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Ethical and legal dilemmas in the late management of severely damaged neonates without extensive brain damage
Sernin Neonatol 1998; 3:285-290
Ethical and legal dilemmas in the late management of severely damaged neonates without extensive brain damage David Evans and Malcolm Levene
University of Leeds, D Floor Clarendon Wing, The General Infirmary at Leeds, Leeds LS2 9NS, UK
Key words: disability evaluation, disabled, ethics, infant, infant, newborn, intensive care, neonatal, quality of life
There is some evidence that the withdrawal or non-provision of life-sustaining medical treatment takes place in neonates who have severe physical impairments but no brain injury. Clinicians dealing with these cases have to work within the existing broad legal and ethical frameworks. There is very little help in the form of clinical guidelines that specifically address the issues of primary physical impairment and suffering. These issues, by their nature, are complex and require the clinician to determine the infant's best interests, by accurately assessing the prognosis and likely quality of life. This involves consultation with parents and other members of the healthcare team.
Certain infants may survive neonatal intensive care without significant brain injury but with severe physical impairments. These impairments may lead to a limited life expectancy or an extremely poor quality of life because of continued suffering. Thus, situations arise where the withdrawal or nonprovision of life-sustaining treatment may be appropriate in an attempt to spare the infant future suffering. Fundamental to such decisions is that the infant's best interests are served. These decisions may be difficult and pose ethical and legal dilemmas for a number of reasons: (1) Accurate prognosis and prediction of the future quality of life for the individual case are hampered by a lack of published evidence; (2) The neonate is not independent and therefore their best interests are influenced by the level of care able to be provided by the family, health-care provisions and education facilities, etc., and the value placed upon the surviving, impaired child by the culture in which they live; (3) Explicit rules and guidelines addressing specific clinical situations do not exist, nor are they Correspondence: Dr D. J. Evans, University of Leeds, D Floor Clarendon Wing, The General Int'trmary at Leeds. Leeds LS2 9NS. UK (emaih d.l.evans~leeds.ac.uk). 1084-2756/98/040285+06$12.00/00
ever likely to exist, for reasons outlined later; (4) The possibility that new therapies, as yet unknown or unproven in efficacy, may improve quality of life in the future.
Published evidence Much of the published evidence relates to very preterm infants or those with severe brain injury, for example, following hypoxic--ischaemic insults. There have been few studies reporting the incidence of decisions to withdraw, or not to provide, life-sustaining treatment for neonates without brain injury. Examples of such decisions reported in the literature include: (1) Withdrawal of respiratory support from neonates with chronic lung disease and respiratory failure, such that there was little prospect of successful extubation [1]; (2) Non-provision of surgery for neonates with spina bifida and certain adverse criteria although brain injury was not necessarily present [2]; © 1998 W.B. Saunders Company Ltd
286
(3) Withdrawal of respiratory support from neonates with muscle disease and chronic ventilatory dependence [3]; (4) Withdrawal or non-provision of parenteral nutrition for neonates with short bowel syndrome following necrotizing enterocolitis [1, 4, 5], total intestinal agangliosis [4], malrotation and mid-gut volvulus [3]; (5) Withdrawal of respiratory support in neonatal surgical units following 'serious post-operative complications' [3]. The incidence of decisions resulting in withdrawal or non-provision of life-sustaining treatment reported in the literature is likely to be a gross underestimate of current practice.
