While the Church “certainly doesn't teach that people should be kept alive 'at all costs,'” he said “the question isn't so much about knowing ‘when to let go’ but about the moral responsibility of parents wanting to choose when to make that decision for themselves.”
Harnwell reflected that Church teaching says “the primary role of medicine is to heal, and then to alleviate suffering when being healed is no longer a possibility.”
Harnwell spoke after the parents of British infant Charlie Gard announced July 24 that they decided to end their court case seeking further treatment for the terminally-ill child.
Gard, 11 months, suffers from a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and is believed to affect fewer than 20 children worldwide. He has been in intensive care since October 2016, and has suffered significant brain damage due to the disease; he is currently fed through a tube, requires a ventilator to breathe and is unable to move.
His case first garnered international attention when his parents, Connie Yates and Chris Gard, were denied the right to transfer him to other hospitals by U.K. courts, despite having raised funds for an experimental treatment from an American doctor. They appealed to the European Court of Human Rights, but were denied a hearing.
Judges argued that prolonging Charlie's life would inflict unnecessary suffering on the infant, and gave doctors at London's Great Ormond Hospital, where Charlie is being treated, permission to take him off life support without his parents' permission.
His life support was to be turned off at the end of June; however, the courts granted an extension so Charlie's parents could have more time with their son.
After international leaders including Pope Francis and U.S. President Donald Trump voiced their support for Charlie and his parents, the courts allowed medical experts to conduct additional tests on the infant.
American neurologist Dr. Michio Hirano, who had been willing to offer Gard nucleoside bypass therapy, while acknowledging it would not necessarily heal him, traveled to London for the tests. However, after seeing a new MRI scan this week, Hirano declined to offer the therapy.
The child's life support is expected to be pulled in the next few days, just two weeks shy of his first birthday.
In a tearful statement after the announcement of their decision to drop their court case, Charlie's parents said, “this is one of the hardest things we will ever have to say and we are about to do the hardest thing that we will ever have to do, and that is to let our beautiful little Charlie go.”
“The American and Italian team were still willing to treat Charlie after his recent brain MRI and EEG performed last week, but there is one reason why treatment cannot now go ahead, and that is time,” they said.
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“A whole lot of time has been wasted. We are now in July, and our poor boy has been left to lay in a hospital bed for months whilst lengthy court battles have been fought. Tragically, having had Charlie's medical notes reviewed by independent medical experts, we now know that had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy.”
In addition to the devastating end to this story, Harnwell pointed to a larger debate society faces.
This, he said, is the debate on whether the state ought to be “the health care provider of last resort,” stepping in as a third party who gets to decide where it's limited resources will be spent.
Inevitably, under a socialized model “it will be the state that decides when to divert its limited resources to other patients it feels will benefit more.”
Harnwell stressed that while he didn't want to “make a political point out of other people’s terrible tragedy,” there is a “very real debate to be had” on the issue.
For Harnwell, Charlie Gard's case is a perfect illustration of the risks involved in allowing third parties “to assume the role of providing our own safety net.”