Primary Intensivists and Nurses for Long-Stay Patients: A Survey of Practices and Perceptions at Academic PICUs.

OBJECTIVES: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived. DESIGN: A cross-sectional survey. SETTING: U.S. PICUs with accredited Pediatric Critical Care Medicine fellowships. SUBJECTS: One senior physician and one senior nurse at each institution. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Separate but largely analogous questionnaires for intensivists and nurses were created using an iterative process to enhance content/face validity and readability. Sixty-seven intensivists (representing 93% of the 72 institutions with fellowship programs and their PICUs) and 59 nurses (representing 82%) responded. Twenty-four institutions utilize primary intensivists; 30 utilize primary nurses; and 13 utilize both. Most institutions use length of stay and/or other criteria (e.g., medical complexity) for eligibility. Commonly, not all patients that meet eligibility criteria receive primaries. Primary providers are overwhelmingly volunteers, and often only a fraction of providers participate. Primary intensivists at a large majority (>75%) of institutions facilitate information sharing and decision-making, attend family/team meetings, visit patients/families regularly, and are otherwise available upon request. Primary nurses at a similar majority of institutions provide consistent bedside care, facilitate information sharing, and attend family/team meetings. A large majority of respondents thought that primary intensivists increase patient/family satisfaction, reduce their stress, improve provider communication, and reduce conflict, whereas primary nurses similarly increase patient/family satisfaction. More than half of respondents shared that these practices can sometimes require effort (e.g., time and emotion), complicate decision-making, and/or reduce staffing flexibility. CONCLUSIONS: Primary practices are potential strategies to augment rotating PICU care models and better serve the needs of long-stay and other patients. These practices are being utilized to varying extents and with some operationalization uniformity at large, academic PICUs.

Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review.

OBJECTIVE: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions. DATA SOURCES: PubMed (MEDLINE and PubMed Central), EMBASE, CINAHL, PsycINFO, and Scopus. STUDY SELECTION: We reviewed published articles (2001-2022) that examined six themes within PGOCC contextualized to the PICU: 1) caregiver perspectives, 2) clinician perspectives, 3) documentation patterns, 4) communication skills training for clinicians, 5) family conferences, and 6) prospective interventions to improve caregiver-clinician communication. DATA EXTRACTION: Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology. DATA SYNTHESIS: Of 1,420 publications screened, 65 met criteria for inclusion with several key themes identified. Parent and clinician perspectives highlighted the need for clear, timely, and empathetic prognostic communication. Communication skills training programs are evaluated by a participant's self-perceived improvement. Caregiver and clinician views on quality of family meetings may be discordant. Documentation of PGOCCs is inconsistent and most likely to occur shortly before death. Only two prospective interventions to improve caregiver-clinician communication in the PICU have been reported. The currently available studies reflect an overrepresentation of bereaved White, English-speaking caregivers of children with known chronic conditions. CONCLUSIONS: Future research should identify evidence-based communication practices that enhance caregiver-clinician PGOCC in the PICU and address: 1) caregiver and clinician perspectives of underserved and limited English proficiency populations, 2) inclusion of caregivers who are not physically present at the bedside, 3) standardized communication training programs with broader multidisciplinary staff inclusion, 4) improved design of patient and caregiver educational materials, 5) the development of pediatric decision aids, and 6) inclusion of long-term post-PICU outcomes as a measure for PGOCC interventions.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

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.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.

Bioethics for Neonatal Cardiac Care.

BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.

Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.

Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = -0.24; 95% confidence interval [CI] = -0.36 to -0.01; p < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = -0.01; 95% CI = -0.02 to -0.001; p ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed.

Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.

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.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

Communication training for inter-specialty clinicians.

BACKGROUND: Inter-specialty clinicians often co-lead family conferences for hospitalised patients. Families frequently report receiving different messages from different clinicians. We developed a communication training workshop that crosses disciplines and co-trains clinicians in one setting to create a culture of delivering a unified message. METHODS: We developed a 2-day paediatric communication skills workshop to teach the skills necessary to conduct a family conference. The workshop was targeted at nurse-practitioners and faculty clinicians representing the different specialties that co-manage children in an intensive care unit. Our primary outcomes were learner self-assessment of skills attainment and workshop satisfaction. We also evaluated the feasibility of recruiting busy clinicians. RESULTS: Fifteen clinicians, including eight critical care faculty members (80% of eligible participants), three subspecialty faculty members (100% of eligible participants) and four nurse-practitioners (100% of eligible participants), participated. Learners' self-reported confidence improved in all communication metrics assessed. From pre- to post-workshop, confidence increased from 39% to 94% for 'giving bad news' (p < 0.05), from 50% to 83% for 'conducting a family conference' (p < 0.05), and from 39% to 100% for 'eliciting a family's values/preferences (p < 0.05). Every learner rated the workshop as important to their clinical practice and 100% would strongly recommend it to others. All reported the time commitment was not burdensome and 74% would choose this 2-day format over shorter formats. When clinicians learn together, they are more likely to speak the same language when communicating with each other, and ultimately to deliver the same message to families CONCLUSIONS: An inter-specialty communication training workshop for different types of clinician was well received. It is feasible to co-train different types of clinician in a joint session. When clinicians learn together, they are more likely to speak the same language when communicating with each other, and ultimately to deliver the same message to families.

Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection.

The families of children with chronic or serious illness are sometimes faced with difficult decisions never previously imagined. We offer a stepwise approach in building a human connection with these families to support them through the decision-making process. We encourage the clinician to stop talking and to actively listen and find common ground. We suggest that offering open and honest information begins with an invitation. We encourage clinicians to explore concepts with the family, including their fears and hopes. We discuss nurturing an emotional connection between the child and family and describe ways to discover a family's preference for involvement in the decision-making process. Central to supporting a family is to place infinite value on the life of their child. We argue that attention to these matters will help the clinician remain in sync with the family to ensure meaningful and high-quality decision-making during highly vulnerable times for families.

Parental Sources of Support and Guidance When Making Difficult Decisions in the Pediatric Intensive Care Unit.

OBJECTIVE: To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and guidance to anxiety, depression, and positive and negative affect. STUDY DESIGN: This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72 hours. Parents completed standardized instruments and a novel sources of support and guidance assessment. RESULTS: Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision. Descriptive analysis revealed a broad distribution for the sources of support and guidance items related to spirituality. Parents tended to fall into 1 of 2 groups when we used latent class analysis: the more-spiritual group (n = 47; 55%) highly ranked "what my child wants" (P = .023), spouses (P = .002), support groups (P = .003), church community (P < .001), spiritual leader (P < .001), higher power (P < .001), and prayer (P < .001) compared with the less-spiritual group (n = 39; 45%). The more-spiritual parents had greater positive affect scores (P = .005). Less-spiritual parents had greater depression scores (P = .043). CONCLUSIONS: Parents rely most on physicians, nurses, and friends and extended family when making difficult decisions for their critically ill child. Respondents tended to fall into 1 of 2 groups where the more-spiritual respondents were associated with greater positive affect and may be more resistant to depression.

Parental decision-making preferences in the pediatric intensive care unit.

OBJECTIVE: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. DESIGN: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010. SETTING: Pediatric intensive care unit at The Children's Hospital of Philadelphia. PARTICIPANTS: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. INTERVENTIONS: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. MEASUREMENTS AND MAIN RESULTS: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. CONCLUSIONS: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.