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Reflections on the withdrawal of treatment from newborn infants
Early Human Development, 18 (1989) 263-272 Elsevier Scientific Publishers Ireland Ltd.
263
EHD 00934
Reflections
on the withdrawal of treatment newborn infants* M.P.M.
from
Richards
Child Care and Development Group, University of Cambridge, Free School Lane, Cambridge CB2 3RF. U.K. Accepted for publication 26 April 1988
Summary The paper reviews the principal arguments that have been used to justify or otherwise the withdrawal of treatment for severely damaged neonates. The present confused legal situation is outlined and also the various considerations that have been put forward as relevant to the process of making decisions. It is argued that these decisions are not technical but are moral and social ones taken in the light of professional and technical expertise. Therefore parents should be involved in them as they have to live with the consequences of what is decided. The legal system does not seem very helpful in resolving present difficulties. At best, it forms a framework within which we can evolve appropriate decision-making procedures. neonatal death; ethics; infant; abortion Introduction The killing of some newborns whose birth is in some way untimely, or whose condition is less than perfect, is probably as old as human society. At different times and in different places, views about how, if at all, such practices may be justified have varied widely, as have the sanctions imposed on those who transgress accepted practice. Today, with the rise of specialised neonatal intensive care, this issue has become focused on the treatment of very-low-birthweight or severely malformed infants. There is now a considerable body of writing on this subject directed at both lay and professional audiences. In addition, a number of television programmes have been made on the topic, most recently a four-part BBC series by Stephen Rose, “The *An earlier version of this paper was prepared for the Midwives Information and Resources Service. 0378-3782/89/$03.50 0 1989 Elsevier Scientific Publishers Ireland Ltd. Published and Printed in Ireland
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Edge of Life”, describing the work of the neonatal unit in Cambridge and particularly focussing on the dilemmas of the treatment, or otherwise, of extremely-lowbirthweight infants. The aim of this paper is to review the principle arguments that have been used in the debate in recent years. Before going on to describe the current debate, it is perhaps useful to sketch the legal situation. The Legal Contract In the U.K. the law does not permit the killing of a child in any circumstances. However, the laws related to infanticide do recognise that particular considerations may arise when infants are killed by their mothers. As far as medical treatment goes, the situation is not at all clear. In theory at least, the law draws no distinction between a deliberate act committed by a doctor or by anyone else, which may be intended to end the life of a child. However, it is not required of doctors that they should strive in every possible way to prolong the life of a child in their care. Nor are they bound to use a treatment just because it may be available. The law would seem to recognize that in some circumstances a point may be reached where it may become unreasonable to continue treatment. In rather stark contrast to the way English law deals with the infant already born, it does permit the killing of a fetus in some circumstances, either because it is seriously malformed or because its death is necessary to secure the life or well-being of the mother or her other children (Abortion Act, 1967). Before the advent of modern neonatal care, the line between fetus and newborn was clear as there was an upper limit in terms of gestational age for abortion of 28 weeks which was below that of fetal viability, given the then available techniques of care. But today, one of the most obvious current dilemmas arises from the fact that abortion is permitted beyond what has now become the limit of viability for some babies. This, not surprisingly, has led to a widely observed guideline of restricting abortion to 24 weeks. This dilemma has become sharper with the growing use of techniques for fetal diagnosis and the increasing number of abortions for genetic and congenital disorders. As Brahams [l] describes, there are two cases particularly relevant to these issues.* The first concerns a Down’s syndrome baby with duodenal atresia. The parents did not wish to have the baby operated on and they fully recognised that their child could not survive without the operation. Most doctors they consulted agreed with their position, but not all. The baby was made a ward of court, and a judge made an order which followed the parents wishes. The case, known as “re B (Minor)“, which was heard in 1981, was reversed at appeal, and the baby was operated on and was fostered. The Appeal Court, while affirming that its duty was to decide that the child should live, did qualify this principle to the extent of saying that there might be cases of severe proved damage, where the future is so uncertain and where the life of the child is so bound to be full of pain and suffering, that the court
*We should note that there are many other cases in the U.S.A. and elsewhere. However, ent context and legal systems, it does not seem helpful to discuss these cases here.
given the differ-
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might be driven to a different conclusion. In effect then, the court is saying that the withholding of treatment in situations where death is likely to follow, might be permissible but the outlook would need to be a good deal bleaker than it was for this particular Down’s child. The other case also involves a Down’s syndrome child. Again, the parents did not wish their baby to survive. The paediatrician, Dr. Leonard Arthur, wrote in the notes “Nursing care only” and ordered dihydrocodeine to be given to alleviate distress. He was tried for murder, later changed to attempted murder, and was acquitted. Most legal commentators believe that this case does little to clarify matters, however, and the outcome was complicated by postmortem evidence of serious abnormalities. It is not clear whether the jury were not satisfied by the particular facts presented at the trial or whether, in a situation where it was accepted that a paediatrician was acting from the highest motives and as the parents wished, the charge of murder or attempted murder was inappropriate. Significantly too, this case does not provide any guidance as to whether the law might draw a distinction between a situation where a drug is given which as well as alleviating distress might hasten the death of a child whether or not food were withheld, and others where a specific treatment is not used but nothing that could be seen as taking active steps to hasten the death is undertaken. To these two cases we probably should add a third, C vs. S; the case in which an Oxford postgraduate student tried to prevent his pregnant ex-partner from obtaining an abortion [4]. The case made legal history for the extraordinary speed in which it reached the Law Lords and was resolved. But this speed - the whole matter was decided within a forthnight - may mean that it does not provide the best considered view of the broader implications of the case. The aspect of the case which concerns us here is whether the Infant Life (Preservation) Act 1929 applies to an infant that is born alive but does not have the capacity to survive. Were this the case, some have seen a legal means whereby the withdrawal of treatment from a severely damaged baby could be sanctioned. Legal opinion is divided on the issue. However, many legal observers believe that this case, like the other two that I have discussed, does little or nothing to clarify the issues. And it should be remembered that issues related to viability are irrelevant to the law of murder where it is equally homocide to kill someone with a lifetime before them or one likely to survive for a few minutes. In recent years a number of paediatricians have described in public, including on television, cases of infants whose prognosis has been so poor they felt it justified to withhold treatment. The most usual kind of case that has been described in this way have concerned children with neural tube defects, who despite repeated shunt operations have done very badly and have a very poor prognosis. The paediatrician responsible for the child has made it clear that, if life threatening infections occur, they will not give antibiotics. These are decisions reached in consultation with the parents. Significantly perhaps, following these public disclosures, no legal action has been taken. In an attempt to clarify the general legal situation, a group of lawyers supported by some paediatricians have drafted a bill which would allow life support to be withdrawn from infants of less than 28 weeks of age if the parents and two doctors agree that continuation is futile [2]. However, there is no sign of such a Bill becoming law.
