Will baby Charlotte’s be a ‘good death’?

‘Would you, if you were a cripple, want to vegetate forever?’. Dr Tergesten, in the Nazi propaganda film Ich Klage an! (I Accuse!, 1941)

The London High Court’s decision on Charlotte Wyatt, the 11-month-old child who weighed just one pound at birth and has serious heart and lung problems, was perhaps understandable.

The NHS trust had argued that, having already resuscitated Charlotte three times after she stopped breathing, staff at the Portsmouth hospital say that she should be allowed to die if her breathing stops again – which goes against her parents’ wishes. The High Court agreed.

Charlotte Wyatt would grow up, if she grows up at all, with at best a hazy experience of life, rendered deaf and blind by brain damage, forever dependent on others for her survival. Her parents will be left with a physically and emotionally exhausting schedule of care. Above all, they deserve our sympathy. Whatever the decision had been, this is a personal tragedy for them.

But there are disturbing aspects to this decision. Not only does it privilege resource-conscious hospital trusts’ interests over those of parents, the decision, as Telegraph columnist Tom Utley sharply observed, ‘established in English law the idea that some lives are worth saving and some are not’ (1). Disabled representatives may rightly condemn the decision for this implication.

Though not rendered out of malice for Charlotte or her parents, the judgement seemed to be based on terrified imaginings rather than legal, ethical, or philosophical wisdom.

One fear is of the medical behemoth that has rendered death unnatural and, in some ways, obsolete. Rather than see the breakthroughs in medical technology as the result of human ingenuity and progress, many shake their heads at how technology has created a ‘myth of marvels’, as a morose Mary Riddell termed it in the Observer.

‘And so life gets prolonged, sometimes beyond the point of reason or mercy, for as long as drugs and science can prevail.’ Riddell sighed that children are ‘born into a world where mortality equals failure and where the presumption is for life, however pointlessly imposed and cruelly prolonged’ (2). Perhaps Riddell would bring back the days when disabled children were left on mountaintops to be devoured by predators.

There have been constant references to ‘living in a plastic box’ (or ‘oxygenated box’, as a technophobic Riddell prefers). David Lock, counsel for the hospital, used the phrase, which was repeated throughout press comment on the decision. Some, however, might find a plastic box preferable to a pine one.

Connected is the irrational zero-sum argument that there is only so much of this technology to go around. Rather chillingly, Dr Michael Wilks of the British Medical Association’s ethics committee warned BBC Radio 5 listeners: ‘Every time we give unnecessary treatment we spend NHS resources and deprive someone else of these resources.’ This is known among disabled activist groups as the ‘useless eaters’ argument. Despite the fact that NHS resources will increase by some 37 percent between 2002 and 2005, many choose not to aim towards providing resources to everyone who needs them but to divide up patients between those worthy of treatment and those unworthy (3).

Perhaps this was in the judge’s mind when he spoke of a ‘good death’. Yet the whole concept of a ‘good death’ fetishises death at the expense of experiencing life. As the late Elizabeth Kubler Ross, author of the pathbreaking On Death and Dying, argued, a death can only be good for those who experience it secondhand. It is a projection, as is the concept of ‘the blessed relief of death’, understandably felt when a loved one or friend slips away. Nor are medical staff impervious to this sort of projection. One of the doctors told the High Court that Charlotte’s suffering reached ‘an unbearable level’ (4). For whom, we might ask?

Nobody can really make an informed decision on whether death is in an individual’s best interests, as did the judge, or determine the stage at which ‘quality of life [is] deemed to be so low that it is not beneficial’, as Dr Michael Wilks put it. Regretfully, doctors and families must make grave choices regarding infants in cases like this one. Normally, they come to the same conclusion. In my view, what is objectionable in this instance is that doctors – backed up by the courts – chose to override the parents’ decision.

After all, it is the parents who would have experienced the hardships, sorrows and perhaps fleeting joys of bringing up a profoundly disabled child. They created this life in the first place, and would have put their energies and emotions into molding an infant into a person. If they were willing to take on this burden, why did the doctors and courts prevent them by falsely proclaiming Charlotte’s interests?

The job of the medical professional is to preserve life and health. Neither doctors nor the courts should judge when death is appropriate. Both should preserve and protect life without judging its value. Yet they seem to move closer towards reflecting the misanthropic speculations so current within the chattering classes. ‘Charlotte has rights too, including the right to die peacefully and not in prolonged agony’, the Guardian lectured Charlotte’s parents.

Until fairly recently, society celebrated medical achievements that progressively gave more people a chance to achieve what has been called ‘personhood’. Now Inuit children can be named at birth, rather than after having lived three years thus proving that they are likely to survive. Just as we have the technology to broaden life, and to extend it, many seek to demean the existence that medical science has made possible.

(1) ‘The baby Charlotte judgment has put us on a slippery slope’, Tom Utley, Daily Telegraph, 8 October 2004

(2) The blessed relief of death Mary Riddell, Observer, October 3 2004

(3) New NHS expenditure

(4) The blessed relief of death Mary Riddell, Observer, October 3 2004