The legal framework In the UK, the law does not permit the killing of an infant under any circumstances. A deliberate act committed with the principle intention to end the life of an infant is unlawful, irrespective of whether or not it was committed by a doctor. Health care professionals have a legal (and moral) duty of care towards the neonate undergoing treatment; doctors must act in the neonate's best interests, as judged by a competent body of medical opinion, namely the Bolam principle [6]. An omission of treatment with the foreseen consequence of hastening death is also potentially unlawful. Although many doctors feel more uneasy about the withdrawal of life-sustaining treatment than its non-provision, most legal and philosophical commentators draw no legal or ethical distinction. There have been several instances where legal justification of selective withdrawal or nonprovision of treatment has been sought. Nonprovision is legally acceptable when the neonate will inevitably die in the short term, irrespective of the treatment (Re C, 1989), and when brain damage is so severe that death would be preferable than the poor quality of life afforded by life-sustaining treatment (Re J, 1990) [7, 8]. None of these rulings apply to the late management of neonates without brain injury. Of more relevance to the clinical scenarios under discussion is the decision of Re B (1981) by the Court of Appeal [9]. Surgery was authorized to correct duodenal atresia in an infant with Down Syndrome because, in the judges' opinion, the infant's life was not so 'demonstrably awful' that the infant should be allowed to die. The implicit
D. Evans and M. Levene
suggestion is that that non-provision may be legally justified when the burdens of suffering and poor quality of survival outweigh the benefits of treatment, even though the infant may not be in a terminal state or have brain injury. The court's decision implies that only conditions worse than Down Syndrome could be considered for nonprovision of life-sustaining treatment. In 1991, the Court of Appeal accepted that it might be lawful to withdraw life-sustaining treatment if, when given the treatment, the quality of life of the child would be intolerable. Lord Donaldson emphasized the requirement to make such decisions from the infant's viewpoint [10]. These rulings give some indication of how the courts might respond to future cases, although such decisions are by no means predictable for an individual case. No court has specifically addressed the question of selective withdrawal or nonprovision of life-sustaining treatment when the infant's primary impairments are physical. Doctors therefore remain legally vulnerable because of the uncertainty remaining over the definition of intolerable quality of life, necessitating withdrawal or non-provision of life-sustaining treatment, in neonates without brain injury.
Ethical principles Clinicians should justify the use of treatments on the benefits they confer, not simply upon the ability to provide them (beneficence). The benefits of any treatment should outweigh the risks of harm (non-maleficence). Inappropriate provision of lifesustaining treatment when death is inevitable and imminent is ethically unjust. If an infant's suffering is prolonged in this way, the provision of such treatment may be morally considered an assault. The neonate never loses the right to appropriate medical care and respect for its potential for self-determination and autonomy. There are situations, however, when it is appropriate for the care to be redirected away from life-sustaining treatment and towards palliation and relief of suffering. It is never permissible to withdraw treatments directed towards the alleviation of pain or the promotion of comfort. The Ethics Advisory Committee of the Royal College of Paediatrics and Child Health (EACRCPCH) has recently suggested five situations where the withdrawal or non-provision of lifesustaining treatment might be considered [11]. Two
Dilemmas in the late management of severely damaged neonates
of these situations may be applicable to the late management of severely impaired neonates without brain injury. The first is described as the 'no purpose' situation, when a child experiences such a degree of impairment that it would not be reasonable to expect him or her to bear it. Specific impairments and their severity are not described, but it is suggested that impairments resulting in loss of awareness and inability to interact may represent an intolerable handicap. This situation may apply to infants with chronic lung disease who are ventilator-dependent, but would not apply to infants with conditions that permit normal, or degrees of, childhood development, such as short bowel syndrome and some forms of spina bifida. The other situation identified by the EACRCPCH is the 'unbearable' situation, where the family feels that in the face of progressive and irreversible illness, further treatment is more that can be borne. However, the level of suffering which would be beyond the ability of any reasonable person to bear is not stated. It would be reasonable to expect a person to put up with degrees of short-term suffering, providing there was a perceived long-term benefit from the treatment. What degree of suffering is permissible when the perceived benefit may only be short-term? For example, consider the short-term benefits achieved using parenteral nutrition in an infant with short bowel syndrome. With the subsequent development of chronic liver failure, the benefits initially gained are likely to be forfeited.
The process of decision-making The legal and ethical frameworks, described above, require doctors to consider and determine the infant's best interests. This involves considering the prognosis of the infant and his or her quality of life. Good practice imposes an important duty on doctors to take careful note of other viewpoints, particularly with regard to determining the future quality of life. It is the assessment of prognosis and prediction of future quality of life that produces the most uncertainty in the decision-making process.
