Education
Pediatric Euthanasia and Palliative Care Can Work Together
American Journal of Hospice & Palliative Medicine® 1-4 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115570999 ajhpm.sagepub.com
Stephen S. Hanson, PhD1
Abstract Since the Netherlands produced the Groningen protocol describing the methods to be used for pediatric euthanasia and Belgium passed laws authorizing euthanasia for children who consent to it, the issue of pediatric euthanasia has become a relevant topic to discuss. Most rejections of pediatric euthanasia fall into 1 or more of 3 categories, each of which has problems. This article shows how several recent arguments against pediatric euthanasia fail to prove that pediatric euthanasia is unacceptable. It does not follow from this that the practice is permissible but rather that if one is to reject such a practice, stronger arguments will need to be made, especially in countries where adult euthanasia or assisted suicide is already permitted. Keywords euthanasia, palliative care, ethics, pediatrics, end of life
Since the publication of the Groningen protocol in 2005,1 which allowed the Netherlands euthanasia policies to be exercised on infants and children with ‘‘hopeless prognosis and unbearable suffering,’’ some thinkers have argued strongly against active pediatric euthanasia.2,3 This debate has been reinvigorated by Belgium’s recent adoption of a similar law.4-6 Although these 2 policies apply to different patient populations, as the Groningen protocol refers to neonates, while the Belgian law is only applicable to minors who are capable of making a request for euthanasia, both the Groningen protocol and the Belgian law allow pediatric active euthanasia if a child has a ‘‘hopeless prognosis and unbearable suffering,’’1 and active euthanasia is agreed to by both parents and physicians (and, in the case of the Belgian law, requested by the minor patient). Even for persons who might accept the possibility of active euthanasia for mentally sound adults, the possibility of pediatric euthanasia raises additional moral concerns, which is why these newer policies have caused debate even in countries where adult active euthanasia is permitted. The objections to these laws and protocols can be condensed into 3 general lines of argument. First, it is argued that pediatric palliative care is preferable and better aligns with the traditional healing goals of medicine. As one author puts it, active euthanasia ought to trouble:
while palliative care aims for such broader healing. Thus, the argument goes, we ought to reject pediatric euthanasia in favor of palliative care because the goal of healing even when cure is not possible is a vital part of medicine. Palliative care does aim for such healing, and this is valuable to many children and their families. We can heal, even when we cannot effect a cure; this is the heart of palliative care and (if truth be told) a large segment of the remainder of medicine. It does not follow from this that euthanasia cannot be warranted in any case. The challenge is to show that active euthanasia is inconsistent with the goal of healing ‘‘of a broader scope.’’ The history of medicine is full of cases of the limits of the ability of medicine. How we deal with this has been a central question of medicine and the ethics of medicine. What techniques we can bring to this effort to heal when cure is impossible has changed, as our skills and resources have improved, and also as our society has changed, but the goal of healing has not. The question of whether active euthanasia can be considered as one of these techniques is entirely within the realm of the traditions of medicine. It may be that active euthanasia for a child is inappropriate, even on that child’s request; but to determine that we will use exactly the tools that we use to determine whether, for example, terminal sedation alongside withholding of nutrition and hydration is permissible for a child 1
pediatric health professionals who hold dear this narrative [of the history of healing and medicine] and the focus on healing—a positive and beneficent act [and who do not want] to simply avoid harm or reduce suffering but expect[] medicine to accomplish healing of a broader scope . . .
