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Enough is enough — when to stop neonatal care
Enough is enough - when to stop neonatal care
I. A. Laing, G. C. Halley Neonatal units are a luxury limited to an affluent minority of the earth's population. The perinatal mortality is higher than 100 deaths per 1000 deliveries in some parts of the developing world. By contrast it has dropped to under 10 per 1000 in wealthy societies including the UK, this decrease being largely due to improved standards of nutrition and hygiene. About 700000 infants are born every year in the UK, and of these more than 100000 need some form of special care while about 14000 are offered a high level of neonatal intensive care. The commonest causes of neonatal death among live-born children in the Western World are extreme prematurity, severe congenital abnormalities and perinatal asphyxia. Neonatal units may provide life-support for such infants until recovery or inevitable death. They may also support infants during a time that the outcome is very uncertain both in terms of mortality and morbidity.
home) A decrease in mortality associated with improvements in intensive care can be shown) However there continues to be debate about the limit of viability of the extreme preterm infant. In an attempt to provide information and counselling for the parents of infants born between 22 - 25 weeks a recent study looked at the mortality and morbidity figures from a single hospital over a 3-year-period. 4 Their findings supported the conclusion that aggressive resuscitation is definitely indicated at 25 weeks, but is not indicated at 22 weeks gestation. It is not so easy to apply rules to those infants born at 23 or 24 weeks gestation. The occasional child in this group may do well but the decision whether the associated mortality and morbidity is justified needs to be discussed between parents, health care providers, and society as a whole. As neonatal intensive care continues to advance it is inevitable that infants with conditions previously considered to be incompatible with life will survive. Unfortunately the reduction in mortality may be accompanied by an increase in major handicap, especially in those children with chromosomal abnormalities or those with profound perinatal asphyxia. Long term problems of physical impairment and mental retardation place a very significant stress on many families as well as on society. Paediatricians have been compelled to review their policies as to who should receive intensive care, and in what circumstances continuing life-support might be considered detrimental to the child and family. In 1973 Duff and Campbell reported that 14% of all deaths in Yale Neonatal Intensive Care Unit (NICU) followed decisions to withdraw care. 5 In 1986 Whitelaw announced that 30% of all deaths in the Hammersmith NICU occurred after considered withdrawal of care. / The public needs to be reassured that decision making is open, thoughtful, ethical and compassionate.
History Intensive care of the sick newborn was first practised in the 1960s. In the following decades a rapid increase in our knowledge of preterm physiology and development, accompanied by necessary advances in technology, allowed the fundamental problems of assisted ventilation and nutrition to be managed safely and appropriately. Survival of infants weighing less than 600 g at birth is now possible and occasionally the child born at 23 weeks may also be managed successfully. 1'2 75% of infants weighing between 750 and 1000 g at birth and almost 90% of those with a birthweight of 1001-1500g may survive to go Ian A. Laing MD, FRCPE, Clinical Director, Neonatal Unit,
Simpson Memorial Maternity Pavilion, Lauriston Place, Edinburgh EH3 9YW. Gillian C. Halley MRCP, Research Fellow, Department of Child Life and Health, University of Edinburgh. Correspondence and requests for offprints to IAL. Current Paediatrics (1995) 5, 53-58 © 1995PearsonProfessionalLtd
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Legal implications in the UK Can the law provide the solution for difficult cases when withdrawal of invasive support is being contemplated? Children with Down's syndrome have been at the centre of many of the disputes argued in the courts of law. In London in 1981 the parents of a girl with Down's syndrome who had duodenal atresia decided against surgery which was necessary to relieve the intestinal obstruction. The court of appeal however ordered that the infant should have the operation which was duly carried out against the parents wishes. 6 In the same year a consultant paediatrician prescribed repeated doses of dihydrocodeine for an infant with Down's syndrome who had been rejected by his parents. The child died at the age of 3 days and the paediatrician was charged with murder at the instigation of an independent pressure group. The doctor was acquitted of both murder and attempted murder but the case continues to emphasise to paediatricians the potential conflict which lies between the exigencies of the law and what may be perceived by the doctor as being in the best interests of the patient] In Britain there have been few recent medico-legal precedents to guide neonatologists, although ethical decisions about extreme preterm infants occur not infrequently in tertiary referral centres. A fatal accident inquiry was convened in Glasgow in 1987 to investigate the action of a paediatrician who was alleged to have witheld resuscitation from a preterm infant on the grounds that the child's birthweight was below 800 g. The Sheriff found that the doctor was right to come to a decision based on the clinical evidence at the time. 8 Nevertheless it may be that today paediatricians are obliged to resuscitate liveborn neonates from as early as 22-24 weeks gestation unless the individual infant is severely malformed at birth. 9 Paediatricians may feel that withdrawal of intensive care is in some instances in the best interests of the infant although in theory this might be interpreted as an act of murder, and parents who agree to such a course might be regarded as co-conspirators. ~° If an infant can be shown to have severe brain damage, however, there is an important precedent which may legally justify resorting to withdrawal of neonatal intensive care tl even though the infant is neither dying nor demonstrably in pain. Furthermore in the decision of Re B 6 the court held that the prospect of a 'demonstrably awful life' was sufficient for selective non-treatment to be appropriate.
