How to hold an effective NICU family meeting: capturing parent perspectives to build a more robust framework.

OBJECTIVE: To record the content and parental perceptions of family meetings in a Neonatal Intensive Care Unit (NICU) to improve existing frameworks for facilitating these meetings. STUDY DESIGN: A prospective, mixed-methods study. NICU family meetings were audio-recorded, transcribed, and analyzed by an iteratively derived coding framework until thematic saturation. We used descriptive statistics of parental post-meeting assessments. RESULTS: Qualitative analysis of 21 meetings identified both Communication Facilitators and Barriers. Facilitators included use of visual-aids and participation of social workers to clarify information for parents. Barriers included staff rarely eliciting parental comprehension (3 meetings) or concerns (5) before providing new information, resulting in 39% of parents reporting they didn't ask questions they wanted to ask. In 33% of meetings an important participant was absent. CONCLUSIONS: This novel qualitative and quantitative dataset of NICU family meetings highlights areas for improving communication. Attention to these components may improve parental perceptions of family meetings.

The Pope and the Possibilities of the Path Less Traveled.

Pope Francis's Address to the participants of the conference "Yes to Life! Taking Care of the Precious Gift of Life in Its Frailty" powerfully touches on multiple important aspects of the care of children experiencing "extreme frailty." It is a deeply moral account of the challenges that health-care providers, families, and patients confront in the technologically sophisticated and confusing world of modern medicine. This commentary draws upon a clinical case to contextualize the Pope's words in the hope of achieving a nuanced understanding of what pediatric palliative care offers to children experiencing extreme frailty. In his Address, the Pope asks health-care providers to consider an approach to frailty and suffering that allows for the opportunity to experience transcendent meaning and transpersonal value, and recognizes that it would be difficult to achieve these goals without the comprehensive and capable care offered by pediatric palliative care specialists.

Ethics of Outbreaks Position Statement. Part 1: Therapies, Treatment Limitations, and Duty to Treat.

OBJECTIVES: Outbreaks of disease, especially those that are declared a Public Health Emergency of International Concern, present substantial ethical challenges. Here we start a discourse (with a continuation of the dialogue in Ethics of Outbreaks Position Statement. Part 2: Family-Centered Care) concerning the ethics of the provision of medical care, research challenges and behaviors during a Public Health Emergency of International Concern with a focus on the proper conduct of clinical or epidemiologic research, clinical trial designs, unregistered medical interventions (including vaccine introduction, devices, pharmaceuticals, who gets treated, vulnerable populations, and methods of data collection), economic losses, and whether there is a duty of health care providers to provide care in such emergencies, and highlighting the need to understand cultural diversity and local communities in these efforts. DESIGN: Development of a Society of Critical Care Medicine position statement using literature review and expert consensus from the Society of Critical Care Medicine Ethics committee. The committee had representation from ethics, medical philosophy, critical care, nursing, internal medicine, emergency medicine, pediatrics, anesthesiology, surgery, and members with international health and military experience. SETTING: Provision of therapies for patients who are critically ill or who have the potential of becoming critically ill, and their families, regarding medical therapies and the extent of treatments. POPULATION: Critically ill patients and their families affected by a Public Health Emergency of International Concern that need provision of medical therapies. INTERVENTIONS: Not applicable. MAIN RESULTS: Interventions by high income countries in a Public Health Emergency of International Concern must always be cognizant of avoiding a paternalistic stance and must understand how families and communities are structured and the regional/local traditions that affect public discourse. Additionally, the obligations, or the lack of obligations, of healthcare providers regarding the treatment of affected individuals and communities must also be acknowledged. Herein, we review such matters and suggest recommendations regarding the ethics of engagement in an outbreak that is a Public Health Emergency of International Concern.

Ethics of Outbreaks Position Statement. Part 2: Family-Centered Care.