Department of Philosophy, University of Louisville, Louisville, KY, USA
Corresponding Author: Stephen S. Hanson, PhD, Department of Philosophy, University of Louisville, Humanities 313C, Louisville, KY 40292, USA. Email: [email protected]
2 in similar circumstances. So, when, for example, Carter asks, ‘‘When looking at intentionally ending a child’s life—as a means to alleviate suffering—to what do we appeal—science, history, philosophy, religion?’’5(p1) there is an answer to this presumably rhetorical question. To what do we ever appeal when making decisions about proper care for children? We ought to use these same tools in decisions about pediatric euthanasia as well. When making difficult decisions for neonates, the American Academy of Pediatrics recommends making ‘‘treatment decisions that are guided primarily by the best interest of the child.’’7(p401) For older children, this too guides our decisions, although for these children with the ‘‘capacity for discernment’’ mentioned in the Belgian law4—that is, those capable of giving or withholding assent to treatment—we take that seriously as well. So, we appeal to considerations of the best interests of the patient, and, when possible, to whether or not she or he makes an informed request for it. Or, to put it another way, we make decisions about pediatric euthanasia in exactly the same way that we make all other medical decisions for a child patient. With regard to the matter of informed requests from older minors, Siegel et al claim that ‘‘Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort,’’ but such a blanket statement (which they give without any supporting data) is almost obviously false on its face. Children’s capacities differ greatly depending upon age, experiences, and so on. Moreover, capacity for discernment is not a simplistic yes or no question but rather is assessed in relation to a particular decision. A 4-year-old can (usually) discern whether she likes the flavor of a particular food; other, more complicated discernments still remain beyond her. The same is true for decisions about medical care, including end-of-life care; a competent assessment of the capacity of a child for discernment should include an individualized evaluation. This is why the Belgian law requires an assessment by a physician rather than a mere query as to a child’s age.4 This leads into the second line of argument, which is to question both whether euthanasia can ever be in the ‘‘best interests’’ of a pediatric patient and whether the parents and physicians of that child are capable of making such a judgment.2,3,5 Parental assessment of the best interests of a child is often only an assessment of what the parents themselves think would be unbearable suffering, and it is ‘‘inherently . . . shaped by the process of what information is given them.’’5(p2) As long as any decisions are made for children that take the best interests of the child into account, the difficulty in determining what this is will continue. The reason for this is that there is no single understanding of what ‘‘best interests’’ entails as that will differ from person to person. Although best interests imply an objective evaluation, it is necessarily a subjective matter. Rather than this serving as an indictment of pediatric euthanasia, however, this indicates a concern that will continue regardless of whether active euthanasia is permitted. How do we address the difficulty of variations in what ‘‘best interests’’ means in other cases? Given the many different understandings of what makes up a good life and of the value
American Journal of Hospice & Palliative Medicine® of particular medical outcomes in the face of these differences, whenever possible for adult patients, we seek guidance from the worldview of that patient through informed consent. Much of the rationale for seeking a patient’s informed consent is that only the patient can know which of her treatment alternatives will best promote her best interests as interpreted by her. As noted in the influential (albeit American, not Belgian) decision in Canterbury v. Spence, ‘‘[I]t is the prerogative of the patient, not the physician, to determine for himself the direction in which his interests seem to lie.’’8({30) We seek the consent of adult patients to guide us in understanding their best interests as understood by them. For a child, we cannot obtain this guidance and thus cannot be sure under any circumstances that we have properly described the best interests of the child without influence from our own biases. Note that the Belgian law requires that the pediatric patient must be able to make the decision with adequate capacity and must do so, and both the parents and the treating physician must agree. (In addition, the law requires assessment of the minor by a child psychiatrist or psychologist to assess capacity for discernment.)3 The Groningen protocol is specifically aimed at infants and so this does not apply in those cases.1 Still, decisions are made for infants all the time, and in all such cases, we do the best we can to say what is in the child’s best interests. Those who know the child, and the condition from which the child is suffering, are considered to be those who can best guide the decision as to what is in that child’s best interests. We perhaps can never know for certain that we have properly assessed best interests for a child, but the Belgian law and the Groningen protocol require that we do as much as possible to confirm that we have tried. So does every decision made in a neonatal intensive care unit (NICU) or pediatric intensive care unit. It is true that physicians help ‘‘shape’’ this assessment, influencing the results5; and this remains a concern but not merely for requests for active