PEDIATRICS Vol. 116 No. 3 September 2005, pp. 736-739 (doi:10.1542/peds.2005-0014)
SPECIAL ARTICLE |
End-of-Life Decisions in Newborns: An Approach From the Netherlands
Department of Pediatrics, Beatrix Children's Hospital, University Medical Center Groningen, Groningen, the Netherlands
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ABSTRACT |
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 TOP ABSTRACT CATEGORIES OF NEWBORNS FOR...ACCEPTABILITY OF EUTHANASIA IN...ACCOUNTABILITY IN NEWBORN...CONCLUSIONSREFERENCES |
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End-of-life decisions in newborns with incurable conditions are especially difficult for pediatricians if they regard the group of stable infants with a hopeless prognosis, not dependent on technology. If a life full of severe and sustained suffering that cannot be relieved by any other means is expected, deliberate ending of life can be an acceptable choice in the Netherlands under very strict conditions. To increase the quality of the decision-making process and facilitate the mandatory reporting of life-ending procedures, a set of medical and legal guidelines (the Groningen protocol) was made in our institution in collaboration with the district attorney. This protocol serves as a tool to bring newborn euthanasia under a regime of effective control. This article describes the present approach to life-ending measures in newborns in the Netherlands and gives an overview of the protocol.
Key Words: decision-making • end of life • newborn
The management of severely affected newborns is one of the most difficult and problematic aspects of pediatric practice. Although technologic developments have provided tools to deal with many consequences of premature birth and congenital anomalies, the decision when to start and when to withhold treatment in individual cases remains very difficult. Even more difficult are the decisions regarding end-of-life measures in infants who have no hope for improvement and will lead a life of severe suffering that cannot be alleviated by any other means.
In the Netherlands, euthanasia is legally accepted for competent persons 
12 years old who have a limited life expectancy and experience severe and persistent suffering. The question then arises of whether there are circumstances in which newborns and infants could be afforded the same considerations as competent persons despite the fact that they cannot express their own will. In the Netherlands, actively ending the life of an infant is considered a criminal offense except in extreme situations. An incurable disease with a predicted life full of sustained suffering could be one of these extreme situations. The control mechanism over termination of life in newborns is based on the doctor's duty to report the infants' death as the result of a nonnatural cause. The decision regarding the legal acceptability of the procedure is left to the prosecuting authorities, who are allowed the discretion not to prosecute. To provide these authorities with all necessary information and to facilitate the reporting of life-ending procedures by physicians, a protocol was developed in our hospital in collaboration with the local prosecutor. Here we describe the present approach to life-ending measures in infants in the Netherlands and give an overview of the Groningen protocol.
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CATEGORIES OF NEWBORNS FOR WHOM END-OF-LIFE DECISIONS MIGHT BE MADE |
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TOPABSTRACTCATEGORIES OF NEWBORNS FOR...ACCEPTABILITY OF EUTHANASIA IN...ACCOUNTABILITY IN NEWBORN...CONCLUSIONSREFERENCES |
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Newborns in whom end-of-life decisions are considered can be divided into 3 categories.1,2
Group 1 encompasses infants who will die shortly despite the use of continued invasive medical technology. They are infants with an underlying disease in whom death is inevitable, although in some cases they can be kept alive for a short period of time. Children born with severe lung hypoplasia may serve as an example. In most cases, when the futility of the treatment is apparent, the ventilatory support is removed so that the child can die in the arms of the mother or father.
Group 2 consists of patients who potentially can survive but whose expected quality of life after the intensive care period is very grim. Different groups of patients may fall into this category: for instance, infants with severe congenital intracranial abnormalities (eg, holoprosencephaly) or severe acquired neurologic injury (eg, asphyxia or severe intracranial hemorrhages). Children in this category are expected to die when intensive treatment is withdrawn.
