The case of dying English baby Charlie Gard shows how much public opinion about life and death issues is swayed by emotion rather than thoughtful deliberation.
Charlie was born with mitochondrial DNA depletion syndrome. This condition is so rare that there are probably only a dozen children in the world who are affected. The child cannot breathe on his own, cannot move, and is probably profoundly intellectually disabled.
His parents, Connie Yates and Chris Gard, understand that their son will probably only live a short time, but want to give him every chance. They have found a professor of neurology in the United States, identified only as “Dr. I” in court documents, who is offering an experimental treatment which has given them a smidgen of hope. Even Dr. I agrees that the probability is very low. The UK’s National Health Service will not consider paying for this, so the parents have resorted to crowd-funding. With donations from tens of thousands of people, they have raised £1.3 million ($1.7 million).
But Great Ormond Hospital, where Charlie is being cared for, backed by the UK government, will not let the baby go to the United States. The doctors argue that it is Charlie’s best interests to die soon and in the hospital.
There are several issues in this case which make it impossible for the public, journalists, and bioethicists to reach an easy conclusion. Is Charlie suffering? Should his expected quality of life determine whether he is kept alive? What are his “best interests”? Who makes the decision on whether to seek experimental treatment, the parents or the doctors? Can doctors in the NHS be trusted?
By and large, the media, especially in the United States, are giving very sympathetic coverage to the parents’ case. This is expressed very touchingly on their GoFundMe page:
We just CAN'T let our baby die when there is something that might help him! We won't give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else.
It’s not just a conservative/progressive, right/left issue. On the side of Charlie’s parents are Pope Francis and President Trump, but also – amazingly -- the world’s leading utilitarian philosopher, Peter Singer, and a like-mind colleague, Oxford’s Julian Savulescu. The latter argue from a cost-benefit perspective:
It is a value judgement (not a scientific judgement) whether the pain of three months of intensive care (minimized by sedation and analgesia) [in the US] is worth taking to gather more information about the prospect of improvement with experimental therapy.
This is an issue on which there is reasonable disagreement. Many doctors and ethicists believe it is not, some doctors (such as Dr. I, and now six other experts) and some ethicists believe it is worth taking this chance, even if it is a slim one.
In the face of such reasonable disagreement, we believe that we should accede to the wishes of the parents and err on the side of a chance of life. The alternative is certain death.
Now let’s take a look at a controversy at the other end of life. Noel Conway, a 67-year-old former university lecturer with motor neuron disease fears being entombed in his own body and is requesting permission for assisted suicide or euthanasia, both of which are illegal in the English legal system. His condition is incurable and he will probably die within the year. Yet coverage of his case in the British media has been very sympathetic.
How can the media support an infant fighting to live and also support an adult with considerably better “quality of life” who wants to die? Charlie Gard should be allowed to live as long as possible even though he has terrible “quality of life”, but Noel Conway should be allowed to die as soon as possible even though he has relatively good “quality of life”. “Support life at all costs” and “support death at all costs!” are contradictory theories.
The media just doesn’t have the patience or the intellectual wherewithal to puzzle their way through complex cases like these. Instead, it reacts according to gut feel. And then, to heap contradiction upon contradiction, they criticize opponents of same-sex marriage and transgender rights for irrational arguments based on “repugnance”.
Just to demonstrate how impoverished is the elite media’s reasoning about life and death issues, consider an op-ed published in the New York Times this week. Without mentioning the Charlie Gard controversy, it was obviously an oblique commentary on it. In it, a father remembered cradling his newly born son as he died painfully from the effects of Trisomy 18, another rare genetic condition. To heighten the emotional impact, it was written in the second person. The author argues “Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of a painkiller?” And in his shocking conclusion, he tells himself, “You should have killed your baby.”
In other words, at the same time as the Pope and Peter Singer were united in arguing for Charlie’s right to live, the New York Times was supporting infanticide.
In any case, the op-ed’s relevance to the debate is questionable. The incident may have taken place as long as 30 years ago, not last week. Palliative care has improved astronomically since then. And despite the father’s obvious anguish, he is not your average Joe. He is a professional philosopher whose main interest is showing that humans are not morally superior to non-human life forms, and possibly not to robots either.
But none of that seemed relevant to the New York Times editorial team. The op-ed was powerfully emotional and that was all that mattered.
Quality journalism helps people to think. Yellow journalism ignores the facts and puts a blowtorch to their emotions. And that, at least in the right-to-die debate, is where the New York Times has sunk to.
Michael Cook is editor of MercatorNet, where this article first appeared.