Bdiefs The law may provide boundaries within which the neonatal team should work and the care-givers may strive for what they consider to be the infant's best interests. But the spectrum of beliefs is wide and
complex. Two extreme views of clinical care are attractive in their simplicity: 1. All medical interferences in natural processes such as disease or death are intrusions into a pre-ordained course and such intrusions should not be tolerated. 2. Medical science has ever-increasing technology, and so all available resources should be directed towards sacred life, irrespective of the quality of that life in the future. A great diversity of opinion lies between these two viewpoints. It is apparent that a universal degree of intensive care is unrealistic and inappropriate if the reactions of individual patients and families are to be heeded. Christopher Nolan, a 22-year-old man paralysed as a result of birth asphyxia, writes: 'Each day of my life is a bonus of comfortable blessings. My days of sadnesses are as of nothing compared with my serene days of sobbing fresh pleasure'.12 By contrast, Robert Stinson reacted to the sufferings of his premature son by writing: 'As often as I wanted to gather him into my arms, I wanted him to be allowed to die'. 13 The intense emotional conflict which may affect the parents of physically or mentally impaired children has recently been highlighted in the Journal of Medical Ethics. 14 Society may wish to be represented in decisions about the future of a gravely ill newborn child, but questions then arise as to how this representation can best be achieved. The larger the committee of representatives, the less likely it is that a consensus will be obtained; the smaller the team, the more it becomes probable that individual opinion will govern the outcome. There are also philosophical difficulties involved in discussing critically ill neonates. Not all authors are agreed that a newborn infant is an independent human being with rights equal to those of older members of the human race. One argument is that, in order to be a person one must have awareness of oneself, and this may therefore not apply until later childhood. Doyal and Wilsher ~s put forward the view that 'the possession of human rights depends on the ability to exercise them - - to make choices and to act in accordance with perceived needs and preferences'. Gillon points out: 'Viability, arbitrary dates of gestation, and passage through the birth canal and its associated physiological changes are, like quickening, implausible criteria on which to base fundamental moral distinctions', t6 The present authors believe that the time of departure from the birth canal into the outside world is the first moment of a separate physical existence and therefore the first moment when the child's rights are independent of those of other members of the human race. But this idea carries with it an important corollary. If it is wrong to withhold intensive care from an adult with a particular malformation or disability, then it may also be wrong to deny the opportunity of the
E N O U G H IS E N O U G H - W H E N TO STOP N E O N A T A L CARE
same degree of intensive care to a newborn with a similar defect. A child with severe mental retardation, limb paralysis, blindness and seizures may be thought to have a miserable existence, but at what degree of handicap is an infant considered to be better off dead? Decision-making becomes still harder when the uncertainty of outcome is acknowledged. Experience and advancing technology increase the accuracy of predicting the degree of handicap, 17 but our expertise does not yet allow physicians to know exactly how a child with a neurological deficit would function in years to come. Important work is now being carried out to assess the more subtle effects of prematurity, which can only be detected when the child reaches school age. Of infants born under 32 weeks gestation 19% require special education, 18 and at 8 years of age only 14% of extremely low birth weight survivors have no functional limitations on a multiattribute health status classification, compared to 50% in a matched reference group. 19 The same group were also shown to have significantly lower health related quality of life scores) ° When more severe handicap is suspected there is a responsibility to provide a perspective for the care-giving team and the family, based on all available knowledge. Occasionally it may be possible to be dogmatic. Referring to severely impaired children with trisomy 18, Smith recommends that once the diagnosis has been established there should be 'limitation of all medical means for prolongation of life'Y When the decision to withdraw life support has been taken, is there any difference between an act of commission and one of omission? Is it 'wrong' to take an infant's life by administering a poison, but 'right' to allow the child to die slowly of malnutrition? In a thoughtful commentary Chiswick writes: 'I see a real moral difference between hastening death of a newly born baby by withdrawing ventilatory support and doing so by withholding fluids or nutrition'. 2z While the current authors agree with this view it is hard to identify a distinction, except perhaps in time, between withholding milk given into the stomach by nasogastric tube and withholding oxygen delivered to the lung by endotracheal tube. Gillon states: 'While there may be some social benefits in distinguishing between actively 'allowing to die' and painlessly killing such infants, there is, I believe, no other moral difference, and doctors who accept such 'allowing to die' of severely handicapped newborn infants should not deceive themselves into believing that there is such a difference', t6 Campbell replies: 'There may be no moral distinction between 'killing' and 'allowing to die' but there is a powerful psychological distinction which is important to the staff of intensive care units. To them there is a big difference between not using a respirator to keep an infant of 600 g alive and giving a lethal injection, although the end result is the same'. 23
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It i s c e r t a i n l y true that if intensive care is withdrawn, the intention is that the infant should die. Bissenden points out that: 'Whether this is killing or allowing to die has no moral relevance - - what is important is whether the decision is correct', z4 Deliberately to stop an infant's heart beating with an injection of potassium chloride must nevertheless be unacceptable to us all; on the other hand, the relief from suffering achieved by administering opiates at the time of removal of the ventilator may provide a humane end to a painful existence. The parents also see this distinction. It is entirely appropriate that pressure groups should ask penetrating questions and should seek to influence others by developing their beliefs. There is however great danger to the child if critics, who are ignorant both of a diseases course and prognosis, seek to impose an outcome on a particular family, especially when the result would conflict with the considered view of a circle of experienced, compassionate and well-informed advisers. Furthermore, Mason and Meyers rightly point out that 'risk of prosecution, small though it may be, does not provide the best backdrop for informed and compassionate care of the defective neonate'. 25
The approach of the clinical team In our opinion there is little justification for the claim that one cannot withdraw from intensive care once a course of therapy has been started. The decision whether to embark on intensive care may first confront the junior resident at the moment of the infant's birth. Many senior paediatricians recommend that almost all live-born infants should be actively supported from labour ward to the neonatal unit. The clear advantages of this approach are that senior staff can become involved, a mature decision can be taken in the light of a surer prognosis, and parents can begin to assimilate the reality of their child's situation. A decision on whether or not to withdraw from an established regimen of intensive care can then be taken. The two primary responsibilities of a physician throughout an infant's terminal illness are to minimise the suffering of the child during those last minutes, and to provide maximal support for the family.26 During the course of chronic, irreversible paediatric illness there is every opportunity to become intimate both with the child and the family, and to adopt care strategies which are based on the detailed information available. It is unacceptable that a clinical decision regarding the life of a newborn infant should be taken unilaterally by a fallible physician. Worse still is the idea that parents should be presented with the bald facts and then compelled to decide the next step. Their minds will be in turmoil and, whatever decision they take, they will be forced to live with their perceived guilt for decades to come. Outlined below is the process of guided c o n s e n s u s 26 in which
