Withdrawing or Withholding Treatment for Neonates - Essay Example

Withdrawing or Withholding Treatment for Neonates: The Debate 2006 Introduction This essay seeks to explore the ethical and legal aspects of withholding and withdrawal of treatment in children, particularly neonates, in the United Kingdom. The essay will also discuss why we need ethics and how it affects nurses in practice. Proponents of withdrawing or withholding treatment to resuscitate premature babies argue that it is not in the best interest of the child. On the other hand, opponents argue that a pro-life stance does not allow the medical practitioners to be surrogate decision-makers on behalf of the child. This essay will discuss the legal framework regarding resuscitating neonates and the ethical arguments for and against it. Premature neonates The rate of survival of extreme premature babies has been found to be empirically low. In fact, despite the fact that the number of premature births have been rising since the 1980s, the rate survival has been falling over the last four decades. According to the EPICure study, the percentage of babies that survived among those born before 22 weeks had little chance of survival in 1995 was rare; those born between 22 and 23 weeks had 1% chance of survival; those born between 23 and 24 weeks 11%; those born between 24 and 25 weeks 26%; those born between 25 and 26 weeks 44%. Further, nearly two-third of the babies born between 23 and 24 weeks were disabled and if born at 25 to 26 weeks, two-third of the babies had no disabilities (Nuffield). Thus, although chances of survival improve with gestation and there are chances of disabilities if born premature, it is not necessarily the only cause of disabilities. Neonatal nursing has developed much since the 1960`s when babies born premature or underweight had little chance of survival. Neonatal intensive care has witnessed a lot of development since then and very sophisticated treatment possibilities are now available. The length of neonatal intensive care and the complexity, however, affects the chances of survival and quality of life in cases of survival. Infants born with their lungs incapable of breathing may now be treated with steroids therapy. However, even if such babies do survive, much to the credit of the medical treatment, most of them live a life of limited abilities. This has resulted in an intense debate on whether such pains should be taken to let the infant survive. After all, neonatal intensive care is expensive and it means a lot of financial pressure on the parents and the state. In addition, there are very slim chances of the baby leading a normal life. It would be a burden on parents to care for a disabled child. On the other hand, they could rather have a second normal child. Opponents of withholding or withdrawing treatment for babies that require intensive care at birth however, argue that since this is not a case of voluntary euthanasia on the part of the patient, it is unethical to legalize (Gunderman & Engle, 2005). It has been argued that neonatal technology has progressed to a great extent and it has become possible to keep alive infants born with very little weight and in asphyxiated conditions. Although there are very high chances of brain damage if such babies are resuscitated, the extent of damage is usually not clear at birth. Usually, Echographyc periventricular hyperechogenicity with EEG evidence of positive Rolandic spikes are taken as the prognosis for withholding treatment. However, many doctors find such evidence as possible but not a certainty hence not a sufficient ground for terminating therapy (Belleini 2003). It has been found from studies that when resuscitation is done on the basis of brain damage, it does not show any significant difference in the results than from when it is done as a general rule. It may be inferred from this that there cannot be a scientific selection of infants who may live without a brain damage. It remains a sheer chance for babies to live a normal life or a retarded one in case of resuscitation. Boyle et al (2002) describes a case of a 31 year old woman suffered a rupture of the membranes during the 23rd week of her second pregnancy. The doctors told her that this complicated her chances of delivering a normal baby. The timing of her labour was uncertain but it was very likely that the baby would be delivered before 26 weeks gestation. The doctors advised that in case the baby was born at 23 weeks gestation, there was only 10 percent chance of survival and even if it did survive, there was a 50 percent risk of disability. The chances of survival were higher at 24 or 25 weeks of gestation but the risks of disability remained the same. However, the doctors were obliged by law to provide treatment to the child if born after 23 weeks of gestation despite the near certainty of disability. The parents were concerned over this and decided to terminate the pregnancy at 23 weeks and 2 days of gestation. The doctors also told them that in case of ruptured membranes, the mean