Despite the central place of suffering in medical care, suffering in infants and nonverbal children remains poorly defined. There are epistemic problems in the detection and treatment of suffering in infants and normative problems in determining what is in their best interests. A lack of agreement on definitions of infant suffering leads to misunderstanding, mistrust, and even conflict amongst clinicians and parents. It also allows biases around intensive care and disability to affect medical decision-making on behalf of infants. In this (...) paper, I propose the concept of suffering pluralism, which is a novel multidimensional view of infant suffering based on subjective and objective components. The concept of suffering pluralism is more inclusive of the multiple ways in which infant suffering can occur. It acknowledges and defines a subjective component to infant suffering, while also focusing moral attention on objective well-being by describing it using the language of suffering. This concept allows us to better weigh up subjective and objective components of well-being. It also encourages clarity and consistency in claiming suffering, which is likely to improve communication and reduce conflict in medical decision-making for unwell infants and children. I will end by exploring possible critiques and limitations of this concept. (shrink)

In The Netherlands, neonatal euthanasia has become a legal option and the Groningen Protocol contains an approach to identify situations in which neonatal euthanasia might be appropriate. In the 5 years following the publication of the protocol, neither the prediction that this would be the first step on a slippery slope, nor the prediction of complete transparency and legal control became true. Instead, we experienced a transformation of the healthcare system after antenatal screening policy became a part of antenatal care. (...) This resulted in increased terminations of pregnancy and less euthanasia. (shrink)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

The Groningen Protocol, introduced in the Netherlands in 2005 and accompanied by revised guidelines published in a report commissioned by the Royal Dutch Medical Association in 2014, specifies conditions under which the lives of severely ill newborns may be deliberately ended. Its publication came four years after the Netherlands became the first nation to legalize the voluntary active euthanasia of adults, and the Netherlands remains the only country to offer a pathway to protecting physicians who might engage in deliberately ending (...) the life of a newborn. In this paper, I offer two lines of argument. The first is a positive argument for the Protocol, grounded in the good of the newborn as unanimously determined by those in a position to determine it. The second addresses the widely shared belief that the killing of newborns is morally prohibited, where I offer two arguments—one grounded in the fact that the kinds of cases the Protocol is meant to govern are very rare and highly unusual, and the other focused more broadly on the role of pre-theoretical beliefs in moral reasoning—meant to undermine the strong role that the critic of the Protocol affords this belief. I argue that, given this second line of argument, the beliefs underlying my positive argument for the Protocol are in fact more secure than the widely shared belief underlying the critic’s position. (shrink)

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life (...) experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre’s Dependent Rational Animals to argue that child suffering can be understood only as a set of absences—absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish. (shrink)

This paper builds on the work of Tuffrey-Wijne et al. and explores the issue of vulnerability and persons with disabilities in relation to Euthnasia and Assisted Dying. The commentary draws on both the literature and on case examples from Canada. Specifically, it considers the issue of EAS as an alternative to, or substituted for, appropriate disability supports. Secondly, it considers the issue of the devaluation of disabled lives in general and within health care practice and ethics. It concludes that current (...) safeguards are inadequate and that as EAS regimes become more permissive the risk to disabled persons will increase. (shrink)

The adamant and uniform pro-choice viewpoints expressed in each of the target articles demonstrates how mainstream bioethics has become a homogeneous and insular advocacy movement that seeks to ins...

Following considerable debate, the practice of euthanasia was legalized in Belgium in 2002, thereby making Belgium one of the few places in the world where this practice is legal. In 2014 the law was amended for the first time. The 2014 amendment makes euthanasia legally possible for all minors who repeatedly and voluntarily request euthanasia and who are judged to possess “capacity of discernment”, as well as fulfil a number of other criteria of due care. This extension of the 2002 (...) euthanasia law generated a lot of national and international debate and has been applauded by many and heavily criticized by others. This evolution is clearly of interest to end-of-life debates in the entire world. This paper will therefore describe how this amendment came to get passed using official documents from Belgium's Senate and Chamber of Representatives where this amendment was discussed and subsequently passed. Next, some of the most commonly given arguments in favour of the law are identified, as well as the arguments most often voiced against the amendment. All these arguments will be expanded upon and it will be examined whether they hold up to ethical scrutiny. Analysing the official documents and identifying the most commonly voiced arguments gives valuable insight into how Belgium came to amend its euthanasia law and why it did so in 2014. It also becomes clear that although the current amendment is often seen as far-reaching, more radical ideas were proposed during the drafting of the law. Also, in analysing those arguments in favour of the amendment and those against, it is clear that the validity of some of these is questionable. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised all four (...) government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (shrink)

