III. EXTREMELY PREMATURE BABIES
The stage of development a child is at makes a great difference to the approach to the question of keeping him or her alive. It is part of the beneficial children’s rights revolution that we now accept that a child who is competent and understands the questions, and who wants to die or wants to go on living, has the same claim as an adult to have his or her decision respected. But what of a baby born very prematurely, with serious medical complications? Suppose the medical condition either places the child in the grey area, or else –provided massive family support will be forthcoming- leaves open a decent chance of a good life? Should every effort be made to keep the baby alive, regardless of the views of parents?
The evidence about extremely premature babies brings out how difficult it is to assess whether or not there is “a decent chance of a good life”. How decent a chance? How good a life?
The EPICure study followed up a group of 302 surviving babies in the UK who were born at 25 or fewer weeks gestation. When assessed at two and a half years, it appeared that about half of them had no disability, about a quarter of them had severe disability and about a quarter had disability classified as less severe.4 But, when they were assessed at six and a half years, an age when learning disability is easier to detect, only 20% had no problems. 34% had relatively mild problems: such as needing glasses, having a squint, or cognitive scores in the low normal range. 24% had moderate disability: such as IQ at “special needs” level, some degree of visual or hearing impairment, or a degree of cerebral palsy that did not prevent walking. 22% had severe disability: such as blindness, profound deafness, very low cognitive scores, or severe cerebral palsy.5
At first sight, these very high figures for disability seem horrifying. But how do things seem from the point of view of the children in question? For the great majority, it seems hard to say that it was against their interests to be kept alive. The 54% who have no problems or relatively mild problems seem highly likely to have “a decent chance of a good life”. Of course, there are huge problems of assessment. From outside it is not always easy to tell how people see their lives. But people do not generally wish they had not been born because they need glasses, have a squint or have fairly low cognitive scores. Most of those with “moderate disability” (IQ at “special needs” level, etc.) may well value their lives. And so may most of those classified as having “severe disability”. People who are blind or profoundly deaf often have rich and satisfying lives.
If the medical team uses the test of the interests of the child proposed here, they may well think life support appropriate. It would not be against the interests of most of the children. But what do the parents think about such a decision? There may be some direct evidence about this, but if there is, I do not know it. However, there is the indirect evidence that large numbers do opt for termination when antenatal tests reveal Down syndrome, where very similar considerations apply. Although there are varying degrees of severity, Down syndrome children very often have rewarding lives. Certainly they do not in general have reason to wish they had not been born. Continuing the pregnancy would not be against the interests of most of the resulting children. So, if their interests were the deciding factor, most of the pregnancies would probably not be terminated.
There seems here to be a conflict of interest between fetuses and parents. And the same may well be true in the case of premature babies, many of whom may well have levels of impairment similar to Down syndrome. In the decision after the antenatal tests, the woman or the couple may say, “We would rather terminate the pregnancy and have another try”. In the case of the premature baby, perhaps some of the parents may say, “We would rather not keep the baby alive, but try for another pregnancy”.
If this parallel holds, what are its implications? Is there some moral or intellectual pressure towards consistency? If so, which way should we go? Should we let parental interests over-ride the likely interests of the extremely premature babies? Or should we be more worried than most of us are about whether giving priority to parental choice is acceptable in the case of terminating pregnancy? Or is there some moral distinction to be drawn between the two cases?
Paediatricians, because they deal with children already born, do not normally feel much involved in the abortion debate. But, because extremely premature babies are born at the developmental stages that the abortion debate is about, avoiding all contact with the issue is impossible.
1. SOME LESSONS FROM THE ABORTION DEBATE.
I see why paediatricians want to avoid the abortion debate. One’s heart sinks on approaching it. If you want a quiet life, never write or say anything either about the Israel-Palestine question or about the ethics of abortion. In each case there are two noisy and angry lobbies waiting to attack anyone who sounds possibly not on their side.
In the abortion debate, there are the well known extreme positions on each side. The hard line pro-life people officially believe that the fertilized egg or the embryo is a person or human being with the same right to life as you and me: that the morning after pill is the same as murder. The hard line pro-choice people officially believe that the only moral issue is the woman’s right to control her body, so that abortion is just a matter of removing some unwanted bodily tissue. The absurdity of the abortion debate is that no serious person would in practice act on either of these views. The pro-life campaigner, in an emergency such as a fire, faced with a choice between rescuing a dish of ten fertilized human eggs or a single real child would not hesitate to rescue the child. And the pro-choice woman who finds she has an unwanted pregnancy does not treat the issue of abortion as being about as important as removing an appendix.
The implausible extreme positions are partly the result of a reluctance to accept moral complexity and ambiguity. One sign of this rigidity is the appeal to rights on both sides: “the unborn child’s right to life” versus “the woman’s right to choose”. Rights are very helpful in arguing a case, because if you have a right to something, this takes precedence over rival claims. As Ronald Dworkin has put it, rights are trumps. So it is not surprising that the rival abortion lobbies brandish rights at us. What is less often heard in the debate is any serious attempt to show why one of these rights has more claim to be genuine than the other. (Or, if they both exist, why one should have priority over the other.) In serious ethics, the proliferation of poorly supported rival rights is not progress towards a solution but rather a symptom of the rigid thinking that blocks progress. The abortion debate might be better off if everyone forgot about rights for a while.
Despite the rival orthodoxies, the abortion debate itself is starting to become less rigid and more interesting. In recent years, three developments in our attitudes have contributed to this. At least psychologically (if not always logically) they pull in different directions in the debate. Two have a broadly pro-life impact and one has a broadly pro-choice impact.
(a) INCREASING KNOWLEDGE ABOUT FETAL DEVELOPMENT.