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emphasis is laid on the practical responsibilities faced by the perinatal team and on the position of the infant's surrogate decision makers. When the question of withdrawal of invasive lifesupport is brought up, the consultant physician should lead the interested parties through an elaborate series of steps, the very complexity of which acts as a safety net for the infant. The child's parents should be involved during each stage. In addition, every aspect of the procedure should be documented in the child's casenotes and signed by the responsible doctors. Whenever the possibility of such a withdrawal is confronted, documentation should begin with why and how the initial question was raised. A summary should then be made which encompasses the child's past history and demonstrates clearly the course of events leading up to the serious problems under discussion. These facts should be presented in the full knowledge of up-to-date medical and scientific advances in the subject. One can describe what is known, what can still be discovered and what is currently unknowable. Sometimes, the probabilities of brain damage and its anticipated severity contribute to the overall picture. An assessment is made of whether the child is suffering distress at the time. A conference, involving those members of staff who know the infant and parents well, should then meet to discuss all the details, including the family situation. Particular attention is paid to the parents' current knowledge, and their reactions to the severity of their child's illness, including any voiced or implied opinions they may have given about the infant's future. If the conference is unanimous that a course of 'comfort measures only' should be discussed with the child's family, then a small number, preferably not more than three, professionals are chosen to present the facts and options to the parents; two of the discussants will normally be a consultant physician and a senior nurse. This discussion m u s t involve both father and mother if both parents are still involved in the child's welfare. The interview requires to be conducted with great sensitivity and patience, so that a balance may be struck between giving the parents their rightful responsibility to participate in decision-making and yet providing recommendations which can help them. Freedom to reject such recommendations is essential and the staff should not be surprised if this occurs initially. For the sake of their future, the family must be confident that the management course was humane and that the experienced perinatal team concurred with the parents and therefore shared their moral and legal responsibility. It is an essential principle that there is adequate time for discussion; this always involves several meetings. The parents may be encouraged to invite further advice from other members of their family, the clergy, the department of social work, or from friends in whom they have confidence. The young single teenage mother may feel abandoned, and will
rely heavily on the tact of the care team to help her obtain counsel from her circle of relatives or friends. If it is possible to consult with a subspecialty adviser then this should be arranged. For example, the child who is deteriorating on a ventilator because of a chronic lung disease may be seen by a paediatrician who has special expertise in respiratory disorders and who is not part of the neonatal team caring for the infant's needs. An independent opinion can be a source of great comfort to family and professionals alike. On the rare occasions when withdrawing or withholding invasive life-support becomes an ethical dilemma, advice may be obtained from many different sources including the British Medical Association, or a corresponding body outwith the UK, medical defence organizations, senior colleagues in other regional institutions or from legal authorities. In the USA, Infant-Care Review Committees (including professional and lay members) have been set up in many hospitals which can arbitrate when parents and medical staff cannot agreeY '28 If no consensus can be achieved then it is reasonable to continue with invasive support until new clinical factors, or the passage of time, alter the equation. In the unusual circumstance of an unresolved ethical dilemma, it may be necessary to seek the assistance of the courts of law. The most appropriate way to do this in England and Wales would be through an application for wardship; such a route was followed in the leading case of Re B (a Minor). 6 The same result might be achieved in Scotland by referring the case to the Reporter to the Children's Panel. The above complex system of achieving a decision generally coincides with the best interests of the child and provides an environment in which outside interests are of secondary importance but are, nonetheless, necessary safeguards. It is possible that this intricate but overt structure might be strong enough to make court actions, such as that against Dr Leonard Arthur, 16 less likely to occur.
Death If death is inevitable, or is regarded as being in the best interests of the child, then the parents should be shown by words and actions that there is a redirection of intensive care towards comfort measures, rather than a course of 'selective non-treatment'. 29 During preparation for death, the child can be offered warmth, freedom from pain and social comfort. Visits from relatives are to be encouraged, particularly from parents, grandparents and siblings. Small children are generally not frightened by the experience and can serve to enhance the feeling of a complete family supporting a dying member. Photographs are taken and the parents are encouraged to cuddle the infant even while their child is still being ventilated. Clothes brought by the family can be used to
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emphasize the child's individuality. A religious service at this time is often a source of solace to both family and staff. The senior physician who is closely involved with the family will gradually become aware when the time has come to discontinue invasive support. Opiate relief for potential discomfort is given following which the ventilator, monitors and all other impersonal equipment are removed, and the baby is placed in his or her parents' arms for what may be only minutes of remaining life. At this most sensitive of times the parents often like to listen through a stethoscope to the beating of their baby's heart) ° A small number of familiar staff should stay with the parents throughout this period, except at times when they feel the family wish to be alone. Staff responsibilities to other patients should be taken on by colleagues during these critical hours. A warm, private room must be dedicated to the family for this time of bereavement, not least because the infant's last minutes should be spent away from the intrusive alarms of an intensive care unit. After death has been pronounced, the family should be encouraged to cradle their child for as long as they wish; this may be for several hours. Parents often wish to groom their baby, and may ask to have a lock of hair and the identification anklets as keepsakes. Staff may accompany the family to the local chapel on the following day to spend further moments in grieving.
After death The bereaved family will usually require guidance through the administrative details and other anxieties which ensue. This can involve discussing the provision of a birth certificate and death certificate, whether to choose burial or cremation, how to ensure that the infant wears the clothes of their choice at the funeral service, what to tell friends, and how and when their lives may become normal again. Other anxieties may be voiced: How soon will the weeping stop? How soon will regular sleeping return? How soon will appetites, including sexual, become normal? The commitment of the professional team must extend to these and many more aspects. Community support can only begin if the general practitioner, social worker and health visitor are kept in touch with the events in the NICU. The obstetrician looking after the mother 'must also know of the child's death so that the relationship can continue on a sensitive footing. In the UK the parents can be put in touch with self-help organizations such as 'Compassionate Friends' or the 'Stillbirth and Neonatal Death Society'. The family will come to realise that contact with the staff does not cease with the death of the child. Two further aspects of after-care must be detailed. Usually within 24 h of the infant's death, the senior paediatrician ought to interview both parents to request an autopsy examination. At first this may
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seem to be the final cruelty after the series of disasters which have befallen a child and family. However, there is one overriding factor which must be explained: without a post-mortem examination information crucial to the parents may be lost and genetic advice regarding future pregnancies of the mother, or members of her family, will be incomplete. Parents who elect to have an autopsy performed often express relief and gladness to have the opportunity of seeing and possessing a copy of the report, which describes their infant's structure in detail. Staff who are experienced in follow-up interviews are in little doubt that this description contributes positively to the grieving process and allows parents to leave behind many doubts, and perhaps some guilt. One followup interview should be dedicated to exploring in detail the genetic implications of the infant's death with reference to clinical and autopsy diagnoses. Further expert advice may be needed from a specialist in genetics. The second aspect of after-care which needs further comment is the follow-up series of meetings. These may appropriately take place in an office outside the intensive care unit and away from the crying of babies. Ideally the nurse and doctor closest to the family should arrange this. The meetings are often most successful when they are freely structured and offer the parents a chance to talk about their child. The conversation may range from medical details of therapy to humorous anecdotes of the infant's life. Parents may find that friends and neighbours, who never had the opportunity to get to know their child, may find it difficult to be sources of strength through the early months of grief. It is understandable that both mother and father should wish to talk at length to the few people who remembered the nuances of their child's personality. A bereaved mother wrote: 'Most people did not know how to respond to us. They did not know what to say, but usually once we began to talk they would follow our lead. However, some people deliberately avoided the whole subject as if we hadn't had a baby, yet we knew they knew. It was both hurtful to us and hard since it was the subject uppermost in our minds and we both found relief in talking about it') 1 The parents should be left in no doubt that the clinical team will maintain an interest in the family's future and that, if a further pregnancy occurs, the next child will be awaited with considerable excitement.