latency before delivery was 10-21 days. So they could have continued with the pregnancy and taken a chance such that the baby was born between 24 and 25 weeks so that the chances of survival was higher. If they had the option of withholding/ withdrawing treatment to the baby at 25 weeks, they would perhaps continue with the pregnancy taking chance for having a normal baby. Other neonates The Children Act (1989/2004) insists on providing resuscitation of neonate in the best interests of the child despite a large number of cases reaching the courts. The judicial stand varies on different cases as pointed out by Boyle et al (2002), for example, parents of Alexandra, suffering from Down syndrome and in need of surgery, wanted to withhold treatment while medical advice was against it. The court ruled that the child’s condition was not “demonstrably so awful” and hence treatment had to be continued (1981, 1 WLR 1421, CA, cited in Boyle et al 2002). On the other hand, the court withheld the parents’ wish to withdraw treatment to Child T at age 3 weeks on whom liver surgery for biliary atresia had failed and was advised liver transplant (1997, 1 WLR 242 cited in Boyle 2002). Ethical and legal situations The issue of withholding or withdrawing treatment are usually considered for the following types of cases, as laid out by Royal College of Paediatrics and Child Health guidelines (2004): 1) ‘brain dead’ child, not necessarily neonates, when cardio-respiratory support may be given through the ventilator but is essentially futile, 2) ‘permanent vegetative state’ resulting from trauma or hypoxia, when the child is dependent on others, 3) ‘no chance state’, when the child is seriously diseased and all kinds of treatment simply postpones death, 4) ‘no purpose state’, when the child may survive with severe physical or mental disabilities, 5) ‘unbearable state’, when the progressive and irreversible illness is deemed by the family to be too severe to bear. The decisions regarding withholding or withdrawing treatment for any of the above categories need to be jointly taken by the medical team, caregivers and the family. However, the point that often comes out of such situations is consensus over the degree of severity of the illness, the unbearable of the situation or the irreversibility and chances of disabilities. The ethical stance normally is that it should be in the best interest of the child. Doctors and caregivers may either decide to withhold all treatment except palliative care from the beginning or withdraw after a point when resuscitate efforts seem to fail. In neonates, withdrawing or withholding of treatment may be decided upon when a baby is born with congenital deformity that cannot be rectified or is born premature with gestation of 23 weeks or less or suffers acute birth asphyxia resulting in brain damage (RCPCH, 2004). In these cases as well as for children in the above situations, it is an extremely difficult emotional situation for parents to agree or request for withdrawal or withholding of treatment. The ethical issue in non-resuscitation efforts for children are based on three fundamental principles: 1) Duty of care and the partnership of care: the first and foremost objective is to sustain life. Even the decision to withhold or withdraw treatment needs to be taken in consideration of lessening pain and providing comfort. 2) Legal duty: the laws of the land should be adhered to. The Children Act (England, 1989 and Scotland 1995) provides the statutory framework. 3) Respect for the child’s rights: The United Nations Convention of the Rights of the Child (1989), ratified by the British government, lays out the rights of children. However, there are no uniform guidelines, even based on these fundamental principles, for individual cases of non-resuscitation decisions. Apt decision-making depends on free and fair communication between the medical practitioners, family and caregivers. The wishes of the children, if known, should be of paramount importance. Parents may decide for the children who are unable to decide for themselves, obviously so in the case of neonates, only when they act in the best interests of the child (Royal College of Pediatrics and Child Health, 2004). The Nuffield Council for Bioethics has provided an alternative guideline for treating premature babies. The council recommends that babies born before 22 weeks of gestation, a very uncommon phenomenon, should not be given resuscitation unless a prior research has shown that there is chance of survival in the case. For babies born between 22 and 23 weeks of gestation, intensive care should not also be given unless parents explicitly wish for. The chances or survival as well as disabilities are uncertain for babies born at 23 to 24 weeks gestation. The healthcare team should have extensive discussions with parents who would have the last say on the decision. For babies born between 24 and 25 weeks of gestation, intensive care should be provided unless parents and doctors jointly decide that there are no chances of survival. Intensive