BACKGROUND AND OBJECTIVE: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS.

METHOD: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care.

RESULTS: Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS.

CONCLUSION: Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.

BACKGROUND AND OBJECTIVES: National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS.

METHODS: Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses.

RESULTS: One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families.

CONLUSIONS: The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.

BACKGROUND AND OBJECTIVE: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS.

METHOD: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care.

RESULTS: Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS.

CONCLUSION: Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.

BACKGROUND: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.

METHODS: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains.

RESULTS: 104 children's hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children's hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5.

CONCLUSIONS: While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.

BACKGROUND: Ethics consultation services (ECS) support clinical decision-making when there are values conflicts. Accessibility to ECS by patients and families is required to benefit from the service. Multiple national guidelines encourage ready availability of ECS to all stakeholders including patients and families.

METHODS: All facilities registered with the Children's Hospital Association (n = 190) were contacted using a protocol modeled after an adult ethics consultation practice study. After an online search to identify an ethics contact, calls were made to hospital operators, and each transfer was documented as well as time to ECS contact. If no contact was identified on progression through the call protocol or on completion of the call pathway on 3 occasions each spaced by 1 week, the ECS was labeled "unreached."

RESULTS: Only 36 (19%) ECS contacts were identified via online search with the remainder 154 (81%) requiring phone calls. Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. Thirty ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts. Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration was 25 minutes. Callback times averaged 5.8 business days after voicemail.

CONCLUSIONS: This study revealed limited reachability of ECS. ECS should make their contact information available online and improve information available to operators.

BACKGROUND: Ethics consultation services (ECS) support clinical decision-making when there are values conflicts. Accessibility to ECS by patients and families is required to benefit from the service. Multiple national guidelines encourage ready availability of ECS to all stakeholders including patients and families.

METHODS: All facilities registered with the Children's Hospital Association (n = 190) were contacted using a protocol modeled after an adult ethics consultation practice study. After an online search to identify an ethics contact, calls were made to hospital operators, and each transfer was documented as well as time to ECS contact. If no contact was identified on progression through the call protocol or on completion of the call pathway on 3 occasions each spaced by 1 week, the ECS was labeled "unreached."

RESULTS: Only 36 (19%) ECS contacts were identified via online search with the remainder 154 (81%) requiring phone calls. Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. Thirty ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts. Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration was 25 minutes. Callback times averaged 5.8 business days after voicemail.

CONCLUSIONS: This study revealed limited reachability of ECS. ECS should make their contact information available online and improve information available to operators.

<p>Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.</p>

<p>The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.</p>

Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.

<p><strong>OBJECTIVE: </strong>To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.</p>

<p><strong>STUDY DESIGN: </strong>A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus.</p>

<p><strong>RESULTS: </strong>A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education.</p>

<p><strong>CONCLUSIONS: </strong>This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.</p>