While it is obviously of importance to be aware of the legal situation, this does not always either provide clear guidance or an appropriate forum for the resolution of many current dilemmas. However, it is important to recognise, contrary to a surprisingly widely held belief, that there is no principle that excludes doctors or indeed anyone else who may have responsibility for a child from the general provisions of the law. Views from parents and professionals
c
Apart from the legal debates, the available writing on this topic is of three general kinds, that from parents, from paediatricians or others involved in providing medical treatment and from the self styled “ethicists” [7,14]. There are several accounts by North American parents of their experiences of neonatal care. Perhaps the best known is the book by the Stinsons [12] ‘The Long Dying of Baby Andrew’. This, like the general survey by another parent, Helen Harrison [8], and a study by two sociologists [6] takes the position that the treatment of very small or very sick newborns is sometimes unnecessarily aggressive and prolonged beyond the point where there can be any hope of a reasonable outcome. This may happen in direct defiance of the parents’ wishes. It should, of course, be no surprise that the parents who have written about the issue have generally taken this position because, in both North America and the U.K., while clinicians are usually willing in the face of parental insistence to extend treatment beyond the point when they may have otherwise given up, they are much more reluctant to allow parents to persuade them to cease treatment before they may feel it is justified. There are, of course, other views held by members of the public. In the U.S.A. (and clearly similar views exist here), the concern which led to a Governmental attempt to force clinicians to treat all babies (the “Baby Doe” Case) first arose within the “right to life” movement in response to a situation where a Down’s syndrome baby with atresia died after the parents had refused to let surgery take place
PI. It is hard to know whether any significance should be attached to the point that parental accounts of what they see to be over treatment are an American rather than a British phenomena. But one might add here that when a group of British mothers of severely handicapped young adults were interviewed, 12 of the 17 did not think that infants born severely handicapped “should receive all possible medical treatment to enable them to survive”. One commented that when their child was born they were shocked when the GP had said “it would be better if the Lord took him” but she now thinks he was right. Another said “that while she believes in mercy killing for those diagnosed at birth, later on it gets more difficult”. One of the mothers felt that parents should make these decisions as “it’s not fair to burden doctors with it” [ll]. As well as general discussions in the professional literature [3,5], there have been a series of accounts by paediatricians and others of the selective treatment of various groups of infants. Lorber’s [lo] criteria for the selection for treatment of children
with spina bifida is perhaps the best known example here. More recently, Whitelaw [15] has described practice at the Hammersmith Hospital Neonatal Unit. Over a 4-year period 75 infants were so ill that withdrawal of treatment was discussed. Twenty-six infants had severe acquired neurological damage, 23 severe cogenital abnormalities and 26 had been born after an extremely short gestation (25 weeks or less). Decisions to withdraw treatment had to be unanimous among medical and nursing staff and had been based on “a virtual certainty, not just of handicap, but of total incapacity, e.g. microcephaly, spastic quadriplegia and blindness”. Of the 75 infants considered, the decision was to withdraw treatment in 5 1. The parents of 47 infants “accepted” the decision and all these infants died. Four parents chose continued intensive care, two of these babies survived with disabilities. Of the 24 cases where treatment was continued, 17 survived. The author concludes “when a thorough medical assessment has led to unanimous agreement among staff and parents that treatment should be withdrawn, its continuation on purely legal grounds is not justifiable”. A BBC film was made in which Dr. Whitelaw explained his views. It included interviews with parents of children both from whom treatment was withdrawn and where it was continued. This film is being used as a teaching resource in a number of neonatal units. Significant issues While I think it is impossible, certainly on the basis of the current writing and probably in principle, to provide specific guidelines which might cover all situations, there are a number of issues which require consideration.