Assessment of prognosis The prognosis should be based upon accurate, contemporary evidence, based upon experience in
287
the literature, which needs to be objectively applied to the infant. The prognosis must be based upon current scientific knowledge, utilizing the most effective therapies. It could be argued that, in some circumstances, developments in medical treatments might substantially improve the prognosis at a future time. For example, if heart[lung and small bowel transplantation become more successful and readily available, the prognosis for neonates suffering from chronic lung disease and short bowel syndrome will improve. In practice, it would seem more logical to base the prognosis upon contemporary evidence rather than the uncertainties of future medical advances. Chiswick has described common pitfalls and bias encountered when determining the prognosis [12]. Before making a decision, he advocates recognition of the effect that certain deceptive signals may have in biasing the perceived outcome towards a less optimistic viewpoint: (1) Emotions of frustration and despair felt by neonatal unit staff during the prolonged care of an infant, punctuated by repeated episodes of deterioration and improvement. (2) Adverse appearance of an infant resulting from the disease processes, such as: malnutrition, jaundice secondary to parenteral nutrition. Such appearances can also arise from iatrogenic problems, such as: trauma from multiple intravenous infusion sites. (3) Parents who do not visit may be thought, erroneously, to lack interest in the care of their child. It can be seen that these deceptive signals are most likely to occur during the care of an infant with chronic disease, particularly when the impairments are physical and visible. A second opinion from a senior colleague, although not obligatory, can act as a helpful reassurance to parents and neonatal staff.
Assessment of future quality of life Once an accurate medical prognosis has been established, the next step is to determine the quality of life associated with such a prognosis. There has been increasing research into quality of life measures, although the majority has been concerned with disease-specific health-related quality of life (HRQOL) measures for chronic conditions, such as asthma, diabetes and cancer [13].
D. Evans and M. Levene
288
There is some evidence that people with severe impairments value their health status more highly than ratings given by non-impaired individuals for the same category of impairments [I4]. On the other hand, suffering throughout childhood may impair an individual's autonomy and right of self-determination. A high incidence of severe depression has been reported in adults with severe spina bifida [15]. The negative impact of children with chronic disease upon their family is well documented. There is a higher incidence of marital stress [16] and psychiatric morbidity [17] amongst parents, plus anxiety and behavioural problems in siblings [18]. Thus, the effect of an impairment upon an individual's quality of life is heavily dependent upon the facilities available, both for the individual and for the family, in terms of medical, educational, financial and emotional support. The basic question is thus: what degree of impairment represents an intolerable handicap, such that no reasonable person would want to live with it? The Ethics Advisory Committee (EAC-RCPCH) acknowledges that intolerable handicap is indefinable, although suggests that it may be when it results in a loss of awareness and an inability to interact [11]. In the case of brain damage, an intolerable handicap may result when severe cognitive impairment prevents an infant from ever developing a sense of self-awareness or any interest in human life. When the impairment is purely physical, there is the potential for developing self-awareness and thus a certain degree of human development. For this potential to be realized, however, there must be support and stimulation from parents and staff involved in the child's follow-up. If parents are unwilling or unable to provide support, or if there are insufficient medical facilities, there is a possibility that the child's handicap may become intolerable. The clinician faces a dilemma. If the interests of the infant are linked with the capability of the parents, should some infants be allowed to live and others to die depending upon parental motivation or even income? Arguably, providing life-sustaining treatment to an infant with a physical condition necessitating intensive and costly parental support, when the parents are unwilling to undertake such a commitment, could be viewed as not being in the best interests of the infant, and therefore ethically unjust. Many clinicians would not accept the validity of this viewpoint. The contrary argument is that eventually the infant's
care could be successfully undertaken by carers other than the biological parents. Both viewpoints represent a gamble in an attempt to avoid the worst, or secure the best, outcome on behalf of the infant. The acceptability of such selective non-provision of life-sustaining treatment for purely physical impairments has not been legally tested.
Consultation The decision to withdraw, or not to provide, life-sustaining medical treatment is a medical decision and, as such, should be made by the consultant responsible for the infant's care. This should only be undertaken after a consultation process with other agencies involved in the care, giving greatest weight to the views of the parents (or main caregivers). It is important that the parents be given sufficient information in an understandable form, such that they can reason, deliberate and feel comfortable to communicate their values and desires. Information is best given gradually at a number of interviews over a period of time, to ensure that all aspects of parental concern can be addressed. The ideal outcome is to achieve unanimity amongst parents, medical and nursing staff, although a consensus view is acceptable. All members of the team should feel comfortable in expressing their viewpoints and also to be able to express dissent. This requires a number of small meetings amongst various interested parties. Parents and junior staff are unlikely to express dissent in large gatherings. If parental dissent continues despite adequate explanation and opportunity for consultation, it may be necessary to consider seeking the involvement and advice of the courts. In North America, clinical ethics committees are often used to advise on moral dilemmas [19], although they are used infrequently in the UK [20]. They do not remove the responsibility from the consultant in charge and therefore should be used for advice only. Several commentators have expressed concerns if such committees were to have greater responsibility [21]. They are distanced from the clinical situation and may systematically reach decisions so as to minimize criticism. The members may have conflicts of interest: they may be employed by the health provider and be pressurized to reduce resource consumption rather than serving the patient's best interests.
