In the world of Austrian neonatal intensive care units, the role of ethics is recognized only partially. The normatively tense cases that are at the backdrop of this essay concern the situations around the limit of viability, which is the point in the development of an extremely preterm infant at which there are chances of extra-uterine survival. This essay first outlines the key explicit ethical challenges that are mainly concerned with notions of uncertainty and best interest. Then, it attempts to (...) elucidate the less explicit ethical challenges related to the notion of nudging in the neonatal practice and argue that the role of ethics needs to be recognized more—with the focus on the role of virtue ethics—in order to improve the practice of neonatal medicine. (shrink)

This paper explores the laborious and intimate work of turning bodies of research animals into models of human patients. Based on ethnographic research in the interdisciplinary Danish research centre NEOMUNE, we investigate collaboration across species and disciplines, in research aiming at improving survival for preterm infants. NEOMUNE experimental studies on piglets evolved as a platform on which both basic and clinical scientists exercised professional authority. Guided by the field of multi-species research, we explore the social and material agency of research (...) animals in the production of human health. Drawing on Anna Tsing’s concept of “collaborative survival”, we show that sharing the responsibility of the life and death of up to twenty-five preterm piglets fostered not only a collegial solidarity between basic and clinical scientists, but also a transformative cross-fertilization across species and disciplines—a productive “contamination”—facilitating the day-to-day survival of piglets, the academic survival of scientists and the promise of survival of preterm infants. Contamination spurred intertwined identity shifts that increased the porosity between the pig laboratory and the neonatal intensive care unit. Of particular significance was the ability of the research piglets to flexibly become animal-infant-patient hybrids in need of a united effort from basic and clinical researchers. However, ‘hybrid pigs’ also entailed a threat to the demarcation between humans and animals that consolidates the use of animals in biomedical research, and efforts were continuously done to keep contamination within spatial limits. We conclude that contamination facilitates transformative encounters, yet needs spatial containment to materialize bench-to-bedside translation. (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)

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)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case series has a qualitative (...) retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

The development of neonatology and the establishment of neonatal intensive care units has led to a vast array of new medical ethical problems and dilemmas centered around discontinuing treatment or nontreatment decisions. Neonatology has become one of the fields that has made clear that medical success is only rarely nonproblematic. The new technology can be a blessing for some, but it may also become a sad experience to others, with life-long repercussions.The ethical problems of neonatology transcend national (...) boundaries. Nevertheless, there are differences in approach among various countries. In The Netherlands, the ethical deliberations have been a matter of public debate, but most of the decision making is left to the medical profession; these decisions are considered too harsh for the general public. Recently, two developments have emerged. The Royal Dutch Medical Association and the Dutch Pediatrics Society have published reports with guidelines and ethical reflections. Over the same period of time, cases have been brought to court for legal analysis and the development of case precedence. (shrink)

Neonatal professionals encounter many ethical challenges especially when it comes to interventions at the limit of viability (weeks 22–25 of gestation). At times, these challenges make the moral dilemmas in neonatology tragic and they require a particular set of intellectual and moral virtues. Intellectual virtues of episteme and phronesis, together with moral virtues of courage, compassion, keeping fidelity to trust, and integrity were highlighted as key virtues of the neonatal professional. Recognition of the role of ethics requires a recognition (...) that answering the obvious question (what shall we do?) does not always suffice. Acknowledging the tragic question (is any of the alternatives open to us free from serious moral wrongdoing) and recognizing the ethical dilemmas, where the lines between right and wrong are blurred, leads to actions taken towards establishing ethics frameworks to support decision-making. In neonatology units, such organizational support can help in allowing the team members to recognize the ethical dilemmas, avoid moral distress, and improve team cohesion and the quality of care provided. Only when the organizational structure allows ethical dilemmas to be recognized, adequate decisions can be made. (shrink)

What is the future of genetic testing during pregnancy likely to look like? Given that the patterns of use of genetic testing in neonatology tend to precede, and thus predict, patterns of prenatal...

The key to wealth in health care is the physician, who certifies to third-party payers that health care items and services are necessary for patient care. To compete more effectively for this wealth, physician specialists are organizing their practices into for-profit corporations and employing other physicians. Focusing on neonatology, this article describes the prevailing business model of these for-profit medical groups as controlling employed physicians through restrictive employment contract provisions, e.g., non-compete and mandatory arbitration clauses. With this business model (...) and because of deficiencies in current law, for-profit medical groups eliminate competition from other physician specialists to the detriment of patients and consumers. (shrink)

The outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine.