(I) Who makes the decision? The general practice in Britain seems to be for decisions to be taken by medical staff, usually together with nursing staff. Experience would seem to suggest that all those involved in the care of a baby should take part in such discussions. When junior and inexperienced staff have been excluded, deep resentments and lack of trust can be produced. The usual requirement is for any decision to withdraw treatment to be unanimous. While the usual practice is for parents to be consulted once a decision has been reached, in most instances they will have had many earlier discussions with staff and so their general attitudes and feelings are likely to be known. Though t.he point is seldom raised in accounts of practice, unanimity among parents may be even more important than among staff. Differences between parents are not always obvious to staff but if they exist and are ignored, there can be profound long-term effects on their relationship. It would follow that if at all possible, all important discussions with parents should take place when both are present. There has been much discussion about how much or how little parents should be told. Clearly, an informed decision is required from them but exactly what information is given will vary according to their wish to know and their understanding of developmental and physiological processes. A commonly
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expressed view is that it is necessary to be honest but at the same time not to burden parents with unnecessary detail. The problem is that such a position can become rather patronising when judgements are being made about what information to give or what to withhold. As has been pointed out, it may be easy to ‘lead’ some parents to a particular conclusion. Whichever way a decision goes, parents may continue for many years to question what was decided. If there is a good deal of doubt and uncertainty initially, these doubts are likely to grow. Most disturbing however, may be a later feeling that a decision was made without full knowledge of the facts. As I have already noted, there are some parents who believe that doctors should not be burdened with these decisions. More commonly, there are doctors who believe that parents should not be so burdened. Perhaps all one can say is that the majority view is that both should be involved. (2) When should decisions be made? We have noted the differing legal attitude to a fetus and a child. Many, but certainly not all, parents draw some kind of distinction of this kind. In the case of many genetic disorders and malformations the rapid development of techniques for fetal diagnosis will increasingly raise the possibility of decision-making early in pregnancy. However, the full deployment of techniques of this kind will not prevent the birth of very-low-birthweight and other infants whose condition is such that decisions about their treatment will be required. Both staff and parents would seem to agree that it is more difficult to consider withdrawing treatment once it has begun than not to start it. The easiest act of omission is not to resuscitate a baby at birth. In the past at least, the examination of stillbirth statistics suggest this was not an uncommon practice with babies with severe neural tube defects. However, decision making in the delivery room has a number of grave disadvantages. Unless there has been prior discussion with both parents, it is unlikely that their views are adequately known. In most cases insufficient information will be available to make a proper assessment of the likely outcome for the baby. Experienced staff may not be present at the delivery. Understandably, it is one of those situations in which most people will tend to act first (to resuscitate) and to consider later. Given that the situation is almost always one where a baby that has been treated for a period of time, perhaps a considerable period of time, it is not surprising that many staff may become very reluctant to consider withdrawal of treatment seeing this as a failure of some kind on their part or even a denial of the efforts they have made. At the same time, it should be said that feelings of this kind can also serve as a desirable safeguard in decision making. (3) Confiicts in decision making There are a number of arguments that are often used in debates about decision making where opinion is plainly divided. In some cases the issue may be as much whether the argument has any relevance at all, as its force in a particular case. It is far beyond the scope of this note to present a reasoned discussion of each argument,
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even if this were possible. Instead I will try to describe the position that some people take in each instance. Doubtless readers will have their own views on each argument. (a) Some people believe, perhaps on the grounds of a religious or moral principle, that we should treat all babies to the best of our ability regardless of what we may see as the likely outcome. A related position is to say that we, either as professionals or parents, cannot ‘play God’, i.e. we should never attempt to make decisions about who should live and who should die. So to avoid such decisions we should continue to treat regardless of potential outcome. Against this position, it is argued that to provide neonatal care is as much to ‘play God’ as to withdraw treatment. (b) It is sometimes suggested that the effects that the treatment of a particular baby or a class of babies may have on medical resources should be an important consideration. It may be a very broad case - that the resources used in treating very small or very sick babies could be better deployed elsewhere in the health service or a narrower one - that continuing to treat a particular baby in intensive care may deprive another baby who might have a much better chance of survival of receiving any intensive care. While guidelines about treatment often stress that economic consequences should be ignored, what is undeniable is that medical resources are limited and so decisions about treatment will influence the care available to others. (c) It is sometimes stated that it is only justifiable to treat babies who have a near certainty of growing up with severe handicaps or disability if there are appropriate resources in the community to care for them through their lifetime and to provide adequate support for their families. Readers may differ in their view as to whether this condition would be satisfied in their particular community. (d) All assessments of outcome always contain some element of uncertainty so it may be held that there never can be sufficient certainty to make a decision to withdraw treatment. Uncertainty will always be present - it almost always is in any medical decision - but the point is whether the degree of uncertainty is sufficient to preclude making any decision. Logically at least this argument might be used about decisions to instigate or withdraw treatment. However, it almost always seems to be deployed in the latter case only. (e) Some paediatricians have argued that, unless they attempt to treat very small and very sick babies, new techniques cannot be devised and assessed and staff cannot gain experience. They suggest that this kind of experimental treatment is the only way to enlarge the group of babies for whom intact survival is likely and it will improve the quality of care for all babies in neonatal units. It should be added that there is a grey area between the provision of routine and well tried, if not well assessed, forms of treatment on the one hand, and trials and experimental studies which have been approved by an ethical committee and for which informed consent from parents will normally be required on the other. Because of the procedures involving ethical committees that are used to regulate experimental studies, it has been argued that the treatment of all borderline infants should be regarded as a formal experiment [6]. (f) It is said that babies themselves will indicate through their behaviour whether or not they have a will to live. If a baby “holds up his hand” in this way, it is suggested that treatment should continue. In effect, this argument seems to rest on the
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assumption that an infant is able to indicate its own prognosis - or at least that a judgement about prognosis may be made on the basis of an infant’s general behaviour and condition. (g) Many people draw a sharp distinction between the withdrawal of treatment and the taking of active steps of some kind to hasten the death of a baby. While some’paediatricians are prepared to withdraw treatment in certain circumstances, fewer are prepared to argue for the taking of active steps to end a life. Practice based on this distinction has been criticised on a number of grounds, including the argument that withdrawal of treatments could lead to an even worse situation in which a baby survives but might be even more handicapped than would have been the case had treatment continued. It is therefore suggested in some quarters that withdrawal of treatment should be accompanied by some form of euthanasia. (4) The broader context of decision making I have already suggested that even if the law were modified, it is unlikely that it will provide clear guidance for all situations or, indeed, an appropriate forum for all decision making. It is perhaps better to see the law as a framework within which other forms of decision-making can take place. As well as the involvements of parents and those having responsibility for the care of a baby, it is sometimes suggested that some kind of review committee should provide a forum for a wider discussion of decisions. The usual form suggested for such a committee is that it should involve various kinds of lay members (a parent of a handicapped child for instance) as well as professionals from the community and the neonatal unit. Obvious problems may arise about how members should be selected. There have been various attempts to set up such committees but all seem to have been short lived. As yet, there have been no accounts of what may have happened in these cases so it is unclear why they have been unsuccessful. The aims of such committees have varied somewhat, but include the following: (a) To provide retrospective discussion of decisions made concerning the care of babies where ethical issues are involved in order to evolve a body of experience that may aid such decision making in the future. (b) To provide a link between a neonatal unit and the community within which it operates so that knowledge of practice within the unit is better known outside and that those in the unit are more aware of attitudes in the wider community. (c) To undertake follow-up studies of children who have received neonatal care or to review the results of such studies. The need for information from follow-up studies to inform decision making is obvious. However, not all units undertake systematic follow-up studies. Despite the difficulties, it is highly desirable that studies should relate to a geographical population rather than the children who have passed through a unit. They should include, for example, infants for whom neonatal care was sought but who were not admitted for one reason or another. As well as following up surviving children and their parents, it is desirable that parents whose children have died should be contacted sometime after the event so that their views of what happened may be obtained. Ideally, follow-up studies should include information about parental attitudes to any disabilities their children may have, the impact of such disabilities on all members of the family and the support services, formal and informal, that the family needs and their availability.