Conclusion To lay observers the discontinuation of life-support for a baby may seem callous 'selective non-treatment'. To the professional staff caring for the infants it is a task which is extremely demanding in time and in intellectual and emotional energy. All aspects of the infant's life must be considered before the most compassionate decision can be taken. The autonomy of the parents as surrogate decision-makers must be
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respected, but they will require confident guidance and reassurance from the staff they have come to trust. The infant's dignity as a complete human being is of paramount importance at all times and it is the responsibility of the staff to provide this human being with freedom from distress and also with physical and social comfort. Society will continue to debate the principle of the sanctity of human life and of the rights of human beings or their advocates to determine their future. Cognisant of these arguments, the neonatal physician and the small team of perinatal staff cannot avoid their moral and legal responsibility to provide the best care for their patient including the withdrawal of invasive life-support when appropriate. Redirection of care to comfort measures is appropriate only after detailed exploration of the alternatives and after a guided consensus has been reached openly with the child's family. There should be no conflict with the law when these principles are followed.
References 1. Yu VYH, Loke HL, Bajuk B e t al. Prognosis for infants born at 23 to 28 weeks' gestation. BMJ 1986; 293: 1200-1203. 2. Whitelaw A. Death as an option in neonatal intensive care. Lancet 1986; ii: 328-331. 3. Stewart AL, Reynolds EOR, Lipscombe AP. Outcome for infants of very low birthweight: survey of world literature. Lancet 1981; i: 1038-1041. 4. Allen MC, Donohue PK, Dusman AE. The limit of viability neonatal outcome of infants born at 22 to 25 weeks' gestation. N Engl J Med 1993; 329: 1597-1601. 5. DuffRS, Campbell AGM. Moral and ethical dilemmas in the special care nursery. New Engl J Med 1973; 289: 890-894. 6. Re B (a Minor) 1981.1 WLR 1421. 7. Editorial. Paediatricians and the law. BMJ 1981; 283: 1280-1281. 8. Brahams D. No obligation to resuscitate a non-viable infant. Lancet 1988; i: 1176. 9. Walker CHM .... officiously to keep alive. Arch Dis Child 1988; 63: 560-564. 10. Kennedy I, Grubb A. Medical law: text and materials. London; Butterworths, 1990; 936-41. 11. Re J (a Minor) 1990; 3 All ER 930, CA. -
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12. Nolan C. Under the Eye of the Clock. Letchworth; Weidenfeld and Nicholson, 1987. 13. Stinson R, Stinson P. The Long Dying of Baby Andrew. Boston; Little Brown & Co, 1983. 14. Simms M. Informed dissent: the views of some mothers of severely mentally handicapped young adults. J Med Ethics 1986; 12: 72-74. 15. Doyal L, Wilsher D. Towards guidelines for withholding and withdrawal of life prolonging treatment in neonatal medicine. Arch Dis Child 1994; 70: F66-70. 16. Gillon R. Conclusion: the Arthur case revisited. BMJ 1986; 292: 543-545. 17. De Vries LS, Dubowitz LMS, Dubowitz V et al. Predictive value of cranial ultrasound in the newborn baby: a reappraisal. Lancet 1985; ii: 137-140. 18. Hille ETM, Lya Den Ouden A, Bauer L, van den Oudenrijn C, Brand R, Verloove-Vanhorick SP. School performance at nine years of age in very premature and very low birth weight infants: Perinatal risk factors and predictors at five years of age. J Pediatr 1994; 125: 426-434. 19. Saigal S, Rosenbaum P, Stotskopf B et al. Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: Comparison with a reference group. J Pediatr 1994; 125: 411-417. 20. Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G. Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 1994; 125: 418-425. 21. Smith DW. Recognizable Patterns of Human Malformation. Genetic, Embryologic and Clinical Aspects. Philadelphia; WB Saunders, 1982. 3rd edition: 14-15. 22. Chiswiek ML. Commentary. Arch Dis Child 1994; 70: F70. 23. Campbell AGM. Ethical issues in child health and disease. Child Health in a Changing Society. Ed JO Forfar. Oxford; Oxford University Press, 1988. 24. Bissenden G. Ethical aspects of neonatal care. Arch Dis Child 1986; 61: 639-641. 25. Mason JK, Myers DW. Parental choice and selective nontreatment of deformed newborns: a view from mid-Atlantic. J Med Ethics 1986; 12: 67-71. 26. Laing IA. Withdrawing from neonatal intensive care. Paediatric Forensic Medicine and Pathology. Ed JK Mason. London; Chapman and Hall Medical, 1989: 131-140. 27. Gillespie C. Letting die severely handicapped children. J Med Ethics 1983; 9: 231. 28. Berseth CL. Ethical dilemmas in the neonatal intensive care unit. Mayo Clin Proc 1987; 62: 67. 29. Weir R. Selective Non-treatment of Handicapped Newborns. New York; Oxford University Press, 1985: 131-134. 30. Laing IA. Advances in neonatal medicine. Current Medicine 4 Royal College of Physicians of Edinburgh. Ed DH Lawson. Edinburgh; Churchill Livingstone, 1994: 121-132. 31. Boston S. Will, My Son. The Life and Death of a Mongol Child. London; Pluto Press, 1981.