euthanasia. For any decision—including, for example, the decision to withdraw aggressive lifesustaining care and to focus more on symptom relief—physicians present information and patients and families try to assess that information. It is impossible not to frame a discussion when presenting it; the best anyone can do is to be aware of that and to try one’s best to minimize and ameliorate that framing. Evaluating the best interests for a child is and will remain a real problem, but it is no solution simply to remove active euthanasia from the list of options available. A final line of argument worries about the slippery slope.2,3,5 In these discussions, it is important to be precise. What is the slope, where is it leading, and why would it be bad for us to arrive there? One slope-related concern is that the criteria for active euthanasia have become more encompassing. This is true. The criteria for euthanasia have become more encompassing; the Belgian law and the Groningen protocol are 2 examples of this. But why is this, in itself, problematic? A law can expand its application for a variety of reasons, one of which is that the law was begun in a narrow population to determine whether there will be unexpected consequences of
Hanson the law. If, instead, the law performed in the expected manner, expanding it would be a natural progression of the law and not an indication of a failed program or one out of control. One might consider the expansion of Medicaid in the United States from its inception in 1965 (where it was, itself, an expansion of the Kerr-Mills Act of 1960) through developments in 1972, 1977, and on through the expansions authorized in the Affordable Care Act of 2010, as one example of this.9 That there has been expansion in the laws does not indicate that the expansion is troubling; some additional reason must be given for why a given expansion is problematic. The reason seems to be that this expansion is to allowing the practice in children who ‘‘need to be protected by society irrespective of their medical condition,’’2 but again, it is unclear why this is failing to protect them any more than ceasing aggressive NICU treatments in the face of a hopeless diagnosis would be. Perhaps the argument is instead that the grounds under which active euthanasia would be allowed will widen, moving from, for example, severe epidermolysis bullosa (which is lethal and excruciatingly painful) to, for example, Down syndrome or spina bifida.10 This, too, is an argument that applies just as well to the provision or nonprovision of aggressive treatments. The moral issue is not so much whether active euthanasia is permissible but whether life with epidermolysis bullosa, spina bifida, or Down syndrome is in the best interests of an infant. If it is, then the technique used to end the life is not the right topic of debate— consider, as an example, the appropriate response to parents refusing a surgical intervention for duodenal atresia in an infant with Down syndrome. To hold that this might be permissible because it is not active euthanasia misses the point—the claim that ‘‘life with Down syndrome is not in this child’s best interests’’ is where this decision goes wrong. If a slippery slope is a problem, it is not removed by prohibiting active pediatric euthanasia; in fact, it is misleading to ‘‘resolve’’ this matter by eliminating active euthanasia since that does nothing of the sort. Arguably, slippery slopes in decisions to cease treatment may be more risky, as decisions for active euthanasia are more carefully studied than decisions to withdraw aggressive treatment. There is widespread attention to the practice of euthanasia where it is legal, and it is from that attention that we are aware of some concerns related to its practice, such as the cases of euthanasia performed without explicit patient consent. We know this in part because reporting rates have dramatically increased (in the Netherlands) with the regularization and legalization of euthanasia (from 18.0% in 1990 to 80.2% in 2005.)11 The number of cases where euthanasia had been discussed with the patient before it was performed without explicit consent increased from 26.5% to 60% from 2001 to 2005 in the Netherlands and that many (though not all) of the cases where it was not discussed involved patients who were unconscious or incompetent to make their own decisions.11 After the Groningen protocol was created, pediatric euthanasia for spina bifida with comorbidities actually decreased from an estimated 15 cases annually to zero, mostly due to increases in the use of structural ultrasound examination at 20 weeks and increased terminations of pregnancies where spina bifida was noted.10
3 One may disagree with the public or legal conclusions that are reached by analysis of these data, but it is simply untrue that there is limited or decreasing public attention to the practice. On the contrary, because of the significant amounts of data, decisions can be made with more precision than they could be if there was not such constant attention paid. Palliative care is, and should be, an important part of end-oflife care for any patient. Belgium evidently agrees, as ‘‘at the same time the law [allowing euthanasia] was passe[d], a second Act was passed that doubled public funding for palliative care and guaranteed the right to palliative care in every hospital, nursing home, and even at home.’’12(np) The provision of active euthanasia has not been found to entail poor palliative care in Belgium,13,14 and in fact Belgium was recently ranked third in the world in their quality of palliative care.15 Persons near the end of life may fail to obtain adequate palliative care, but they would seem less likely to do so in Belgium than nearly any other country.
