Measuring communication quality in the Neonatal Intensive Care Unit.

BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative care. Improvement of communication is a priority, while lack of specification and measurement of outcomes relevant to the pediatric population remains a challenge. Specifically, measurement of communication quality in pediatrics, and especially neonatology, is problematic. METHODS: We conducted a focused review of this topic which we hope will serve to support further research. We reviewed the current literature in Pubmed and searched the Palliative Care Research Cooperative (PCRC) instrument library. RESULTS: We found five validated instruments which met our criteria, relied on patient or surrogate report, and were developed to measure quality of communication and/or satisfaction with communication with adult patients or their surrogates. Our Pubmed search yielded 249 unique results, only two of which met our inclusion criteria. CONCLUSION: We conclude that development and exhaustive testing of a validated, comprehensive measure of communication quality for the neonatal population is needed. Without such a measure, it will be difficult to advance the field and achieve high quality prognostic communication for the parents of seriously ill babies. IMPACT: Measurement of communication quality in pediatrics, and especially neonatology, is problematic, understudied, and yet critical to the advancement of the field. There has not been an overview of existing measures of communication quality in the NICU published, nor has there been a comprehensive discussion of this important topic. Our paper provides such an overview and initiates such a discussion. We present a narrative review of existing measures of communication quality in the NICU in order to highlight the need for further study.

Getting to the Truth: Ethics, Trust, and Triage in the United States versus Europe during the Covid-19 Pandemic.

Ethical issues around triage have been at the forefront of debates during the Covid-19 pandemic. This essay compares both discussion and guidelines around triage and the reality of what happened in the United States and in Europe, both in anticipation of and during the first wave of the pandemic. Why did the issue generate so many vivid debates in the United States and so few in most European countries, although the latter were also affected by the rationing of health care resources? Are countries with socialized health care systems better equipped to face the hard choices of triaging? Important lessons in transparency, trust, and accountability for policy-makers can be drawn from this comparison, demonstrating that fostering public involvement and ethical debate remains a critical element for the sustained acceptance of any triage plan.

What Triage Issues Reveal: Ethics in the COVID-19 Pandemic in Italy and France.

In today's pandemic, many countries have experienced shortages of medical resources and many healthcare providers have often been faced with dramatic decisions about how to allocate beds, intensive care, or ventilators. Despite recognizing the need for triage, responses are not the same everywhere, and opinions and practices differ around what guidelines should be used, how they should be implemented, and who should ultimately decide. To some extent, triage issues reflect community values, revealing a given society's moral standards and ideals. Our goal is to study two countries which share many common features-Italy and France-as they deal with the pandemic, revealing the moral organization of medicine and healthcare, the power structures, and the nature of the disruptions in each context.

Hypoplastic Left Heart Syndrome: Exploring a Paradigm Shift in Favor of Surgery.

We hypothesized that enthusiasm for surgery increased for infants with hypoplastic left heart syndrome (HLHS) at Columbia University Medical Center (CUMC) between 1995 and 2012. We sought to identify factors that engendered this paradigm shift. Confidential surveys were distributed to providers at CUMC in 1995 and 2012 to measure enthusiasm for surgical intervention for HLHS. Surgical preference scores are presented as median [interquartile range]. Surveys were completed by 99/176 providers (56 % response rate) in 1995 and 153/267 (57 %) in 2012. The median surgical preference score for infants with HLHS increased from 35 [25-45] in 1995 to 45 [35-50] in 2012, P < 0.001. 53 %, 95 % CI [42, 64] of respondents recommended surgical intervention for a ward of the court in 1995 compared to 81 % [73, 89] in 2012, P < 0.001. In 2012, 64 % [53, 75] of respondents were more likely to recommend surgery than 10 years prior. The percentage of respondents who saw good outcomes following three-stage repair increased from 49 % [38, 60] in 1995 to 84 % [78, 90] in 2012, P < 0.001. The majority believed that parents should have the option of comfort care, 91 % [85, 97] in 1995 and 85 % [79, 91] in 2012, P = 0.06. In both eras, prematurity and additional surgical problems dissuaded providers from recommending surgical intervention. Despite the fact that most providers have seen good outcomes and now recommend surgery for infants with HLHS, the majority of providers still believe that the option of comfort care should be available to families.

