Simple Interventions for Pediatric Residents' Moral Distress: A Randomized, Controlled Experiment.

BACKGROUND AND OBJECTIVES: Pediatric residents are at high risk for moral distress, knowing the moral or ethically right thing to do but feeling unable to do it, which is associated with poor patient care and burnout. Researchers have proposed numerous interventions to reduce distress, but few (if any) have been supported by experimental evidence. In this study, we used an experimental method to provide proof-of-concept evidence regarding the effect of various simple supports on pediatric residents' reported degree of moral distress. METHODS: We conducted a study of pediatric residents using a split sample experimental design. The questionnaire contained 6 clinical vignettes describing scenarios expected to cause moral distress. For each case, participants were randomly assigned to see 1 of 2 versions that varied only regarding whether they included a supportive statement. After reading each of the 6 cases, participants reported their level of associated moral distress. RESULTS: Two hundred and twenty respondents from 5 residency programs completed the experiment. Cases were perceived to represent common scenarios that cause distress for pediatric residents. The addition of a supportive statement reduced moral distress in 4 of the 6 cases. CONCLUSIONS: In this proof-of-concept study, simple yet effective interventions provided support by offering the resident empathy and shared perspective or responsibility. Interventions that were purely informational were not effective in reducing moral distress.

Ethics Considerations Regarding Artificial Womb Technology for the Fetonate.

Since the early 1980's, with the clinical advent of in vitro fertilization resulting in so-called "test tube babies," a wide array of ethical considerations and concerns regarding artificial womb technology (AWT) have been described. Recent breakthroughs in the development of extracorporeal neonatal life support by means of AWT have reinitiated ethical interest about this topic with a sense of urgency. Most of the recent ethical literature on the topic, however, pertains not to the more imminent scenario of a physiologically improved method of neonatal care through AWT, but instead to the remote scenario of "complete ectogenesis" that imagines human gestation occurring entirely outside of the womb. This scoping review of the ethical literature on AWT spans from more abstract concerns about complete ectogenesis to more immediate concerns about the soon-to-be-expected clinical life support of what we term the fetal neonate or fetonate. Within an organizing framework of different stages of human gestational development, from conception to the viable premature infant, we discuss both already identified and newly emerging ethical considerations and concerns regarding AWT and the care of the fetonate.

Relational, Emotional, and Pragmatic Attributes of Ethics Consultations at a Children's Hospital.

BACKGROUND: Pediatric ethics consultations are important but understudied, with little known about consultations' contextual attributes, which may influence how ethically problematic situations are perceived and addressed. METHODS: We analyzed data regarding 245 pediatric clinical ethics consultations performed between 2013 and 2018 at a large children's hospital. Prespecified data elements included 17 core problematic issues that initiate consultations, 9 ethical considerations identified by the consultation service, and 7 relational, emotional, and pragmatic contextual attributes of the consultation. The main process measure was the cumulative consultation process, ranging from one-on-one discussions with the requestor, to meeting with the clinical team, separate meetings with the patient or family and the clinical team, or combined meeting with the patient or family and the clinical team. RESULTS: The most-prevalent core problematic issues were intensity or limitation of treatment (38.8%) and treatment adherence and refusal (31%). Common pertinent ethical considerations were best interest (79.2%), benefits versus harms of treatment (51%), and autonomy and decision-making (46.5%). A total of 39.2% of consults culminated with a meeting with the clinical team, 9.4% with separate meetings, and 8.2% with a meeting with all parties. Common contextual attributes were discord (43.3%), acknowledged dilemma (33.5%), and articulate disagreement (29.8%). In exploratory analyses, specific contextual attributes were associated with the core problematic issue that initiated the consultation and with how the consultative process culminated. CONCLUSIONS: Pediatric ethics consultations have contextual attributes that in exploratory analyses are associated with specific types of problems and, to a lesser degree, with the cumulative ethics consultation process.

Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity.

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices.

Changes in Parental Hopes for Seriously Ill Children.

BACKGROUND: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time. METHODS: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit. RESULTS: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents. CONCLUSIONS: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.

Futility, Inappropriateness, Conflict, and the Complexity of Medical Decision-Making.

The concepts of medical futility and "potentially inappropriate" interventions aim to describe particular decision-making situations and assist in making ethically sound decisions. This article explores how both of these concepts simplify the rather more complicated decision-making task in ways that often hinder their ability to be helpful, and potentially allow for unstated biases to influence decisions. Instead of searching for a single unifying phrase or concept, acknowledging and explicitly working with the numerous judgments and decisions that comprise a high-stakes medical treatment decision will do more to advance ethically sound decision-making.