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Ethics committees exist in many hospitals in the U.S.A. Their function seems rather different from what I have outlined above and reflects the particular situation in that country. Their main purposes seem to be to resolve disputes between parents and medical staff about the treatment of children and to try and provide medical staff with protection against legal action by parents. Conclusions
Thus far, I have tried to provide a guide to the main issues that have been raised in discussions about the continued treatment of very sick newborns. I have tried not to let my own view and feelings intrude. But several of those who were kind enough to comment on an earlier draft said I should not remain on the fence and should make my own position clear. So I will end by providing my own conclusions to the debate. Decision making about very sick infants cannot be avoided. Continued treatment may allow difficult decisions to be ducked but in itself it constitutes a policy. My impression is that, not surprisingly, there is a tendency to put off overt decision making and that in some cases care would be improved by consideration of all the options at an earlier point than sometimes happens. While the paediatricians have prime responsibility, all staff should be involved in decision making and the conclusions should be presented to parents for their decision. One of the most difficult tasks is knowing how to present this information to parents to ensure they are fully informed without overburdening them and to fully include them in decision making without pushing all the responsibility onto them. But the child is theirs and they will live with the outcome of whatever is decided. For parents there is a uniqueness in the decision making which is not shared by the professionals. While I would agree with those, like Mary Warnock [13], who argues that parents cannot and should not make decisions in matters of professional expertise, I do not think this means they should be excluded from decisions about future treatment. The decisions we are discussing are not technical but moral and social ones taken in the light of professional and technical expertise. Discussion and debate about decision making should form an important part of the continuing education of medical and nursing staff in neonatal units. Often it may be helpful to discuss cases which the staff have not been involved with the care of the baby and here film material can be valuable. Discussions with parents whose children died in the neonatal period or who survived with or without damage may be valuable, as are role play techniques. The aim of such continuing education is to improve decision-making practice in a situation where it is probably impossible to evolve specific guidelines to cover all eventualities. If a decision has been taken to cease active treatment, it is then the responsibility of the staff to ensure that a baby dies quickly and as painlessly as possible. As I have said already, the legal process does not seem to be very helpful in resolving present difficulties. At best, it serves as a rather clumsy long stop and, at worse, the uncertainties encourage a policy of defensive over-treatment. While it is easy to call for a clarification of the legal position it is much less easy to see how this might be brought about. I think something along the lines of the Brahams and
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Brahams [2] proposal is desirable. I think too that a majority of the public would support a policy of considered selective non-treatment. But as recent discussions about embryo research and the regulation of the use of techniques for assisted fertilization show, there is no concensus about such matters. A similar point could be made about the reaction to the recent case of the sterilization of a severely subnormal girl. While politicians (inside or outside the Government) seem unable to provide leadership on these matters, it seems unlikely that the legal situation will be clarified. An added complication here is the growing role of prenatal diagnosis and screening. If we permit, or even encourage, the abortion of fetuses with neural tube defects, Down’s Syndrome and, in the near future, cystic fibrosis, are we not also under some pressure to take clear and considered decisions about the continued treatment of seriously damaged infants? If the law cannot provide an adequate framework in which decision making can proceed, I think we must seek other means. Providers of neonatal care must be seen to be operating with the consent and support of the communities they serve. And at the individual level, there must be a relationship of trust between parents and those who care for their children. So far, in Britain, the review committtee model has not proved to be very successful. But perhaps we should persist and try different structures and ways of operating until more satisfactory forms are evolved. I think the need is very clear so that the incentives to find answers are strong. References
4 5
6 I 8 9 10 11 12 13 14 15
Brahams, D. (1986): Severely handicapped babies and the law. The Lancet, i, 984-985. Brahams, D.J. and Brahams, M.H. (1983): The Arthur case - a proposal for legislation. J. Med. Ethics, 9, 12-17. Campbell, A.G.M. (1986): Ethical problems in neonatal care. In: Textbook of Neonatology. Editor: N.R.C. Roberton. Churchill Livingstone, Edinburgh. de Cruz, S.P. (1987): Abortion, C v Sand the law. Family Law, 17,319-323. Davis, J.A. (1983): Ethical issues in neonatal intensive care. In: Parent-Baby Attachment in Premature Infants. Editors: J.A. Davis, M.P.M. Richards and N.R.C. Roberton. Croom Helm, London. Guillemin, J.H. and Holmstrom, L.L. (1987): Mixed Blessings. Intensive Care for Newborns, Oxford University Press, New York. Gustaitis, R. and Young, E.W.D. (1986): A Time to be Born: A Time to Die. Conflicts and ethics in an intensive care nursery. Addison Wesley, Reading, Mass. Harrison, H. (1986): Neonatal intensive care: parents role in ethical decision making. Birth, 13, 165-175. Kuhse, H. and Singer, P. (1985): Should the Baby Live? Oxford University Press, Oxford. Lorber, J. (1972): Spina bifida cystica. Results of treatment of 270 consecutive cases with criteria for selection for the future. Arch. Dis. Child., 47, 854-873. Simms, M. (1985): Surgery for retarded infants. The Lancet, ii. Nov. 2. Stinson, R. and Stinson, P. (1983): The Long Dying of Baby Andrew. Atlantic - Little Brown, Boston. Warnock, M. (1987): Medical advances bring ethical responsibilities. The Listener, 4th June. Weir, R. (1984): Selective non-treatment of handicapped newborns. Oxford University Press, New York. Whitelaw, A. (1986): Death as an option in neonatal care. The Lancet, ii, 328-331.