OBJECTIVES: Continue the dialogue presented in Ethics of Outbreaks Position Statement. Part 1, with a focus on strategies for provision of family-centered care in critical illness during Pubic Health Emergency of International Concern. DESIGN: Development of a Society of Critical Care Medicine position statement using literature review, expert consensus from the Society of Critical Care Medicine Ethics Committee. A family member of a patient who was critically ill during a natural disaster served on the writing panel and provided validation from a family perspective to the recommendations. SETTING: Provision of family-centered care and support for patients who are critically ill or who have the potential of becoming critically ill, and their families, during a Pubic Health Emergency of International Concern. INTERVENTIONS: Communication; family support. MEASUREMENTS AND MAIN RESULTS: Family-centered interventions during a Pubic Health Emergency of International Concern include understanding how crisis standards may affect regional and local traditions. Transparently communicate changes in decision-making authority and uncertainty regarding treatments and outcomes to the family and community. Assess family coping, increase family communication and support, and guide families regarding possible engagement strategies during crisis. Prepare the public to accept survivors returning to the community.

The Work of ASBH's Clinical Ethics Consultation Affairs Committee: Development Processes Behind Our Educational Materials.

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.

Consent for organ donation after circulatory death at U.S. transplant centers.

BACKGROUND: Despite calls for a controlled organ donation after circulatory death (cDCD) consent process that is more rigorous, consistent, and transparent, little is known about the cDCD consent processes utilized by U.S. hospitals. The objective of this research was to describe the cDCD consent policies of U.S. transplant hospitals, including consent for antemortem interventions (AMI), in order to inform the development of a more rigorous and sound consent process. METHODS: Cross-sectional study data of cDCD policies of U.S. transplant hospitals were collected between July 2013 and October 2014. Respondents submitted their policies for investigator review and/or completed a 25-item Web-based survey describing their hospital's cDCD and AMI policies. There were 209 U.S. adult transplant hospitals identified through the Organ Procurement and Transplantation Network (OPTN). RESULTS: One hundred responses were received, representing 48% of all 209 U.S. transplant hospitals and 60% of the 168 transplant centers with an identified knowledgeable informant. In 79 policies (79%), organ procurement organization representatives (OPOs) are given sole responsibility for obtaining signed cDCD consent. Thirty-four policies (34%) give OPOs the responsibility for obtaining written AMI consent, 13 policies give it to treating physicians, and 6 policies state that AMI consent must be obtained collaboratively. Treating physicians have no delineated responsibilities in the cDCD and AMI consent process in 70 (70%) and 58 (58%) policies, respectively. We observed wide variability in the acceptability of first-person authorization (FPA) for cDCD and AMI; FPA was rejected as evidence of consent for cDCD and AMI in 7 and 11 policies, respectively. CONCLUSIONS: The cDCD consent policies of U.S. transplant hospitals are highly variable and inconsistent in addressing key aspects of the consent process. The major policy differences observed raise questions about what constitutes a sound and comprehensive cDCD consent policy.

Genetic testing of children for diseases that have onset in adulthood: the limits of family interests.

Two recent policy statements, one from the American Academy of Pediatrics and one from the American College of Medical Genetics, reach very different conclusions about the question of whether children should be tested for adult-onset genetic conditions. The American Academy of Pediatrics policy begins with the presumption that genetic testing for children should be driven by the best interest of the child. It recognizes the importance of preserving the child's open future, recommending that genetic testing for adult-onset diseases be deferred. The American College of Medical Genetics, by contrast, recommended testing children for at least some adult conditions, although it should be noted they have recently modified this recommendation. They justified this recommendation by arguing that it, in fact, was in the best interests of the child and family to receive this information. In this article, we analyze these 2 different positions and suggest ways that the seeming conflicts between them might be reconciled.

Evolving medical and surgical management of infants with trisomy 18.

PURPOSE OF REVIEW: To review the evolving management of infants/children with trisomy 18, the prognosis with and without medical intervention, the factors that have contributed to the evolving management strategies, and an approach to the formulation of healthcare management plans for newborns with trisomy 18. RECENT FINDINGS: There has been a trend from nonintervention for infants/children with trisomy 18 toward management to prolong life. It has become clear that the prognosis for infants/children with trisomy 18 is not as 'hopeless' as was once asserted. However, case series of patients with trisomy 18 managed with a goal of prolonging life are not adequate to evaluate the efficacy of these interventions. They are also not adequate to support the contention that they have no efficacy. In fact, anecdotal evidence and medical plausibility suggest that treatment can prolong life in some cases. This trend has been supported by a change in emphasis from a largely physician-directed model of medical decision-making to a collaborative model, which respects parents' rights to make healthcare decisions for their children and recognizes that judgments about outcomes are often subjective, and social networks, which support and advocate for children with trisomy 18 and their families. An approach to collaborative medical decision-making that is goal-directed is recommended. SUMMARY: Healthcare management approaches or policies that reject out of hand the goal of prolonging the life of any infant/child with trisomy 18 are not defensible. Management plans should be goal-directed, based on the physician-parent evaluation of the benefits and burdens of care options for the individual child.

