Prenatally-diagnosed renal failure: an ethical framework for decision-making.

The Children's Hospital Working Group has developed an ethical framework to guide patient care and research for prenatally diagnosed severe renal anomalies. It identifies ethical challenges in communication, timing of decisions and scarce resources. Key elements include shared decision-making, establishing a trusting relationship, and managing disagreement. The ethical framework will be used to develop a clinical pathway that operationalizes the key values of trust, honesty, transparency, beneficence, nonmaleficence, respecting parental authority, professional integrity, and justice.

Outcomes of dialysis in neonates with anuric end-stage renal disease at birth: ethical considerations.

INTRODUCTION: We present a case series of neonates with anuric ESRD undergoing renal replacement therapy (RRT) and discuss the associated ethical implications of RRT in this population. METHODS: We reviewed patients who initiated RRT within 1 week of life due to anuric ESRD from 2009-2019 at a single tertiary center. Primary outcomes were receipt of renal transplant (RT), one-year survival, and overall survival. RESULTS: Five patients met the inclusion criteria. Two patients received an RT. One-year survival was 80%, while overall survival was 60% with a median follow-up of 18 months. In the 2 still-living patients who have not undergone RT, they are ineligible, one due to recent malignancy and the other from acquired cardiovascular comorbidities. CONCLUSION: Patients with anuric ESRD requiring RRT undergo multiple treatment challenges with low RT and survival rates. These findings should be shared with families considering intervention for cases of severe renal disease diagnosed prenatally.

Development and application of an ethical framework for pediatric metabolic and bariatric surgery evaluation.

BACKGROUND: As severe obesity continues to rise among youth, metabolic and bariatric surgery (MBS) will increasingly be used as a treatment of choice for durable weight loss and improvement of obesity-related complications. MBS for youth with intellectual and developmental disabilities (IDD) and for preadolescents has raised ethical questions. OBJECTIVES: The purpose of this article is to present the creation and application of an ethical framework that supports why MBS should be considered in pediatrics based on the principle of justice without automatic exclusions. This framework also provides a guide for how to conduct a robust, ethically grounded evaluation of pediatric patients presenting for MBS in general, and among subpopulations including youth with IDD and preadolescents. SETTING: Academic medical center, United States. METHODS: An ethical framework was developed and applied through a collaboration between an MBS center at a children's hospital and the institution's ethics consult service. RESULTS: Application of the ethical framework to address 4 core ethical questions is illustrated using 2 hypothetical cases: 1 that highlights an adolescent with IDD and 1 that highlights a preadolescent. CONCLUSIONS: We have demonstrated the application of a novel, overarching framework to conduct the ethical evaluation of youth presenting for MBS. This framework resulted from a collaboration between MBS and ethics consult teams and has the potential to be used as a prototype for other youth-focused MBS programs. Next steps include prospective data collection to test the framework and determine its validity in the target population.

Duties When an Anonymous Student Health Survey Finds a Hot Spot of Suicidality.

Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that included school-level analysis discovered a school with alarmingly prevalent student suicidality. Given confidentiality protocols typical of surveillance, the surveyors were uncertain whether and how to intervene. We searched literature for duties to warn at-risk groups discovered during public health surveillance, but we found no directly applicable guidance or cases. Reasoning by analogy, we conclude that surveyors should contact the school's leaders to call attention to its outlier status, but public warning is unwarranted. However, such an ad hoc decision to issue a warning, even if only to school leaders, raises significant practical, legal and ethical issues. National public health and education associations should produce guidance that clarifies ethical and legal duties owed to schools and students involved in population health-risk surveillance.

The role of ethics consultation in decision making for bariatric surgery in pediatrics.

The decision to pursue metabolic and bariatric surgery (MBS) for pediatric patients has become increasingly accepted by patients and their families and by health care professionals. The advancement of pre- and post-operative MBS guidelines, based on accumulating evidence for safety, efficacy, and cost-effectiveness help to map the clinical pathway for MBS consideration. Ethical issues remain possible for each case, however, and consultation with ethical experts can provide clarity in the consideration of MBS. Specifically, ethical issues related to principles of autonomy, justice, beneficence, and non-maleficence may need to be resolved based on patient characteristics, including preadolescent patients and those who present with intellectual disabilities. Institutions that offer MBS for pediatric patients will benefit from collaborating with ethics consultants to develop a structured approach that helps ensure that ethical principles have been adequately addressed for patients presenting for MBS.

Rural Health Care and an Ethics of Familiarity.

This commentary focuses on the narratives written from a variety of voices describing the unique challenges and rewards faced in rural health care. The authors speak from various areas of the country and from many professions including medicine, nursing, social work, and ethics and reflect the experiences of learners, new graduates, and long-time practitioners. The authors also represent people who were raised in rural environments and those who are from more urban settings. The commentary includes a discussion of some major themes from the rural bioethics literature that are reflected in these very personal narratives. The themes include lack of resources; overlapping relationships; resiliency; the need for partnerships and collaboration; and creativity. The commentary will also explore the dichotomy between learners and experienced practitioners and the possible missing voice of practitioners who could not tolerate the challenges and who left rural practice.