Group 3 encompasses patients with a poor prognosis who do not depend on technology for physiologic stability and whose suffering is severe, sustained, and cannot be alleviated. An example are children who have survived thanks to advanced technology but for whom it becomes clear after completion of intensive treatment that life will be full of suffering without any hope of improvement. In retrospect, one might not have wanted to start treatment for these children if the outcome had been known. Another example are children with serious congenital malformations or diseases that cannot be treated, and as a result of (complications of) this condition, the child will lead a life of sustained suffering that cannot be alleviated (eg, epidermolysis bullosa, type Hallopeau-Siemens). Also in this group are children from group 2 that were expected to die after the intensive care treatment was withdrawn but remained alive with severe suffering.
Physiologic Futility (Group 1)
The decision to withhold or withdraw treatment in the first group is acceptable for physicians in Europe and the United States.3–5 When there is no chance of survival and treatment is futile according to current medical standards, physicians are morally bound and legally entitled to withhold or withdraw life-sustaining treatment. Continuation of treatment will only lead to additional suffering without any benefit for the infant. Because of improved prenatal care, many lethal diagnoses can be made before birth, allowing the pediatrician to concentrate on comfort care after birth. In the remaining cases, the diagnosis must be made after a period of stabilization while a diagnostic work-up is done. Once the diagnosis is made, the intervention is withdrawn and the child immediately dies. In our opinion, there are no ethical or legal dilemmas in withholding or withdrawing treatment from this group of patients.
Intensive Care Treatment With a Very Poor Prognosis (Group 2)
In all cases of intensive care treatment, it is the obligation of physicians, together with the parents, to evaluate if the treatment given is in the best interest of the infant. Neonatologists in the Netherlands and a vast majority of neonatologists in Europe are convinced that the aim of intensive care treatment is not only survival of the infant; the way the child will survive is also extremely important. Also, in the United States neonatologists are prepared to withdraw intensive care treatment in hemodynamically stable newborns because of the predicted poor quality of life.5 The interest of the infant is paramount, and all decisions regarding the treatment and continuation of treatment must be based on the best interest of the child. The opinion of the parents in the decision to either continue or withhold treatment is critical. When parents want to continue the treatment, it should be done. When parents and physicians together are convinced that additional treatment is not in the best interest of the child, the option for discontinuation should be available. This must be the decision of parents and physicians together; parents must never be left with the idea that they alone have to make decisions about the life of their child. Medication given with the intention to alleviate pain and suffering in the dying phase is widely accepted by pediatricians in Europe. However, also in Europe, there are differences in opinion on the appropriateness of such medication when given with the intention to hasten death.6–8
Stable Infants With a Hopeless Prognosis, Not Dependent on Technology (Group 3)
In rare cases, pediatricians and neonatologists are confronted with patients who can survive without technology but a life full of suffering that cannot be alleviated is expected for them. It is vital that the medical team has an accurate diagnosis and prognosis that are discussed with the parents. The team must include a physician not directly involved in the management of the patient. When a child is suffering, all possible measures must be taken to alleviate it. There are, however, situations in which no improvement over time can be expected and the suffering cannot be alleviated. In these cases, both the parents and physicians might conclude that death would be more humane than continuation of life.
A possible strategy for physicians in these cases could be to wait for "nature to take its course," sometimes in combination with withholding or withdrawing tube feeding, because of the futility of continued treatment. Most infants will not be able to take sufficient oral food and will die of inadequate hydration and nutrition. This strategy is acceptable and justifiable for a number of physicians but requires acceptance of severe suffering for a sometimes long period of time.8,9 Alternatively, the life of such a child could be ended deliberately with the use of lethal drugs. This is qualified as "euthanasia" in most countries in the world. In the Netherlands, an adult with hopeless a prognosis and unbearable suffering would be permitted euthanasia on his/her request. A newborn cannot make a euthanasia request, and parents are not accepted as their legal representatives in such a matter. Does that mean that these children cannot be afforded the same considerations? We are convinced that with very strict precautions and in extreme, well-defined circumstances, it should be permitted to actively end the life of a child with hopeless suffering that cannot be alleviated by any means.
