The Dutch rules governing neonatal euthanasia, known as the Groningen Protocol, require parental consent for severely disabled infants with poor prognoses to have their lives terminated. This paper questions whether parental consent should be dispositive in such cases, and argues that the potential suffering of the neonate or pediatric patient should be the decisive factor under such unfortunate circumstances.

The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of age. This paper describes two opposite positions: the affirmative position of a pediatrician and expert in pediatric palliative care and the negative position of a jurist and specialist in health law.

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life—young or old—cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the minor (...) involved must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient’s assumable ability to choose death over an agonizing existence. (shrink)

Background:Attitudes of nurses towards death and related concepts influence end-of-life care. Determining nurses’ views and attitudes towards these concepts and the factors that affect them are necessary to ensure quality end-of-life care.Objectives:The purpose of this study was to determine nurses’ views and attitudes about death, dying patient, euthanasia and the relationships between nurses’ characteristics.Methods:Participants consist of the nurses who volunteered to take part in this descriptive study from 25 hospitals which has a paediatric or adult intensive care unit and (...) located within the boundaries of Ankara, Turkey. ‘Nurse Information Form’ and ‘Attitude Scale about Euthanasia, Death and Dying Patients ’ were used as data collection tool.Ethical consideration:Written permissions were received from the ‘Noninterventional Clinical Researches Ethics Board’ of authors’ university and education councils of each hospital. Informed consent was obtained from participants.Findings:It is found that there are statistically significant difference among the factors of marital status, having a child, years of experience, bereavement experience, affected by working with dying patient, definition of euthanasia, views about patients who are appropriate for euthanasia, views about patients who desire to die and feeling need for counselling on these concepts according to the mean total score of nurses’ attitudes about euthanasia, death and dying patient.Conclusion:The results indicate that nurses are negatively affected to face the concepts of death, euthanasia and work with dying patient. This is reflected in their attitude. In order to gain positive attitude towards death, dying patient and euthanasia, the implementation of training and consulting services to nurses at appropriate intervals during both education and professional life are required. (shrink)

Famous pediatric surgeon gives his views on death and euthanasia.

Why do so many doctors have profound misgivings about the push to legalise euthanasia and assisted suicide? Ole Hartling uses his background as a physician, university professor and former president of the Danish Council of Ethics to introduce new elements into what can often be understood as an all too simple debate. Alive to the case that assisted dying can be driven by an unattainable yearning for control, Hartling concentrates on two fundamental questions: whether the answer to suffering is (...) to remove the sufferer, and whether self-determination in dying and death is an illusion. He draws on his own experience as a medical doctor to personalize the ethical arguments, share patients' narratives and make references to medical literature. Here is a sceptical stance towards euthanasia, one that is respectful to those who hold different opinions and well-informed about the details and nuances of different euthanasia practices. Written from a Scandinavian perspective, where respect for autonomy and high quality palliative care go hand in hand, Hartling's is a nuanced, valuable contribution to the arguments that surround a question doctors have faced since the birth of medicine. He shows us how the intentions of doing something good can sometimes lead to even greater dilemmas, opening us up to those situations where an inclination to end suffering by ending life is deeply conflicting both for the clinician and for any fellow human being. (shrink)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, (...) and health policy discuss if age should guide rationing decisions. (shrink)

Presents arguments on both sides of the issue of euthanasia, including questions regarding ethics and legality, physician-assisted suicide, living wills, and removing life support from patients in a persistent vegetative state.

This article argues in favour of voluntary active euthanasia in human beings on the grounds that we (society in general) perform euthanasia on valued companion animals when their suffering is considered great. I argue that suffering is a morally relevant criterion that should be considered in all cases (human and animal) of euthanasia. I further argue that human beings possess autonomy, a morally relevant difference to companion animals, that allows them to reason about their futures in a (...) way that animals cannot, which gives us more reason to grant euthanasia, if requested autonomously by terminally ill patients who are experiencing extreme suffering. I consider objections around the sanctity of human life and sufficient palliation. I argue that neither of these objections give sufficient reason to deny competent human beings euthanasia if autonomously requested. (shrink)

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients (...) in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