American bioethicists lack the theoretical resources to work in cross‐cultural settings. All we have are two approaches to ethics—principles vs. narratives—that are mostly at odds, and neither of which is up to the job. If moral principles are too abstract to be useful, and if stories cannot provide moral authority, then where do we find our moral norms?

Spina bifida is a neurodevelopmental disorder that results in a broad range of disability. Over the last few decades, there have been significant advances in diagnosis and treatment of this condition, which have raised concerns regarding how clinicians prognosticate the extent of disability, determine quality of life, and use that information to make treatment recommendations. From the selective treatment of neonates in the 1970s, to the advent of maternal–fetal surgery today, the issues that have been raised surrounding spina bifida intervention (...) invoke principles of medical bioethics such as beneficence and nonmaleficence, while also highlighting how quality of life judgments may drive care decisions. Such changes in treatment norms are also illustrative of how disability is viewed both within the medical community and by society at large. An examination of the changes in spina bifida treatment provides a model through which to understand how ethically complex decisions regarding care for children with disabilities has evolved, and the challenges faced when medical information is combined with value-based judgments to guide medical decision making. (shrink)

Aim To examine the hypothesis that knowledge about physician-assisted suicide (PAS) and euthanasia is associated with a more restrictive attitude towards PAS. Design A questionnaire about attitudes towards PAS, including prioritisation of arguments pro and contra, was sent to Swedish veterinary surgeons. The results were compared with those from similar surveys of attitudes among the general public and physicians. Participants All veterinary surgeons who were members of the Swedish Veterinary Association and had provided an email address (n=2421). Main outcome measures (...) Similarities or differences in response pattern between veterinary surgeons, physicians and the general public. Results The response pattern among veterinary surgeons and the general public was almost similar in all relevant aspects. Of the veterinarians 75% (95% CI 72% to 78%) were in favour of PAS, compared with 73% (95% CI 69% to 77%) among the general public. Only 10% (95% CI 5% to 15%) of the veterinary surgeons were against PAS, compared with 12% (95% CI 5% to 19%) among the general public. Finally, 15% (95% CI 10% to 21%) of veterinarians were undecided, compared with 15% (95% CI 8% to 22%) among the general public. Physicians had a more restrictive attitude to PAS than the general public. Conclusions Since veterinary surgeons have frequent practical experience of euthanasia in animals, they do have knowledge about what euthanasia really is. Veterinary surgeons and the general public had an almost similar response pattern. Accordingly it seems difficult to maintain that knowledge about euthanasia is unambiguously associated with a restrictive attitude towards PAS. (shrink)

The Groningen Protocol and contemporary defences of the legalisation of infanticide are predicated on actualism and personism. According to these related ideas, human beings achieve their moral status in virtue of the degree to which they are capable of laying value upon their lives or exhibiting certain qualities, like not being in pain or being desirable to third party family members. This article challenges these notions suggesting that both ideas depend on arbitrary and discriminatory notions of human moral status. Our (...) propensity to sleep, fall unconscious, pass out and so on, demonstrates that we very often exhibit our status as “potential persons.” Our abilities can and do fluctuate. The equal dignity principle, distinguished in turn from both the excesses of vitalism and consequentialism, is analyzed in the context of human rights logic and law. The normalization of non-voluntary euthanasia, via such ad hoc practices as the Groningen Protocol is considered. Substituted ‘consent’ to the euthanasia of infants or others, is scrutinized and the implications of institutionalizing non-voluntary euthanasia in the context of financial, research and political interests are considered. The impact on the medical and legal professions, carers, families and coroners, as well as public attitudes more generally, is discussed. It is suggested that eroding the value of human life carries with it significant destructive and hazardous long-term implications for societies. To elevate some long-term implications whilst ignoring others demonstrates the irrational nature of the effort to institutionalize euthanasia. (shrink)