The authors have undertaken a study to explore the views in non-Western cultures about ending the lives of newborns with genetic defects. This study consists of including active euthanasia alongside withdrawal and withholding of treatment as potential methods used.Apart from radicalising the support for active euthanasia in certain instances of neonatal diagnoses, is another interesting point that views of children and death are shaped by religion and culture and are especially highly charged with culturally specific symbolism/s. Furthermore, this is augmented (...) in the context of non-Western cultures—further polarising the positivist ethics of Western scientific medicine from the cultures that affect only those who are members of ‘other’ societies.From this starting point, the authors shift the focus from clinical explanations of the causation and prognosis of the genetic defects and enter a dialogue with cultural narratives. Consequently, their argument is, broadly, a reassessment of medical practice as a contextualisation of a particular culture/s rather than indifferent or independent from cultural forces or influences.This is a radical claim. …. (shrink)

With new, effective, and expensive health care services, the American health care sector has become an even greater source of business and wealth opportunities. All kinds of health care providers and suppliers are competing for patients and dollars. The key to wealth in today’s health care sector is the physician. Only physicians can certify to third-party payers that health care services, medical devices, or pharmaceutical products are necessary for patient care. That certification initiates the process by which the item, service, (...) or treatment modality is ordered, delivered, and paid for. Thus, organizations that can exert control over physicians stand to gain financially. (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...

In a crisis, societal needs take precedence over a patient’s best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely premature (...) babies. But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When “triaging” or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies. (shrink)

One of the first areas of ethical concern in medicine was the neonatal intensive care unit. Questions first seen in this context soon entered the discourse of bioethical debate. The history of the ethics of neonatal care is described from the context of neonatology, and the emerging principles are outlined.

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)

Recent research governance documents say that the body of research evidence must reflect population diversity. The response to this needs to be more sophisticated than simply ensuring minorities are present in samples. For quantitative research looking primarily at treatment effects of drugs and devices four suggestions are made. First, identify where the representation of minorities in samples matters—for example, where ethnicity may cause different treatment effects. Second, where the representation of a particular group matters then subgroup analysis of the results (...) will usually be necessary. Third, ensuring representation and subgroup analysis will have costs; deciding on whether such representation is worthwhile will involve cost benefit analysis. Fourth, the representation of minorities should not be seen as mainly a locality issue. For qualitative research it is argued that the representation of diversity is often important. Given the small samples of many qualitative projects, however, the best way to ensure representation occurs is to allow a proliferation of such research, not to stipulate such representation in samples. (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is open (...) heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

Research teams have used extra-uterine systems to support premature fetal lambs and to bring them to maturation in a way not previously possible. The researchers have called attention to possible implications of these systems for sustaining premature human fetuses in a similar way. Some commentators have pointed out that perfecting these systems for human fetuses might alter a standard expectation in abortion practices: that the termination of a pregnancy also entails the death of the fetus. With Biobags, it might be (...) possible, some argue, that no woman has the right to expect that outcome if the technology is able to sustain fetal lifeafteran abortion. In order to protect the expectation that the termination of a pregnancy always entails the death of the fetus, Elizabeth Romanis has argued that fetuses sustained in Biobags have a status different than otherwise ‘born’ children. In support of that view, she argues that these ‘gestatelings’ are incapable of independent life. This argument involves a misunderstanding of the gestational support involved, as well as a misapprehension of neonatology practice. Here, we argue that any human fetus sustained in a Biobag would be as ‘independent’ as any other premature infant, and just as ‘born’. Neonatologists would seem to have certain presumptive moral responsibilities toward any human fetus gestating in a Biobag. It remains a separate question whether the perfection and widespread application of Biobags for premature human beings would or should alter the expectation that ending a pregnancy also entails fetal death. (shrink)

Research teams have used extra-uterine systems to support premature fetal lambs and to bring them to maturation in a way not previously possible. The researchers have called attention to possible implications of these systems for sustaining premature human fetuses in a similar way. Some commentators have pointed out that perfecting these systems for human fetuses might alter a standard expectation in abortion practices: that the termination of a pregnancy also entails the death of the fetus. With Biobags, it might be (...) possible, some argue, that no woman has the right to expect that outcome if the technology is able to sustain fetal life _after_ an abortion. In order to protect the expectation that the termination of a pregnancy always entails the death of the fetus, Elizabeth Romanis has argued that fetuses sustained in Biobags have a status different than otherwise ‘born’ children. In support of that view, she argues that these ‘gestatelings’ are incapable of independent life. This argument involves a misunderstanding of the gestational support involved, as well as a misapprehension of neonatology practice. Here, we argue that any human fetus sustained in a Biobag would be as ‘independent’ as any other premature infant, and just as ‘born’. Neonatologists would seem to have certain presumptive moral responsibilities toward any human fetus gestating in a Biobag. It remains a separate question whether the perfection and widespread application of Biobags for premature human beings would or should alter the expectation that ending a pregnancy also entails fetal death. (shrink)