Whether the law should permit voluntary euthanasia or physician-assisted suicide is one of the most vital questions facing all modern societies. Internationally, the main obstacle to legalisation has proved to be the objection that, even if they were morally acceptable in certain 'hard cases', voluntary euthanasia and physician-assisted suicide could not be effectively controlled; society would slide down a 'slippery slope' to the killing of patients who did not make a free and informed request, or for whom palliative (...) care would have offered an alternative. How cogent is this objection? This book provides the general reader with a lucid introduction to this central question in the debate, not least by reviewing the Dutch euthanasia experience. It will interest all in any country whether currently for or against legalisation, who wish to ensure that their opinions are better informed. (shrink)

Authorising euthanasia and assisted suicide with advance euthanasia directives is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer’s disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since (...) the 2002 Dutch euthanasia law was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs. (shrink)

Euthanasia has become the subject of ethical and political debate in many countries including Mexico. Since many physicians are deeply concerned about euthanasia, due to their crucial participation in its decision and implementation, it is important to know the psychological meaning that the term ‘euthanasia’ has for them, as well as their attitudes toward this practice. This study explores psychological meaning and attitudes toward euthanasia in 546 Mexican subjects, either medical students or physicians, who were divided (...) into three groups: a) beginning students, b) advanced students, and c) physicians. We used the semantic networks technique, which analyzed the words the participants associated with the term ‘euthanasia’. Positive psychological meaning, as well as positive attitudes, prevailed among advanced students and physicians when defining euthanasia, whereas both positive and negative psychological meaning together with more ambivalent attitudes toward euthanasia predominated in beginning students. The findings are discussed in the context of a current debate on a bill proposing active euthanasia in Mexico City. (shrink)

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children (...) with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

The return of individual research results to participants raises many socio-ethical issues and is even more challenging when the participant is a child. The objective of this article is to present an overview of the few ethical guidelines and relevant literature addressing the return of individual results in pediatric research. By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework.

As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent and is embroiled in numerous considerations.Extra caution is required in the pediatric (...) research context because children cannot generally decide whether they want to be informed of their own research results or whether the results should be disclosed to parents. Children have long been considered a special and vulnerable group, and their parents, as guardians, play a critical role in the consent process. However, with regards to the return of individual research results, this might pose a potential conflict of interest between the current or future desires of the child and those of the parents. (shrink)

Neuroimaging has provided insight into numerous neurological disorders in children, such as epilepsy and cerebral palsy. Many clinicians and investigators believe that neuroimaging holds great promise, especially in the areas of behavioral and cognitive disorders. However, concerns about the risks of various neuroimaging modalities and the potential for misinterpretation of imaging results are mounting. Imaging evaluations also raise questions about stigmatization, allocation of resources, and confidentiality. Children are particularly vulnerable in this milieu and require special attention with regards to safety (...) guidelines and modality adaptations. This article examines pediatric neuroimaging practice through an ethics lens. Most authors in the field of neuroethics focus on the future concerns of neuroimaging. In contrast, our paper examines ethical matters surrounding current clinical applications in the pediatric population. We first provide a brief overview of the neuroimaging technologies most commonly used in a pediatric clinical context and then discuss a variety of ethical issues arising from the use of these technologies. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

In this article we discuss the moral and legal aspects of causing the death of a terminal patient in the hope of extending their life in the future. We call this theoretical procedure cryothanasia. We argue that administering cryothanasia is ethically different from administering euthanasia. Consequently, objections to euthanasia should not apply to cryothanasia, and cryothanasia could also be considered a legal option where euthanasia is illegal.

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human (...) Subjects of Biomedical and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

Euthanasia and assisted suicide have proved to be very contentious topics in medical ethics. Some ethicists are particularly concerned that allowing physicians to carry out these procedures will undermine their professional obligations and threaten the very goals of medicine. However, I maintain that the fundamental goals of medicine not only do not preclude the practice of euthanasia and assisted suicide by physicians, but can in fact be seen to support these practices in some instances. I look at two (...) influential views of the goals of medicine, one based on the broad guiding principles of autonomy, beneficence and nonmaleficence, and the other focusing on several more concrete aims, concluding that both approaches can be seen to support euthanasia and assisted suicide. I then turn to the popular concern that allowing physicians to carry out euthanasia and assisted suicide will lead to widespread abuse. I argue that the possibility for abuse can be minimised if we make the patient's autonomous consent an essential requirement of the practice. (shrink)