Credentialing the clinical ethics consultant: an academic medical center affirms professionalism and practice.

In response to national trends calling for increasing accountability and an emerging dialogue within bioethics, we describe an effort to credential clinical ethicists at a major academic medical center.This effort is placed within the historical context of prior calls for credentialing and certification and efforts currently underway within organized bioethics to engage this issue.The specific details, and conceptual rationale, behind the NewYork-Presbyterian Hospital's graduated credentialing plan are shared as is their evolution and ratification within the context of institutional policy. While other programs will design their credentialing schema consistent with their local context and demographics, the description of one such effort is offered to be instructive to others who want to bring additional standardization to the assessment of the readiness and credentials of those who will engage in the practice of clinical ethics case consultation.

Consent for donation after cardiac death: a survey of organ procurement organizations.

CONTEXT: Despite the increasing number of policies governing organ donation after cardiac death (DCD), nothing is presently known about the informed consent process for DCD. Without guidelines, organ procurement organizations (OPOs) are likely to structure the consent process similarly to that for organ donation after brain death (DBD), despite important ethical differences between the 2 modes of organ recovery. OBJECTIVE: To describe informed consent practices used by OPOs for DCD. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional, internet-based survey of the 58 OPOs in the United States. MAIN OUTCOME MEASURES: OPO policies and reported levels of physician participation in the consent process for DCD. RESULTS: Seventeen OPOs completed the survey (29%). Responders and nonresponders did not differ by DCD volume over the last year or last 5 years. None of the OPO's policies require physician involvement in obtaining written informed consent; 94% of policies require only the OPO representative to obtain written consent for DCD and 6% state that either the OPO representative or the treating physician may obtain consent; 71% of OPOs reported that discussions with family regarding DCD occur with the treating physician present less than 51% of the time and 82% indicated that the OPO representative is solely involved in obtaining consent for DCD in the majority of cases. A total of 24% of OPOs require physicians to participate in obtaining consent for procedures performed prior to death exclusively for organ preservation. No differences were found between the OPO consent practices for DCD and DBD. CONCLUSIONS: None of the OPOs responding to this survey have a policy requirement for physician involvement in obtaining consent for DCD. These findings raise questions about the role of physicians in DCD and how best to maintain a patient- and family-centered focus on care for patients at the end of life while supporting organ recovery efforts.

Children undergoing heart transplant are at increased risk for postoperative vasodilatory shock.

OBJECTIVE: To determine the incidence of vasodilatory shock (VDS) in children after cardiopulmonary bypass (CPB), and to describe this syndrome of post-CPB VDS in children. DESIGN: Prospective, observational. SETTING: Pediatric and neonatal intensive care units in a tertiary care, children's hospital. PATIENTS: Three hundred children undergoing CPB. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Three hundred subjects undergoing CPB were evaluated for clinical evidence of VDS following CPB. The incidence of post-CPB VDS was 3%. Characteristics of children who developed VDS: higher peak lactate (6.2 +/- 2.6 vs. 3.0 +/- 2.1 mmol/L; p = 0.0002), higher peak serum blood urea nitrogen (18.5 +/- 4.6 vs. 15.6 +/- 7.2 mg/dL; p = 0.04), lower urine output (1.7 +/- 0.8 vs. 2.6 +/- 0.2 mL/kg/hr; p = 0.04), and fewer intensive care unit free days (14.9 +/- 9.0 vs. 21.1 +/- 7.2 days; p = 0.01). Univariate predictors for the development of post-CPB VDS included children who had heart transplantation (HT) (relative risk [RR], 9.8; 95% confidence interval [CI], 2.7-35.2) or ventricular assist device (VAD) placed (RR, 17.9; 95% CI, 3.8-84.1), a cardiomyopathy diagnosis (RR, 8.5; 95% CI, 2.3-31), age >12 years (RR, 4.5; 95% CI, 1.2-17.0), CPB time >180 minutes (RR, 7.1; 95% CI, 1.9-26.2), and preoperative ventricular dysfunction (RR, 3.7; 95% CI, 1.0-13.4). By stratified analysis, the only independent predictor for the development of VDS was undergoing HT/VAD. CONCLUSIONS: Post-CPB VDS is uncommon in children. However, children who undergo HT or VAD placement are at high risk for developing post-CPB VDS. Recognition that the overall incidence of post-CPB is low-except in the HT/VAD population-may help guide therapy in the pediatric post-CPB patient.

