contends that expert medical opinion justifies the British hospital’s position,  a column in the New York Times by Elisha Waldman, the incoming associate chief of the division of pediatric palliative care at Lurie Children’s Hospital of Chicago. takes a very different position.

“As unpredictable as these diseases can be, what’s reliable is that with truly rare exceptions, parents are the best advocates for their children. This is a basic tenet of pediatric medicine,” said Waldman. “There are many instances in which doctors may feel that they themselves would make different choices, but that doesn’t mean that the parents’ choices aren’t in a child’s best interests.”

Charlie, she emphasized, is “the child of Connie Yates and Chris Gard and they know best what is best for their terminally ill son. The hospital, despite its victories in court, should defer to Charlie’s parents.”

Fourth, “this is a complicated case.” Dr. Haas did not explain this point in more detail, but this statement seems plain enough.

On the one hand, some lay Catholic leaders in the UK have challenged the hospital and court’s handling of the case.

“Charlie should now be moved to a facility where he can be cared for with the support and love of his mother and father,” Lord David Alton, a Catholic pro-life leader and a member of the House of Lords, told me in an email message. He suggested that the U.S. experts who are prepared to treat the infant might be flown to the UK, “if the resources are available.”

And if Charlie cannot be treated, “then he should be allowed a peaceful end in the arms of his parents.”

On the other hand, as noted in Christopher Altieri’s thoughtful commentary posted on Patheos, the “positions of Charlie’s physicians [who] refuse to participate on the grounds that they would be uselessly inflicting harm—in the form of pain, at least—on their patient: in essence, that they would be violating their oath as healers,” also deserve serious consideration.

Why, then, have Charlie’s parents received a flood of support? Christopher Altieri summarizes my own conclusion: “In the midst of all this, there is a crisis of confidence—one might even say a crisis of faith—in the medical profession, arising from the direction in which medical ethics throughout the West have turned.

“Essentially, the medical profession—sometimes under the pressure of politicians and bureaucrats, sometimes more proactively—has distanced its practice from the core conviction that life is a basic and irreducible good, to which patients have an inherent and inalienable right, which right must be defended at all costs and against every usurper—even the one who possesses the good, hence the right to it.”

Last month, the British Medical Association (BMA), the nation’s largest doctors’ union, endorsed abortion on demand, in a controversial vote that sparked protests among pro-life activists and physicians. Parliament has yet to vote on this matter, but the BMA’s stance provides further context for the Charlie Gard debate. Yes, the culture of death is poisoning the relationship of trust that binds physicians and their patients, and the patients’ loved ones.

The Charlie Gard case, and the strong support his parents have received from around the globe, should serve as a warning shot for physicians who lack the courage or conviction to stand up for the sanctity of life, and for the natural right of parents to assume responsiblity for the life and care of their children.