I. A. Laing, G. C. Halley Neonatal units are a luxury limited to an affluent minority of the earth's population. The perinatal mortality is higher than 100 deaths per 1000 deliveries in some parts of the developing world. By contrast it has dropped to under 10 per 1000 in wealthy societies including the UK, this decrease being largely due to improved standards of nutrition and hygiene. About 700000 infants are born every year in the UK, and of these more than 100000 need some form of special care while about 14000 are offered a high level of neonatal intensive care. The commonest causes of neonatal death among live-born children in the Western World are extreme prematurity, severe congenital abnormalities and perinatal asphyxia. Neonatal units may provide life-support for such infants until recovery or inevitable death. They may also support infants during a time that the outcome is very uncertain both in terms of mortality and morbidity.
home) A decrease in mortality associated with improvements in intensive care can be shown) However there continues to be debate about the limit of viability of the extreme preterm infant. In an attempt to provide information and counselling for the parents of infants born between 22 - 25 weeks a recent study looked at the mortality and morbidity figures from a single hospital over a 3-year-period. 4 Their findings supported the conclusion that aggressive resuscitation is definitely indicated at 25 weeks, but is not indicated at 22 weeks gestation. It is not so easy to apply rules to those infants born at 23 or 24 weeks gestation. The occasional child in this group may do well but the decision whether the associated mortality and morbidity is justified needs to be discussed between parents, health care providers, and society as a whole. As neonatal intensive care continues to advance it is inevitable that infants with conditions previously considered to be incompatible with life will survive. Unfortunately the reduction in mortality may be accompanied by an increase in major handicap, especially in those children with chromosomal abnormalities or those with profound perinatal asphyxia. Long term problems of physical impairment and mental retardation place a very significant stress on many families as well as on society. Paediatricians have been compelled to review their policies as to who should receive intensive care, and in what circumstances continuing life-support might be considered detrimental to the child and family. In 1973 Duff and Campbell reported that 14% of all deaths in Yale Neonatal Intensive Care Unit (NICU) followed decisions to withdraw care. 5 In 1986 Whitelaw announced that 30% of all deaths in the Hammersmith NICU occurred after considered withdrawal of care. / The public needs to be reassured that decision making is open, thoughtful, ethical and compassionate.
History Intensive care of the sick newborn was first practised in the 1960s. In the following decades a rapid increase in our knowledge of preterm physiology and development, accompanied by necessary advances in technology, allowed the fundamental problems of assisted ventilation and nutrition to be managed safely and appropriately. Survival of infants weighing less than 600 g at birth is now possible and occasionally the child born at 23 weeks may also be managed successfully. 1'2 75% of infants weighing between 750 and 1000 g at birth and almost 90% of those with a birthweight of 1001-1500g may survive to go Ian A. Laing MD, FRCPE, Clinical Director, Neonatal Unit,
Simpson Memorial Maternity Pavilion, Lauriston Place, Edinburgh EH3 9YW. Gillian C. Halley MRCP, Research Fellow, Department of Child Life and Health, University of Edinburgh. Correspondence and requests for offprints to IAL. Current Paediatrics (1995) 5, 53-58 © 1995PearsonProfessionalLtd
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Legal implications in the UK Can the law provide the solution for difficult cases when withdrawal of invasive support is being contemplated? Children with Down's syndrome have been at the centre of many of the disputes argued in the courts of law. In London in 1981 the parents of a girl with Down's syndrome who had duodenal atresia decided against surgery which was necessary to relieve the intestinal obstruction. The court of appeal however ordered that the infant should have the operation which was duly carried out against the parents wishes. 6 In the same year a consultant paediatrician prescribed repeated doses of dihydrocodeine for an infant with Down's syndrome who had been rejected by his parents. The child died at the age of 3 days and the paediatrician was charged with murder at the instigation of an independent pressure group. The doctor was acquitted of both murder and attempted murder but the case continues to emphasise to paediatricians the potential conflict which lies between the exigencies of the law and what may be perceived by the doctor as being in the best interests of the patient] In Britain there have been few recent medico-legal precedents to guide neonatologists, although ethical decisions about extreme preterm infants occur not infrequently in tertiary referral centres. A fatal accident inquiry was convened in Glasgow in 1987 to investigate the action of a paediatrician who was alleged to have witheld resuscitation from a preterm infant on the grounds that the child's birthweight was below 800 g. The Sheriff found that the doctor was right to come to a decision based on the clinical evidence at the time. 8 Nevertheless it may be that today paediatricians are obliged to resuscitate liveborn neonates from as early as 22-24 weeks gestation unless the individual infant is severely malformed at birth. 9 Paediatricians may feel that withdrawal of intensive care is in some instances in the best interests of the infant although in theory this might be interpreted as an act of murder, and parents who agree to such a course might be regarded as co-conspirators. ~° If an infant can be shown to have severe brain damage, however, there is an important precedent which may legally justify resorting to withdrawal of neonatal intensive care tl even though the infant is neither dying nor demonstrably in pain. Furthermore in the decision of Re B 6 the court held that the prospect of a 'demonstrably awful life' was sufficient for selective non-treatment to be appropriate.