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EHD 00934
Reflections
on the withdrawal of treatment newborn infants* M.P.M.
from
Richards
Child Care and Development Group, University of Cambridge, Free School Lane, Cambridge CB2 3RF. U.K. Accepted for publication 26 April 1988
Summary The paper reviews the principal arguments that have been used to justify or otherwise the withdrawal of treatment for severely damaged neonates. The present confused legal situation is outlined and also the various considerations that have been put forward as relevant to the process of making decisions. It is argued that these decisions are not technical but are moral and social ones taken in the light of professional and technical expertise. Therefore parents should be involved in them as they have to live with the consequences of what is decided. The legal system does not seem very helpful in resolving present difficulties. At best, it forms a framework within which we can evolve appropriate decision-making procedures. neonatal death; ethics; infant; abortion Introduction The killing of some newborns whose birth is in some way untimely, or whose condition is less than perfect, is probably as old as human society. At different times and in different places, views about how, if at all, such practices may be justified have varied widely, as have the sanctions imposed on those who transgress accepted practice. Today, with the rise of specialised neonatal intensive care, this issue has become focused on the treatment of very-low-birthweight or severely malformed infants. There is now a considerable body of writing on this subject directed at both lay and professional audiences. In addition, a number of television programmes have been made on the topic, most recently a four-part BBC series by Stephen Rose, “The *An earlier version of this paper was prepared for the Midwives Information and Resources Service. 0378-3782/89/$03.50 0 1989 Elsevier Scientific Publishers Ireland Ltd. Published and Printed in Ireland
264
Edge of Life”, describing the work of the neonatal unit in Cambridge and particularly focussing on the dilemmas of the treatment, or otherwise, of extremely-lowbirthweight infants. The aim of this paper is to review the principle arguments that have been used in the debate in recent years. Before going on to describe the current debate, it is perhaps useful to sketch the legal situation. The Legal Contract In the U.K. the law does not permit the killing of a child in any circumstances. However, the laws related to infanticide do recognise that particular considerations may arise when infants are killed by their mothers. As far as medical treatment goes, the situation is not at all clear. In theory at least, the law draws no distinction between a deliberate act committed by a doctor or by anyone else, which may be intended to end the life of a child. However, it is not required of doctors that they should strive in every possible way to prolong the life of a child in their care. Nor are they bound to use a treatment just because it may be available. The law would seem to recognize that in some circumstances a point may be reached where it may become unreasonable to continue treatment. In rather stark contrast to the way English law deals with the infant already born, it does permit the killing of a fetus in some circumstances, either because it is seriously malformed or because its death is necessary to secure the life or well-being of the mother or her other children (Abortion Act, 1967). Before the advent of modern neonatal care, the line between fetus and newborn was clear as there was an upper limit in terms of gestational age for abortion of 28 weeks which was below that of fetal viability, given the then available techniques of care. But today, one of the most obvious current dilemmas arises from the fact that abortion is permitted beyond what has now become the limit of viability for some babies. This, not surprisingly, has led to a widely observed guideline of restricting abortion to 24 weeks. This dilemma has become sharper with the growing use of techniques for fetal diagnosis and the increasing number of abortions for genetic and congenital disorders. As Brahams [l] describes, there are two cases particularly relevant to these issues.* The first concerns a Down’s syndrome baby with duodenal atresia. The parents did not wish to have the baby operated on and they fully recognised that their child could not survive without the operation. Most doctors they consulted agreed with their position, but not all. The baby was made a ward of court, and a judge made an order which followed the parents wishes. The case, known as “re B (Minor)“, which was heard in 1981, was reversed at appeal, and the baby was operated on and was fostered. The Appeal Court, while affirming that its duty was to decide that the child should live, did qualify this principle to the extent of saying that there might be cases of severe proved damage, where the future is so uncertain and where the life of the child is so bound to be full of pain and suffering, that the court
*We should note that there are many other cases in the U.S.A. and elsewhere. However, ent context and legal systems, it does not seem helpful to discuss these cases here.
given the differ-
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might be driven to a different conclusion. In effect then, the court is saying that the withholding of treatment in situations where death is likely to follow, might be permissible but the outlook would need to be a good deal bleaker than it was for this particular Down’s child. The other case also involves a Down’s syndrome child. Again, the parents did not wish their baby to survive. The paediatrician, Dr. Leonard Arthur, wrote in the notes “Nursing care only” and ordered dihydrocodeine to be given to alleviate distress. He was tried for murder, later changed to attempted murder, and was acquitted. Most legal commentators believe that this case does little to clarify matters, however, and the outcome was complicated by postmortem evidence of serious abnormalities. It is not clear whether the jury were not satisfied by the particular facts presented at the trial or whether, in a situation where it was accepted that a paediatrician was acting from the highest motives and as the parents wished, the charge of murder or attempted murder was inappropriate. Significantly too, this case does not provide any guidance as to whether the law might draw a distinction between a situation where a drug is given which as well as alleviating distress might hasten the death of a child whether or not food were withheld, and others where a specific treatment is not used but nothing that could be seen as taking active steps to hasten the death is undertaken. To these two cases we probably should add a third, C vs. S; the case in which an Oxford postgraduate student tried to prevent his pregnant ex-partner from obtaining an abortion [4]. The case made legal history for the extraordinary speed in which it reached the Law Lords and was resolved. But this speed - the whole matter was decided within a forthnight - may mean that it does not provide the best considered view of the broader implications of the case. The aspect of the case which concerns us here is whether the Infant Life (Preservation) Act 1929 applies to an infant that is born alive but does not have the capacity to survive. Were this the case, some have seen a legal means whereby the withdrawal of treatment from a severely damaged baby could be sanctioned. Legal opinion is divided on the issue. However, many legal observers believe that this case, like the other two that I have discussed, does little or nothing to clarify the issues. And it should be remembered that issues related to viability are irrelevant to the law of murder where it is equally homocide to kill someone with a lifetime before them or one likely to survive for a few minutes. In recent years a number of paediatricians have described in public, including on television, cases of infants whose prognosis has been so poor they felt it justified to withhold treatment. The most usual kind of case that has been described in this way have concerned children with neural tube defects, who despite repeated shunt operations have done very badly and have a very poor prognosis. The paediatrician responsible for the child has made it clear that, if life threatening infections occur, they will not give antibiotics. These are decisions reached in consultation with the parents. Significantly perhaps, following these public disclosures, no legal action has been taken. In an attempt to clarify the general legal situation, a group of lawyers supported by some paediatricians have drafted a bill which would allow life support to be withdrawn from infants of less than 28 weeks of age if the parents and two doctors agree that continuation is futile [2]. However, there is no sign of such a Bill becoming law.