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)

There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (shrink)

The Groningen Protocol allows active euthanasia of severely ill newborns with unbearable suffering. Defenders of the protocol insist that the protocol refers to terminally ill infants and that quality of life should not be a factor in the decision to euthanize an infant. They also argue that there should be no ethical difference between active and passive euthanasia of these infants. However, nowhere in the protocol does it refer to terminally ill infants; on the contrary, the developers of the protocol (...) take into account the future quality of life of the infant. We also note how the Nazi Euthanasie Programm started with the premise that there is some life not worthy of living. Therefore, in our opinion, the protocol violates the traditional ethical codes of physicians and the moral values of the overwhelming majority of the citizens of the world. (shrink)

Jotkowitz, Glick, and Gesundheit (2008) rightly critique Manninen (2006) for an errant analysis of the Groningen protocol. However, they draw conclusions about the protocol itself that are not justified. Because of the nature of the care of infants, the Groningen protocol doesn't break new ethical ground. We already have to treat infants without direct access to their autonomous preferences or values; therefore, we are already making the decisions that Jotkowitz, Glick, and Gesundheit argue we are beginning to take once active (...) euthanasia of infants is allowed. (shrink)

La réanimation néonatale donne lieu à une demande publique et institutionnelle d'élaboration de normes, appelée par les dilemmes éthiques, induits par la pratique d'arrêt de vie ou de non réanimation. Ces dilemmes sont pratiquement levés par une référence aux « grands principes » qui régissent généralement la pratique médicale (dignité humaine, droit à la vie, droit à l'autonomie, obligation de soins, principe de non nuisance) ainsi que par l'exigence de suivre, pour procéder aux arrêts de vie, une « démarche transparente (...) et progressive », incluant une dimension délibérative. Dans la mesure où, en dépit de ces conditions, des désaccords éthiques légitimes demeurent et s'avèrent à l'analyse insolubles, il paraît nécessaire d'institutionnaliser ces désaccords afin de permettre aux personnes de « vivre ensemble » et de « travailler ensemble », en dépit de leurs divergences éthiques, toutes fondées sur de « bonnes raisons » morales. (shrink)

The Groningen Protocol aims at providing guidance in end-of-life decision-making for severely impaired newborns. Since its publication in 2005 many bioethicists and health care professionals have written articles in response. However, only very little is known about the opinion among the general population on this subject. The aim of this study was to present the general attitude towards neonatal euthanasia (NE) among the Austrian population and the factors associated with the respondents’ opinion.

Abortion is largely accepted even for reasons that do not have anything to do with the fetus' health. By showing that (1) both fetuses and newborns do not have the same moral status as actual persons, (2) the fact that both are potential persons is morally irrelevant and (3) adoption is not always in the best interest of actual people, the authors argue that what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion (...) is, including cases where the newborn is not disabled. (shrink)

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

Next SectionObjectives A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. Setting and design The study was carried out in the same two NICU as in (...) the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. Results Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. Conclusion Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries. (shrink)

BackgroundMultidisciplinary study groups have produced documents in an attempt to support decisions regarding whether to resuscitate "at risk" newborns or not. Moreover, there has been an increasingly insistent request for juridical regulation of neonatal resuscitation practices as well as for clarification of the role of parents in decisions regarding this kind of assistance. The crux of the matter is whether strict guidelines, reference standards based on the parameter of gestational age and authority rules are necessary.DiscussionThe Italian scenario reflects the current (...) animated debate, illustrating the difficulty intrinsic in rigid guidelines on the subject, especially when gestational age is taken as a reference parameter for the medical decision.SummaryConcerning the decision to interrupt or not to initiate resuscitation procedures on low gestational age newborns, physicians do not need rigid rules based on inflexible gestational age and birth weight guidelines. Guidance in addressing the difficult and trying issues associated with infants born at the margins of viability with a realistic assessment of the infant's clinical condition must be based on the infant's best interests, with clinicians and parents entering into what has been described as a "partnership of care". (shrink)