care should be given to babies born above 25 weeks of gestation. However, the Nuffield Council has recommended that active ending of life should not be considered however serious is the illness or poor the chances of survival. The Council also agrees with the current UK medical law stipulating that treatment should not be withheld or withdrawn at the initial stage. Like the RCPCH guidelines, the Nuffield council also urges healthcare professionals to provide as much palliative care to children from whom resuscitating treatment has been withdrawn or withheld. The legal framework In the United Kingdom, the law allows the doctors to withdraw or withhold treatment if the child has to endure extreme pain if alive. The Children Act (1989) specifies that if a conflict arises between the medical practitioner and the parents over the best interests of the baby, the decision of the physician will overrule that of the parents’ wish of withholding or withdrawing treatment, the crucial issue being that it should be in the best interests of the child (RCPCH, 2004). The legal framework came into being with the Gillick vs Wisbech & W Norfolk AHA ruling in 1985 that child’s wish will have to be respected and the parents’ role is to enact that wish. Recent rulings in 1991 and 1992 have modified the parents’ right to consent overruling the earlier view in case of minor children (RCPCH, 2004). The United Nations Convention on the Rights of the Child (1989) ratified by the British government that the medical care must be “in the best interests of the child” and that the laws must ensure that “the rights of the child to enjoyment of the highest attainable standards of health and to facilities for the treatment of illness and the rehabilitation of health”. Although the Convention respects the child’s right to express his views if he is capable to do so, it does not specify if he is the sole decision-making authority. The parents have the duty to act in the child’s best interests (RCPCH, 2004). The courts see withdrawal or withholding of treatment as distinct from active killing. Also, when withdrawing the ventilator does not enhance death, the court specifies that palliative care should be offered to the child. The duty of care mandate makes it certain that even when unexpected, the child who survives has the right to care even if it leads to disabilities. Even medicinal relief to lessen suffering is not acceptable if it hastens death (Cuttini et al, 2004). The most sensitive issue of withdrawing or withholding treatment is in the case of possible impairment or disabilities. In 1991, the court accepted that it is legal to withdraw treatment if the quality of life is severely hampered (Re J, 1991, cited in RCPCH, 2004). The crucial issue in the case of withholding or withdrawing treatment to infants born with deformities or those that have high risks of being deformed, even if it is allowed, is who decides on it. The severity of the illness and the hopelessness of the situation are the single most factors that drive the decision, whether taken by parents or doctors. However, neonatal technology, despite its huge progress, has its limits. There is no clear-cut demarcations beyond which it may not be successful. The Grongingen protocol, signed by Dutch doctors in 2002, tried to specify the conditions when neonatal euthanasia may be considered. However, there has been a large scale conflict on this protocol and no unanimity among doctors regarding this (Johnson, 2005). Legally, the moral principles of euthanasia are based on autonomy, beneficence, non-maleficence and justice (Skalansky, 2001). The principle of autonomy means that the individual has the right to choice even when it is considered to be against his best interests. However, the principle may not be applicable in this case since the neonatal is not competent to take an autonomous decision. The principle of beneficence means that a person may take an action that would be beneficial to another person. Although the caregiver may take the decision on the basis of this principle, the benefit of death vis-à-vis prolonged illness is not always clear. On the other hand, non-maleficence means that an action may be taken to avoid harm and pain. Neonatal technology is now sophisticated enough to prolong life but not enough to make it painless. Those who are against withdrawal or withholding treatment to such children argue on this principle. The relationship between beneficence and non-maleficence result in the paternalistic approach towards taking a decision in the best interest of the infant in order to reduce suffering. The principle of justice is often quoted to provide the neonate’s right to life but it is unclear whether justice would mean the same rights to all neonates or those that are clinically similar. The ethical dilemma Confronted with a decision on withdrawing or withholding treatment for children, a number ethical issues arise (UK Clinical Ethics Network): 1) Sanctity of life: according to this ethical principle, all human lives are valuable