Those advocating the withdrawal of life support in a particular case often say things like “a life like that would not be fair on the child”. It is worth looking at another, very different, context in which things like this are said. Such a context is the debates over assisted reproduction. Some of these are about whether to use modern reproductive technology to help single women, post-menopausal women, or lesbian couples to have children. Those who oppose such help often say that having, for instance, a post-menopausal mother would not be fair on the child. Similar things were said when a lesbian couple in the United States selected a sperm donor with hereditary deafness to increase the probability that their baby would be deaf like themselves.
It is striking how different the level is thought to be in the fertility clinic and in the intensive care unit. No-one would think of withdrawing life support from a baby in the intensive care unit because he or she was deaf, or had a mother who was single or was over normal child-bearing age, or would be brought up by a lesbian couple. This rests on the obvious point that neither being deaf nor being in those special family circumstances gives any grounds at all for thinking that life would be so burdensome that death would be a mercy. Those who argue against fertility treatment aimed at creating a child who will be deaf, or who will have a post-menopausal mother, seem to be applying a very different standard when they cite the interests of the child. The issue is controversial, but in my opinion they would be wrong to deny people the chance to have children by setting such a high standard of what is an acceptable quality of life for the child.
Of course the interests of the future child should be central in these reproductive decisions. But the question should be interpreted as “will the child have a decent chance of a good life?” And, in thinking about what a good life is, the child’s own likely viewpoint should be central. Will the child have a life that he or she could value, rather than one that would justify the thought, “I wish I had never been born”? On the child’s interests, the thinking in the fertility clinic should move closer to the thinking in the intensive care unit.
Life support is not withdrawn from a baby because of some estimate that his or her life is likely to be below some statistical norm. The question should be –and I believe normally is- “does the child have a decent chance of a good life?” And again the child’s own likely perspective is central. Would a child with this condition and in these circumstances be likely to have reason to be glad or sorry to have been kept alive?
The first question is not “will the child have a good life” but “will the child have a decent chance of a good life?” This reflects obvious uncertainties. Perhaps even extremely severe medical conditions do not make it inconceivable that life could be on balance good. And, on the other hand, even perfect health does not guarantee a good life. As usual in medicine, and in life, everything here is a matter of probabilities.
The second question, offered as a gloss on the first, is “will the child have a life that he or she could value, rather than one that would justify the thought “I wish I had never been born”?” It is deliberately not worded in terms of whether the child will actually value such a life, or will actually have the thought “I wish I had never been born”. Putting it in terms of what the child could value, or whether the life would justify the thought “I wish I had never been born”, reflects the fact that some of the children whose lives are at stake may never reach the stage of being able to have such thoughts. Some of them may not live long enough, and some of them may be cognitively too impaired.
I believe these are the right questions, but of course they are often terribly difficult to answer. And the answers always depend enormously on features of the particular case. Relevant information includes not only the medical facts and probabilities, but also such things as the level of family and social support, the age of the child and whether the child is competent to take a decision for himself or herself.
1. OLDER CHILDREN WHO ARE COMPETENT TO DECIDE.
Obviously a baby cannot take or express a view on such a question. But older children sometimes have a view on whether or not they should be kept alive. The principle that should guide the response to this is easy to express but extremely hard to apply. Where a child is competent to take a view, his or her competent assessment should be respected in the same way as anyone else’s. A child does not have less right to be heard simply because of being younger. One good thing about our time is that we at least aspire to a world where children are respected. It is no longer acceptable to hit children, or to demand that they should be “seen and not heard”, or for them to be dominated by parents in their choice of partner or career. The idea that children have rights like the rest of us should extend to respecting their competent decision about something so fundamental as whether their medical condition allows them to have a life that they find worth living.
But here, as often, autonomy is a slippery concept. In part this reflects the blurred boundaries of competence. The extreme cases are relatively easy. (Only relatively. Of course no life and death case is easy.) A four year-old in who says, “I want to die” in a moment of extreme distress is at one extreme. At the other is a thoughtful, intelligent and medically informed fifteen year-old, who, on the basis of substantial experience of both the condition and of treatment, opts against further intervention. But, if a fifteen year-old can be competent to decide and a four year-old cannot, where on the age slope does the boundary come? And the same issue arises for the other slopes relevant to competence. How thoughtful, how intelligent must the child be? How much experience of the condition and its course is needed?
My own prejudices have always been in favour of the view that children are listened to less than they should be, partly because adults under-rate their ability to think about things. Since Priscilla Alderson’s work on children’s consent to surgery, this seems less like a prejudice. 3 She has described how she and her colleague Jill Siddle first assumed that competence to consent to surgery might evolve around the age of 10 or 12 years. But their research suggested that children’s abilities depend less on age than on high expectations. So under-rating children’s competence may be self-confirming. Priscilla Alderson ended up urging that school age children should be presumed competent, with the onus on those who want to show that a particular child is not.
Obviously there may be special factors to consider in the case of consent by children. There are questions about how far children give full weight to their likely state in twenty years’ time, and about how deep or shallow is their emotional appreciation of the alternatives before them. There is the question of how far their supposedly autonomous decision actually reflects deep and pervasive parental influence. And “school age children” covers a wide age band. Competence always depends on things that are a matter of degree, and there is likely to be a good deal less autonomous thinking at five than at fifteen. But starting with the presumption of competence means that reasons have to be given in support of these claims about a particular child’s limited capacity to consent, instead of excluding someone from competence simply because he or she is a child.