Responding to Moral Distress and Ethical Concerns at the Intersection of Medical Illness and Unmet Mental Health Needs.

Some of the most difficult clinical ethics consultations involve patients who have both medical and mental health needs, as these cases can result in considerable moral distress on the part of the bedside staff. In this article we examine the issues that such consults raise through the illustrative example of a particular case: several years ago our ethics consultation service received a request from a critical care attending physician who was considering a rarely performed psychosurgical intervention to address intractable and life-threatening agitation and aggression in an adolescent patient for whom standard treatments had proven unsuccessful. We consider strategies that may be useful in addressing not only the ethical dilemmas or the clinical problems, but also the emotional, social, and moral distress that arise in delivering care in such complex cases, in which standard routine practices of care have been exhausted. In addition, we explore the processes that led to this situation and suggest ways to promote early recognition and intervention for similar cases in the future.

Communication Challenges of Oncologists and Intensivists Caring for Pediatric Oncology Patients: A Qualitative Study.

CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: The objective of this study was to describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of 10 physicians, including pediatric oncology and intensive care attendings and fellows. RESULTS: We identified key themes (three barriers and four facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision-making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and resource. CONCLUSION: We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.

Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study.

CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.

Ethics Rounds: In the Eye of a Social Media Storm.

Social media, no stranger to health care environments, is increasingly used by patients, families, clinicians, and institutions to interact and engage in new ways. The ethical challenges related to the use of social media in the clinical setting are familiar, yet come with a novel twist, including the possibility of having a conflict "go viral". Health care clinicians and institutions must understand and embrace these technologies, while at the same time promoting policies and practices that ensure the ethically appropriate use of social media and address strategies for preventing and responding to a social media crisis.

Pediatricians' Experience with Clinical Ethics Consultation: A National Survey.

OBJECTIVE: To conduct a national survey of pediatricians' access to and experience with clinical ethics consultation. STUDY DESIGN: We surveyed a randomly selected sample of 3687 physician members of the American Academy of Pediatrics. We asked about their experiences with ethics consultation, the helpfulness of and barriers to consultation, and ethics education. Using a discrete choice experiment with maximum difference scaling, we evaluated which traits of ethics consultants were most valuable. RESULTS: Of the total sample of 3687 physicians, 659 (18%) responded to the survey. One-third of the respondents had no experience with clinical ethics consultation, and 16% reported no access to consultation. General pediatricians were less likely to have access. The vast majority (90%) who had experience with consultation had found it helpful. Those with fewer years in practice were more likely to have training in ethics. The most frequently reported issues leading to consultation concerned end-of-life care and conflicts with patients/families or among the team. Intensive care unit physicians were more likely to have requested consultation. Mediation skills and ethics knowledge were the most highly valued consultant characteristics, and representing the official position of the hospital was the least-valued characteristic. CONCLUSION: There is variability in pediatricians' access to ethics consultation. Most respondents reported that consultation had been helpful in the past. Determining ethically appropriate end-of-life care and mediation of disagreements are common reasons that pediatricians request consultation.

Pediatric palliative care and pediatric medical ethics: opportunities and challenges.

The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.

Community views on neurologic emergency treatment trials.

STUDY OBJECTIVE: We improve our understanding of the community consultation process for acute neurologic emergency trials conducted under the federal regulations for Exception From Informed Consent (EFIC) for emergency research. METHODS: We performed a qualitative study using focus groups to collect data from patients with a previous stroke or brain injury and their families and from young men at risk for traumatic brain injury. Discussions were transcribed, coded, and analyzed for major themes and subthemes. RESULTS: Five focus groups, involving 40 participants, were convened. Major themes included the awareness and understanding of key clinical trial concepts, including prominent concerns about placebo and therapeutic misconception; inability to obtain informed consent and acceptable surrogate decision-making; EFIC in emergency research and whether existing regulations are acceptable; specific trial design problems, including comparison to standard of care versus 2 competing active therapies; and community consultation and representation. CONCLUSION: In this study sample, EFIC trials were deemed appropriate and acceptable for acute neurologic emergency research. Education, along with open discussion about basic clinical research concepts, disease- and trial-specific information, and potential surrogate decision-making, was essential to determine the acceptability of an EFIC trial. Approval by institutional review boards was highly regarded as a means of human protection and effective community consultation for such trials. A data repository of information gained from similar qualitative research may help investigators and regulators who wish to plan, conduct, review, and provide oversight for acute neurologic emergency trials under EFIC regulations.