Dilemmas in the late management of severely damaged neonates After withdrawal treatment
of l i f e - s u s t a i n i n g
O n c e the decision has been taken to withdraw, or not to provide, life-sustaining treatment, the doctor's d u t y of care does not end. Further treatment should be consistent with the decision and all life-sustaining treatment should cease. Therefore, ventilatory support, resuscitation orders, parenteral nutrition and antibiotics should be discontinued. If pharmacological paralysis was required during ventilation, it is not necessary to stop this prior to withdrawal of ventilatory support. Treatment should be aimed at making the infant comfortable, warm and pain-flee. Most neonatologists would feel uncomfortable at withdrawing enteral nutrition, but this may be appropriate in cases complicated by intestinal ileus or obstruction. Giving medicines, such as large amounts of opiate analgesia, with the primary intention of hastening death is unlawful. It is g o o d practice, however, to strive in order to control pain or suffering. Therefore, it is acceptable to use large doses of opiate analgesia for this purpose, which has a secondary effect of shortening life. The use of such agents should be for the benefit of the infant during life, not to hasten death. In some cases, withdrawal or non-provision of life-sustaining treatments does not lead to death. Continued palliative care is all that is appropriate; euthanasia is unacceptable. The lives of the unexpected survivors must be respected and they should be cared for appropriately.
Summary
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future quality of life, taking into consideration the required support of the parents and child health care teams in order to prevent intolerable handicap; (c) regular and open discussion with parents and involved medical and nursing staff; (d) discontinuation of futile treatments and optimal palliative care aimed at alleviating suffering. A number of guidelines outline these procedures. They do not give specific advice on what physical impairment in which social environment is likely to constitute an intolerable handicap. The unique nature of each individual case means that any guidelines specifically addressing each and every clinical scenario would be unwieldy, proscriptive and therefore inappropriate.
References
1 Wall SN, Partridge JC. Death in the intensive care nursery: physician practice of withdrawing and withholding life support. Pediatrics 1997; 99: 64-70. 2 Lorber J. Spina bifida cystica. Results of treatment of 270 consecutive cases with criteria for selection for the future. Arch Dis Child 1972; 47: 854-873. 3 Whitelaw A. Death as an option in neonatal intensive care. Lancet 1986; Aug 9: 328-331. 4 Caniano DA, Hazebroek FWJ, DenBesten KE, Tibboel D. End-of-life decisions for surgical neonates: experience in the Netherlands and United States. ] Pediatr Surg 1995; 30: 1420-I424. 5 Hazebroek FWJ, Tibboel D, Mourik M, Bos AP, Molenaar JC. Withholding and withdrawal of life support from surgical neonates with life-threatening congenital anomalies. ] Pediatr Surg 1993; 28: 1093-1097. 6 Bolam vs Fdem HMC [1957] 2 All ER 118. 7 Re C (a minor) [1989] 2 All ER 782. 8 Re J (a minor) [1990] 3 All ER 930. 9 Re B (a minor) [1981] 1 WLR 1421. 10 Re J (a minor) [1981] Fam 33. 11 Ethics Advisory Committee. Withholding or withdrawing life saving treatment in children. A framework for practice.
