This is the full version of the article I wrote last month for the New York Times on the contrasting court cases of Charlie Gard and Noel Conway and the moral confusions they reveal about our attitudes to death. (I cannot publish my NYT articles on Pandaemonium until the month after they are published in the newspaper.)
Charlie Gard died last week. It was a tragic case in which, as I suggest, there was no single right answer; there were valid arguments on both sides. If I was to write the article now I would emphasise far more that the prospects of the alternative treatment that Charlie’s parents sought were considerably weaker. But my argument about moral issue at the heart of the case – that ‘the state should acknowledge the difficulties in defining their best interest… [and] be particularly cautious about sanctioning death’ – remains valid.
Two court cases in London expose the difficulties we have in thinking about what it means to die with dignity. In one, the parents of a seriously ill baby, Charlie Gard, are pleading for judges not to order their son’s life support be turned off, but instead let him travel to the United States for experimental treatment. In the other, a terminally ill man, Noel Conway, suffering from motor neuron disease, wants the court to allow doctors to help him end his life at the moment of his choosing.
The tragic case of Charlie Gard has made international headlines, with both Pope Francis and President Trump offering their help. Charlie suffers from a rare genetic condition that prevents his cells from producing sufficient energy to maintain normal bodily functions. His major organs are failing and, according to Great Ormond Street Hospital, where he is being cared for, he has suffered ‘catastrophic and irreversible brain damage’. He is on life support, which doctors believe should be switched off.
Charlie’s parents, Connie Yates and Chris Gard, strongly disagree. They have pinned their hopes on an experimental treatment called nucleoside therapy. An American neurologist, Michio Hirano, of Columbia University Medical Center, has offered to treat Charlie, and his parents have raised about $1.7 million to fly him to America and pay for the treatment.
The disagreement between Charlie Gard’s parents and the London hospital has ended up in the courts. Judges, both in Britain and at the European Court of Human Rights, have sided with the doctors.
Some commentators have presented the case as one of religious norms about the sanctity of life pitted against a secular ‘throwaway culture’ in which notions of ‘intrinsic worth are falling by the wayside’. Inevitably, the issues are more complex. The moral theologian Lisa Fullam has drawn on Catholic teachings to defend the decision to end Charlie’s life, while the philosophers Julian Savulescu and Peter Singer, both noted secularist thinkers, have questioned the court rulings.
What makes the case particularly intractable is that there are valid arguments on both sides. Some moral questions have no single right answer. But if there is reason on both sides, there is also reason to question the judgments of the courts.
The courts have decided that it is not in Charlie Gard’s ‘best interests’ to receive further treatment and that he should be permitted ‘to die with dignity’. Certainly, there are cases in which treatment may not be advisable — when, for instance, the possibility of success is vanishingly small, or when it may involve too great a degree of pain and suffering. One such condition, Julian Savelescu suggests, is severe dystrophic Epidermolysis Bullosa, a congenital disorder in which the skin relentlessly peels off, causing extreme pain and infection, leading usually to death in the first year of life. To keep such a child alive would seem to most people to wrong because it would merely inflict pain for no benefit.
Charlie Gard’s situation is different. According to Dr. Hirano, there is about a 10 percent chance of the treatment succeeding (to the extent that the child might gain some muscle strength and improved brain function). That may not be very high, but neither is it negligible. Charlie does not appear to be in severe pain, nor will he be as a consequence of the treatment.
Usually, a decision about a child’s best interests involves two alternative futures. Is he better off with his mother or father after a divorce? Is it in his interests to stay with parents who may be having difficulties, or to be taken into care?
In Charlie Gard’s case, though, the choice is between a possible future and a definite non-future. There is no future after death, and if life support is ended, Charlie will have no interest to debate.
It is more than six months since the courts first heard the case. A reasonable decision, and one that acknowledges the complexities, might have been, as Julian Savulescu suggests, for the court to have accepted at the start that Charlie could receive treatment for a set period (say, three or six months). This would have permitted the treatment to be assessed, while all parties could have agreed that if the treatment did not succeed, the life support would be turned off. We would have known by now whether Charlie did possess an alternative future or whether his interest does lie in death.
In Charlie’s case, the judges decided that it is in his interest to die even with a possibility of treatment. Noel Conway, in contrast, wants to be allowed to die in dignity, but the law will not permit it. His motor neuron disease is incurable, and he is not expected to live beyond 12 months. His condition is painful, and will become more so. He wants doctors to be able to give him a lethal injection when he decides that it is time to end his life. Under British law, it would be a criminal offense for a doctor to do so.
Mr. Conway’s case is the latest in a series of court challenges in Britain by terminally ill people who want to have the right to die on their terms and to have someone assist them in doing so. In 2015, Parliament rejected a bill modeled on the law in the state of Oregon that would have legalized assisted dying. Critics of the law worried that it would force doctors to abandon the Hippocratic oath, create a situation in which people might be pressured to take their lives and normalize suicide.
As in the Charlie Gard case, there are reasonable arguments on both sides of the debate. But it is difficult to divine the moral logic of insisting that Charlie must die with dignity, despite there being a possible treatment, and against the desperate pleas of his parents, while refusing to allow a terminally ill, morally competent individual that same right.
A rational, compassionate approach would surely accept that those able to exercise moral autonomy should be able to help determine what lies in their interests and how best to die with dignity, and that in cases in which individuals are unable to exercise autonomy, the state should acknowledge the difficulties in defining their best interest. It should also be particularly cautious about sanctioning death, especially when the experts are divided and parents are opposed. It is a measure of our moral confusion that in Britain lawmakers and the courts have decided the very opposite.
The paintings are both ‘The Judgment of Solomon’, by Raphael and Giorgionne respectively.