Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a child9s interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with acquired (...) brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team. (shrink)

The medical humanities are often implemented in the undergraduate medicine curriculum through injection of discrete option courses as compensation for an overdose of science. The medical humanities may be reformulated as process and perspective, rather than content, where the curriculum is viewed as an aesthetic text and learning as aesthetic and ethical identity formation. This article suggests that a “humanities” perspective may be inherent to the life sciences required for study of medicine. The medical humanities emerge as a revelation of (...) value inherent to an aesthetic medicine taught and learned imaginatively. (shrink)

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents’ wishes and the infant’s best interests could arise if consent for a recommended intervention were refused, (...) and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package. (shrink)

The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. The (...) comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

Active ending of the life of a newborn baby is a crime. Yet its clandestine practise is a reality in several European countries. In this paper, we defend the necessity to institute a proper legal frame for what we define as active neonatal euthanasia. The only legal attempt so far, the Dutch Groningen protocol, is not satisfactory. We critically analyse this protocol, as well as several other clinical practises and philosophical stances. Furthermore, we have tried to integrate our opinions as (...) clinicians into a law project, with the purpose of pinpointing several issues, specific of perinatality that should be addressed by such a law. In conclusion, we argue that the legalisation of neonatal euthanasia under exceptional circumstances is the only way to avoid all the “well-intentioned” malpractices associated with ending life at the very dawn of it. (shrink)

This paper examines parents experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their (...) child than American parents. Central to the French parents perception of autonomy and their sense of satisfaction were the strong doctor–patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents perspective, the lack of emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices. (shrink)

The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey (...) findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2 In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of two commentators that the presence or absence of “relational potential” might be ethically important to report in studies of the outcome of severely impaired infants,3 and to whether parental requests for treatment should be supported.4 The notion of “relational potential” was introduced by John Arras in a 1984 commentary.5 Arras was responding to the Baby Doe Regulations and a …. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continueorwithdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy and beneficence. To overrule one principle in favour (...) of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified. (shrink)

Background: Studies from Western countries show that doctors working in neonatal intensive care units find withdrawal of treatment to be their most difficult ethical dilemma. There is less knowledge of how this is experienced in other economic, cultural, religious and educational contexts.Objectives: To explore and describe how Indian doctors experience ethical dilemmas concerning the withdrawal of treatment among critically sick and/or premature neonates.Method: Qualitative data from interviews was analysed according to Giorgi's phenomenological approach. The subjects were 14 doctors with various (...) levels of neonatal experience, recruited from two state‐owned NICUs in India. Main outcome measures: description reflecting the nature of ethical dilemmas and how they are experienced.Results: All doctors reported situations where the question of withdrawal of treatment was experienced as the worst part of their job. They felt that they lacked training in how to handle such dilemmas, and some had never talked about ethics before. They were especially concerned about non‐medical considerations that do not feature in current treatment guidelines. In describing their personal experiences, the informants mentioned their sense of responsibility in situations where they were aware that their decisions would influence a family's economy and reputation, availability of food and education for siblings, other children's access to equipment in the unit, and the use of resources in an underprivileged population. Sometimes lack of resources, usually ventilators, forced them to make decisions about which babies should get the chance to live. Other reported dilemmas included difficulties co‐operating with uneducated and poor parents.Conclusion: While Western doctors seem to focus on the rights and problems of the individual child, Indian doctors tend to refer to consequences for other children, for parents and society. There is a need for further research in this field, and for the development of guidelines on how to cope with differences in resources, and how to handle different patient groups’ cultural and religious concerns. (shrink)

The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...) role to play in the description of morally relevant facts. It plays a role in answering the “reality-revealing questions” (what, why,how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses “the normative power of the factual,” which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. (shrink)

Moral values in healthcare range widely between interest groups and are principally subjective. Disagreements diminish dialogue and marginalize alternative viewpoints. Extremely premature births exemplify how discord becomes unproductive when conflicts of interest, cultural misunderstanding, constrained evidence review, and peculiar hierarchy compete without the balance of objective standards of reason. Accepting uncertainty, distributing risk fairly, and humbly acknowledging therapeutic limits are honorable traits, not relativism, and especially crucial in our world of constrained resources. We think dialogics engender a mutual understanding that: (...) i) transitions beliefs beyond bias, ii) moves conflict toward pragmatism (i.e., the truth of any position is verified by subsequent experience), and iii) recognizes value pluralism (i.e., human values are irreducibly diverse, conflicting, and ultimately incommensurable). This article provides a clear and useful Point-Counterpoint of extreme prematurity controversies, an objective neurodevelopmental outcomes table, and a dialogics exemplar to cultivate shared empathetic comprehension, not to create sides from which to choose. It is our goal to bridge the understanding gap within and between physicians and bioethicists. Dialogics accept competing relational interests as human nature, recognizing that ultimate solutions satisfactory to all are illusory, because every choice has downside. Nurturing a collective consciousness via dialogics and pragmatism is congenial to integrating objective evidence review and subjective moral-cultural sentiments, and is that rarest of ethical constructs, a means and an end. (shrink)

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether (...) to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (shrink)

The aim of this study was to explore neonatal nurses’and mothers of preterm infants’experiences of daily challenges. Interviews took place asking for good, bad and challenging experiences. Data were analysed using qualitative content analysis and findings were clustered in two categories: good and challenging experiences, each containing three themes. The good experiences were: managing with success as a nurse, small things matter for mothers, and a good day anyhow for mothers and nurses. The challenging experiences were: mothering in public, being (...) pulled between responsibilities, and adverse things stick under the nurses’skin. The study shows that small daily clinical matters become big issues and could lead to moral distress, and that nurses integrate ethics of justice and ethics of care while mothers are concerned about health and well-being of their specific infant only. The challenge for nursing to integrate fairness and sensitive care in family-oriented neonatal care is discussed. (shrink)