There is some evidence in the published literature that the withdrawal or non-provision of lifesustaining medical treatment takes place in neonates w h o have severe physical impairments but no brain injury. Clinicians dealing with these cases have to work within the broad legal and ethical frameworks that exist. There is very little help in the form of clinical guidelines that specifically address the issues of primary physical impairment and suffering. These issues, by their nature, are complex and require the clinician to determine the infant's best interests. The procedures involved are: (a) a realistic and objective assessment of the medical prognosis; (b) an assessment of the likely
12 13 14
15 16
London: Royal College of Paediatrics and Child Health, 1997. Chiswick ML. Withdrawal of life support in babies: deceptive signals. Arch Dis Child I990; 65: 1096-1097. Eiser C. Children's quality of life measures. Arch Dis Child 1997; 77: 3~0-354. Saigal S, Furlong WJ, Rosenbaum PL, Feeny DH, Burrows EA. "Play it again Sam": comparison of teenagers' valuation of self-reported health status versus a hypothetical scenario ("Sam") of same health state. Pediatr Res I996; 39: 278A. Domer S. Adolescents with spina bifida: how they see their situation. Arch Dis Child 1976; 51: 439-444. Sheeran T, Marvin RS, Pianta RC. Mothers' resolution of their child's diagnosis and self-reported measures of parenting stress, marital relations, and social support. ] Pediatr Psychol 1997; 22: 197-212.
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17 Carpiniello B, Piras A, Pariante CM, Carta MG, Rudas N. Psychiatric morbidity and family burden among parents of disabled children. Psychiatric Seroices 1995; 46: 940942. I8 Coleby M. The school-age siblings of children with disabilities. Deo l~led Child NeuroI 1995; 37: 415-426.
D. Evans and M. Levene
19 Rosner F. Hospital medical ethics committees: a review of their development, lAMA 1985; 253: 2693-2697. 20 Thornton JG, Lilford RI. Clinical ethics committee. BM] 1995; 311: 667-669. 21 Lo B. Behind closed doors. PrOmises and pitfalls of ethics committees. N Eng ] Med 1987; 317: 46-50.
Ethical and legal dilemmas in the late management of severely damaged neonates without extensive brain damage David Evans and Malcolm Levene
University of Leeds, D Floor Clarendon Wing, The General Infirmary at Leeds, Leeds LS2 9NS, UK
Key words: disability evaluation, disabled, ethics, infant, infant, newborn, intensive care, neonatal, quality of life
There is some evidence that the withdrawal or non-provision of life-sustaining medical treatment takes place in neonates who have severe physical impairments but no brain injury. Clinicians dealing with these cases have to work within the existing broad legal and ethical frameworks. There is very little help in the form of clinical guidelines that specifically address the issues of primary physical impairment and suffering. These issues, by their nature, are complex and require the clinician to determine the infant's best interests, by accurately assessing the prognosis and likely quality of life. This involves consultation with parents and other members of the healthcare team.
Certain infants may survive neonatal intensive care without significant brain injury but with severe physical impairments. These impairments may lead to a limited life expectancy or an extremely poor quality of life because of continued suffering. Thus, situations arise where the withdrawal or nonprovision of life-sustaining treatment may be appropriate in an attempt to spare the infant future suffering. Fundamental to such decisions is that the infant's best interests are served. These decisions may be difficult and pose ethical and legal dilemmas for a number of reasons: (1) Accurate prognosis and prediction of the future quality of life for the individual case are hampered by a lack of published evidence; (2) The neonate is not independent and therefore their best interests are influenced by the level of care able to be provided by the family, health-care provisions and education facilities, etc., and the value placed upon the surviving, impaired child by the culture in which they live; (3) Explicit rules and guidelines addressing specific clinical situations do not exist, nor are they Correspondence: Dr D. J. Evans, University of Leeds, D Floor Clarendon Wing, The General Int'trmary at Leeds. Leeds LS2 9NS. UK (emaih d.l.evans~leeds.ac.uk). 1084-2756/98/040285+06$12.00/00
ever likely to exist, for reasons outlined later; (4) The possibility that new therapies, as yet unknown or unproven in efficacy, may improve quality of life in the future.
Published evidence Much of the published evidence relates to very preterm infants or those with severe brain injury, for example, following hypoxic--ischaemic insults. There have been few studies reporting the incidence of decisions to withdraw, or not to provide, life-sustaining treatment for neonates without brain injury. Examples of such decisions reported in the literature include: (1) Withdrawal of respiratory support from neonates with chronic lung disease and respiratory failure, such that there was little prospect of successful extubation [1]; (2) Non-provision of surgery for neonates with spina bifida and certain adverse criteria although brain injury was not necessarily present [2]; © 1998 W.B. Saunders Company Ltd
286
(3) Withdrawal of respiratory support from neonates with muscle disease and chronic ventilatory dependence [3]; (4) Withdrawal or non-provision of parenteral nutrition for neonates with short bowel syndrome following necrotizing enterocolitis [1, 4, 5], total intestinal agangliosis [4], malrotation and mid-gut volvulus [3]; (5) Withdrawal of respiratory support in neonatal surgical units following 'serious post-operative complications' [3]. The incidence of decisions resulting in withdrawal or non-provision of life-sustaining treatment reported in the literature is likely to be a gross underestimate of current practice.