Background Euthanasia is a controversial practice in many countries. Since Spain’s Euthanasia Law came into effect on March 24, 2021, healthcare providers have faced a new challenge since they must inform patients, provide care, accompany them, and implement the law. It also represents a new stumbling block at universities, which must adapt to regulatory changes and educate future professionals accordingly. Little is known about the attitude of nursing students in Spain toward euthanasia since this law was implemented. (...) Objective This study aims to answer the following research questions: What is the attitude of nursing students toward euthanasia? What factors influence this attitude? Research design A cross-sectional study was conducted using an online questionnaire. Participants and research context The study population comprised all nursing students at a public university in Barcelona ( n = 444), Spain, during the 2022–2023 academic year. The validated Spanish version of the Euthanasia Attitude Scale was employed. A bivariate analysis was performed. Ethical considerations The university Ethics Committee (CEEAH 6247) approved this study. All participating students signed an informed consent form. Participation was voluntary, and data anonymity and confidentiality were guaranteed. Results Two hundred and forty-four nursing students responded to the questionnaire. The mean total score was 79.64. Participants with religious beliefs presented lower scores, indicating a more negative attitude toward euthanasia. Participants in their second, third, or fourth year of the nursing degree scored higher, demonstrating a more positive attitude. Conclusions The attitude of nursing students toward euthanasia was remarkably positive. Working on ethical content during the degree course and clinical practice are factors that help to develop a more positive attitude. In addition, nursing education should encourage professional aspects to prevail over religious beliefs in euthanasia situations. (shrink)

Essays discuss euthanasia and the medical, legal, and ethical controversies surrounding it.

Belgium has recently extended its euthanasia legislation to minors, making it the first legislation in the world that does not specify any age limit. I consider two strands in the opposition to this legislation. First, I identify five arguments in the public debate to the effect that euthanasia for minors is somehow worse than euthanasia for adults—viz. arguments from weightiness, capability of discernment, pressure, sensitivity and sufficient palliative care—and show that these arguments are wanting. Second, there is (...) another position in the public debate that wishes to keep the current age restriction on the books and have ethics boards exercise discretion in euthanasia decisions for minors. I interpret this position on the background of Velleman’s “Against the Right to Die” and show that, although costs remain substantial, it actually can provide some qualified support against extending euthanasia legislation to minors. (shrink)

More than 20 years ago, the pioneering pediatric ethicist William Bartholome wrote a fiery letter to the editor of this journal because he thought a recently published statement on pediatric assent, from the Committee on Bioethics of the American Academy of Pediatrics (AAP), showed insufficient respect for children. That AAP statement, like its 2016 update, asserts that pediatric assent should be solicited only when a child’s dissent will be honored. Bartholome objected that pediatricians should always solicit children’s (...) assent and that they should acknowledge and apologize when they treat children over their objections even when they must do so to promote children’s best interests. We think Bartholome was right. In this brief commentary, we elaborate on his perspective about the moral value of pediatric assent, and we suggest improvements to the corresponding clinical guidance. (shrink)

The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the “right to die”, emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in (...) which they deal with these issues. The paper thus seeks to understand how requests for the “right to die” emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual’s autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate. (shrink)

Margaret Otlowski investigates the complex and controversial issue of active voluntary euthanasia. She critically examines the criminal law prohibition of medically administered active voluntary euthanasia in common law jurisdictions, and carefully looks at the situation as handled in practice. The evidence of patient demands for active euthanasia and the willingness of some doctors to respond to patients' requests is explored, and an argument for reform of the law is made with reference to the position in the Netherlands (...) (where active voluntary euthanasia is now openly practiced). (shrink)

Euthanasia has become the subject of ethical and political debate in many countries including Mexico. Since many physicians are deeply concerned about euthanasia, due to their crucial participation in its decision and implementation, it is important to know the psychological meaning that the term ‘euthanasia’ has for them, as well as their attitudes toward this practice. This study explores psychological meaning and attitudes toward euthanasia in 546 Mexican subjects, either medical students or physicians, who were divided (...) into three groups: a) beginning students, b) advanced students, and c) physicians. We used the semantic networks technique, which analyzed the words the participants associated with the term ‘euthanasia’. Positive psychological meaning, as well as positive attitudes, prevailed among advanced students and physicians when defining euthanasia, whereas both positive and negative psychological meaning together with more ambivalent attitudes toward euthanasia predominated in beginning students. The findings are discussed in the context of a current debate on a bill proposing active euthanasia in Mexico City. (shrink)

One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability (...) is a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS. (shrink)

Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, crosssectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had (...) performed an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency. (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

Argues that considerations central to the justification of euthanizing humans do not readily extrapolate to the euthanasia of pets and companion animals; that the comparative account of death's badness can be successfully applied to such animals to ground the justification of their euthanasia and its timing; and proposes that companion animal guardians have authority to decide to euthanize such animals because of their epistemic standing regarding such animals' welfare.