Conclusion None of the arguments provided specifically against pediatric euthanasia in the Netherlands and Belgium are compelling. In countries where some forms of active euthanasia are permitted, and thus arguments prohibiting all forms of active euthanasia have already been rejected, the specific concerns of pediatric euthanasia do not provide a reason to disagree with that practice. If one agrees with pediatric euthanasia in cases of ‘‘hopeless prognosis and unbearable suffering,’’ the lack of compelling arguments against that position provides support for allowing pediatric euthanasia; if one wishes to argue against it, other, better arguments are needed. Until proven otherwise, it seems appropriate to think that pediatric euthanasia and palliative care can work together. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
References 1. Verhagen E, Sauer PJ. The Groningen protocol—euthanasia in severely ill newborns. N Engl J Med. 2005;352(10):959-62. 2. Jotkowitz AB, Glick S. The Groningen protocol: another perspective. J Med Ethics. 2006;32(3):157-158. doi:10.1136/jme.2005. 012476. 3. Jotkowitz AB, Glick S, Gesundheit B. A Case Against Justified Non-Voluntary Active Euthanasia (The Groningen Protocol.) Am J Bioeth. 2006;8(11):23-26. 4. Belgian Law of 28 May 2002 on Euthanasia, amended by the Law of 13 February 2014 – Consolidated version. (unofficial) trans. Kristof van Assche. Web site. http://philosophicalcomment. blogspot.com.au/2014/02/legalised-euthanasia-for-children.html. Published February 15, 2014. Accessed January 28, 2015.
4 5. Carter BS. Why palliative care for children is preferable to Euthanasia[published online July 19, 2014]. Am J Hosp Palliat Med. 2014;1-3 pii: 1049909114542648. 6. Siegel AM, Sistel DA, Caplan AL. Pediatric Euthanasia in Belgium: disturbing developments. JAMA. 2014;311(19):1963-1964. 7. American Academy of Pediatrics. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007;119(2): 401-403. 8. Canterbury v. Spence. 464 F.2d 772 (D.C. Cir. 1972). 9. Web site. http://kff.org/medicaid/timeline/medicaid-a-timelineof-key-developments/. Published May 2, 2013. Accessed January 28, 2015. 10. Verhagen, AA Eduard. The Groningen Protocol for newborn euthanasia; which way did the slippery slope tilt? J Med Ethics. 2013;39(5):293-295. doi: 10.1136/medethics-2013-101402.
American Journal of Hospice & Palliative Medicine® 11. van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, et al. End-of-Life Practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007;356(19):1957-1965. 12. Web site. http://www.medicalnewstoday.com/articles/104629. php. Published April 18, 2008. Accessed January 28, 2015. 13. Smets T, Bilsen J, Cohen J, Rurup ML, Deliens L. Legal euthanasia in Belgium: characteristics of all reported euthanasia cases. Med Care. 2010;48(2):187-192. 14. Bilsen J, Cohen J, Chambaere K, et al. Medical end-of-life practices under the euthanasia law in Belgium. N Engl J Med. 2009; 361(11):1119-1121. 15. Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J. Development of Palliative Care and Legalisation of Euthanasia: antagonism or synergy? BMJ. 2008;336(7649): 864-867.