The legal framework In the UK, the law does not permit the killing of an infant under any circumstances. A deliberate act committed with the principle intention to end the life of an infant is unlawful, irrespective of whether or not it was committed by a doctor. Health care professionals have a legal (and moral) duty of care towards the neonate undergoing treatment; doctors must act in the neonate's best interests, as judged by a competent body of medical opinion, namely the Bolam principle [6]. An omission of treatment with the foreseen consequence of hastening death is also potentially unlawful. Although many doctors feel more uneasy about the withdrawal of life-sustaining treatment than its non-provision, most legal and philosophical commentators draw no legal or ethical distinction. There have been several instances where legal justification of selective withdrawal or nonprovision of treatment has been sought. Nonprovision is legally acceptable when the neonate will inevitably die in the short term, irrespective of the treatment (Re C, 1989), and when brain damage is so severe that death would be preferable than the poor quality of life afforded by life-sustaining treatment (Re J, 1990) [7, 8]. None of these rulings apply to the late management of neonates without brain injury. Of more relevance to the clinical scenarios under discussion is the decision of Re B (1981) by the Court of Appeal [9]. Surgery was authorized to correct duodenal atresia in an infant with Down Syndrome because, in the judges' opinion, the infant's life was not so 'demonstrably awful' that the infant should be allowed to die. The implicit
D. Evans and M. Levene
suggestion is that that non-provision may be legally justified when the burdens of suffering and poor quality of survival outweigh the benefits of treatment, even though the infant may not be in a terminal state or have brain injury. The court's decision implies that only conditions worse than Down Syndrome could be considered for nonprovision of life-sustaining treatment. In 1991, the Court of Appeal accepted that it might be lawful to withdraw life-sustaining treatment if, when given the treatment, the quality of life of the child would be intolerable. Lord Donaldson emphasized the requirement to make such decisions from the infant's viewpoint [10]. These rulings give some indication of how the courts might respond to future cases, although such decisions are by no means predictable for an individual case. No court has specifically addressed the question of selective withdrawal or nonprovision of life-sustaining treatment when the infant's primary impairments are physical. Doctors therefore remain legally vulnerable because of the uncertainty remaining over the definition of intolerable quality of life, necessitating withdrawal or non-provision of life-sustaining treatment, in neonates without brain injury.
Ethical principles Clinicians should justify the use of treatments on the benefits they confer, not simply upon the ability to provide them (beneficence). The benefits of any treatment should outweigh the risks of harm (non-maleficence). Inappropriate provision of lifesustaining treatment when death is inevitable and imminent is ethically unjust. If an infant's suffering is prolonged in this way, the provision of such treatment may be morally considered an assault. The neonate never loses the right to appropriate medical care and respect for its potential for self-determination and autonomy. There are situations, however, when it is appropriate for the care to be redirected away from life-sustaining treatment and towards palliation and relief of suffering. It is never permissible to withdraw treatments directed towards the alleviation of pain or the promotion of comfort. The Ethics Advisory Committee of the Royal College of Paediatrics and Child Health (EACRCPCH) has recently suggested five situations where the withdrawal or non-provision of lifesustaining treatment might be considered [11]. Two
Dilemmas in the late management of severely damaged neonates
of these situations may be applicable to the late management of severely impaired neonates without brain injury. The first is described as the 'no purpose' situation, when a child experiences such a degree of impairment that it would not be reasonable to expect him or her to bear it. Specific impairments and their severity are not described, but it is suggested that impairments resulting in loss of awareness and inability to interact may represent an intolerable handicap. This situation may apply to infants with chronic lung disease who are ventilator-dependent, but would not apply to infants with conditions that permit normal, or degrees of, childhood development, such as short bowel syndrome and some forms of spina bifida. The other situation identified by the EACRCPCH is the 'unbearable' situation, where the family feels that in the face of progressive and irreversible illness, further treatment is more that can be borne. However, the level of suffering which would be beyond the ability of any reasonable person to bear is not stated. It would be reasonable to expect a person to put up with degrees of short-term suffering, providing there was a perceived long-term benefit from the treatment. What degree of suffering is permissible when the perceived benefit may only be short-term? For example, consider the short-term benefits achieved using parenteral nutrition in an infant with short bowel syndrome. With the subsequent development of chronic liver failure, the benefits initially gained are likely to be forfeited.