2. THE INTERESTS OF BABIES AND OTHER CHILDREN TOO YOUNG TO DECIDE: SHOULD THERE BE QUALITY OF LIFE JUDGEMENTS?
Wherever the line at the lower end of competence is drawn, no one disputes that some very young children come below it. This clearly includes babies. Inevitably these life and death decisions have to be taken for them. I suggested that the key question for those deciding should be “will the child have a decent chance of a good life?” This is clearly a “quality of life” question, rather than just a matter of whether the condition can be treated in a way that makes physical survival possible: a decent chance not just of staying alive but of having a good life.
Some have argued that assessments of quality of life should have no place in these decisions. One clear alternative view is that being alive is itself an intrinsic good, that always over-rides any unavoidable pain or other distress that may come with it. This view has the harsh consequence of making it obligatory to keep alive a baby to endure a substantial period of severe distress from which the only escape will be eventual death. I shall assume that, for most of us, this view is too cruel to be morally plausible.
Some who argue against allowing a role to quality of life judgements do not take such a harsh view. This can be seen in statements made by two prominent members of LIFE, Mrs. Nuala Scarisbrick and Professor Jack Scarisbrick.
Mrs. Scarisbrick criticized the doctors in the Charlotte Wyatt case for talking about her quality of life being so wretched that she was better off dead. She said, “That is quite unacceptable. Doctors have no training in measuring “quality of life”. No one has. It is a subjective and dangerous catchphrase of the eugenics and euthanasia lobbies. Alas, it is acquiring wide popular currency. Doctors have a duty to care for all patients, not to pick and choose according to some arbitrary and unscientific criterion.” Professor Scarisbrick put the point even more forcefully: “Quality of life cannot be measured like blood pressure or temperature. There are no units involved in quality of life –only vague guesswork and assumption. There is often an assumption about children who are unconscious but how do we know that that child is suffering a poor quality of life? The concept of quality of life is disgustingly sloppy thinking. It allows the doctor to pick and choose.”
Despite these criticisms of “quality of life” judgements, neither Mrs. Scarisbrick nor Professor Scarisbrick takes the harsh view that life should be prolonged however distressing it may be. Mrs. Scarisbrick said that the decision to allow Charlotte Wyatt to die was “probably the right one, but it was made for the wrong reasons”. She accepted that “further treatment would have been futile and over-burdensome”. Professor Scarisbrick also said that “if the case of a terminally ill child goes to the courts, there is only one valid reason for it to make an order for it to stop sustaining life. It has to be proved beyond all reasonable doubt that further treatment is futile or burdensome. Doctors, however, argue in court something quite different. They talk in terms of the quality of life or the best interests of the child”.
Both Professor and Mrs. Scarisbrick take the humane view that treatment should be stopped if its continuation will be futile or burdensome. Treatment can be burdensome in two different ways. The treatment itself may be invasive or distressing. Or it can be burdensome by prolonging pain or distress caused by the medical condition. Judgements about either of these kinds of burdensomeness are quality of life judgements.
Just as doctors lack training in measuring quality of life, they also lack training in measuring how burdensome life is. And the two concepts are to the same degree subjective, arbitrary and unscientific. “There are no units involved” applies equally to assessing burdensomeness and to assessing quality of life. If one involves “disgustingly sloppy thinking”, so does the other. These similarities come from the fact that in this context the two concepts come to the same thing. Treatment is too burdensome if it is incompatible with a decent chance of a good life.
Quality of life assessments should not be abandoned. Certainly, they have a degree of subjectivity. It is true that there are no units of measurement as there are for blood pressure or temperature. But a wise and humane medical practice allows room for quantitative assessment to be supplemented by qualitative human judgement.
3. THE ZERO LINE AND THE GREY AREA.
The idea that judgements here are not precisely quantifiable fits with the thought that there is no precise point below which life is of too poor quality to be worth having, or –in the alternative phrasing- is too burdensome. “Will the child have a decent chance of a good life?” makes the lack of precision explicit in the phrase “a decent chance”. On the other hand, the second question, “Will the child have a life that he or she could value, rather than one that would justify the thought “I wish I had never been born”?” may seem to imply greater precision. It may sound as if that there is a zero line, below which the wish not to have been born would be justifiable.
But the zero line is an abstraction. In real life, when we wonder whether a certain problematic kind of life is worth living, we are likely often to aware more than anything of the difficulty of giving an answer. Some cases may be relatively clear. Where a baby has died after enduring a serious disorder for several painful months, the parents are sometimes quite clear that it would be cruel to have another child who would have to go through the same thing. But many other cases are far less clear. Burdensomeness is a matter of degree, and its components (pain, ill health, mental or physical disability, frustration, distress) are matters of degree rather than all-or-none. The idea of a sharp zero line should be replaced with acceptance that many decisions are taken within the grey area where there is room for disagreement.
A natural response to the thought that the condition and situation of a baby places him or her in this grey area where neither decision is obviously right is to want to opt for caution. This might suggest erring on the side of supporting life. Deciding to withdraw life support is a momentous decision. In the grey area there is obviously the risk of allowing to die someone who, if kept alive, would later have been glad. But it is not so clear what caution comes to here. It is also a terrible thing to impose on a baby or child a period of suffering or distress bad enough to justify the thought “I wish I had not been born”. The stakes are high on both sides, and the decision either way can get it wrong. So the fact that there is a grey area should not be seen as creating a presumption in either direction. There is no reassuring default position. Those taking the decision about what is in the child’s interests cannot escape making their own judgement about the whether that particular child has a decent chance of having a life that he or she will find worth having.