In an era in which certain arenas of scientific research have become increasingly controversial, this article critically evaluates what it means to “believe in science.” Many scientists today seem to claim a sovereign right to no political interference under the rubric of freedom. This article questions such a notion, and explores the dominance of science and the silencing of moral voices by undertaking two brief investigations—the first into National Socialist Germany, which insisted that it was defined by “applied biology,” and (...) the second into the world of contemporary American biomedicine. When all ethical barriers are eradicated, it seems that a will to power takes over—manifested in Nazi Germany’s vaunted scientific autonomy. In light of these sobering historical examples, this article reminds the reader that members of the public, including physicians, rightly deliberate about how to conscientiously order their lives together, and that part of that instrinsically political deliberation is to set limits to the ways medical science is applied and what scientists may do in pursuit of their goals. (shrink)

This paper critically explores key aspects of the gulf between traditional Christian bioethics and the secular moral reflections that dominate contemporary bioethics. For example, in contrast to traditional Christian morality, the established secular bioethics judges extramarital sex acts among consenting persons, whether of the same or different sexes, as at least morally permissible, affirms sexual freedom for children to develop their own sexual identity, and holds the easy availability of abortion and infanticide as central to the liberty interests of women. (...) Secular bioethics seeks to separate children from the authority of their parents, placing children themselves as in authority to make their own judgments about appropriate lifestyle choices, including sexual behaviors. As I argue, however, absent God, there exists no standpoint outside of our own cultural sociohistorically conditioned understanding from which to communicate any deeper perspective of reality or the bioethics that such a perspective would secure. Consequently, rather than discerning moral truth, secular bioethics merely affirms its own particular cultural sociohistorically conditioned ideological perspective. It is a social and political worldview bereft of definitive moral foundation, independent moral authority, or unambiguous content. (shrink)

Background End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. Methods A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and (...) sixty two out of 260 eligible physicians answered anonymously the questionnaire. Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach. Results Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score were more likely to limit, while those with a low score were more likely for continuation of intensive care. Physicians’ educational level, involvement in research, religion and position on the existing legal framework were factors that affected the attitude score. Conclusions Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform. (shrink)

Introduction In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15–20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of (...) the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed. (shrink)

I offer a principled objection to arguments in favour of legalizing non-voluntary euthanasia on the basis of the principle of beneficence. The objection is that the status of death as a benefit to people who cannot formulate a desire to die is more problematic than pain management care. I ground this objection on epistemic and political arguments. Namely, I argue that death is relatively more unknowable, and the benefits it confers more subjectively debatable, than pain management. I am not primarily (...) referring to the claim that it is difficult to make comparisons between live and post-mortem states, but rather to the fact that it is epistemically and metaphysically problematic to impute a “life-worse-than-death” or a state of “suffering-calling-for-death” to people who cannot subjectively wish to die, as though this kind of suffering were a medically observable fact rather than a belief- and value-laden notion. On the contrary, people enduring similar causes of pain may have different experiences of suffering and views on how it affects the worthwhileness of their existence or the desirability of death or of continuing their lives. The projection of a “suffering-calling-for-death” onto infants or people with severe intellectual disabilities may not be indefensible, but it is more controversial than judging that pain management will improve their well-being from the perspective of beneficence. My argument also relies on our society’s liberal endeavour to avoid endorsing unverifiable beliefs about life and death or controversial conceptions of the good life. My goal is not to suggest we should not attend the suffering of cognitively disabled people. On the contrary, I only cast doubt on too quick an assumption that ending their lives is the best way of caring for them, when robust palliative treatments are available. Moreover, I express the concern that a lack of attention to distinctions between “pain-calling-for-relief” and “suffering-calling-for-death” may be based on ableist projections and assumptions. I conclude that it is imperative to continue research into the nature of pain and suffering experienced by individuals with mental or cognitive impairments preventing them from expressing autonomous wishes about the kind of treatment that would most benefit them. (shrink)

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 Groningen protocol allows for the euthanasia of severely ill newborns with a hopeless prognosis and unbearable suffering. We understand the impetus for such a protocol but have moral and ethical concerns with it. Advocates for euthanasia in adults have relied on the concept of human autonomy, which is lacking in the case of infants. In addition, biases can potentially influence the decision making of both parents and physicians. It is also very difficult to weigh the element of quality of (...) life on the will to live. We feel an important line has been crossed if the international medical community consents to the active euthanasia of severely ill infants and are concerned about the extension of the policy to other at risk groups. (shrink)