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ACCEPTABILITY OF EUTHANASIA IN NEWBORNS IN THE NETHERLANDS AND EUROPE |
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TOPABSTRACTCATEGORIES OF NEWBORNS FOR...ACCEPTABILITY OF EUTHANASIA IN...ACCOUNTABILITY IN NEWBORN...CONCLUSIONSREFERENCES |
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Euthanasia in newborns is illegal and subject to criminal prosecution in the Netherlands, just as it is in all other countries in the world. The Dutch Medical Association and the Dutch Pediatric Association have issued reports on the legitimacy of end-of-life decisions in very severely affected newborns.10,11 They argue that in these infants, it is not the life-ending decisions but the life-prolonging decisions that must be legitimized. In their opinion, the physician should initiate treatment if there's a chance of a favorable outcome to win time to establish a diagnosis. If the child survives but the condition of the child is such that had it been foreseen in the beginning, the treatment would not have been started, the doctor must be prepared to take the responsibility to discontinue the treatment. Legitimation of (additional) artificial prolonging of life is absent. Not only survival of the infant but also the condition in which the child will survive, the quality of life, is extremely important. Quality-of-life considerations were operationalized in the same reports in terms of the child's expected ultimate level of functioning in a number of distinct aspects: communication, suffering, dependency on others, autonomy, and personal development. Both reports declare that if after discontinuation of treatment a situation of severe suffering occurs, euthanasia can be an acceptable choice.
Several cases of deliberate ending of life in newborns have since been reported in the literature.12–14 Two court cases in the Netherlands in 1996 also addressed the issue of euthanasia in newborns. In the first case, a physician actively ended the life of a newborn diagnosed with an extreme form of spina bifida. In the second case, the life of a newborn with trisomy 13 was ended. In both cases, after having reached a final diagnosis and prognosis, treatment was considered futile by both the medical team and the parents and palliative care was given. Despite palliative care, extensive suffering that could not be alleviated occurred, and both physicians decided to end the life of these infants with lethal drugs. In both cases the doctors were acquitted. The courts accepted that the physicians had to choose between the duty to retain life (and accept the severe suffering) and the duty to limit the suffering (and end the life of the child). They considered the choice to end the life of the infants justified because there was no alternative. As a result of these verdicts, euthanasia in newborns can be considered justifiable in newborns with hopeless and very severe suffering that cannot be alleviated if physicians act in accordance with current medical understanding and accepted medical-ethical values.
Neither the costs of care of severely affected children nor the concern of redistribution of resources have been given any weight in the discussion about the fundamental acceptability of euthanasia in the Netherlands.
In the Netherlands, an estimated number of 10 to 15 cases of euthanasia in newborn infants take place yearly.15,16 This number has remained stable between 1995 and 2001. Seventy-three percent of neonatologists in France have made the decision to administer drugs with the purpose of ending the life of a newborn infant.7 Their colleagues in Italy (2%), Spain (2%), Germany (4%), United Kingdom (4%), and Sweden (2%) are making this decision less often. The majority (68%) of pediatricians in Flanders, Belgium, would be prepared to shorten the terminal suffering of a newborn by using lethal drugs.17 They see prevention of suffering as a professional task. In Flanders, lethal drugs were given to actively end the life of 17 newborns in 1 year.
A lot of countries reject newborn euthanasia but accept some form of treatment withholding or withdrawal.8 The argument that is often raised against the acceptance of euthanasia in newborns is the "slippery-slope" argument. It is argued that accepting this practice will lead to a failure of safeguards and erosion of norms so that forms of termination of life that are currently considered as undesirable will be practiced without discussion. The dilemma of discussing these arguments is that hard evidence for this prediction (and for the denial) is not available. We think that, given the far-reaching consequences of active life-ending procedures in newborns that already take place in different parts of the world, an open discussion about the decision-making process and the norms implied is extremely important.
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ACCOUNTABILITY IN NEWBORN EUTHANASIA: THE GRONINGEN PROTOCOL |
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TOPABSTRACTCATEGORIES OF NEWBORNS FOR...ACCEPTABILITY OF EUTHANASIA IN...ACCOUNTABILITY IN NEWBORN...CONCLUSIONSREFERENCES |
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According to Dutch law, it is a doctor's duty to file a death certificate when a patient has died from natural causes. If a death is the result of deliberate termination of life, it cannot be certified as "natural." The doctor must inform the coroner, who inspects the body and, in turn, informs the district attorney, whose office reviews each case in light of the applicable laws or jurisprudence. The district attorney presents the case together with his or her own opinion to the College of Attorneys General, whose 4 members manage the national public prosecution department and provisionally decide whether to prosecute. The minister of justice makes the final decision.