The Role of Physicians in the Allocation of Health Care: Is Some Justice Better than None?

Physicians' advocacy obligations are best understood as going beyond advocacy on behalf of individual patients, which I call the "individualistic view," to include advocacy for intelligent research-based allocation schemes that promote good outcomes and cost-effective care for all patients, which I call the "systemic view." This systemic view includes moving beyond self-interest to promote less-wasteful and more cost-conscious allocation decisions and the setting of priorities at all levels to expand health care access. It includes physician involvement in discussions with patients in the context of clinical care, involvement in the formulation and administration of benefit structures and other allocation policies, and, finally, involvement in promoting public dialogue about health care priorities. This involvement is based on a concept of a deliberative process that can result in "just enough" decisions within systems for the preservation and promotion of health care and other societal goods.

Reproductive Health Care in Catholic Facilities: A Scoping Review.

OBJECTIVE: Given the rise in Catholic ownership of U.S. health care facilities, we aimed to examine reproductive health care provision and patient outcomes. We performed a scoping review, which maps the literature and considers inclusion of studies that are not specifically quantitative. DATA SOURCES: We searched five databases (MEDLINE, EMBASE, Web of Science and Cochrane Library, ClinialTrials.gov) from inception through August 2018 using terms related to reproductive health care and religion. METHODS OF STUDY SELECTION: We screened 2,906 studies. Articles were included if in English, included primary research data, and referenced U.S.-based Catholic facilities. We reviewed the reference lists of included articles. We excluded articles that addressed the relationship of patient or health care provider religion to provision of reproductive services, described reproductive health care services in non-Catholic facilities, or reported legal cases or concerns. Two independent reviewers screened all citations, a third reviewer resolved differences, and all three reviewers categorized included citations. TABULATION, INTEGRATION, AND RESULTS: We included 27 studies. Investigators most commonly focused on the provision of emergency contraception (n=9) or other contraceptive and sterilization methods (n=7); few focused on a range of family planning methods (n=3), natural family planning (n=2), ectopic pregnancy management (n=2), abortion care (n=2), miscarriage management (n=1), and infertility care (n=1). The most common study designs were cross-sectional (18/27 [67%]) and qualitative investigations (6/27 [22%]). Common data collection approaches included surveys, interviews, and mystery caller designs. Two studies involved authors with Catholic hospital affiliations and one of these reported patient outcomes; no other patient outcome reports were found. Studies cited restrictions to care in comparison with non-Catholic settings and multisite studies demonstrated variable rates of provision of reproductive health services across Catholic sites. CONCLUSIONS: Despite the significant proportion and recent growth of Catholic health care within the U.S. health care sector, little is known about reproductive health outcomes in these settings and in comparison with other settings.

Colorado's New Proxy Law Allowing Physicians to Serve as Proxies: Moving from Statute to Guidelines.

In 2016, the Colorado legislature passed an amendment to Colorado's medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.

Colorado's New Proxy Law: Moving from Statute to Guidelines.

In 2016, the Colorado legislature passed an amendment to Colorado's medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.

Giving Voice to the Voiceless: The Colorado Response to Unrepresented Patients.

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado's effort to address decision making for unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included.

Disruptive mood dysregulation disorder in offspring of parents with depression and bipolar disorder.

BackgroundIt has been suggested that offspring of parents with bipolar disorder are at increased risk for disruptive mood dysregulation disorder (DMDD), but the specificity of this association has not been established.AimsWe examined the specificity of DMDD to family history by comparing offspring of parents with (a) bipolar disorder, (b) major depressive disorder and (c) a control group with no mood disorders.MethodWe established lifetime diagnosis of DMDD using the Schedule for Affective Disorders and Schizophrenia for School Aged Children for DSM-5 in 180 youth aged 6-18 years, including 58 offspring of parents with bipolar disorder, 82 offspring of parents with major depressive disorder and 40 control offspring.ResultsDiagnostic criteria for DMDD were met in none of the offspring of parents with bipolar disorder, 6 of the offspring of parents with major depressive disorder and none of the control offspring. DMDD diagnosis was significantly associated with family history of major depressive disorder.ConclusionsOur results suggest that DMDD is not specifically associated with a family history of bipolar disorder and may be associated with parental depression.

Domains of quality for clinical ethics case consultation: a mixed-method systematic review.

BACKGROUND: "Clinical ethics consultation" (CEC) is the provision of consultative services by an individual or team with the aim of helping health professionals, patients, and their families grapple with difficult ethical issues arising during health care. There are almost 25,000 articles in the worldwide literature on CEC, but very few explicitly address measuring the quality of CEC. Many more address quality implicitly, however. This article describes a rigorous protocol for compiling the diverse literature on CEC, analyzing it with a quality measurement lens, and seeking a set of potential quality domains for CEC based on areas of existing, but hitherto unrecognized, consensus in the literature. METHODS/DESIGN: This mixed-method systematic review will follow a sequential pattern: scoping review, qualitative synthesis, and then a quantitative synthesis. The scoping review will include categorizing all quality measures for CEC discussed in the literature, both quantitative and qualitative. The qualitative synthesis will generate a comprehensive analytic framework for understanding the quality of CEC and is expected to inform the quantitative synthesis, which will be a meta-analysis of studies reporting the effects of CEC on pre-specified clinical outcomes. DISCUSSION: The literature on CEC is broad and diverse and has never been examined with specific regard to quality measurement. We propose a novel mixed-methods approach to compile and synthesize this literature and to derive a framework for assessing quality in CEC. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42015023282.