What is the status of empirical contributions to bioethics, especially to clinical bioethics? Where is the empirical approach discussed in bioethics related to the ongoing debate about principlism versus casuistry? Can we consider an integrative model of research in medical ethics and which empirical methodology could then be valuable, the quantitative or the qualitative? These issues will be addressed in the first, theoretical part of the paper. The concept of the “embedded researcher” presented in this article was stimulated by the (...) two questions, (1) how can we safeguard that our research will yield valid and meaningful results to practice? and (2), how can we convince clinical colleagues that medical ethics offers relevant contributions to the analysis and solution of problems? One tentative answer has been our effort to elaborate a coherent methodological research approach in the field of end-of-life issues integrating qualitative and quantitative as well as casuistic methodologies. This development is characterized in the second part describing the ECOPE Study (short title)“Ethical Conditions Of Passive Euthanasia.” The achievements and limitations of the suggested approach of the “embedded researcher” are discussed referring to 3 examples of our joint studies about ethical issues concerning(1) critical decision-making in neonatology(2) limitation of treatment in intensive care(3) problems with doctor-patient conversation at the end of life in oncologyConclusions from our studies are put to discussion in the final part of the paper about how to further develop research in the field of end-of-life care and, maybe,clinical bioethics as a whole. (shrink)

We analyzed the patients’ perception of prenatal diagnosis of fetal cardiac pathology, and the reasons for choosing to continue with pregnancy despite being eligible to receive a medical termination of pregnancy. We also identified the challenges, the motives interfering in decision-making, and the consequences of the decisions on pregnancy, child and mother. This descriptive, prospective and longitudinal study was conducted in France, amongst pregnant women who wished to continue their pregnancy despite an unfavorable medical advice. Socio-demographic data were collected through (...) a questionnaire. Such questionnaire covered information assessing the parents/mother’s perception of prenatal diagnosis, and medical termination of pregnancy, their interpretation of the established diagnosis and their motives for not considering pregnancy termination. 72 eligible patients were analyzed over one year: mean age 33 ± 6.89 years, 47 patients had already given birth to ≥1 healthy child. Mean gestational age at the detection of fetal cardiac pathologies was 30 ± 4.37 weeks of amenorrhea. Patients decided to keep the child after 3 ± 1.25 consultations. 56 patients made their decision with their husbands and 16 made their decision alone. Reasons for declining the medical termination were culpability and responsibility, ideologies and convictions, mistrust and hope. Newborns of 67 patients died with a mean survival duration of 38 days. Patient informed consent should be sought before any decision in neonatology, even if conflicting with the medical team’s knowledge and the pregnant mother’s benefits. Decisions to accept or decline pregnancy termination depend on the patients’ psychological character, ideologies, convictions, and mistrust in the diagnosis/prognosis, or hope in the fetus survival. (shrink)

Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United (...) States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects. (shrink)

Clinicians are required to act in the best interest of neonates.However, it is not obvious that entry into a randomised controlled trial (RCT) is in a neonate’s best interest because such trials often involve additional onerous procedures (such as intramuscular injections) in return for which the neonate receives unproven treatment or a placebo.On the other hand, neonatology needs to develop its evidence base, and RCTs are central to this task. The solution posited here is based on two points. First, (...) “best interest” is not equivalent to “the best possible interest” only to “best interest within a certain realm”. The realm of deliberation when asking the title question is the neonate’s health. Deliberating in this realm may involve the exclusion from consideration of some factors that might be thought relevant (such as parental wealth). Furthermore, circumstances may dictate the need to deliberate on other factors that might be thought irrelevant (such as health care resources). Second, deciding on a neonate’s best interest does not involve “putting oneself in its shoes”. Rather, it involves asking in what it has an interest, or stake. These will include some things in which we all, as human beings, have a stake, such as medical progress. Putting these two points together, in the realm of health the answer to whether RCT entry is in a neonate’s best interest is usually very finely balanced. Where this is the case, it is reasonable to invoke a broader notion of best interest and include a broader range of elements in which the neonate has a stake, including medical progress. In this way RCT entry can, usually, be said to be in a neonate’s best interest. (Journal of Medical Ethics 2001;27:110–113) Keywords: Neonates; randomised controlled trials; best interest; ethics. (shrink)

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These (...) policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial. (shrink)