Our recent review on all reported cases of newborn euthanasia in the Netherlands between 1997 and 2004 revealed that of an estimated number of 10 to 15 cases per year, only 22 cases in 7 years were reported.14 Because the legal control system over termination of life is based on self-reporting by the physician, the effectiveness of the system depends entirely on the willingness of the physicians to report. We believe that all cases must be reported to prevent uncontrolled and unjustified euthanasia.
A national survey among pediatricians in 1995 has shown that the main reasons for nonreporting are unclear consequences of reporting and fear of the penal system.15
Insight into what is really happening is significantly increased by the review of all reported cases. With the aim of facilitating reporting, we developed a protocol in 2002, in close collaboration with a district attorney who wanted to encourage dialogue between the legal and medical world. The protocol, also known as the Groningen protocol, contains general guidelines and specific requirements related to the euthanasia decision and its implementation.18 These guidelines were derived from the reports previously mentioned, medical-legal literature, 2 court cases, and analysis of the 22 reported cases in the Netherlands. Five medical requirements must be fulfilled: certainty of the diagnosis and prognosis; presence of hopeless and unbearable suffering; confirmation of the diagnosis, prognosis, and suffering by at least 1 doctor independent of the medical team; parental consent; and performance of the procedure in accordance with the accepted medical standard. Other criteria are supportive, designed to clarify the decision and facilitate assessment. Following the protocol does not guarantee that the physician will not be prosecuted, because the Minister of Justice can always overrule the decision of nonprosecution made by the College of Attorneys General. Many hospitals in the Netherlands have adapted the protocol. Additionally, the Dutch Pediatric Association recently declared that they fully support the Groningen protocol, and they propose to transform it into a national protocol as soon as possible.19
Because fear of the penal system limits the present system of control, many organizations have pleaded repeatedly for multidisciplinary assessment of all cases of newborn euthanasia. They argue that a committee of experts (medical, legal, and ethical) is more capable of reviewing these cases than the prosecutors. This review should lead to heavyweight advice to the prosecuting authorities. The willingness of physicians to report to such a committee is expected to be much higher than reporting to a district attorney, as is the present situation. The Ministry of Health recently declared that a proposal for such a committee will soon be presented to parliament.
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CONCLUSIONS |
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TOPABSTRACTCATEGORIES OF NEWBORNS FOR...ACCEPTABILITY OF EUTHANASIA IN...ACCOUNTABILITY IN NEWBORN...CONCLUSIONSREFERENCES |
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Ethical dilemmas are among the most difficult problems in neonatal care. The ultimate goal of all medical treatment is to ensure a life for the patient that is as healthy as possible. In extreme cases, the prognosis for a child can be a life full of suffering that cannot be alleviated by any means. In these cases, death might be more humane than the continuation of a life full of suffering. Possible strategies for these children include some form of withdrawal or withholding of treatment. In these extreme conditions, the active ending of a life of a child can also be an acceptable strategy according to pediatricians in the Netherlands. We are convinced that it is extremely important that all cases of newborn euthanasia be reported and reviewed by an external (legal) body. The Groningen protocol can serve as a helpful tool for physicians to ensure the carefulness of the decision-making process and facilitate reporting.
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FOOTNOTES |
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Accepted May 2, 2005.
Address correspondence to A. A. E. Verhagen, MD, JD, Department of Pediatrics, Beatrix Children's Hospital, University Medical Center Groningen, PO Box 30.001, 9700 RB Groningen, the Netherlands. E-mail: e.verhagen{at}bkk.azg.nl
No conflict of interest declared.
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PEDIATRICS (ISSN 1098-4275). ©2005 by the American Academy of Pediatrics
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