Pediatric Euthanasia and Palliative Care Can Work Together
American Journal of Hospice & Palliative Medicine® 1-4 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115570999 ajhpm.sagepub.com
Stephen S. Hanson, PhD1
Abstract Since the Netherlands produced the Groningen protocol describing the methods to be used for pediatric euthanasia and Belgium passed laws authorizing euthanasia for children who consent to it, the issue of pediatric euthanasia has become a relevant topic to discuss. Most rejections of pediatric euthanasia fall into 1 or more of 3 categories, each of which has problems. This article shows how several recent arguments against pediatric euthanasia fail to prove that pediatric euthanasia is unacceptable. It does not follow from this that the practice is permissible but rather that if one is to reject such a practice, stronger arguments will need to be made, especially in countries where adult euthanasia or assisted suicide is already permitted. Keywords euthanasia, palliative care, ethics, pediatrics, end of life
Since the publication of the Groningen protocol in 2005,1 which allowed the Netherlands euthanasia policies to be exercised on infants and children with ‘‘hopeless prognosis and unbearable suffering,’’ some thinkers have argued strongly against active pediatric euthanasia.2,3 This debate has been reinvigorated by Belgium’s recent adoption of a similar law.4-6 Although these 2 policies apply to different patient populations, as the Groningen protocol refers to neonates, while the Belgian law is only applicable to minors who are capable of making a request for euthanasia, both the Groningen protocol and the Belgian law allow pediatric active euthanasia if a child has a ‘‘hopeless prognosis and unbearable suffering,’’1 and active euthanasia is agreed to by both parents and physicians (and, in the case of the Belgian law, requested by the minor patient). Even for persons who might accept the possibility of active euthanasia for mentally sound adults, the possibility of pediatric euthanasia raises additional moral concerns, which is why these newer policies have caused debate even in countries where adult active euthanasia is permitted. The objections to these laws and protocols can be condensed into 3 general lines of argument. First, it is argued that pediatric palliative care is preferable and better aligns with the traditional healing goals of medicine. As one author puts it, active euthanasia ought to trouble:
while palliative care aims for such broader healing. Thus, the argument goes, we ought to reject pediatric euthanasia in favor of palliative care because the goal of healing even when cure is not possible is a vital part of medicine. Palliative care does aim for such healing, and this is valuable to many children and their families. We can heal, even when we cannot effect a cure; this is the heart of palliative care and (if truth be told) a large segment of the remainder of medicine. It does not follow from this that euthanasia cannot be warranted in any case. The challenge is to show that active euthanasia is inconsistent with the goal of healing ‘‘of a broader scope.’’ The history of medicine is full of cases of the limits of the ability of medicine. How we deal with this has been a central question of medicine and the ethics of medicine. What techniques we can bring to this effort to heal when cure is impossible has changed, as our skills and resources have improved, and also as our society has changed, but the goal of healing has not. The question of whether active euthanasia can be considered as one of these techniques is entirely within the realm of the traditions of medicine. It may be that active euthanasia for a child is inappropriate, even on that child’s request; but to determine that we will use exactly the tools that we use to determine whether, for example, terminal sedation alongside withholding of nutrition and hydration is permissible for a child 1
pediatric health professionals who hold dear this narrative [of the history of healing and medicine] and the focus on healing—a positive and beneficent act [and who do not want] to simply avoid harm or reduce suffering but expect[] medicine to accomplish healing of a broader scope . . .