Important bioethcs changes are underway in the Netherlands that carry, for better or worse, far-reaching social consequences. The two major areas of change involve economics and containing soaring health costs and end-of-life care as reflected in several high-profile cases: in a decision handed down by the Dutch Supreme Court on reviewing the procedures for the termination of life, in the discussion surrounding The Groningen Protocol and the active ending of lives in neonatology, and in a report of a Royal (...) Dutch Medical Society's Committee on the role of physicians in ending life in cases of requests to die outside the area of terminal diseases. (shrink)

Background In the Netherlands, using drugs to deliberately end the life of a severely defective newborn baby who is in extreme suffering can be permissible under very precise circumstances. This does not mean that all Dutch neonatologists are willing to engage in such behaviour. This paper discusses the use of neuromuscular blockers (NMBs) in connection with abstention decisions in neonatology and the boundaries between ‘deliberate ending of life’ and other end-of-life decisions. These boundaries are of paramount importance because, of (...) all end-of-life decisions, only ‘deliberate ending of life’ must be reported by the responsible doctor and exposes him to the risk of being prosecuted. Methods 14 Dutch neonatologists were presented with a hypothetical case of a severely asphyxiated baby who faces a long dying process after withdrawal of ‘medically futile’ (zinloos) life-sustaining ventilation. Doctors were asked whether it is acceptable to administer NMBs in this situation and whether such behaviour should be reported. Results and conclusions Doctors' responses were heterogeneous, showing that the acceptability of using NMBs in certain situations and the boundaries between end-of-life decisions are currently a subject of discussion among Dutch neonatologists. Many respondents reported feeling threatened by the potential involvement of the criminal law authorities in the system of control over ‘deliberate ending of life’. (shrink)

Osteopathy is a person-centred healthcare discipline that emphasizes the body’s structure-function interrelationship—and its self-regulatory mechanisms—to inform a whole-person approach to health and wellbeing. This paper aims to provide a theoretical framework for developing an integrative hypothesis in osteopathy, which is based on the enactivist and active inference accounts. We propose that osteopathic care can be reconceptualised under active inference as a unifying framework. Active inference suggests that action-perception cycles operate to minimize uncertainty and optimize an individual’s internal model of the (...) lived world and, crucially, the consequences of their behaviour. We argue that active inference offers an integrative framework for osteopathy, which can evince the mechanisms underlying dyadic and triadic exchanges and osteopathic care outcomes. We propose that this theoretical framework can underpin osteopathic care across the lifespan, from preterm infants to the elderly and those with persistent pain and other physical symptoms. In situations of chronicity, as an ecological niche, the patient-practitioner dyad provides the osteopath and the patient with a set of affordances, i.e., possibilities for action provided by the environment, that through shared intentionally, can promote adaptations and restoration of productive agency. Through a dyadic therapeutic relationship, as they engage with their ecological niche’s affordances—a structured set of affordances shared by agents—osteopath and patient actively construct a shared sense-making narrative and realise a shared generative model of their relation to the niche. In general, touch plays a critical role in developing a robust therapeutic alliance, mental state alignment, and biobehavioural synchrony between patient and practitioner. However, its role is particularly crucial in the fields of neonatology and paediatrics, where it becomes central in regulating allostasis and restoring homeostasis. We argue that from an active inference standpoint, the dyadic shared ecological niche underwrites a robust therapeutic alliance, which is crucial to the effectiveness of osteopathic care. Considerations and implications of this model—to clinical practice and research, both within- and outside osteopathy—are critically discussed. (shrink)

Respecting patient autonomy through the process of soliciting informed consent is a cornerstone of clinical ethics. In pediatrics, until a child becomes an adult or legally emancipated, that ethical tenet takes the form of respect for parental decision-making authority. In instances of respecting religious beliefs, doing so is not always apparent and sometimes the challenge lies not only in the healthcare provider’s familiarity of religious restrictions but also their knowledge of medical interventions themselves which might conflict with those restrictions. We (...) examine a case of a newborn receiving animal-derived surfactant, a common scenario in neonatology, and present considerations for providers to weigh when confronting when such an intervention might conflict with parent’s religious beliefs. We end with strategizing ways to address this issue as a medical community. (shrink)