Most legal analyses of selective nontreatment of seriously ill children centre on the question of whether it is in a child’s best interests to be kept alive in the face of extreme suffering and/or an intolerable quality of life. Courts have resisted any direct confrontation with the question of whether the child’s death is in his or her best interests. Nevertheless, representations of death may have an important role to play in this field of jurisprudence. The prevailing philosophy is to (...) configure death as a release from a futile or painful existence and/or as a dignified end in an objectively hopeless situation. However, there can be disagreement about the meaning of death in these settings. Some parents object that death would be premature or that it represents a culpable neglect of their child. A closer examination of these discordant interpretations allows for a better comprehension of the cultural understandings that underscore clinical and legal accounts of death following end-of-life decisions. (shrink)

Frühgeborene im Grenzbereich der Lebensfähigkeit befinden sich in einer prognostischen Grauzone. Das bedeutet, dass deren Prognose zwar schlecht, aber nicht hoffnungslos ist, woraus folgt, dass nach Geburt lebenserhaltende Behandlungen nicht obligatorisch sind. Die Entscheidung für oder gegen lebenserhaltende Maßnahmen ist wertbeladen und für alle Beteiligten enorm herausfordernd. Sie sollte eine zwischen Eltern und Ärzt*innen geteilte Entscheidung sein, wobei sie unbedingt mit den Präferenzen der Eltern abgestimmt sein sollte. Bei der pränatalen Beratung der Eltern legen die behandelnden Ärzt*innen üblicherweise numerische Schätzungen (...) der Prognose vor und nehmen in der Regel an, dass die Eltern ihre Behandlungspräferenzen davon ableiten. Inwieweit probabilistische Daten die Entscheidungen der Eltern in prognostischen Grauzonen tatsächlich beeinflussen, ist noch unzureichend untersucht. In der hier vorliegenden Arbeit wird eine Studie reflektiert, in welcher die Hypothese geprüft wurde, dass numerisch bessere oder schlechtere kindliche Prognosen die Präferenzen werdender Mütter für lebenserhaltende Maßnahmen nicht beeinflussen. In dieser Studie zeigte sich, dass die elterlichen Behandlungspräferenzen eher von individuellen Einstellungen und Werten als von Überlegungen zu numerischen Ergebnisschätzungen herzurühren scheinen. Unser Verständnis, welche Informationen werdende Eltern, die mit einer extremen Frühgeburt konfrontiert sind, wünschen und brauchen, ist noch immer unvollständig. Bedeutende medizinische Entscheidungen werden keineswegs nur rational und prognoseorientiert gefällt. In der vorliegenden Arbeit wird diskutiert, welchen Einfluss der Prozess der Entscheidungsfindung auf das Beratungsergebnis haben kann und welche Implikationen sich aus den bisher vorliegenden Studienergebnissen ergeben – klinisch-praktisch, ethisch und wissenschaftlich. (shrink)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied to (...) interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (shrink)

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the (...) range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence. (shrink)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied to (...) interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (shrink)

Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? (...) Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate. (shrink)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

Given the costs of litigation high-profile court cases about withdrawing life-sustaining medical treatment for seriously ill children in England & Wales tend to be followed by discussion about how to avoid similar cases in future. Whilst two proposals, mediation and replacing the best interests standard with a harm threshold, have received broad attention, a proposal to replace the court by a specialist review committee has not been further investigated. This article analyses the effects of a putative replacement of the courts (...) by a specialist review committee using the process enacted by the futility clauses in the Texas Advance Directives Act (TADA) as a model. Under TADA life-sustaining treatment may legally be withdrawn when a review committee deems it futile and no alternative healthcare provider can be identified. The investigation finds that installing a national review committee with the power to decide whether life-sustaining treatment is futile would have reduced the number of court cases about withdrawal thereof in England & Wales to a handful over the last 3 decades. In addition to shorter procedures and costs savings, a national review committee modelled after TADA would have advantages for both clinicians and parents. Advantages for clinicians are more limited exposure to delivery of clinical care that may cause moral distress and less exposure to adverse press and social media content. Advantages for parents are that the process would establish them as ethical decision makers and offer the possibility of a transfer of the care of the child provided an alternative healthcare provider can be found. As such decisions taken by a specialist review committee may be more acceptable for parents than those of the courts. (shrink)

Birth asphyxia is the most common single cause of death in term newborn infants. The majority of deaths in developed countries follow decisions to withdraw intensive care. Recent technological advances, particularly the use of magnetic resonance imaging (MRI) of the brain, may affect the process of prognostication and decision-making. There is little existing evidence about how prognosis is determined in newborn infants and how this relates to treatment withdrawal decisions.An exploratory qualitative study was performed using in-depth semi-structured interviews with a (...) sample of ten neonatologists from tertiary intensive care units in the UK. Participants were purposively selected to ensure a range of experience and type of unit. They were asked about the process of prognostication for infants with birth asphyxia and decisions about treatment withdrawal. Interviews were transcribed and thematically analysed.MRI played a significant role in decision-making about life-sustaining treatment for a number of clinicians. Clinicians did not identify particular ethical concerns related to MRI, though wider discussion revealed issues relating to uncertainty around predictions, the timing of prognostication and decision-making, and difficulty in predicting quality of life. (shrink)