Department of Philosophy, University of Louisville, Louisville, KY, USA
Corresponding Author: Stephen S. Hanson, PhD, Department of Philosophy, University of Louisville, Humanities 313C, Louisville, KY 40292, USA. Email: [email protected]
2 in similar circumstances. So, when, for example, Carter asks, ‘‘When looking at intentionally ending a child’s life—as a means to alleviate suffering—to what do we appeal—science, history, philosophy, religion?’’5(p1) there is an answer to this presumably rhetorical question. To what do we ever appeal when making decisions about proper care for children? We ought to use these same tools in decisions about pediatric euthanasia as well. When making difficult decisions for neonates, the American Academy of Pediatrics recommends making ‘‘treatment decisions that are guided primarily by the best interest of the child.’’7(p401) For older children, this too guides our decisions, although for these children with the ‘‘capacity for discernment’’ mentioned in the Belgian law4—that is, those capable of giving or withholding assent to treatment—we take that seriously as well. So, we appeal to considerations of the best interests of the patient, and, when possible, to whether or not she or he makes an informed request for it. Or, to put it another way, we make decisions about pediatric euthanasia in exactly the same way that we make all other medical decisions for a child patient. With regard to the matter of informed requests from older minors, Siegel et al claim that ‘‘Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort,’’ but such a blanket statement (which they give without any supporting data) is almost obviously false on its face. Children’s capacities differ greatly depending upon age, experiences, and so on. Moreover, capacity for discernment is not a simplistic yes or no question but rather is assessed in relation to a particular decision. A 4-year-old can (usually) discern whether she likes the flavor of a particular food; other, more complicated discernments still remain beyond her. The same is true for decisions about medical care, including end-of-life care; a competent assessment of the capacity of a child for discernment should include an individualized evaluation. This is why the Belgian law requires an assessment by a physician rather than a mere query as to a child’s age.4 This leads into the second line of argument, which is to question both whether euthanasia can ever be in the ‘‘best interests’’ of a pediatric patient and whether the parents and physicians of that child are capable of making such a judgment.2,3,5 Parental assessment of the best interests of a child is often only an assessment of what the parents themselves think would be unbearable suffering, and it is ‘‘inherently . . . shaped by the process of what information is given them.’’5(p2) As long as any decisions are made for children that take the best interests of the child into account, the difficulty in determining what this is will continue. The reason for this is that there is no single understanding of what ‘‘best interests’’ entails as that will differ from person to person. Although best interests imply an objective evaluation, it is necessarily a subjective matter. Rather than this serving as an indictment of pediatric euthanasia, however, this indicates a concern that will continue regardless of whether active euthanasia is permitted. How do we address the difficulty of variations in what ‘‘best interests’’ means in other cases? Given the many different understandings of what makes up a good life and of the value
American Journal of Hospice & Palliative Medicine® of particular medical outcomes in the face of these differences, whenever possible for adult patients, we seek guidance from the worldview of that patient through informed consent. Much of the rationale for seeking a patient’s informed consent is that only the patient can know which of her treatment alternatives will best promote her best interests as interpreted by her. As noted in the influential (albeit American, not Belgian) decision in Canterbury v. Spence, ‘‘[I]t is the prerogative of the patient, not the physician, to determine for himself the direction in which his interests seem to lie.’’8({30) We seek the consent of adult patients to guide us in understanding their best interests as understood by them. For a child, we cannot obtain this guidance and thus cannot be sure under any circumstances that we have properly described the best interests of the child without influence from our own biases. Note that the Belgian law requires that the pediatric patient must be able to make the decision with adequate capacity and must do so, and both the parents and the treating physician must agree. (In addition, the law requires assessment of the minor by a child psychiatrist or psychologist to assess capacity for discernment.)3 The Groningen protocol is specifically aimed at infants and so this does not apply in those cases.1 Still, decisions are made for infants all the time, and in all such cases, we do the best we can to say what is in the child’s best interests. Those who know the child, and the condition from which the child is suffering, are considered to be those who can best guide the decision as to what is in that child’s best interests. We perhaps can never know for certain that we have properly assessed best interests for a child, but the Belgian law and the Groningen protocol require that we do as much as possible to confirm that we have tried. So does every decision made in a neonatal intensive care unit (NICU) or pediatric intensive care unit. It is true that physicians help ‘‘shape’’ this assessment, influencing the results5; and this remains a concern but not merely for requests for active