While it is obviously of importance to be aware of the legal situation, this does not always either provide clear guidance or an appropriate forum for the resolution of many current dilemmas. However, it is important to recognise, contrary to a surprisingly widely held belief, that there is no principle that excludes doctors or indeed anyone else who may have responsibility for a child from the general provisions of the law. Views from parents and professionals
c
Apart from the legal debates, the available writing on this topic is of three general kinds, that from parents, from paediatricians or others involved in providing medical treatment and from the self styled “ethicists” [7,14]. There are several accounts by North American parents of their experiences of neonatal care. Perhaps the best known is the book by the Stinsons [12] ‘The Long Dying of Baby Andrew’. This, like the general survey by another parent, Helen Harrison [8], and a study by two sociologists [6] takes the position that the treatment of very small or very sick newborns is sometimes unnecessarily aggressive and prolonged beyond the point where there can be any hope of a reasonable outcome. This may happen in direct defiance of the parents’ wishes. It should, of course, be no surprise that the parents who have written about the issue have generally taken this position because, in both North America and the U.K., while clinicians are usually willing in the face of parental insistence to extend treatment beyond the point when they may have otherwise given up, they are much more reluctant to allow parents to persuade them to cease treatment before they may feel it is justified. There are, of course, other views held by members of the public. In the U.S.A. (and clearly similar views exist here), the concern which led to a Governmental attempt to force clinicians to treat all babies (the “Baby Doe” Case) first arose within the “right to life” movement in response to a situation where a Down’s syndrome baby with atresia died after the parents had refused to let surgery take place
PI. It is hard to know whether any significance should be attached to the point that parental accounts of what they see to be over treatment are an American rather than a British phenomena. But one might add here that when a group of British mothers of severely handicapped young adults were interviewed, 12 of the 17 did not think that infants born severely handicapped “should receive all possible medical treatment to enable them to survive”. One commented that when their child was born they were shocked when the GP had said “it would be better if the Lord took him” but she now thinks he was right. Another said “that while she believes in mercy killing for those diagnosed at birth, later on it gets more difficult”. One of the mothers felt that parents should make these decisions as “it’s not fair to burden doctors with it” [ll]. As well as general discussions in the professional literature [3,5], there have been a series of accounts by paediatricians and others of the selective treatment of various groups of infants. Lorber’s [lo] criteria for the selection for treatment of children
with spina bifida is perhaps the best known example here. More recently, Whitelaw [15] has described practice at the Hammersmith Hospital Neonatal Unit. Over a 4-year period 75 infants were so ill that withdrawal of treatment was discussed. Twenty-six infants had severe acquired neurological damage, 23 severe cogenital abnormalities and 26 had been born after an extremely short gestation (25 weeks or less). Decisions to withdraw treatment had to be unanimous among medical and nursing staff and had been based on “a virtual certainty, not just of handicap, but of total incapacity, e.g. microcephaly, spastic quadriplegia and blindness”. Of the 75 infants considered, the decision was to withdraw treatment in 5 1. The parents of 47 infants “accepted” the decision and all these infants died. Four parents chose continued intensive care, two of these babies survived with disabilities. Of the 24 cases where treatment was continued, 17 survived. The author concludes “when a thorough medical assessment has led to unanimous agreement among staff and parents that treatment should be withdrawn, its continuation on purely legal grounds is not justifiable”. A BBC film was made in which Dr. Whitelaw explained his views. It included interviews with parents of children both from whom treatment was withdrawn and where it was continued. This film is being used as a teaching resource in a number of neonatal units. Significant issues While I think it is impossible, certainly on the basis of the current writing and probably in principle, to provide specific guidelines which might cover all situations, there are a number of issues which require consideration.