whatever their qualities are. 2) Acts/ Omission: It is usually very difficult to decide which act enhances death and which simply reduces pain. A doctor cannot give a lethal injection but may withhold an injection that could have sustained life. 3) Double effect: the clinical team may not act to enhance death but acts on the presumption that death is imminent. It might be the case that doctors prescribe pain-relieving medicines that might at the same time shorten the life. In this case, the doctor is not really taking an active measure to enhance death but knows that there cannot be an additional harm in. 4) Beneficence: the doctor has the duty to act in the child’s best interests. Although it is a dilemma that the doctor finds death to be in the best interest of the child considering the severity of effects on the quality of life in case of survival, the decision has to be made in surrogate since the child is not competent to express his views. 5) Nonmaleficence: the doctor has the duty not to harm, a fundamental tenet in the medical ethics. Many treatments may be harmful on its own but the end of life decision is distinctly different from a normal situation. Duty of care For neonates, the legal framework ensures the child’s right to life. The condition of the child’s “best interests” that becomes the decisive factor assumes that the child has reached personhood. In that case, it is also presumed that the foetus acquires personhood at the time of conception and develops through the pregnancy term. However, in that case, it disregards the role of technology and society in the development of a person. Alternatively, it must also be assumed that in the future neonatal technology could develop to such an extent that foetuses of even 6 weeks could be rescued with minimum risk. In that case, decisions on even early abortion would be diluted with the provision of pro-life arguments and a person who has suffered a miscarriage in the initial stages would have to be resuscitated (Boyle et al 2002). Costs of neonatal resuscitations are prohibitive. Not only is it a strain on the parents to incur the immediate costs as well as the prolonged costs if the baby survives, it is also a social cost. Despite the unpleasantness of the situations, costs are often argued as a crucial determinant for withholding treatment. In addition, it may be deemed unjust to impose a life full of pain and suffering with no pleasure on the child as well as on the parents. However, the quality of life is as uncertain as the success of the resuscitation effort. Neonatal euthanasia is illegal in all countries although the judiciary allows it under certain circumstances. In Netherlands, too, it is illegal, but there are reports that elaborated end-of-life steps have been taken. For example, in 1996, there were two court cases that occurred in the Netherlands. In one case, there was active euthanasia to an infant born with extreme spina bifida who had little chance of survival. In the other case, it was delivered to an infant with trisamy 13. In both cases, medical diagnosis was that treatment was futile. The courts accepted the situation (Verhagen & Sauer, 2005). Communication It is usually required by law that parents should be given the clearest picture of the medical case of the infant so that they can decide impartially. In most cases, however, it does not happen so. Doctors usually come to a decision before they present the case to the parents who, therefore, have a biased view. Usually, parents are shattered when they hear about their baby’s abnormality and the dramatic news most often make them take the decision “in the best interest of the child”. However, shorn off the drama, the news may be acceptable to the parents who may then decide to take it in their stride and provide the child with the best possible life even if it is not a normal life. In most cases, the fear of the unknown possibilities of disabilities colours the caregivers’ decision which is actually an easier decision. As opposed to the ethics of withholding treatment, Sayeed (2005) suggests an “ethics of wonder” – the immense possibilities of life that current medical knowledge has not yet discovered. Arguments against neonatal euthanasia are often based on religious grounds or in fear of mistakes. It is also believed that if it is selectively allowed, there will be a tendency to allow it in general. The moral ground for opposing neonatal euthanasia is based on the understanding of considering infants as persons. Then, the society’s interest is in protecting an individual’s personhood at any cost. There is a utilitarian element in this argument. As Engelhardt (1978) says, “it is difficult to determine specifically when in human ontogeny persons strictly emerge. Socializing infants into the role person draws the line conservatively. Humans do not become persons strictly until sometime after birth. Unlike persons strictly, who are bearers of both rights and duties, persons in the social sense have rights but no duties. That is, they are not morally responsible