euthanasia. For any decision—including, for example, the decision to withdraw aggressive lifesustaining care and to focus more on symptom relief—physicians present information and patients and families try to assess that information. It is impossible not to frame a discussion when presenting it; the best anyone can do is to be aware of that and to try one’s best to minimize and ameliorate that framing. Evaluating the best interests for a child is and will remain a real problem, but it is no solution simply to remove active euthanasia from the list of options available. A final line of argument worries about the slippery slope.2,3,5 In these discussions, it is important to be precise. What is the slope, where is it leading, and why would it be bad for us to arrive there? One slope-related concern is that the criteria for active euthanasia have become more encompassing. This is true. The criteria for euthanasia have become more encompassing; the Belgian law and the Groningen protocol are 2 examples of this. But why is this, in itself, problematic? A law can expand its application for a variety of reasons, one of which is that the law was begun in a narrow population to determine whether there will be unexpected consequences of
Hanson the law. If, instead, the law performed in the expected manner, expanding it would be a natural progression of the law and not an indication of a failed program or one out of control. One might consider the expansion of Medicaid in the United States from its inception in 1965 (where it was, itself, an expansion of the Kerr-Mills Act of 1960) through developments in 1972, 1977, and on through the expansions authorized in the Affordable Care Act of 2010, as one example of this.9 That there has been expansion in the laws does not indicate that the expansion is troubling; some additional reason must be given for why a given expansion is problematic. The reason seems to be that this expansion is to allowing the practice in children who ‘‘need to be protected by society irrespective of their medical condition,’’2 but again, it is unclear why this is failing to protect them any more than ceasing aggressive NICU treatments in the face of a hopeless diagnosis would be. Perhaps the argument is instead that the grounds under which active euthanasia would be allowed will widen, moving from, for example, severe epidermolysis bullosa (which is lethal and excruciatingly painful) to, for example, Down syndrome or spina bifida.10 This, too, is an argument that applies just as well to the provision or nonprovision of aggressive treatments. The moral issue is not so much whether active euthanasia is permissible but whether life with epidermolysis bullosa, spina bifida, or Down syndrome is in the best interests of an infant. If it is, then the technique used to end the life is not the right topic of debate— consider, as an example, the appropriate response to parents refusing a surgical intervention for duodenal atresia in an infant with Down syndrome. To hold that this might be permissible because it is not active euthanasia misses the point—the claim that ‘‘life with Down syndrome is not in this child’s best interests’’ is where this decision goes wrong. If a slippery slope is a problem, it is not removed by prohibiting active pediatric euthanasia; in fact, it is misleading to ‘‘resolve’’ this matter by eliminating active euthanasia since that does nothing of the sort. Arguably, slippery slopes in decisions to cease treatment may be more risky, as decisions for active euthanasia are more carefully studied than decisions to withdraw aggressive treatment. There is widespread attention to the practice of euthanasia where it is legal, and it is from that attention that we are aware of some concerns related to its practice, such as the cases of euthanasia performed without explicit patient consent. We know this in part because reporting rates have dramatically increased (in the Netherlands) with the regularization and legalization of euthanasia (from 18.0% in 1990 to 80.2% in 2005.)11 The number of cases where euthanasia had been discussed with the patient before it was performed without explicit consent increased from 26.5% to 60% from 2001 to 2005 in the Netherlands and that many (though not all) of the cases where it was not discussed involved patients who were unconscious or incompetent to make their own decisions.11 After the Groningen protocol was created, pediatric euthanasia for spina bifida with comorbidities actually decreased from an estimated 15 cases annually to zero, mostly due to increases in the use of structural ultrasound examination at 20 weeks and increased terminations of pregnancies where spina bifida was noted.10
3 One may disagree with the public or legal conclusions that are reached by analysis of these data, but it is simply untrue that there is limited or decreasing public attention to the practice. On the contrary, because of the significant amounts of data, decisions can be made with more precision than they could be if there was not such constant attention paid. Palliative care is, and should be, an important part of end-oflife care for any patient. Belgium evidently agrees, as ‘‘at the same time the law [allowing euthanasia] was passe[d], a second Act was passed that doubled public funding for palliative care and guaranteed the right to palliative care in every hospital, nursing home, and even at home.’’12(np) The provision of active euthanasia has not been found to entail poor palliative care in Belgium,13,14 and in fact Belgium was recently ranked third in the world in their quality of palliative care.15 Persons near the end of life may fail to obtain adequate palliative care, but they would seem less likely to do so in Belgium than nearly any other country.