The growing support for voluntary active euthanasia is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over the last several years. The proponents of VAE argue that when a patient judges that the burdens of living outweigh the benefits, euthanasia can be justified. If some adults suffer to such an extent that VAE is justified, then (...) one may conclude that some children suffer to this extent as well. In an attempt to alleviate the suffering of extremely ill neonates, the University Medical Center Groningen developed a protocol for neonatal euthanasia. In this article, I first present the ethical justifications for VAE and discuss how these arguments relate to euthanizing ill neonates. I then argue that, even if one accepts the justification for VAE in adults, neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children. I argue that without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child’s life, and therefore any such system would condemn to death some children whose suffering is not unbearable. I conclude that because the primary duty of physicians is to never harm their patients, neonatal euthanasia cannot be supported. (shrink)

In a recent article, Henri Wijsbek discusses the 1991 Chabot “psychiatric euthanasia” case in the Netherlands, and argues that Chabot was justified in helping his patient to die. Dutch legislation at the time permitted physician assisted suicide when the patient’s condition is severe, hopeless, and unbearable. The Dutch Supreme Court agreed with Chabot that the patient met these criteria because of her justified depression, even though she was somatically healthy. Wijsbek argues that in this case, the patient’s integrity had (...) been undermined by recent events, and that this is the basis for taking her request seriously; it was unreasonable to expect that she could start again. In this paper, I do not challenge the Dutch euthanasia criteria in the case of somatic illness, but I argue that both Chabot and Wijsbek are wrong because we can never be sufficiently confident in cases of severe exogenous depression to assist the patient in her irreversible act. This is partly because of the essential difference between somatic and mental illness, and because of the possibility of therapy and other help. In addition, I argue that Wijsbek’s concept of integrity cannot do the work that he expects of it. Finally, I consider a 2011 position paper from the Royal Dutch Medical Association on euthanasia, and the implications it might have for Chabot-style cases in the future. (shrink)

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the (...) prohibition of consensual homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia. (shrink)

This paper re-evaluates euthanasia and assisted suicide from the perspective of eudaimonia, the ancient Greek conception of happiness across one’s whole life. It is argued that one cannot be said to have fully flourished or had a truly happy life if one’s death is preceded by a period of unbearable pain or suffering that one cannot avoid without assistance in ending one’s life. While death is to be accepted as part of life, it should not be left to nature (...) to dictate the way we die, and it is fundamentally unjust to grant people liberal latitude in how they live their lives while granting them little control over the conclusion of their life narratives. Three objections to this position are considered and rejected; the paper also offers an explanation of why we think killing can be a benefit. Ultimately, euthanasia may be necessary in some cases in order to achieve eudaimonia. (shrink)

Definition of the problem: Concerning the debate on euthanasia, a widely held position is that it should be accepted in its so-called passive and indirect form, while so-called active euthanasia should be rejected. The problem, now, is that at least some of the usual arguments to defend this view are invalid. Arguments: Three kinds of failures are examinded: First, if taken seriously, some of the arguments against active euthanasia undermine the accepted passive and indirect forms, too. For (...) example, this is the case concerning the claim that the patient's decision can be manipulated. Second, the rejection of active euthanasia partly rests on empirical data unsuited for this task. Euthanasia in The Netherlands as evidence for the so-called slippery slopes is presented as an example. Third, some of the objections against active euthanasia rest on assumptions that contradict our empirical knowledge, e.g. in the field of motives of patients asking for euthanasia. Conclusion: Those who want to defend the view mentioned above have to present more conclusive arguments. (shrink)

This paper considers the problems that arise when death, which is a philosophically difficult concept, is incorporated into healthcare metrics, such as the quality-adjusted life year (QALY). These problems relate closely to the debate over euthanasia and assisted suicide because negative QALY scores can be taken to mean that patients would be ‘better off dead’. There is confusion in the literature about the meaning of 0 QALY, which is supposed to act as an ‘anchor’ for the surveyed preferences on (...) which QALYs are based. In the context of the debate over euthanasia, the QALY assumes an ability to make meaningful comparisons between life-states and death. Not only is this assumption questionable, but the ethical debate is much more broad than the question of whether death is preferable to a state of living. QALYs are derived from preferences about health states, so do not necessarily reflect preferences about events (eg, dying) or actions (eg, killing). This paper presents a new kind of problem for the QALY. As it stands, the QALY provides confused and unreliable information when it reports zero or negative values, and faces further problems when it appears to recommend death. This should preclude its use in the debate over euthanasia and assisted suicide. These problems only apply where the QALY involves or seems to involve a comparison between life-states and death, and are not relevant to the more general discussion of the use of QALYs as a tool for comparing the benefits derived from treatment options. (shrink)

