AIM: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease.

METHODS: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.

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.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care.

RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care.

CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

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.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care.

RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care.

CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

<p><strong>CONTEXT: </strong>Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team.</p>

<p><strong>OBJECTIVES: </strong>1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills.</p>

<p><strong>METHODS: </strong>Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility.</p>

<p><strong>RESULTS: </strong>Fifteen professionals and 6 parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting 5 distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings.</p>

<p><strong>CONCLUSION: </strong>A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.</p>