Charlie Gard and the morality of dying

The tragic case of Charlie Gard, a terminally-ill 11-month-old British boy with a rare, incurable genetic disease, has caught the attention of presidents, religious leaders, medical ethicists and pro-life activists the world over.

The case has also garnered significant traction in the Catholic community because of the many issues that Charlie’s story raises that pertain to parental rights, the appropriate role of public authorities in private health care matters and the complex moral medical decisions that families often have to make when a loved one is near death.

“The fact that the hospital is not even allowing the child to be discharged to the parents, I think, has struck a chord with a lot of folks,” said Greg Schleppenbach, the associate director of the U.S. Conference of Catholic Bishops’ Secretariat of Pro-Life Activities.

Schleppenbach told Our Sunday Visitor that Catholic moral teaching holds that parents are the ultimate decision-makers for their children’s medical treatment, unless there is incontrovertible evidence that they do not have their children’s best interests at heart.

Case history

Charlie’s parents, Chris Gard and Connie Yates, are fighting to keep their infant son on life support so they can take him to the United States for experimental treatment. For months they have been waging a legal battle against Great Ormond Street Hospital in London, which argues that it is in Charlie’s best interests to be taken off life support because no medical treatment is likely to help him and prolonging his life is likely to cause him undue suffering.

Thus far, the courts have sided with the hospital. Having lost an appeal to the U.K. Supreme Court, Charlie’s parents petitioned the European Court of Human Rights, which ruled in late June that the hospital could discontinue life support.

Originally scheduled to have his life support turned off on June 13, Charlie is still breathing with the help of a ventilator. The British court systems granted extensions while the case progressed. In early July, England’s high court scheduled additional hearings at the hospital’s request to review new evidence.

On July 17, Michio Hirano, a professor of neurology at New York’s Columbia University Medical Center, visited the Great Ormond Street Hospital to examine Charlie and meet with other medical experts involved in the case. According to published reports, Hirano says an experimental therapy he is developing could help Charlie, who was born with a rare mitochondrial disease that results in muscle weakness and severe multi-organ damage.

Reuters reported that Hirano believes there is between an 11 and 56 percent chance that the therapy would improve Charlie’s muscular strength, and that there is a “small but significant” possibility it could also help his brain function. If the British courts allow Mirano to treat Charlie, his family has already raised more than $1 million in private donations to cover the expenses of transporting Charlie to the United States.

Care at the End of Life
“Those whose lives are diminished or weakened deserve special respect. Sick or handicapped persons should be helped to lead lives as normal as possible. ...

The likeness of God

Charles Camosy, a moral theologian at Fordham University who wrote a book on situations such as Charlie’s medical case — “Too Expensive to Treat?: Finitude, Tragedy, and the Neonatal ICU” (Eerdmans, $18) — told OSV that examining the issue in light of the Church’s social teaching “is complicated.”

“The first thing is that Charlie Gard is made in the image and likeness of God in precisely the same way everyone reading these words is,” Camosy said. “We may never aim at his death — either by action or omission — as if his life is not a good thing.”

Camosy added: “We can, however, remove burdensome treatment that is not providing a benefit, again, as long as we are not aiming at his death. The vent which is helping him breathe is, however, not an example of this because it is not very burdensome and it is the very thing keeping him alive.”

Camosy argues that the British hospital essentially wants to kill Charlie via “euthanasia by omission” because the physicians believe his life is no longer a benefit to him. The USCCB’s Schleppenbach added that for the hospital not to allow Charlie to be transferred elsewhere for experimental therapy seems “unprecedented and frightening.”

“While there may be no moral requirement for the parents to pursue extraordinary care, the fact is the Church still doesn’t say that there is a moral requirement not to do extraordinary treatment,” Schleppenbach said.

The Church’s teaching on medical care, as outlined in papal documents and the bishops’ health care directives, holds that a gravely ill patient and his or her caregivers can weigh the burdens and benefits when deciding on potential treatments. For example, a terminally ill cancer patient with days or weeks to live can refuse treatment if they believe the treatment would be too burdensome while not adequately extending their life. There is no requirement in Catholic social teaching that a gravely ill patient’s life has to be extended at all costs.

“That’s letting them go to God naturally,” said Sister Carol Keehan, the president and CEO of the Catholic Health Association of the United States.

Best interests

Sister Keehan didn’t comment specifically on the Charlie Gard case, but she told OSV the Church’s end-of-life care respects a patient’s autonomy and one’s obligations to make medical decisions that are respectful of life while being mindful of the benefits and burdens of treatment.

“We have a responsibility to do everything we can to be supportive physically, mentally and spiritually to the patient,” Sister Keehan said.

“That means pain management. That means the dignity of the patient. That means allowing the patient to have autonomy and the right to make certain decisions.”

Sister Keehan said the Church’s teaching on care for the dying is also a safeguard against the “throwaway culture” that would devalue the lives of the gravely ill and that Pope Francis has spoken out against. In the Charlie Gard case, many see the hospital deciding that a poor quality of life warrants removing a patient’s life support as a dangerous symptom of that culture.

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“This is exactly the kind of case where parents acting in the best interests of their children ought to be given the final word,” said Robert Destro, a law professor at The Catholic University of America.

In 2005, Destro argued in court on behalf of former Florida Gov. Jeb Bush’s unsuccessful efforts to preserve a state law that would have kept Terri Schiavo alive with a feeding tube. Destro echoed other Catholics’ concerns that the National Health Service is usurping the rights of Charlie’s parents.

“In the NHS, people really don’t have any control over what kind of treatments they get,” Destro said. “So the question becomes: Is the NHS making these decisions in Charlie’s best interests? Or is the NHS making these decisions in NHS’s best interests?”

Brian Fraga writes from Massachusetts.