Bdiefs The law may provide boundaries within which the neonatal team should work and the care-givers may strive for what they consider to be the infant's best interests. But the spectrum of beliefs is wide and
complex. Two extreme views of clinical care are attractive in their simplicity: 1. All medical interferences in natural processes such as disease or death are intrusions into a pre-ordained course and such intrusions should not be tolerated. 2. Medical science has ever-increasing technology, and so all available resources should be directed towards sacred life, irrespective of the quality of that life in the future. A great diversity of opinion lies between these two viewpoints. It is apparent that a universal degree of intensive care is unrealistic and inappropriate if the reactions of individual patients and families are to be heeded. Christopher Nolan, a 22-year-old man paralysed as a result of birth asphyxia, writes: 'Each day of my life is a bonus of comfortable blessings. My days of sadnesses are as of nothing compared with my serene days of sobbing fresh pleasure'.12 By contrast, Robert Stinson reacted to the sufferings of his premature son by writing: 'As often as I wanted to gather him into my arms, I wanted him to be allowed to die'. 13 The intense emotional conflict which may affect the parents of physically or mentally impaired children has recently been highlighted in the Journal of Medical Ethics. 14 Society may wish to be represented in decisions about the future of a gravely ill newborn child, but questions then arise as to how this representation can best be achieved. The larger the committee of representatives, the less likely it is that a consensus will be obtained; the smaller the team, the more it becomes probable that individual opinion will govern the outcome. There are also philosophical difficulties involved in discussing critically ill neonates. Not all authors are agreed that a newborn infant is an independent human being with rights equal to those of older members of the human race. One argument is that, in order to be a person one must have awareness of oneself, and this may therefore not apply until later childhood. Doyal and Wilsher ~s put forward the view that 'the possession of human rights depends on the ability to exercise them - - to make choices and to act in accordance with perceived needs and preferences'. Gillon points out: 'Viability, arbitrary dates of gestation, and passage through the birth canal and its associated physiological changes are, like quickening, implausible criteria on which to base fundamental moral distinctions', t6 The present authors believe that the time of departure from the birth canal into the outside world is the first moment of a separate physical existence and therefore the first moment when the child's rights are independent of those of other members of the human race. But this idea carries with it an important corollary. If it is wrong to withhold intensive care from an adult with a particular malformation or disability, then it may also be wrong to deny the opportunity of the
E N O U G H IS E N O U G H - W H E N TO STOP N E O N A T A L CARE
same degree of intensive care to a newborn with a similar defect. A child with severe mental retardation, limb paralysis, blindness and seizures may be thought to have a miserable existence, but at what degree of handicap is an infant considered to be better off dead? Decision-making becomes still harder when the uncertainty of outcome is acknowledged. Experience and advancing technology increase the accuracy of predicting the degree of handicap, 17 but our expertise does not yet allow physicians to know exactly how a child with a neurological deficit would function in years to come. Important work is now being carried out to assess the more subtle effects of prematurity, which can only be detected when the child reaches school age. Of infants born under 32 weeks gestation 19% require special education, 18 and at 8 years of age only 14% of extremely low birth weight survivors have no functional limitations on a multiattribute health status classification, compared to 50% in a matched reference group. 19 The same group were also shown to have significantly lower health related quality of life scores) ° When more severe handicap is suspected there is a responsibility to provide a perspective for the care-giving team and the family, based on all available knowledge. Occasionally it may be possible to be dogmatic. Referring to severely impaired children with trisomy 18, Smith recommends that once the diagnosis has been established there should be 'limitation of all medical means for prolongation of life'Y When the decision to withdraw life support has been taken, is there any difference between an act of commission and one of omission? Is it 'wrong' to take an infant's life by administering a poison, but 'right' to allow the child to die slowly of malnutrition? In a thoughtful commentary Chiswick writes: 'I see a real moral difference between hastening death of a newly born baby by withdrawing ventilatory support and doing so by withholding fluids or nutrition'. 2z While the current authors agree with this view it is hard to identify a distinction, except perhaps in time, between withholding milk given into the stomach by nasogastric tube and withholding oxygen delivered to the lung by endotracheal tube. Gillon states: 'While there may be some social benefits in distinguishing between actively 'allowing to die' and painlessly killing such infants, there is, I believe, no other moral difference, and doctors who accept such 'allowing to die' of severely handicapped newborn infants should not deceive themselves into believing that there is such a difference', t6 Campbell replies: 'There may be no moral distinction between 'killing' and 'allowing to die' but there is a powerful psychological distinction which is important to the staff of intensive care units. To them there is a big difference between not using a respirator to keep an infant of 600 g alive and giving a lethal injection, although the end result is the same'. 23
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It i s c e r t a i n l y true that if intensive care is withdrawn, the intention is that the infant should die. Bissenden points out that: 'Whether this is killing or allowing to die has no moral relevance - - what is important is whether the decision is correct', z4 Deliberately to stop an infant's heart beating with an injection of potassium chloride must nevertheless be unacceptable to us all; on the other hand, the relief from suffering achieved by administering opiates at the time of removal of the ventilator may provide a humane end to a painful existence. The parents also see this distinction. It is entirely appropriate that pressure groups should ask penetrating questions and should seek to influence others by developing their beliefs. There is however great danger to the child if critics, who are ignorant both of a diseases course and prognosis, seek to impose an outcome on a particular family, especially when the result would conflict with the considered view of a circle of experienced, compassionate and well-informed advisers. Furthermore, Mason and Meyers rightly point out that 'risk of prosecution, small though it may be, does not provide the best backdrop for informed and compassionate care of the defective neonate'. 25
The approach of the clinical team In our opinion there is little justification for the claim that one cannot withdraw from intensive care once a course of therapy has been started. The decision whether to embark on intensive care may first confront the junior resident at the moment of the infant's birth. Many senior paediatricians recommend that almost all live-born infants should be actively supported from labour ward to the neonatal unit. The clear advantages of this approach are that senior staff can become involved, a mature decision can be taken in the light of a surer prognosis, and parents can begin to assimilate the reality of their child's situation. A decision on whether or not to withdraw from an established regimen of intensive care can then be taken. The two primary responsibilities of a physician throughout an infant's terminal illness are to minimise the suffering of the child during those last minutes, and to provide maximal support for the family.26 During the course of chronic, irreversible paediatric illness there is every opportunity to become intimate both with the child and the family, and to adopt care strategies which are based on the detailed information available. It is unacceptable that a clinical decision regarding the life of a newborn infant should be taken unilaterally by a fallible physician. Worse still is the idea that parents should be presented with the bald facts and then compelled to decide the next step. Their minds will be in turmoil and, whatever decision they take, they will be forced to live with their perceived guilt for decades to come. Outlined below is the process of guided c o n s e n s u s 26 in which