(I) Who makes the decision? The general practice in Britain seems to be for decisions to be taken by medical staff, usually together with nursing staff. Experience would seem to suggest that all those involved in the care of a baby should take part in such discussions. When junior and inexperienced staff have been excluded, deep resentments and lack of trust can be produced. The usual requirement is for any decision to withdraw treatment to be unanimous. While the usual practice is for parents to be consulted once a decision has been reached, in most instances they will have had many earlier discussions with staff and so their general attitudes and feelings are likely to be known. Though t.he point is seldom raised in accounts of practice, unanimity among parents may be even more important than among staff. Differences between parents are not always obvious to staff but if they exist and are ignored, there can be profound long-term effects on their relationship. It would follow that if at all possible, all important discussions with parents should take place when both are present. There has been much discussion about how much or how little parents should be told. Clearly, an informed decision is required from them but exactly what information is given will vary according to their wish to know and their understanding of developmental and physiological processes. A commonly
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expressed view is that it is necessary to be honest but at the same time not to burden parents with unnecessary detail. The problem is that such a position can become rather patronising when judgements are being made about what information to give or what to withhold. As has been pointed out, it may be easy to ‘lead’ some parents to a particular conclusion. Whichever way a decision goes, parents may continue for many years to question what was decided. If there is a good deal of doubt and uncertainty initially, these doubts are likely to grow. Most disturbing however, may be a later feeling that a decision was made without full knowledge of the facts. As I have already noted, there are some parents who believe that doctors should not be burdened with these decisions. More commonly, there are doctors who believe that parents should not be so burdened. Perhaps all one can say is that the majority view is that both should be involved. (2) When should decisions be made? We have noted the differing legal attitude to a fetus and a child. Many, but certainly not all, parents draw some kind of distinction of this kind. In the case of many genetic disorders and malformations the rapid development of techniques for fetal diagnosis will increasingly raise the possibility of decision-making early in pregnancy. However, the full deployment of techniques of this kind will not prevent the birth of very-low-birthweight and other infants whose condition is such that decisions about their treatment will be required. Both staff and parents would seem to agree that it is more difficult to consider withdrawing treatment once it has begun than not to start it. The easiest act of omission is not to resuscitate a baby at birth. In the past at least, the examination of stillbirth statistics suggest this was not an uncommon practice with babies with severe neural tube defects. However, decision making in the delivery room has a number of grave disadvantages. Unless there has been prior discussion with both parents, it is unlikely that their views are adequately known. In most cases insufficient information will be available to make a proper assessment of the likely outcome for the baby. Experienced staff may not be present at the delivery. Understandably, it is one of those situations in which most people will tend to act first (to resuscitate) and to consider later. Given that the situation is almost always one where a baby that has been treated for a period of time, perhaps a considerable period of time, it is not surprising that many staff may become very reluctant to consider withdrawal of treatment seeing this as a failure of some kind on their part or even a denial of the efforts they have made. At the same time, it should be said that feelings of this kind can also serve as a desirable safeguard in decision making. (3) Confiicts in decision making There are a number of arguments that are often used in debates about decision making where opinion is plainly divided. In some cases the issue may be as much whether the argument has any relevance at all, as its force in a particular case. It is far beyond the scope of this note to present a reasoned discussion of each argument,
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even if this were possible. Instead I will try to describe the position that some people take in each instance. Doubtless readers will have their own views on each argument. (a) Some people believe, perhaps on the grounds of a religious or moral principle, that we should treat all babies to the best of our ability regardless of what we may see as the likely outcome. A related position is to say that we, either as professionals or parents, cannot ‘play God’, i.e. we should never attempt to make decisions about who should live and who should die. So to avoid such decisions we should continue to treat regardless of potential outcome. Against this position, it is argued that to provide neonatal care is as much to ‘play God’ as to withdraw treatment. (b) It is sometimes suggested that the effects that the treatment of a particular baby or a class of babies may have on medical resources should be an important consideration. It may be a very broad case - that the resources used in treating very small or very sick babies could be better deployed elsewhere in the health service or a narrower one - that continuing to treat a particular baby in intensive care may deprive another baby who might have a much better chance of survival of receiving any intensive care. While guidelines about treatment often stress that economic consequences should be ignored, what is undeniable is that medical resources are limited and so decisions about treatment will influence the care available to others. (c) It is sometimes stated that it is only justifiable to treat babies who have a near certainty of growing up with severe handicaps or disability if there are appropriate resources in the community to care for them through their lifetime and to provide adequate support for their families. Readers may differ in their view as to whether this condition would be satisfied in their particular community. (d) All assessments of outcome always contain some element of uncertainty so it may be held that there never can be sufficient certainty to make a decision to withdraw treatment. Uncertainty will always be present - it almost always is in any medical decision - but the point is whether the degree of uncertainty is sufficient to preclude making any decision. Logically at least this argument might be used about decisions to instigate or withdraw treatment. However, it almost always seems to be deployed in the latter case only. (e) Some paediatricians have argued that, unless they attempt to treat very small and very sick babies, new techniques cannot be devised and assessed and staff cannot gain experience. They suggest that this kind of experimental treatment is the only way to enlarge the group of babies for whom intact survival is likely and it will improve the quality of care for all babies in neonatal units. It should be added that there is a grey area between the provision of routine and well tried, if not well assessed, forms of treatment on the one hand, and trials and experimental studies which have been approved by an ethical committee and for which informed consent from parents will normally be required on the other. Because of the procedures involving ethical committees that are used to regulate experimental studies, it has been argued that the treatment of all borderline infants should be regarded as a formal experiment [6]. (f) It is said that babies themselves will indicate through their behaviour whether or not they have a will to live. If a baby “holds up his hand” in this way, it is suggested that treatment should continue. In effect, this argument seems to rest on the
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assumption that an infant is able to indicate its own prognosis - or at least that a judgement about prognosis may be made on the basis of an infant’s general behaviour and condition. (g) Many people draw a sharp distinction between the withdrawal of treatment and the taking of active steps of some kind to hasten the death of a baby. While some’paediatricians are prepared to withdraw treatment in certain circumstances, fewer are prepared to argue for the taking of active steps to end a life. Practice based on this distinction has been criticised on a number of grounds, including the argument that withdrawal of treatments could lead to an even worse situation in which a baby survives but might be even more handicapped than would have been the case had treatment continued. It is therefore suggested in some quarters that withdrawal of treatment should be accompanied by some form of euthanasia. (4) The broader context of decision making I have already suggested that even if the law were modified, it is unlikely that it will provide clear guidance for all situations or, indeed, an appropriate forum for all decision making. It is perhaps better to see the law as a framework within which other forms of decision-making can take place. As well as the involvements of parents and those having responsibility for the care of a baby, it is sometimes suggested that some kind of review committee should provide a forum for a wider discussion of decisions. The usual form suggested for such a committee is that it should involve various kinds of lay members (a parent of a handicapped child for instance) as well as professionals from the community and the neonatal unit. Obvious problems may arise about how members should be selected. There have been various attempts to set up such committees but all seem to have been short lived. As yet, there have been no accounts of what may have happened in these cases so it is unclear why they have been unsuccessful. The aims of such committees have varied somewhat, but include the following: (a) To provide retrospective discussion of decisions made concerning the care of babies where ethical issues are involved in order to evolve a body of experience that may aid such decision making in the future. (b) To provide a link between a neonatal unit and the community within which it operates so that knowledge of practice within the unit is better known outside and that those in the unit are more aware of attitudes in the wider community. (c) To undertake follow-up studies of children who have received neonatal care or to review the results of such studies. The need for information from follow-up studies to inform decision making is obvious. However, not all units undertake systematic follow-up studies. Despite the difficulties, it is highly desirable that studies should relate to a geographical population rather than the children who have passed through a unit. They should include, for example, infants for whom neonatal care was sought but who were not admitted for one reason or another. As well as following up surviving children and their parents, it is desirable that parents whose children have died should be contacted sometime after the event so that their views of what happened may be obtained. Ideally, follow-up studies should include information about parental attitudes to any disabilities their children may have, the impact of such disabilities on all members of the family and the support services, formal and informal, that the family needs and their availability.