One “pro-life” development is the increasing awareness of some of the developmental facts about fetuses. There is evidence that late fetuses can learn to recognize tunes. The theme tune of “Neighbours” gets a different response from newborn infants whose mothers listened to the programme in late pregnancy. And research has made it increasingly plausible that consciousness may start to emerge earlier than was once thought, possibly as early as twenty weeks. Perhaps the most important aspect of the changing view of the fetus is one I mention with hesitation in front of those of you from Great Ormond Street. Many of those who treat pre-term babies think they show signs of feeling pain from around twenty-three weeks and are increasingly disturbed at the thought of fetuses at that stage being aborted.
None of this may be sufficient to demonstrate a fetal right to life, but it is uncomfortable for certain rather naïve images of the fetus that often accompany the pro-choice position. I have heard one eminent pro-choice scientist say that, while the claims about earlier fetal consciousness may be true, they should be played down for fear of helping the pro-life view.
(b) THE DISABILITY REVOLUTION.
Another issue where some pro-choice attitudes have come to be questioned is termination because of fetal disability.
One beneficial change in our own time has been the way so many people with disabilities have found their collective voice. We have many accounts of disability from the inside. This has made many of us aware of the importance of social factors in transforming a loss or impairment of function into a disability. We are increasingly aware of the importance, not just of whether or not such things as wheelchair access are provided, but also of the attitudes to disability that others have. Stigma and prejudice are some of the worst consequences of disability.
This has led to questioning common views about termination of pregnancy when antenatal testing picks up a disability. In the early days of amniocentesis, what was then called “mongolism” sounded like a condition that made life barely worth living. So termination was thought to be “in the interests of the child”. But now we know more about Down syndrome, and have heard more from people who have the condition, such a claim seems much more dubious. There is a case for potential parents having the option of termination, but it is more about their control over their own lives than about life being burdensome to the child.
(c) THE REPRODUCTIVE CHOICE REVOLUTION.
The growing emphasis on people having control over their own lives is the most important pro-choice shift in the context of the abortion debate. To an extent that would have seemed astonishing thirty years ago, we see the huge importance to women and to couples of having control over reproductive decisions.
This is reflected in the law’s response to cases of maternal-fetal conflict. There may be good medical reasons for thinking that for the baby’s sake the woman should have a Caesarian section, while the woman may refuse to have one. Legal decisions increasingly have supported the woman’s right to refuse this bodily invasion, despite the risk to the fetus. The increasing recognition of the importance to people of reproductive autonomy is also reflected in the option of termination of pregnancy after antenatal tests, despite the revolution in attitudes to disability.
The most powerful defence of giving priority to the woman’s choice in the maternal-fetal conflict cases –made by Rosamund Scott in her book Rights, Duties and the Body- centres on the physical invasiveness of a Caesarian and on the case for respecting the woman’s bodily integrity. 6 There are obvious parallels to the appeals made in the abortion debate to a woman’s ownership of her own body. But in the abortion debate this line of thought understates the major disaster of an unwanted pregnancy. It is not just an invaded body for nine months, but an invaded life for years to come. Awareness of this broader form of invasiveness is a reminder that people want more than control over their bodies, important as that is. They care about being in control of becoming a parent. They want to control whether and when they become parents. And, as the frequent choice of termination after antenatal tests shows, they often want control over whether or not they have a child with a disability.
2. THE CHANGED ABORTION DEBATE AND EXTREMELY PREMATURE BABIES.
These changes in understanding and in attitudes, give support to different sides in the abortion debate. All of them seem to me beneficial, but I will mention just two benefits.
The first comes from our growing understanding of the development of fetuses and babies. It is not so long ago that newborn babies were operated on without anaesthetics because doctors “knew” that they did not feel pain. Since the work of Professor Aynsley-Green, the issue of anaesthetics for fetal interventions (subject to the question of countervailing risks) is a real one.
The second comes from our recognition of the importance to women or couples of being in control of decisions about their reproduction. Around thirty years ago, when antenatal testing for disability was fairly new, a doctor might refuse amniocentesis in her next pregnancy to a woman who had one child with Down syndrome on the ground of the risk it might pose to the survival of the fetus. The idea that balancing these risks might be a decision for the woman herself rather than for the doctor was then as unthinkable as the reverse would be today.
As well as these benefits, the changes help to make possible a different kind of thinking about abortion. Instead of two rival rights, thought of as absolutes, we can start discussing the relative weight to give to different values when they are in conflict. We all care about not stigmatizing disability and we all care about women and couples having control over their reproduction. As the values in conflict are ones we share, disagreements will be confined to their relative weight. This gives more scope for explorative discussion than did the polarizing clash of absolutes. The debate becomes more like that over the woman who refuses the Caesarian, where we all care about protecting the fetus and care about not forcing bodily invasion on the woman. The questions are still difficult, but there is a more hope of progress.
This also applies to the questions about extremely premature babies. Keeping the baby alive may be in the baby’s interests, despite the high risk of disability. But parents may prefer the baby not to be kept alive. If the issue is seen as a clash between two absolutes, a baby’s right to life or a woman or couple’s right to choose, the discussion looks like a stalemate. But, in the changed climate, the discussion can be about whose interests matter more in this context.
There is a good case for saying that parental autonomy should come first. There is no violation of the baby’s autonomy as he or she is too young to have preferences or make a choice. It is probably in the interests of the baby to survive. But what this means is that the baby is likely to grow into a person who will be glad to be alive. That may also be true of a newly fertilized egg, whose development will be stopped by the morning after pill. It may also be true of such abstract entities as the child a couple will conceive on a particular occasion if they avoid contraception. Neither of these interests is usually taken to justify over-riding the freedom to use either contraceptives or the morning after pill. And giving parents the right to decide about life support for premature babies would reflect the same ranking of values that gives parents the option of termination after antenatal testing.