agents, but are treated with respect (i.e. rights are imputed to them) in order to establish a practice of considerable utility to moral agents: a society where kind treatment of the infirm and weak is an established practice. The social sense of a person is a way of treating certain instances of human life in order to secure the life of persons strictly” (quoted in Skalansky, 2001). Even if an infant is not considered a person yet, all individuals are considered to have the right to life in the social sense. Some critics of withholding neonatal treatment are as vociferous to call it murders. For example, Robertson (1978) says, "In the case of a defective infant the withholding of essential care would appear to present a possible case of homicide by omission on the part of parents, physicians, and nurses, with the degree of homicide depending on the extent of premeditation. Following a live birth, the law generally presumes that personhood exists and that there is entitlement to the usual legal protections, whatever the specific physical and mental characteristics of the infant may be. Every state imposes on parents a legal duty to provide necessary medical assistance to a helpless minor child. If they withhold such care and the child dies, they may be prosecuted for manslaughter or murder” (quoted in Skalynsky, 2001). Even though the decision of withholding or withdrawing treatment legally lies with the parents, all those who are involved with the infant’s care should be aware of the situation, whether of the decision the euthanasize or the aggressive treatment. For example, if a baby has multi-organ failure as a result of sepsis, the paediatrician can only advise the nurses and the parents about the condition but ultimately the parents will have to decide. There is usually little dispute in cases when the baby is born before 22 weeks’ gestation as there are very slim chances of survival. The more debatable situation is when chances of survival are not too low but that of deformity high. For example, an infant that suffers intracranial hemorrhage and subsequently develops diffuse cystic encelophalomalacia has a high risk of severe mental disability (Gunderman & Engle 2005). Very often, conditions like these lead parents to take the ultimate step of withholding treatment. However, in most circumstances, nurses are not taken into the decision-making apparatus. It is in conditions like these which, however, prompt an aggressive action on the part of nurses since long-term therapy might have some results even if the paediatrician steps are fruitless. Extensive medical care and recurring hospitalization are often the motivating factors for withholding treatment. Issues with nursing RCPCH guidelines mandate cooperation between the healthcare staff and parents to decide on the withdrawal or withholding of treatment decision as well as on care options. The clinical team should never decide on the withdrawal of treatment from the beginning since there have been cases when extremely doubtful cases have ended up with the child surviving. Various options of care, including ventilation, medicinal treatment and intravenous options should be attempted before deciding on withdrawing. Withholding of feeding may be a very sensitive issue with parents but it may be necessary for babies with progressive digestive disorders. Similarly, the use of paralysing agents and muscle relaxants must be used judiciously so that it does not enhance death. Increase of muscle relaxant doses before the ventilator is removed to prevent terminal gasping is also unlawful. On the other hand, paralysing agents may be needed to undertake curative treatment if the child has a brain injury. Palliative cure is an extremely important issue for caregivers. Such care may begin when death becomes imminent or when the clinical team decides to withdraw treatment. Nurses need to carefully plan the palliative care procedures in consultation with the family, particularly if the child is moving between the hospital and home setting (RCPCH, 2004). Conclusion The legal and ethical issues regarding withdrawing or withholding treatment for children, particularly neonates, is extremely complex. While the ethical dimensions hinge on duty of care and right to life for children, the legal framework allows for withdrawing or withholding treatment for certain cases. These situations include when the chances of survival are very low or there are great chances of reducing the quality of life as a result of resuscitation that might lead to severe impairment or disabilities. As of laws of the United Kingdom, the medical advice may overrule parental wish for withdrawal although there should be free communication between doctors, parents and caregivers. The courts, however, do not support active euthanasia for children even if there are strong chances of suffering. Instead, the legal stand is very clear in specifying that palliative care should be offered if death does not occur when the ventilator is withdrawn. 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