While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...) this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

Background: The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child’s airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics (...) consult. Objective: The study explores the conflicts that may arise around tracheotomy placements. Research design: This study is a retrospective cohort study of pediatric patients for whom a tracheotomy decision required a bioethics consult. Participants and research context: Pediatric patients aged birth to 18 years old with a bioethics consult for a tracheotomy decision conflict between April 2010 and December 2016. A standardized data collection tool was used to review notes entered by the palliative care team, social workers, primary clinical team interim summaries, and the bioethics consult service. Ethical considerations: The study was reviewed and approved by the medical center’s institutional review board. Results: There were 248 clinical bioethics consults during the identified study period. There were 31 consults involving 21 children where the word tracheotomy was mentioned in the consult, and 13 of the 21 consults were for children with profound cognitive disability. Discussion and conclusion: Clinicians need to be aware of their own biases when discussing a child’s prognosis and treatment options while also understanding the parents’ values and what the parent might consider to be burdensome in the care of their child and the acceptable burden for the child to experience. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Objective Standards of care regarding obstetric management of life-threatening anomalies are not defined. It is hypothesised that physicians' management of these pregnancies is variable and influenced by demographic factors. Design A questionnaire was mailed to members of the Society of Maternal–Fetal Medicine with valid US addresses assessing obstetric management of both ‘uniformly lethal’ (eg, anencephaly, renal agenesis) and ‘uniformly severe, commonly lethal’ (eg, trisomy 13 and 18) anomalies. Respondents were asked to answer as if not limited by state/institutional restrictions. Fisher's (...) exact or χ2 tests were used as appropriate and correction made for multiple comparisons in analyses that were not prespecified. Results The response rate was 36% (732/2038). Nearly 100% of respondents discuss termination for both uniformly and commonly lethal anomalies. In continuing pregnancies, with patient request for obstetric non-intervention 99% of providers would comply for either uniformly or commonly lethal anomalies. The majority ‘encourage’ such management, but some were non-directive or discouraged this management. In continuing pregnancies, with patient request for full obstetric intervention the majority of respondents was willing to comply for both uniformly (71%) and commonly (82%) lethal anomalies. While most practitioners ‘discouraged’ full intervention, some were non-directive or encouraged this management. Demographics and severity of anomaly influenced counselling. Conclusion Discrepancies exist regarding the management of life-threatening fetal anomalies. Patients may be offered different options based on practitioner demographics. The majority of physicians comply with patient wishes. Differences were noted when comparing the management of lethal with that of severe commonly lethal anomalies, suggesting that practitioners make a distinction when counselling patients. (shrink)

Intensive care units provide focused, aggressive medical intervention to critically ill patients. Physicians responsible for ICU triage must decide which patients are sick enough to require this level of care and which can be managed on the general wards. While some patients are too well for the ICU, intensivists increasingly rely on another category, “too sick to benefit,” when denying ICU admission, even if beds are readily available. Recent studies indicate that between 19 and 37 percent of patients refused ICU (...) admission were declined because they were thought too sick to benefit from it, suggesting that physician use of this category is common in ICU triage.The idea of being too sick to benefit may seem paradoxical given that ICUs exist to treat the sickest of the sick. There is, however, increasing awareness that some diseases progress despite maximal intervention. Although there have been systematic attempts to define these diseases—most notably during the medical futility debates of the 1980s and early 1990s—there is little evidence about which conditions make a patient too sick to benefit from ICU admission. In the absence of a clear understanding of which diseases progress despite maximal care, ICU triage under the category “too sick to benefit” is currently done on a case‐by‐case basis. Contemporary decisions about who is too sick to benefit thus raise a number of ethical issues about what constitutes standard of care, the role of health care providers' judgments of quality of life in triage, and the just allocation of resources.Addressing these ethical concerns requires us to better define the population of critically ill adults who are too sick to benefit—a conceptual and empirical project. In this article, I recommend employing a diagnostic concept from the neonatal literature: namely, a lethal disease. (shrink)

In this commentary I assess the possible harms to a fetus with trisomy 18 of continued life. I argue that, although there is good reason to avoid subjecting infants to major surgery and prolonged intensive care where there is little chance of benefit, doctors should support and engage honestly with parents who decide to continue their pregnancies. We should ensure that infants with trisomy 18 have access to high quality palliative care.

The aim of this commentary is to discuss the axiology of the cost–benefit approach assumed by Travis Rieder (2017) to analyze medical decision making in the case of extremely preterm infants.

Aggressive medical and surgical interventions have not been clearly demonstrated to improve survival in neonates with trisomy 18; there are no data that demonstrates improved quality of life for these children after these interventions; and these interventions are clearly associated with significant morbidity, resource allocation, and cost.

This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration at the end of life. This case raises important ethical and legal questions regarding a third person’s right to judge the value of another person’s life and the concept of ‘wrongful life’. In our brief report, we discuss the concepts of the ‘value of life’ and wrongful life, which were evoked by the court, and how these (...) concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment. However, it is unclear to what extent physicians’ decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the ‘safe’ option for the physician, and hence, as always appropriate. (shrink)