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emphasis is laid on the practical responsibilities faced by the perinatal team and on the position of the infant's surrogate decision makers. When the question of withdrawal of invasive lifesupport is brought up, the consultant physician should lead the interested parties through an elaborate series of steps, the very complexity of which acts as a safety net for the infant. The child's parents should be involved during each stage. In addition, every aspect of the procedure should be documented in the child's casenotes and signed by the responsible doctors. Whenever the possibility of such a withdrawal is confronted, documentation should begin with why and how the initial question was raised. A summary should then be made which encompasses the child's past history and demonstrates clearly the course of events leading up to the serious problems under discussion. These facts should be presented in the full knowledge of up-to-date medical and scientific advances in the subject. One can describe what is known, what can still be discovered and what is currently unknowable. Sometimes, the probabilities of brain damage and its anticipated severity contribute to the overall picture. An assessment is made of whether the child is suffering distress at the time. A conference, involving those members of staff who know the infant and parents well, should then meet to discuss all the details, including the family situation. Particular attention is paid to the parents' current knowledge, and their reactions to the severity of their child's illness, including any voiced or implied opinions they may have given about the infant's future. If the conference is unanimous that a course of 'comfort measures only' should be discussed with the child's family, then a small number, preferably not more than three, professionals are chosen to present the facts and options to the parents; two of the discussants will normally be a consultant physician and a senior nurse. This discussion m u s t involve both father and mother if both parents are still involved in the child's welfare. The interview requires to be conducted with great sensitivity and patience, so that a balance may be struck between giving the parents their rightful responsibility to participate in decision-making and yet providing recommendations which can help them. Freedom to reject such recommendations is essential and the staff should not be surprised if this occurs initially. For the sake of their future, the family must be confident that the management course was humane and that the experienced perinatal team concurred with the parents and therefore shared their moral and legal responsibility. It is an essential principle that there is adequate time for discussion; this always involves several meetings. The parents may be encouraged to invite further advice from other members of their family, the clergy, the department of social work, or from friends in whom they have confidence. The young single teenage mother may feel abandoned, and will
rely heavily on the tact of the care team to help her obtain counsel from her circle of relatives or friends. If it is possible to consult with a subspecialty adviser then this should be arranged. For example, the child who is deteriorating on a ventilator because of a chronic lung disease may be seen by a paediatrician who has special expertise in respiratory disorders and who is not part of the neonatal team caring for the infant's needs. An independent opinion can be a source of great comfort to family and professionals alike. On the rare occasions when withdrawing or withholding invasive life-support becomes an ethical dilemma, advice may be obtained from many different sources including the British Medical Association, or a corresponding body outwith the UK, medical defence organizations, senior colleagues in other regional institutions or from legal authorities. In the USA, Infant-Care Review Committees (including professional and lay members) have been set up in many hospitals which can arbitrate when parents and medical staff cannot agreeY '28 If no consensus can be achieved then it is reasonable to continue with invasive support until new clinical factors, or the passage of time, alter the equation. In the unusual circumstance of an unresolved ethical dilemma, it may be necessary to seek the assistance of the courts of law. The most appropriate way to do this in England and Wales would be through an application for wardship; such a route was followed in the leading case of Re B (a Minor). 6 The same result might be achieved in Scotland by referring the case to the Reporter to the Children's Panel. The above complex system of achieving a decision generally coincides with the best interests of the child and provides an environment in which outside interests are of secondary importance but are, nonetheless, necessary safeguards. It is possible that this intricate but overt structure might be strong enough to make court actions, such as that against Dr Leonard Arthur, 16 less likely to occur.
Death If death is inevitable, or is regarded as being in the best interests of the child, then the parents should be shown by words and actions that there is a redirection of intensive care towards comfort measures, rather than a course of 'selective non-treatment'. 29 During preparation for death, the child can be offered warmth, freedom from pain and social comfort. Visits from relatives are to be encouraged, particularly from parents, grandparents and siblings. Small children are generally not frightened by the experience and can serve to enhance the feeling of a complete family supporting a dying member. Photographs are taken and the parents are encouraged to cuddle the infant even while their child is still being ventilated. Clothes brought by the family can be used to
ENOUGH
emphasize the child's individuality. A religious service at this time is often a source of solace to both family and staff. The senior physician who is closely involved with the family will gradually become aware when the time has come to discontinue invasive support. Opiate relief for potential discomfort is given following which the ventilator, monitors and all other impersonal equipment are removed, and the baby is placed in his or her parents' arms for what may be only minutes of remaining life. At this most sensitive of times the parents often like to listen through a stethoscope to the beating of their baby's heart) ° A small number of familiar staff should stay with the parents throughout this period, except at times when they feel the family wish to be alone. Staff responsibilities to other patients should be taken on by colleagues during these critical hours. A warm, private room must be dedicated to the family for this time of bereavement, not least because the infant's last minutes should be spent away from the intrusive alarms of an intensive care unit. After death has been pronounced, the family should be encouraged to cradle their child for as long as they wish; this may be for several hours. Parents often wish to groom their baby, and may ask to have a lock of hair and the identification anklets as keepsakes. Staff may accompany the family to the local chapel on the following day to spend further moments in grieving.
After death The bereaved family will usually require guidance through the administrative details and other anxieties which ensue. This can involve discussing the provision of a birth certificate and death certificate, whether to choose burial or cremation, how to ensure that the infant wears the clothes of their choice at the funeral service, what to tell friends, and how and when their lives may become normal again. Other anxieties may be voiced: How soon will the weeping stop? How soon will regular sleeping return? How soon will appetites, including sexual, become normal? The commitment of the professional team must extend to these and many more aspects. Community support can only begin if the general practitioner, social worker and health visitor are kept in touch with the events in the NICU. The obstetrician looking after the mother 'must also know of the child's death so that the relationship can continue on a sensitive footing. In the UK the parents can be put in touch with self-help organizations such as 'Compassionate Friends' or the 'Stillbirth and Neonatal Death Society'. The family will come to realise that contact with the staff does not cease with the death of the child. Two further aspects of after-care must be detailed. Usually within 24 h of the infant's death, the senior paediatrician ought to interview both parents to request an autopsy examination. At first this may
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seem to be the final cruelty after the series of disasters which have befallen a child and family. However, there is one overriding factor which must be explained: without a post-mortem examination information crucial to the parents may be lost and genetic advice regarding future pregnancies of the mother, or members of her family, will be incomplete. Parents who elect to have an autopsy performed often express relief and gladness to have the opportunity of seeing and possessing a copy of the report, which describes their infant's structure in detail. Staff who are experienced in follow-up interviews are in little doubt that this description contributes positively to the grieving process and allows parents to leave behind many doubts, and perhaps some guilt. One followup interview should be dedicated to exploring in detail the genetic implications of the infant's death with reference to clinical and autopsy diagnoses. Further expert advice may be needed from a specialist in genetics. The second aspect of after-care which needs further comment is the follow-up series of meetings. These may appropriately take place in an office outside the intensive care unit and away from the crying of babies. Ideally the nurse and doctor closest to the family should arrange this. The meetings are often most successful when they are freely structured and offer the parents a chance to talk about their child. The conversation may range from medical details of therapy to humorous anecdotes of the infant's life. Parents may find that friends and neighbours, who never had the opportunity to get to know their child, may find it difficult to be sources of strength through the early months of grief. It is understandable that both mother and father should wish to talk at length to the few people who remembered the nuances of their child's personality. A bereaved mother wrote: 'Most people did not know how to respond to us. They did not know what to say, but usually once we began to talk they would follow our lead. However, some people deliberately avoided the whole subject as if we hadn't had a baby, yet we knew they knew. It was both hurtful to us and hard since it was the subject uppermost in our minds and we both found relief in talking about it') 1 The parents should be left in no doubt that the clinical team will maintain an interest in the family's future and that, if a further pregnancy occurs, the next child will be awaited with considerable excitement.