This narrative symposium brings to light the extreme difficulties faced by parents of children diagnosed with brain tumors. NIB editorial staff and narrative symposium editors, Gigi McMillan and Christy A. Rentmeester, developed a call for stories that was distributed on several list serves and posted on Narrative Inquiry in Bioethics’ website. The call asks parents to share their personal experience of diagnosis, treatment, long–term effects of treatment, social issues and the doctor–patient–parent dynamic that develops during this process. Thirteen stories are (...) found in the print version of the journal and an additional six supplemental stories are published online only through Project MUSE. One change readers may notice is that the story authors are not listed in alphabetical order. The symposium editors had a vision for this issue that included leading readers through the timeline of this topic: diagnosis–treatment–acute recovery–recurrence–treatment (again)– acute recovery (again)– long-term quality of life– (possibly) end of life. Stories are arranged to help lead the reader through this timeline. Gigi McMillan is a patient and research subject advocate, co-founder of We Can, Pediatric Brain Tumor Network, as well as, the mother of a child who suffered from a pediatric brain tumor. She also authored the introduction for this symposium. Christy Rentmeester is an Associate Professor of Health Policy and Ethics in the Creighton University School of Medicine. She served as a commentator for this issue. Other commentators for this issue are Michael Barraza, a clinical psychologist and board member of We Can, Pediatric Brain Tumor Network ; Lisa Stern, a pediatrician who has diagnosed six children with brain tumors in her 20 years of practice; and Katie Rose, a pediatric brain tumor patient who shares her special insights about this world. (shrink)

Brain-computer interfaces (BCIs) are being investigated as an access pathway to communication for individuals with physical disabilities, as the technology obviates the need for voluntary motor control. However, to date, minimal research has investigated the use of BCIs for children. Traditional BCI communication paradigms may be suboptimal given that children with physical disabilities may face delays in cognitive development and acquisition of literacy skills. Instead, in this study we explored emotional state as an alternative access pathway to communication. We developed (...) a pediatric BCI to identify positive and negative emotional states from changes in hemodynamic activity of the prefrontal cortex (PFC). To train and test the BCI, 10 neurotypical children aged 8–14 underwent a series of emotion-induction trials over four experimental sessions (one offline, three online) while their brain activity was measured with functional near-infrared spectroscopy (fNIRS). Visual neurofeedback was used to assist participants in regulating their emotional states and modulating their hemodynamic activity in response to the affective stimuli. Child-specific linear discriminant classifiers were trained on cumulatively available data from previous sessions and adaptively updated throughout each session. Average online valence classification exceeded chance across participants by the last two online sessions (with 7 and 8 of the 10 participants performing better than chance, respectively, in Sessions 3 and 4). There was a small significant positive correlation with online BCI performance and age, suggesting older participants were more successful at regulating their emotional state and/or brain activity. Variability was seen across participants in regards to BCI performance, hemodynamic response, and discriminatory features and channels. Retrospective offline analyses yielded accuracies comparable to those reported in adult affective BCI studies using fNIRS. Affective fNIRS-BCIs appear to be feasible for school-aged children, but to further gauge the practical potential of this type of BCI, replication with more training sessions, larger sample sizes, and end-users with disabilities is necessary. (shrink)

What process ought to guide decision making for pediatric patients? The prevailing view is that decision making should be informed and guided by the best interest of the child. A widely discussed structural model proposed by Buchanan and Brock focuses on parents as surrogate decision makers and examines best interests as guiding and/or intervention principles. Working from two recent articles by Ross on “constrained parental autonomy” in pediatric decision making (which is grounded in the Buchanan and Brock model), (...) I discuss (supportively) features of Ross’s effort visa-vis the best interest standard. I argue that any pediatric decision-making model that brackets or formally limits an engagement with the child patient assumes too much. Further, any model that under appreciates the place of parents and their autonomy, and the dynamic parent-child relationship, misses an opportunity to broaden the clinical encounter by considering questions of justice for the child (Rawls) and within a family (Ross). In this context, I focus on the child’s emerging and ongoing emotional and intellectual development and autonomy—their capabilities and identifying primary goods. (shrink)

