Right decisions, made by the wrong people

Luke Winston-Jones is a baby slowly dying at the Alder Hey hospital in Liverpool. He suffers from Edwards syndrome, a genetic condition that means that few babies survive beyond a year. Charlotte Wyatt is a baby slowly dying in the neonatal unit of St Mary’s hospital in Portsmouth. She was born three months premature, weighing just one pound, and is profoundly brain-damaged with failing lungs and kidneys.

In different times, we would have known nothing about the tragedy of these tiny lives. The anguished parents would be coping and grieving in private, amid the compassion and best medical efforts of the doctors in charge of their babies’ care. If we ever did learn of these stories, they would evoke profound sympathy for the parents, coupled with the impotence we feel in cases where nothing can be done to make it any better. Nobody would presume to ‘take sides’ on the tragedy, because there are no sides to take; and in any case who, outside of the family and the medical teams, could presume to marshal an opinion on what might be the right thing for the doctors to do or the parents to feel?

Unfortunately, the culture of our times means that the medical treatment of Luke and Charlotte, and the presumed feelings of their parents, have become issues upon which all manner of disinterested parties feel bound to have an opinion and take sides. Two recent court cases have taken the question of whether these terminally ill babies should, next time a crisis happens, be (in the words of many headlines) ‘allowed’ to die ‘peacefully’, or whether they should be kept alive artificially, through a ventilator. This apparent choice has been reported as a clash of wills between the babies’ parents and their doctors; between medical expertise and a ‘mother’s love’.

Remember that without a miracle, neither of these court cases would change the outcome of events for the Winston-Jones or Wyatt families. Whatever the judges’ ruling, the babies would still die in infancy. Rather than having a major bearing on the fate of the babies, these cases represent the transformation of a human tragedy into a grim parody of medical decision-making and parental choice, with the elevation of High Court judges to God-like figures apparently solely capable of determining the ‘best interests’ of a terminally ill child.

While there are clear differences in the plights of baby Luke and baby Charlotte, the stories of the legal battles seem essentially the same. Charlotte’s doctors, feeling that there was nothing more that they could do for this profoundly ill baby who had been in hospital since her birth almost a year ago and ventilated five times after a breathing crisis, argued that she should not be put on a ventilator in the inevitable event of another such crisis. Her parents disagreed, wanting the doctors to prolong what little life she had left. Luke Winston-Jones, whose condition is incurable, has already suffered two cardiac arrests and many respiratory arrests, and his doctors feel that to put him on a ventilator would increase his suffering to no benefit. His parents, like the Wyatts, seem to feel that this would mean giving up on their son too quickly.

The judges’ unenviable task in both cases was to choose between the judgement of the doctors and the wishes of the parents. The ruling, in both cases, will have struck many as sensible and humane – supporting the doctors’ view about the best treatment for the babies, while recognising that it is the parents who will be most affected by the loss of their child, and therefore how understandable their desire is to use any possible medical means to prolong their baby’s life. But what is striking is how little anybody will gain from the fact that such decisions have to be decided in a courtroom, and how warped a framework this provides for decisions about appropriate medical treatment.

In reporting both these cases, news headlines have used the language of winning and losing: the language of the law. ‘High Court gives doctors right to let baby Luke die’ (Daily Telegraph), ‘Ruling Should End Conflict over Baby Luke – Judge’ (Scotsman), ‘Mother wins partial victory in attempt to prolong baby’s life’ (Guardian) are a selection of those used in relation to baby Luke. Of course this is formally right – but how inappropriate words like ‘victory’, ‘conflict’ and ‘rights’ seem when applied to such cases.

What conflict can there really be between doctors who have struggled to preserve and improve a sick baby’s life for several months, and parents who have loved that baby and willed it to be better? What kind of victory is it for a mother to know that when her baby dies, as he surely will, doctors may use heart massage to try to bring him back to life for a short period of time? Since when was a doctor’s power over life and death a matter of formal rights, rather than medical expertise, resources, judgement and luck? The stark, balanced language of legal judgement sits unhappily with the situations at issue here, in which there are no meaningful choices and no real winners, simply a difference of nuance over an unhappy ending.

The implication of conflict between the doctors, parents and babies in these cases, and the arbitrary character of the final decision, is most clear in the way that the judges’ rulings were delivered on the basis of the ‘best interests’ of the child. There is something cruel about the assumption that neither the parents nor the doctors, both of whom clearly feel that they want to do what is best for their child or patient, are not capable of doing so; that the decision of what is in a baby’s ‘best interest’ has to be made by a disinterested judge with no experience of or emotional attachment to the child. We seem to be in a situation where the very people closest to a sick baby are seen as incapable, because they are so close, of making the right decision.

It is impossible, and unhelpful, to speculate on the specific decisions made along the way in either baby’s case that have resulted in them ending up in court. But the fact that they have ended up in court seems to indicate a wider breakdown of trust in the medical profession, and self-confidence on the part of doctors. Decisions that are generally made by doctors about the pros and cons of resuscitating a terminally ill, struggling patient, in a context where it is understood that doctors have the best motivations at heart, seem to be transforming into anguished discussions with relatives about putative choices about the next step to take.

When such discussions yield disagreements – which they surely would – they can no longer be resolved at a local level between all the parties who care for the child, but are projected into the glare of the High Court and subjected to all manner of abstract ethical and legal considerations. It is hard to see how this helps doctors, to whom decisions about life support and death must be hard enough without having to filter them through the lawyers; or anguished parents, for whom losing a child is hard enough without having to be intimately involved in the decision about when and how to press the button.

News headlines about the cases of baby Luke and baby Charlotte have emphasised the judges’ call to let the babies die peacefully. If only such cases were not propelled towards the High court, parents and doctors might gain more peace too.

Read on:

Will baby Charlotte’s be a ‘good death’?, by Kevin Yuill