Perinatal hospice is a novel form of care for an unborn child who has been diagnosed with a significantly life-limiting condition. In this book, Aaron D. Cobb develops a virtue-based defense of the value of perinatal hospice. He characterizes its promotion and provision as a common project of individuals, local communities, and institutions working together to provide exemplary care. Engaging with important themes from the work of Alasdair MacIntyre and Robert Adams, he shows how perinatal hospice manifests virtues crucial to (...) meeting the needs of families in these difficult circumstances. As a work of applied virtue ethics, this book has important normative, social, and political implications for the creation and development of structured programs of care. It grounds the view that communities ought to devote resources to ensure that these programs are widely available and to develop social structures that promote awareness of and accessibility to these forms of care. A Virtue-Based Defense of Perinatal Hospice will be of interest to philosophers working in bioethics and applied virtue ethics, as well as scholars in the fields of neonatology, nursing, palliative and hospice care, and counseling who are interested in the study of perinatal hospice. (shrink)

Muraskas et al. and Hefferman and Heilig present the painfully elusive ethical questions regarding decisionmaking in the care of the extremely low birth weight infants in the intensive care nursery. At what gestation or size do we resuscitate? Can we stop resuscitation after we have started? How much money is too much to spend? Is the distress of the parents of the ELBW infant, the anguish of their caregivers, and the moral and ethical uncertainty of the approach to these infants (...) too much to pay? Who speaks for the neonate: the parent, nurse, attorney, or physician? Ideally these questions should have been answered 30 years ago when modern neonatology embarked on a journey from where it could not return. A new breed of physician, called “neonatologist,” seduced by the high-tech lure and the promise of saving lives previously unsavable pioneered a lucrative and life-saving technological revolution in the care of premature newborns. This rapid advancement in neonatology occurred a few years after the death of a premature infant named Patrick Kennedy in 1963. While the country mourned, medical scientists vowed that this would not happen again. First continuous positive airway pressure, then mechanical ventilation, changed medical care of premature newborns forever. It began an era of euphoria and excitement. Neonatologists raced to push to the edge of newborn viability. What was the youngest salvageable gestational age? What was the smallest that could be saved? Yes, we dreamed, and still do dream of artificial placentas. Ethical questions took a back seat in the search for the edge because the waters were uncharted and the tough questions could not be answered without experience. What was to be the cost in dollars and in anguish to save the Patrick Kennedys of the world? Triumphs led to grave concerns as we approached the edge. However, no advancement in neonatology has ever changed the ultimate questions. (shrink)

Professional statements guide neonatal resuscitation thresholds at the border of viability. A 2015 systematic review of international guidelines by Guillen et al. found considerable variability between statements’ clinical recommendations for infants at 23–24 weeks gestational age (GA). The authors concluded that differences in the type of data included were one potential source for differing resuscitation thresholds within this “ethical gray zone.” How statements present ethical considerations that support their recommendations, and how this may account for variability, has not been as (...) rigorously explored. We performed a mixed-methods exploratory analysis of 25 current international guidelines for neonatal resuscitation at 22+0−25+0 weeks GA. Qualitative analysis using a modified grounded theory yielded 34 distinct codes, eight categories, and four overarching themes. Three themes, consequentialism, principlism, and rights-based, consisted of concepts central to these ethical frameworks. The fourth theme, clinical reasoning, described counseling practices, medical management, outcomes data, and prognostic uncertainty, without any ethical context. The theme of clinical reasoning appeared in 22 of 25 guidelines. Ten guidelines lacked any ethical theme. Guidelines with an identified ethical theme were more likely to recommend comfort care than guidelines without an identified ethical theme, and recommended it at a higher average GA (22.7 weeks vs. 22.0 weeks, p = 0.03). Thus, how ethical concepts are incorporated into guidelines potentially impacts resuscitation thresholds. We argue that inclusion of explicit discussion of ethical considerations surrounding resuscitation in the “gray zone” would clarify values that inform recommendations and facilitate discussions about how neonatology ought to approach periviability as outcomes continue to evolve. (shrink)

With advancing rank in medical training comes increased academic and clinical responsibility, including education and supervision of trainees and junior staff. When I became a senior postdoctoral fellow sub‐specializing in neonatology, I assumed the role of co‐attending in the neonatal intensive care unit. At that point in my training, I felt well prepared for the challenging task. I would be in charge, make decisions independently with the team, and supervise, as well as teach, the junior fellows, residents, and practitioners. (...) In short, I would assume full responsibility for the care of the patients, their families, and the medical team. My mentor, an experienced attending, would discuss every patient with me each day, but would otherwise stand in the shadows, available for help and guidance when needed. On the very first day, one of the smaller premature babies on our service started having difficulty breathing, and it was soon clear that she would need to have her endotracheal tube reinserted. (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a (...) do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate it...

Withdrawing Artificial Nutrition and Hydration in the neonatal intensive care units has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders’ experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 (...) different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby’s appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant’s death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices—that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby’s death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby’s comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby’s death. (shrink)