The moral organization of the professions: Bioethics in the United States and France.

Bioethics is a relatively new endeavor, emerging as a discourse distinct from considerations of moral responsibility occurring within the professions of medicine and science. We use the 'de-centered comparative method' to examine how the emergence and development of bioethics varies across different social and cultural settings. In particular, we look at bioethical work in the United States and France, exploring these different manifestations of the movement toward external oversight of those working in medicine and the life sciences. The study of these varied processes of occupational development allows us to address two important issues. One is the way in which pathways of professionalisation are shaped by contingent cultural and historical factors. The other is the degree to which the increasing prominence of the bioethical occupation is the result of the professional desires of bioethicists and/or a concern for the public good.

Social science and bioethics: the way forward.

It is no surprise that bioethics and sociology developed an adversarial relationship: bioethicists value the clear descriptions of ethically charged situations provided by social scientists, but doubt the ability of those trained in social science to logically derive and discern 'the good'. For their part, social scientists - experts in observing and collecting data about the way the world is- find bioethicists ignorant of the ways elegantly crafted solutions to ethical problems get altered when incarnated in varied social and cultural settings. This discipline-centred self-affirmation can be a satisfying exercise, but it offers nothing to the project of promoting more moral medicine and health care. The articles collected in this volume demonstrate the value of collaboration between social scientists and bioethicists. Focusing on four themes found in recent sociological research in bioethics - ethics of research, the creation of moral boundaries, bioethics and social policy, and the bioethical imagination - this anthology offers practical models of co-operative work where the strengths of each discipline are brought together to advance our understanding of bioethical issues and to show the way toward just and effective social policy.

When medical cure is not an unmitigated good.

The impact of chronic illness on patients has been discussed extensively, but little attention has been paid to the reverse situation: the need for patients who have been chronically ill since childhood to adjust to health and normality in adulthood. Drawing upon the narratives of two adults with childhood onset diseases, this paper provides a new perspective about the transition from chronic illness to health after a successful transplantation. We analyze from the patients' perspective the unusual disruptive impact of overcoming illness in such situations. The process of becoming cured affects their identity, leaving them unable to restructure their self within health and normality, in the same way as others are unable to adjust to chronic illness. Health care providers and families must pay more attention to the losses and life changes these patients undergo after being cured, and to their specific needs in the post-transplantation situation. We hope to offer insight into ways to prevent and address the difficulties and suffering in such situations, which may become more frequent as more therapeutic options become available for adults with childhood onset diseases.

Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units.

Neonatal intensive care has been studied from an epidemiological, ethical, medical and even sociological perspective, but little is known about the impact of parental involvement in decision-making, especially in critical cases. We rely here on a comparative, case-based approach to study the parental role in decision-making within two technologically identical but culturally and institutionally different contexts: France and the United States. These contexts rely on two opposed models of decision-making: parental autonomy in the United States and medical paternalism in France. This paternalism model excludes parents from the decision-making process. We investigate whether parental involvement leads to different outcomes from exclusively medically determined decisions or whether "technological imperatives" outplay all other factors to shape a unique, 'medically optimal' outcome. Using empirical data generated from extensive ethnographic fieldwork, in-depth interviews with 60 clinicians and 71 parents and chart review over a year in two neonatal intensive care units (one in France and one in the US), we analyze the factors that can explain the observed differences in decision-making in medically identical cases. Parental involvement and the legal context play a less role than physicians' differential use of certainty versus uncertainty in prognosis, a conclusion that corroborates the fact that medical control over ethical dilemmas remains even in the context of autonomy. French physicians do not ask parents permission to withdraw care (as expected in a paternalistic context); but symmetrically, American neonatologists (despite the prevailing autonomy model) tend not to ask permission to continue. The study provides an analysis of the making of "ethics", with an emphasis on how decisions are conceptualized as ethical dilemmas. The final conclusion is that the ongoing medical authority on ethics remains the key issue.

Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units.

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.