Lessons from Charlie Gard

Archbishop Aquila

After living one week short of a year, Baby Charlie Gard passed on to eternal life on July 28th. His brief life and the court battle over his treatment should move us to pray for him and his family and to reflect on the lessons it holds for the ongoing health care debate in our own country.

For those of you who are unfamiliar with the story of Charlie Gard, he was an almost one-year-old English boy with a rare genetic disorder called mitochondrial DNA depletion syndrome. The disease damaged his brain and left him unable to move his arms or legs. Over the last few months, Charlie’s parents had to appeal to a series of courts to prevent his doctors from removing him from a ventilator and to allow their child to be admitted to an experimental clinical trial in the U.S.

In Britain, if the parents of a minor or the patient himself disagrees with the doctors about treatment, the disagreement is settled in the court system. This means that the patient is at the mercy of a judge. Charlie’s mother, Connie Yates, described how this resulted in the denial of their request to bring their son home for his final days. She told Sky News, “We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way. We’ve had no control over our son’s life and no control over our son’s death.”

When Pope Francis heard about the battle over Charlie’s care, he said that he hoped his parents’ wish to “accompany and care for their child” would be respected to the end. Unfortunately, as time and the court battles went on, the damage to his body reached a point that meant the clinical trial in the U.S. was no longer a possibility. And in the end, Charlie was not allowed to go home to die. Instead, the judge ruled that he would be taken to a hospice, where he would be removed from a ventilator and subsequently pass away. Much to the dismay of his parents, this is what happened on July 28th.

As we consider the future of health care in our country and as some politicians call for a government-run system, we should not gloss over the tendency for such systems to usurp the rights of parents to determine what is in their child’s best interest, and for that matter, the rights of patients to manage their own health care.

Another danger is the demand by the government for immoral procedures, such as the Health and Human Services contraception mandate that targeted the Little Sisters of the Poor and others. All too often, one sees state-run health systems make decisions based on a drive for efficiency, a patient’s so-called “quality of life,” or along ideological lines, rather than seeking to uphold patients’ inherent dignity as a human person. In the “throwaway culture” in which we live, our hearts are hardened against caring for those with disabilities and the dying.

Reform efforts for our health system should respect the rights of patients and parents to make decisions about their own medical treatment, the conscience rights of medical professionals and the principal of subsidiarity. The story of Charlie Gard makes the consequences of doing otherwise clear.

While Congress considers repealing the Affordable Care Act, it should also keep in mind that any replacement should treat health care not as a privilege, but a right founded upon the right to life and the God-given dignity of every person. The level of care we extend to the poor and sick should not be curtailed because of their financial means, health or the decisions of hospital officials.

The plight of so many people who are sick and in need of care reminds me of Emma Lazarus’ poem “The Great Colossus,” which can be found in the pedestal of the Statue of Liberty. Lazarus was a Portuguese Sephardic Jew who spent much of her time helping poor and often sick refugees as they arrived at Ward Island near New York City. She wrote, “Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!”

I pray that in the coming months our lawmakers will strive to craft legislation that places the dignity of the person at the center of health care, so that our country will continue to care for the sick and downtrodden. Let us also pray for Charlie’s family and all those who are facing medical trials. May our Father grant them peace, wisdom and fortitude.

Charlie Gard. Photo: Facebook, Charlie Gard’s Fight.

COMING UP: John Paul II, youth minister

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Pole that he was, Karol Wojtyla had a well-developed sense of historical irony. So from his present position in the Communion of Saints, he might be struck by the ironic fact that the Synod on “Youth, Faith, and Vocational Discernment,” currently underway in Rome, coincides with the 40th anniversary of his election as Pope John Paul II on October 16, 1978. What’s the irony? The irony is that the most successful papal youth minister in modern history, and perhaps all history, was largely ignored in Synod-2018’s working document. And the Synod leadership under Cardinal Lorenzo Baldisseri seems strangely reluctant to invoke either his teaching or his example.

But let’s get beyond irony. What are some lessons the Synod might draw from John Paul II, pied piper of the young, on this ruby anniversary of his election?

1. The big questions remain the same.

Several bishops at Synod-2018 have remarked that today’s young people are living in a completely different world than when the bishops in question grew up. There’s obviously an element of truth here, but there’s also a confusion between ephemera and the permanent things.

When Cardinal Adam Sapieha assigned young Father Wojtyla to St. Florian’s parish in 1948, in order to start a ministry to the university students who lived nearby, things in Cracow were certainly different than they were when Wojtyla was a student at the Jagiellonian University in 1938-39. In 1948, Poland was in the deep freeze of Stalinism and organized Catholic youth work was banned. The freewheeling social and cultural life in which Wojtyla had reveled before the Nazis shut down the Jagiellonian was no more, and atheistic propaganda was on tap in many classrooms. But Wojtyla knew that the Big Questions that engage young adults — What’s my purpose in life? How do I form lasting friendships? What is noble and what is base? How do I navigate the rocks and shoals of life without making fatal compromises? What makes for true happiness? — are always the same. They always have been, and they always will be.

To tell today’s young adults that they’re completely different is pandering, and it’s a form of disrespect. To help maturing adults ask the big questions and wrestle with the permanent things is to pay them the compliment of taking them seriously. Wojtyla knew that, and so should the bishops of Synod-2018.

2. Walking with young adults should lead somewhere.

Some of the Wojtyla kids from that university ministry at St. Florian’s have become friends of mine, and when I ask them what he was like as a companion, spiritual director, and confessor, they always stress two points: masterful listening that led to penetrating conversations, and an insistence on personal responsibility. As one of them once put it to me, “We’d talk for hours and he’d shed light on a question, but I never heard him say ‘You should do this.’ What he’d always say was, ‘You must choose’.” For Karol Wojtyla, youth minister, gently but persistently compelling serious moral decisions was the real meaning of “accompaniment” (a Synod-2018 buzzword).

3. Heroism is never out of fashion.

When, as pope, John Paul II proposed launching what became World Youth Day, most of the Roman Curia thought he had taken leave of his senses: young adults in the late-20th century just weren’t interested in an international festival involving catechesis, the Way of the Cross, confession, and the Eucharist. John Paul, by contrast, understood that the adventure of leading a life of heroic virtue was just as compelling in late modernity as it had been in his day, and he had confidence that future leaders of the third millennium of Christian history would answer that call to adventure.

That didn’t mean they’d be perfect. But as he said to young people on so many occasions, “Never, ever settle for anything less than the spiritual and moral grandeur that God’s grace makes possible in your life. You’ll fail; we all do. But don’t lower the bar of expectation. Get up, dust yourself off, seek reconciliation. But never, ever settle for anything less than the heroism for which you were born.”

That challenge — that confidence that young adults really yearn to live with an undivided heart — began a renaissance in young adult and campus ministry in the living parts of the world Church. Synod-2018 should ponder this experience and take it very, very seriously.