Conclusion None of the arguments provided specifically against pediatric euthanasia in the Netherlands and Belgium are compelling. In countries where some forms of active euthanasia are permitted, and thus arguments prohibiting all forms of active euthanasia have already been rejected, the specific concerns of pediatric euthanasia do not provide a reason to disagree with that practice. If one agrees with pediatric euthanasia in cases of ‘‘hopeless prognosis and unbearable suffering,’’ the lack of compelling arguments against that position provides support for allowing pediatric euthanasia; if one wishes to argue against it, other, better arguments are needed. Until proven otherwise, it seems appropriate to think that pediatric euthanasia and palliative care can work together. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
References 1. Verhagen E, Sauer PJ. The Groningen protocol—euthanasia in severely ill newborns. N Engl J Med. 2005;352(10):959-62. 2. Jotkowitz AB, Glick S. The Groningen protocol: another perspective. J Med Ethics. 2006;32(3):157-158. doi:10.1136/jme.2005. 012476. 3. Jotkowitz AB, Glick S, Gesundheit B. A Case Against Justified Non-Voluntary Active Euthanasia (The Groningen Protocol.) Am J Bioeth. 2006;8(11):23-26. 4. Belgian Law of 28 May 2002 on Euthanasia, amended by the Law of 13 February 2014 – Consolidated version. (unofficial) trans. Kristof van Assche. Web site. http://philosophicalcomment. blogspot.com.au/2014/02/legalised-euthanasia-for-children.html. Published February 15, 2014. Accessed January 28, 2015.
4 5. Carter BS. Why palliative care for children is preferable to Euthanasia[published online July 19, 2014]. Am J Hosp Palliat Med. 2014;1-3 pii: 1049909114542648. 6. Siegel AM, Sistel DA, Caplan AL. Pediatric Euthanasia in Belgium: disturbing developments. JAMA. 2014;311(19):1963-1964. 7. American Academy of Pediatrics. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007;119(2): 401-403. 8. Canterbury v. Spence. 464 F.2d 772 (D.C. Cir. 1972). 9. Web site. http://kff.org/medicaid/timeline/medicaid-a-timelineof-key-developments/. Published May 2, 2013. Accessed January 28, 2015. 10. Verhagen, AA Eduard. The Groningen Protocol for newborn euthanasia; which way did the slippery slope tilt? J Med Ethics. 2013;39(5):293-295. doi: 10.1136/medethics-2013-101402.
American Journal of Hospice & Palliative Medicine® 11. van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, et al. End-of-Life Practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007;356(19):1957-1965. 12. Web site. http://www.medicalnewstoday.com/articles/104629. php. Published April 18, 2008. Accessed January 28, 2015. 13. Smets T, Bilsen J, Cohen J, Rurup ML, Deliens L. Legal euthanasia in Belgium: characteristics of all reported euthanasia cases. Med Care. 2010;48(2):187-192. 14. Bilsen J, Cohen J, Chambaere K, et al. Medical end-of-life practices under the euthanasia law in Belgium. N Engl J Med. 2009; 361(11):1119-1121. 15. Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J. Development of Palliative Care and Legalisation of Euthanasia: antagonism or synergy? BMJ. 2008;336(7649): 864-867.