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Ethics committees exist in many hospitals in the U.S.A. Their function seems rather different from what I have outlined above and reflects the particular situation in that country. Their main purposes seem to be to resolve disputes between parents and medical staff about the treatment of children and to try and provide medical staff with protection against legal action by parents. Conclusions
Thus far, I have tried to provide a guide to the main issues that have been raised in discussions about the continued treatment of very sick newborns. I have tried not to let my own view and feelings intrude. But several of those who were kind enough to comment on an earlier draft said I should not remain on the fence and should make my own position clear. So I will end by providing my own conclusions to the debate. Decision making about very sick infants cannot be avoided. Continued treatment may allow difficult decisions to be ducked but in itself it constitutes a policy. My impression is that, not surprisingly, there is a tendency to put off overt decision making and that in some cases care would be improved by consideration of all the options at an earlier point than sometimes happens. While the paediatricians have prime responsibility, all staff should be involved in decision making and the conclusions should be presented to parents for their decision. One of the most difficult tasks is knowing how to present this information to parents to ensure they are fully informed without overburdening them and to fully include them in decision making without pushing all the responsibility onto them. But the child is theirs and they will live with the outcome of whatever is decided. For parents there is a uniqueness in the decision making which is not shared by the professionals. While I would agree with those, like Mary Warnock [13], who argues that parents cannot and should not make decisions in matters of professional expertise, I do not think this means they should be excluded from decisions about future treatment. The decisions we are discussing are not technical but moral and social ones taken in the light of professional and technical expertise. Discussion and debate about decision making should form an important part of the continuing education of medical and nursing staff in neonatal units. Often it may be helpful to discuss cases which the staff have not been involved with the care of the baby and here film material can be valuable. Discussions with parents whose children died in the neonatal period or who survived with or without damage may be valuable, as are role play techniques. The aim of such continuing education is to improve decision-making practice in a situation where it is probably impossible to evolve specific guidelines to cover all eventualities. If a decision has been taken to cease active treatment, it is then the responsibility of the staff to ensure that a baby dies quickly and as painlessly as possible. As I have said already, the legal process does not seem to be very helpful in resolving present difficulties. At best, it serves as a rather clumsy long stop and, at worse, the uncertainties encourage a policy of defensive over-treatment. While it is easy to call for a clarification of the legal position it is much less easy to see how this might be brought about. I think something along the lines of the Brahams and
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Brahams [2] proposal is desirable. I think too that a majority of the public would support a policy of considered selective non-treatment. But as recent discussions about embryo research and the regulation of the use of techniques for assisted fertilization show, there is no concensus about such matters. A similar point could be made about the reaction to the recent case of the sterilization of a severely subnormal girl. While politicians (inside or outside the Government) seem unable to provide leadership on these matters, it seems unlikely that the legal situation will be clarified. An added complication here is the growing role of prenatal diagnosis and screening. If we permit, or even encourage, the abortion of fetuses with neural tube defects, Down’s Syndrome and, in the near future, cystic fibrosis, are we not also under some pressure to take clear and considered decisions about the continued treatment of seriously damaged infants? If the law cannot provide an adequate framework in which decision making can proceed, I think we must seek other means. Providers of neonatal care must be seen to be operating with the consent and support of the communities they serve. And at the individual level, there must be a relationship of trust between parents and those who care for their children. So far, in Britain, the review committtee model has not proved to be very successful. But perhaps we should persist and try different structures and ways of operating until more satisfactory forms are evolved. I think the need is very clear so that the incentives to find answers are strong. References
4 5
6 I 8 9 10 11 12 13 14 15
Brahams, D. (1986): Severely handicapped babies and the law. The Lancet, i, 984-985. Brahams, D.J. and Brahams, M.H. (1983): The Arthur case - a proposal for legislation. J. Med. Ethics, 9, 12-17. Campbell, A.G.M. (1986): Ethical problems in neonatal care. In: Textbook of Neonatology. Editor: N.R.C. Roberton. Churchill Livingstone, Edinburgh. de Cruz, S.P. (1987): Abortion, C v Sand the law. Family Law, 17,319-323. Davis, J.A. (1983): Ethical issues in neonatal intensive care. In: Parent-Baby Attachment in Premature Infants. Editors: J.A. Davis, M.P.M. Richards and N.R.C. Roberton. Croom Helm, London. Guillemin, J.H. and Holmstrom, L.L. (1987): Mixed Blessings. Intensive Care for Newborns, Oxford University Press, New York. Gustaitis, R. and Young, E.W.D. (1986): A Time to be Born: A Time to Die. Conflicts and ethics in an intensive care nursery. Addison Wesley, Reading, Mass. Harrison, H. (1986): Neonatal intensive care: parents role in ethical decision making. Birth, 13, 165-175. Kuhse, H. and Singer, P. (1985): Should the Baby Live? Oxford University Press, Oxford. Lorber, J. (1972): Spina bifida cystica. Results of treatment of 270 consecutive cases with criteria for selection for the future. Arch. Dis. Child., 47, 854-873. Simms, M. (1985): Surgery for retarded infants. The Lancet, ii. Nov. 2. Stinson, R. and Stinson, P. (1983): The Long Dying of Baby Andrew. Atlantic - Little Brown, Boston. Warnock, M. (1987): Medical advances bring ethical responsibilities. The Listener, 4th June. Weir, R. (1984): Selective non-treatment of handicapped newborns. Oxford University Press, New York. Whitelaw, A. (1986): Death as an option in neonatal care. The Lancet, ii, 328-331.