Can Covid-19 vaccines be used off-label? Should they be? These were questions on the minds of parents, pediatricians, and the media when the FDA fully approved the Pfizer-BioNTech Covid-19 vaccine for people aged 16 and up. Yet the American Academy of Pediatrics cautioned against pediatric off-label use of the vaccine, and the CDC Covid-19 Vaccine Provider Agreement appears to prohibit it. After briefly contextualizing ethical and legal precedents regarding off-label use, we offer an analysis of the ethical permissibility of (...) and considerations for pediatric off-label Covid-19 vaccination based on individual benefits, risks, and available alternatives. Our analysis challenges the ethics of a blanket prohibition on off-label pediatric Covid-19 vaccination, as it limits clinician ability to provide care they may determine to be clinically and ethically appropriate. At the same time, our analysis acknowledges that Covid-19 creates population-level ethical considerations that are at times in tension with individual health interests. (shrink)

In 2011, Frank Van Den Bleeken became the first detainee to request euthanasia under Belgium’s Euthanasia Act of 2002. This article investigates whether it would be lawful and morally permissible for a doctor to accede to this request. Though Van Den Bleeken has not been held accountable for the crimes he committed, he has been detained in an ordinary prison, without appropriate psychiatric care, for more than 30 years. It is first established that VDB’s euthanasia request plausibly (...) meets the relevant conditions of the Euthanasia Act and that, consequently, a doctor could lawfully fulfill it. Next, it is argued that autonomy-based reasons for euthanizing VDB outweigh complicity-based reasons against doing so, and that, therefore, it is also morally permissible for a doctor to carry out the euthanasia request. (shrink)

Machine generated contents note: Table of Cases xi -- Table of legislation xv -- Introduction: Medicine Men, Outlaws and Voluntary Euthanasia 1 -- 1. To Kill or not to Kill; is that the Euthanasia Question? 9 -- Introduction-Why Euthanasia? 9 -- Dead or alive? 16 -- Euthanasia as Homicide 25 -- Euthanasia as Death with Dignity 29 -- 2. Euthanasia and Clinically assisted Death: from Caring to Killing? 35 -- Introduction 35 -- The Indefinite (...) Continuation of Palliative Treatment 38 -- Withholding or Withdrawing Treatment 44 -- The Principle of Double Effect 54 -- Physician Assisted Suicide 60 -- Mercy Killing 64 -- Conclusions 66 -- 3. Consent to Treatment but Not to Death 69 -- Introduction-Why Consent? 69 -- Without Consent 70 -- Killing and Consent 73 -- Valid Consent, Freely Given? 74 -- Old Enough to Consent 80 -- Deciding for Others 82 -- Conclusions-A Consent Too Far? 93 -- 4. Autonomy, Self-determination and Self-destruction 95 -- Introduction-Autonomous Choices 95 -- Choosing to Die-Suicide and Autonomy 100 -- Suicidal Intentions 107 -- Autonomous Clinical Discretion 110 -- Deciding to Live or Die-Whose Decision? 112 -- 5. Living Wills and the Will to Die 115 -- Introduction 115 -- I Know My Will 118 -- This is My Will 121 -- I Will Decide 128 -- Will My Will be Done? 134 -- Where There's a Will 137 -- Conclusions 143 -- 6. Is Euthanasia a Dignified Death? 145 -- Introduction-Why Dignity? 145 -- Needing Dignity 146 -- Finding Dignity 149 -- Achieving Dignity in Dying 151 -- Dignifying Death 157 -- 7. Conclusions: Dignified Life, Dignified Death and Dignified Law 165 -- Select Bibliography 175 -- Index 183. (shrink)

The paper classifies euthanasia and discusses its typological presence in storytelling video games. It aims to illustrate the importance of experiencing simulated moral challenges in the context of gameworlds as a significantly influential, exponentially growing form of interactive media. In contrast to older works of art and media, such as film and literature, the difference should be emphasized in light of the player’s ability to make choices in video games. Although the influence of gameworld content depends on the player, (...) the experiences and knowledge gained from playing storytelling video games may influence the player’s problem-solving orientation in the landscape of difficult moral dilemmas they may encounter throughout their lives. (shrink)