Successful placement of postpyloric enteral tubes using electromagnetic guidance in critically ill children.

OBJECTIVES: Initiation of postpyloric feeding is often delayed by difficulties in placement of enteral tubes. We evaluated the effectiveness of bedside postpyloric enteral tube (PET) placement using an electromagnetic (EM)-guided device. We hypothesized that: 1) EM-guided placement of PETs would be successful more often than standard blind placement with a shorter total time to successful placement and 2) the EM-guided technique would have similar overall costs to the standard technique. DESIGN: Prospective cohort trial with serial control groups in a pediatric intensive care unit at a tertiary care children's hospital. INTERVENTIONS: We collected data on a cohort of consecutive pediatric intensive care unit patients who underwent PET placement by standard blind technique followed by a cohort who underwent EM-guided placement. The primary outcome measure was successful placement determined by abdominal radiography. MEASUREMENTS AND MAIN RESULTS: One hundred seven patients were evaluated in the trial: 57 in the standard group and 50 in the EM-guided group. Demographic data, percent intubated, and admission diagnosis were similar in both groups. Forty-one of 50 patients (82%) in the EM-guided group had successful placement compared with 22 of 57 in the standard group (38%) (p < 0.0001). The average time to successful placement was 1.7 vs. 21 hours in the EM-guided group and standard group, respectively (p < 0.0001). Children in the EM-guided group received fewer radiographs (p = 0.007) and were given more prokinetic drugs (p = 0.045). There were no episodes of pneumothorax in either group. After controlling for prokinetic drug use, EM-guided placement was more likely to result in successful placement than the standard blind technique (odds ratio 6.4, 95% confidence interval 2.5-16.3). An annual placement rate of 250 PETs by EM guidance, based on our institution's current utilization rates, is associated with a cost savings of $55.46 per PET placed. CONCLUSION: EM guidance is an efficient and cost-effective method of bedside PET placement.

Intracranial hemorrhage in premature neonates treated with extracorporeal membrane oxygenation correlates with conceptional age.

OBJECTIVE: To determine the effect of patient age on the risk of intracranial hemorrhage (ICH) in premature neonates treated with extracorporeal membrane oxygenation (ECMO). STUDY DESIGN: This was a retrospective cohort study of neonates of <37 weeks' gestation treated with ECMO in the years 1992 through 2000 and reported to the Extracorporeal Life Support Organization Registry (n=1524). The relation between ICH and patient age, defined as gestational age, postnatal age (PNA), and postconceptional age (PCA), was determined with the use of multiple logistic regression analysis. RESULTS: PNA was inversely correlated with ICH in the univariate analysis (P=.01) but not in the multivariate analysis (P=.36). PCA showed a strong univariate correlation with decreasing ICH: 26% of patients

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients.

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study. PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.

Guidelines for perioperative do-not-resuscitate policies.

This paper reviews some of the difficulties in implementing perioperative reevaluation of do-not-resuscitate (DNR) orders and suggests several strategies for perioperative DNR policies. Policies should be written, designed and implemented at the level of the institution, and be sufficiently flexible to permit the tailoring of the perioperative DNR order to the individual patient. Policies should unambiguously state that reevaluation is required, delineate responsibilities for reevaluating the DNR order, state all the available options, define the necessary documentation, and list resources for help.