The process of decision-making The legal and ethical frameworks, described above, require doctors to consider and determine the infant's best interests. This involves considering the prognosis of the infant and his or her quality of life. Good practice imposes an important duty on doctors to take careful note of other viewpoints, particularly with regard to determining the future quality of life. It is the assessment of prognosis and prediction of future quality of life that produces the most uncertainty in the decision-making process.
Assessment of prognosis The prognosis should be based upon accurate, contemporary evidence, based upon experience in
287
the literature, which needs to be objectively applied to the infant. The prognosis must be based upon current scientific knowledge, utilizing the most effective therapies. It could be argued that, in some circumstances, developments in medical treatments might substantially improve the prognosis at a future time. For example, if heart[lung and small bowel transplantation become more successful and readily available, the prognosis for neonates suffering from chronic lung disease and short bowel syndrome will improve. In practice, it would seem more logical to base the prognosis upon contemporary evidence rather than the uncertainties of future medical advances. Chiswick has described common pitfalls and bias encountered when determining the prognosis [12]. Before making a decision, he advocates recognition of the effect that certain deceptive signals may have in biasing the perceived outcome towards a less optimistic viewpoint: (1) Emotions of frustration and despair felt by neonatal unit staff during the prolonged care of an infant, punctuated by repeated episodes of deterioration and improvement. (2) Adverse appearance of an infant resulting from the disease processes, such as: malnutrition, jaundice secondary to parenteral nutrition. Such appearances can also arise from iatrogenic problems, such as: trauma from multiple intravenous infusion sites. (3) Parents who do not visit may be thought, erroneously, to lack interest in the care of their child. It can be seen that these deceptive signals are most likely to occur during the care of an infant with chronic disease, particularly when the impairments are physical and visible. A second opinion from a senior colleague, although not obligatory, can act as a helpful reassurance to parents and neonatal staff.
Assessment of future quality of life Once an accurate medical prognosis has been established, the next step is to determine the quality of life associated with such a prognosis. There has been increasing research into quality of life measures, although the majority has been concerned with disease-specific health-related quality of life (HRQOL) measures for chronic conditions, such as asthma, diabetes and cancer [13].
D. Evans and M. Levene
288
There is some evidence that people with severe impairments value their health status more highly than ratings given by non-impaired individuals for the same category of impairments [I4]. On the other hand, suffering throughout childhood may impair an individual's autonomy and right of self-determination. A high incidence of severe depression has been reported in adults with severe spina bifida [15]. The negative impact of children with chronic disease upon their family is well documented. There is a higher incidence of marital stress [16] and psychiatric morbidity [17] amongst parents, plus anxiety and behavioural problems in siblings [18]. Thus, the effect of an impairment upon an individual's quality of life is heavily dependent upon the facilities available, both for the individual and for the family, in terms of medical, educational, financial and emotional support. The basic question is thus: what degree of impairment represents an intolerable handicap, such that no reasonable person would want to live with it? The Ethics Advisory Committee (EAC-RCPCH) acknowledges that intolerable handicap is indefinable, although suggests that it may be when it results in a loss of awareness and an inability to interact [11]. In the case of brain damage, an intolerable handicap may result when severe cognitive impairment prevents an infant from ever developing a sense of self-awareness or any interest in human life. When the impairment is purely physical, there is the potential for developing self-awareness and thus a certain degree of human development. For this potential to be realized, however, there must be support and stimulation from parents and staff involved in the child's follow-up. If parents are unwilling or unable to provide support, or if there are insufficient medical facilities, there is a possibility that the child's handicap may become intolerable. The clinician faces a dilemma. If the interests of the infant are linked with the capability of the parents, should some infants be allowed to live and others to die depending upon parental motivation or even income? Arguably, providing life-sustaining treatment to an infant with a physical condition necessitating intensive and costly parental support, when the parents are unwilling to undertake such a commitment, could be viewed as not being in the best interests of the infant, and therefore ethically unjust. Many clinicians would not accept the validity of this viewpoint. The contrary argument is that eventually the infant's
care could be successfully undertaken by carers other than the biological parents. Both viewpoints represent a gamble in an attempt to avoid the worst, or secure the best, outcome on behalf of the infant. The acceptability of such selective non-provision of life-sustaining treatment for purely physical impairments has not been legally tested.