Stimulant Medication and Psychotic Symptoms in Offspring of Parents With Mental Illness.

BACKGROUND: Stimulants, such as methylphenidate, are among the most commonly used medications in children and adolescents. Psychotic symptoms have been reported as rare adverse reactions to stimulants but have not been systematically inquired about in most previous studies. Family history of mental illness may increase the vulnerability to drug-induced psychotic symptoms. We examined the association between stimulant use and psychotic symptoms in sons and daughters of parents with major mood and psychotic disorders. METHODS: We assessed psychotic symptoms, psychotic-like experiences, and basic symptoms in 141 children and youth (mean ± SD age: 11.8 ± 4.0 years; range: 6-21 years), who had 1 or both parents with major depressive disorder, bipolar disorder, or schizophrenia, and of whom 24 (17.0%) had taken stimulant medication. RESULTS: Psychotic symptoms were present in 62.5% of youth who had taken stimulants compared with 27.4% of participants who had never taken stimulants. The association between stimulant use and psychotic experiences remained significant after adjustment for potential confounders (odds ratio: 4.41; 95% confidence interval: 1.82-10.69; P = .001) and was driven by hallucinations occurring during the use of stimulant medication. A temporal relationship between use of stimulants and psychotic symptoms was supported by an association between current stimulant use and current psychotic symptoms and co-occurrence in cases that were assessed on and off stimulants. CONCLUSIONS: Psychotic symptoms should be monitored during the use of stimulants in children and adolescents. Family history of mood and psychotic disorders may need to be taken into account when considering the prescription of stimulants.

The DalHouses: 100 new photographs of houses with ratings of typicality, familiarity, and degree of similarity to faces.

Houses have often been used as comparison stimuli in face-processing studies because of the many attributes they share with faces (e.g., distinct members of a basic category, consistent internal features, mono-orientation, and relative familiarity). Despite this, no large, well-controlled databases of photographs of houses that have been developed for research use currently exist. To address this gap, we photographed 100 houses and carefully edited these images. We then asked 41 undergraduate students (18 to 31 years of age) to rate each house on three dimensions: typicality, likeability, and face-likeness. The ratings had a high degree of face validity, and analyses revealed a significant positive correlation between typicality and likeability. We anticipate that this stimulus set (i.e., the DalHouses) and the associated ratings will prove useful to face-processing researchers by minimizing the effort required to acquire stimuli and allowing for easier replication and extension of studies. The photographs of all 100 houses and their ratings data can be obtained at http://dx.doi.org/10.6084/m9.figshare.1279430.

A familial risk enriched cohort as a platform for testing early interventions to prevent severe mental illness.

BACKGROUND: Severe mental illness (SMI), including schizophrenia, bipolar disorder and severe depression, is responsible for a substantial proportion of disability in the population. This article describes the aims and design of a research study that takes a novel approach to targeted prevention of SMI. It is based on the rationale that early developmental antecedents to SMI are likely to be more malleable than fully developed mood or psychotic disorders and that low-risk interventions targeting antecedents may reduce the risk of SMI. METHODS/DESIGN: Families Overcoming Risks and Building Opportunities for Well-being (FORBOW) is an accelerated cohort study that includes a large proportion of offspring of parents with SMI and embeds intervention trials in a cohort multiple randomized controlled trial (cmRCT) design. Antecedents are conditions of the individual that are distressing but not severely impairing, predict SMI with moderate-to-large effect sizes and precede the onset of SMI by at least several years. FORBOW focuses on the following antecedents: affective lability, anxiety, psychotic-like experiences, basic symptoms, sleep problems, somatic symptoms, cannabis use and cognitive delay. Enrolment of offspring over a broad age range (0 to 21 years) will allow researchers to draw conclusions on a longer developmental period from a study of shorter duration. Annual assessments cover a full range of psychopathology, cognitive abilities, eligibility criteria for interventions and outcomes. Pre-emptive early interventions (PEI) will include skill training for parents of younger children and courses in emotional well-being skills based on cognitive behavioural therapy for older children and youth. A sample enriched for familial risk of SMI will enhance statistical power for testing the efficacy of PEI. DISCUSSION: FORBOW offers a platform for efficient and unbiased testing of interventions selected according to best available evidence. Since few differences exist between familial and 'sporadic' SMI, the same interventions are likely to be effective in the general population. Comparison of short-term efficacy of PEI on antecedents and the long term efficacy for preventing the onset of SMI will provide an experimental test of the etiological role of antecedents in the development of SMI.