Conclusion To lay observers the discontinuation of life-support for a baby may seem callous 'selective non-treatment'. To the professional staff caring for the infants it is a task which is extremely demanding in time and in intellectual and emotional energy. All aspects of the infant's life must be considered before the most compassionate decision can be taken. The autonomy of the parents as surrogate decision-makers must be
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respected, but they will require confident guidance and reassurance from the staff they have come to trust. The infant's dignity as a complete human being is of paramount importance at all times and it is the responsibility of the staff to provide this human being with freedom from distress and also with physical and social comfort. Society will continue to debate the principle of the sanctity of human life and of the rights of human beings or their advocates to determine their future. Cognisant of these arguments, the neonatal physician and the small team of perinatal staff cannot avoid their moral and legal responsibility to provide the best care for their patient including the withdrawal of invasive life-support when appropriate. Redirection of care to comfort measures is appropriate only after detailed exploration of the alternatives and after a guided consensus has been reached openly with the child's family. There should be no conflict with the law when these principles are followed.
References 1. Yu VYH, Loke HL, Bajuk B e t al. Prognosis for infants born at 23 to 28 weeks' gestation. BMJ 1986; 293: 1200-1203. 2. Whitelaw A. Death as an option in neonatal intensive care. Lancet 1986; ii: 328-331. 3. Stewart AL, Reynolds EOR, Lipscombe AP. Outcome for infants of very low birthweight: survey of world literature. Lancet 1981; i: 1038-1041. 4. Allen MC, Donohue PK, Dusman AE. The limit of viability neonatal outcome of infants born at 22 to 25 weeks' gestation. N Engl J Med 1993; 329: 1597-1601. 5. DuffRS, Campbell AGM. Moral and ethical dilemmas in the special care nursery. New Engl J Med 1973; 289: 890-894. 6. Re B (a Minor) 1981.1 WLR 1421. 7. Editorial. Paediatricians and the law. BMJ 1981; 283: 1280-1281. 8. Brahams D. No obligation to resuscitate a non-viable infant. Lancet 1988; i: 1176. 9. Walker CHM .... officiously to keep alive. Arch Dis Child 1988; 63: 560-564. 10. Kennedy I, Grubb A. Medical law: text and materials. London; Butterworths, 1990; 936-41. 11. Re J (a Minor) 1990; 3 All ER 930, CA. -
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12. Nolan C. Under the Eye of the Clock. Letchworth; Weidenfeld and Nicholson, 1987. 13. Stinson R, Stinson P. The Long Dying of Baby Andrew. Boston; Little Brown & Co, 1983. 14. Simms M. Informed dissent: the views of some mothers of severely mentally handicapped young adults. J Med Ethics 1986; 12: 72-74. 15. Doyal L, Wilsher D. Towards guidelines for withholding and withdrawal of life prolonging treatment in neonatal medicine. Arch Dis Child 1994; 70: F66-70. 16. Gillon R. Conclusion: the Arthur case revisited. BMJ 1986; 292: 543-545. 17. De Vries LS, Dubowitz LMS, Dubowitz V et al. Predictive value of cranial ultrasound in the newborn baby: a reappraisal. Lancet 1985; ii: 137-140. 18. Hille ETM, Lya Den Ouden A, Bauer L, van den Oudenrijn C, Brand R, Verloove-Vanhorick SP. School performance at nine years of age in very premature and very low birth weight infants: Perinatal risk factors and predictors at five years of age. J Pediatr 1994; 125: 426-434. 19. Saigal S, Rosenbaum P, Stotskopf B et al. Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: Comparison with a reference group. J Pediatr 1994; 125: 411-417. 20. Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G. Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 1994; 125: 418-425. 21. Smith DW. Recognizable Patterns of Human Malformation. Genetic, Embryologic and Clinical Aspects. Philadelphia; WB Saunders, 1982. 3rd edition: 14-15. 22. Chiswiek ML. Commentary. Arch Dis Child 1994; 70: F70. 23. Campbell AGM. Ethical issues in child health and disease. Child Health in a Changing Society. Ed JO Forfar. Oxford; Oxford University Press, 1988. 24. Bissenden G. Ethical aspects of neonatal care. Arch Dis Child 1986; 61: 639-641. 25. Mason JK, Myers DW. Parental choice and selective nontreatment of deformed newborns: a view from mid-Atlantic. J Med Ethics 1986; 12: 67-71. 26. Laing IA. Withdrawing from neonatal intensive care. Paediatric Forensic Medicine and Pathology. Ed JK Mason. London; Chapman and Hall Medical, 1989: 131-140. 27. Gillespie C. Letting die severely handicapped children. J Med Ethics 1983; 9: 231. 28. Berseth CL. Ethical dilemmas in the neonatal intensive care unit. Mayo Clin Proc 1987; 62: 67. 29. Weir R. Selective Non-treatment of Handicapped Newborns. New York; Oxford University Press, 1985: 131-134. 30. Laing IA. Advances in neonatal medicine. Current Medicine 4 Royal College of Physicians of Edinburgh. Ed DH Lawson. Edinburgh; Churchill Livingstone, 1994: 121-132. 31. Boston S. Will, My Son. The Life and Death of a Mongol Child. London; Pluto Press, 1981.