Consultation The decision to withdraw, or not to provide, life-sustaining medical treatment is a medical decision and, as such, should be made by the consultant responsible for the infant's care. This should only be undertaken after a consultation process with other agencies involved in the care, giving greatest weight to the views of the parents (or main caregivers). It is important that the parents be given sufficient information in an understandable form, such that they can reason, deliberate and feel comfortable to communicate their values and desires. Information is best given gradually at a number of interviews over a period of time, to ensure that all aspects of parental concern can be addressed. The ideal outcome is to achieve unanimity amongst parents, medical and nursing staff, although a consensus view is acceptable. All members of the team should feel comfortable in expressing their viewpoints and also to be able to express dissent. This requires a number of small meetings amongst various interested parties. Parents and junior staff are unlikely to express dissent in large gatherings. If parental dissent continues despite adequate explanation and opportunity for consultation, it may be necessary to consider seeking the involvement and advice of the courts. In North America, clinical ethics committees are often used to advise on moral dilemmas [19], although they are used infrequently in the UK [20]. They do not remove the responsibility from the consultant in charge and therefore should be used for advice only. Several commentators have expressed concerns if such committees were to have greater responsibility [21]. They are distanced from the clinical situation and may systematically reach decisions so as to minimize criticism. The members may have conflicts of interest: they may be employed by the health provider and be pressurized to reduce resource consumption rather than serving the patient's best interests.
Dilemmas in the late management of severely damaged neonates After withdrawal treatment
of l i f e - s u s t a i n i n g
O n c e the decision has been taken to withdraw, or not to provide, life-sustaining treatment, the doctor's d u t y of care does not end. Further treatment should be consistent with the decision and all life-sustaining treatment should cease. Therefore, ventilatory support, resuscitation orders, parenteral nutrition and antibiotics should be discontinued. If pharmacological paralysis was required during ventilation, it is not necessary to stop this prior to withdrawal of ventilatory support. Treatment should be aimed at making the infant comfortable, warm and pain-flee. Most neonatologists would feel uncomfortable at withdrawing enteral nutrition, but this may be appropriate in cases complicated by intestinal ileus or obstruction. Giving medicines, such as large amounts of opiate analgesia, with the primary intention of hastening death is unlawful. It is g o o d practice, however, to strive in order to control pain or suffering. Therefore, it is acceptable to use large doses of opiate analgesia for this purpose, which has a secondary effect of shortening life. The use of such agents should be for the benefit of the infant during life, not to hasten death. In some cases, withdrawal or non-provision of life-sustaining treatments does not lead to death. Continued palliative care is all that is appropriate; euthanasia is unacceptable. The lives of the unexpected survivors must be respected and they should be cared for appropriately.
Summary
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future quality of life, taking into consideration the required support of the parents and child health care teams in order to prevent intolerable handicap; (c) regular and open discussion with parents and involved medical and nursing staff; (d) discontinuation of futile treatments and optimal palliative care aimed at alleviating suffering. A number of guidelines outline these procedures. They do not give specific advice on what physical impairment in which social environment is likely to constitute an intolerable handicap. The unique nature of each individual case means that any guidelines specifically addressing each and every clinical scenario would be unwieldy, proscriptive and therefore inappropriate.
References
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There is some evidence in the published literature that the withdrawal or non-provision of lifesustaining medical treatment takes place in neonates w h o have severe physical impairments but no brain injury. Clinicians dealing with these cases have to work within the broad legal and ethical frameworks that exist. There is very little help in the form of clinical guidelines that specifically address the issues of primary physical impairment and suffering. These issues, by their nature, are complex and require the clinician to determine the infant's best interests. The procedures involved are: (a) a realistic and objective assessment of the medical prognosis; (b) an assessment of the likely
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D. Evans and M. Levene
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