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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.PubMed (MEDLINE and PubMed Central), EMBASE, CINAHL, PsycINFO, and Scopus.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.Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology.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.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.

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

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.

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

With decreasing mortality in PICUs, a growing number of survivors experience long-lasting physical impairments. Early physical rehabilitation and mobilization during critical illness are safe and feasible, but little is known about the prevalence in PICUs. We aimed to evaluate the prevalence of rehabilitation for critically ill children and associated barriers.National 2-day point prevalence study.Eighty-two PICUs in 65 hospitals across the United States.All patients admitted to a participating PICU for greater than or equal to 72 hours on each point prevalence day.None.The primary outcome was prevalence of physical therapy- or occupational therapy-provided mobility on the study days. PICUs also prospectively collected timing of initial rehabilitation team consultation, clinical and patient mobility data, potential mobility-associated safety events, and barriers to mobility. The point prevalence of physical therapy- or occupational therapy-provided mobility during 1,769 patient-days was 35% and associated with older age (adjusted odds ratio for 13-17 vs3 yr, 2.1; 95% CI, 1.5-3.1) and male gender (adjusted odds ratio for females, 0.76; 95% CI, 0.61-0.95). Patients with higher baseline function (Pediatric Cerebral Performance Category, ≤ 2 vs2) less often had rehabilitation consultation within the first 72 hours (27% vs 38%; p0.001). Patients were completely immobile on 19% of patient-days. A potential safety event occurred in only 4% of 4,700 mobility sessions, most commonly a transient change in vital signs. Out-of-bed mobility was negatively associated with the presence of an endotracheal tube (adjusted odds ratio, 0.13; 95% CI, 0.1-0.2) and urinary catheter (adjusted odds ratio, 0.28; 95% CI, 0.1-0.6). Positive associations included family presence in children less than 3 years old (adjusted odds ratio, 4.55; 95% CI, 3.1-6.6).Younger children, females, and patients with higher baseline function less commonly receive rehabilitation in U.S. PICUs, and early rehabilitation consultation is infrequent. These findings highlight the need for systematic design of rehabilitation interventions for all critically ill children at risk of functional impairments.

Introduction Long-stay critically ill patients in the Pediatric Intensive Care Unit (PICU) may be at risk for inconsistencies in treatment plan, delay in plan progression, and patient/family dissatisfaction with communication. This article describes the development and evaluation of an intervention designed to improve continuity and communication delivered by continuity PICU attendings. Methods and analysis A randomized controlled trial of an intervention in one PICU that was randomized at the patient level. Eligible patients and their parents included those admitted to the PICU for longer than one week and were anticipated to remain for an additional 7 days. The intervention, a Continuity Care Intensivist (CCI), included early assignment of a continuity attending (separate from a regularly scheduled service attending), standardization of the continuity role to ensure consistent team and family contact and facilitate timely decision making, and enhancement of CCI communication skills. The outcomes evaluated were 1) patient PICU length of stay, ventilator-dependent days, and hospital acquired infections, 2) parental mood and satisfaction with PICU communication, and 3) intensivist perception of acceptability of intervention. Intention to treat analysis will be completed using multivariable linear regression to determine the impact of the intervention on outcomes. Lessons have been learned about the appropriate enrollment criteria for patients to allow for impact of continuity attending, frequent prognostic uncertainty in determining which patients will become longer stay in the PICU, and the difficulty of achieving timely initial contact of continuity attending with patients given the CCI's other commitments.

The ICU team gathers for their morning rounds. One of their patients died the day before. The team members look at the room where the patient had been; perhaps it is empty, or perhaps it has already been filled with another patient and family. The day the patient died may have been filled with escalating therapies and vigorous resuscitation attempts that failed to save her, or perhaps the staff had been gently supporting a child and family through the night as technology was removed and comfort assured. For some on the team (maybe a student or resident) this could be the first patient they have cared for who died.1 For others (fellow, attending, ICU nurses), this may have become a more-common experience. Multiple team members may still be thinking about the events of the day before, remembering the patient or wondering about the outcome and why certain decisions were made. Our ICU teams have developed a practice of debriefing a patient death at the beginning of patient-care rounds the following day. In effect, we “round” on the patient for one final day after the death. The patient’s primary resident or nurse practitioner begins with a 1- to 2-sentence description of the patient and events of the previous day, and then the attending facilitates a group discussion. We typically spend

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.

Objectives When contemplating tracheostomy placement in a pediatric patient, a family-physician conference is often the setting for the disclosure of risks and benefits of the procedure. Our objective was to compare benefits and risks of tracheostomy presented during family-physician conferences to an expert panel's recommendations for what should be presented. Design We conducted a retrospective review of 19 transcripts of audio-recorded family-physician conferences regarding tracheostomy placement in children. A multicenter, multidisciplinary expert panel of clinicians was surveyed to generate a list of recommended benefits and risks for comparison. Primary analysis of statements by clinicians was qualitative. Setting Single-center PICU of a tertiary medical center. Subjects Family members who participated in family-physician conferences regarding tracheostomy placement for a critically ill child from April 2012 to August 2014. Measurements and main results We identified 300 physician statements describing benefits and risks of tracheostomy. Physicians were more likely to discuss benefits than risks (72% vs 28%). Three broad categories of benefits were identified: 1) tracheostomy would limit the impact of being in the PICU (46%); 2) perceived obstacles of tracheostomy can be overcome (34%); and 3) tracheostomy optimizes respiratory health (20%). Risks fell into two categories: tracheostomy involves a big commitment (71%), and it has complications (29%). The expert panel's recommendations were similar to risks and benefits discussed during family conferences; however, they suggested physicians present an equal balance of discussion of risks and benefits. Conclusions When discussing tracheostomy placement, physicians emphasized benefits that are shared by physicians and families while minimizing the risks. The expert panel recommended a balanced approach by equally weighing risks and benefits. To facilitate educated decision making, physicians should present a more extensive range of risks and benefits to families making this critical decision.

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.

The objective of this study was to identify if family characteristics or opinions affected participation in family centered rounds.Observational study of 431 patient encounters on daily work rounds, followed by 100 questionnaires completed by family members of patients in the unit during observation.PICU at a tertiary care, academic, free-standing children's hospital.Patients and families admitted to the PICU during the observation period.None.The most frequent family members present for rounds were mothers (40%). Race, educational level, age of the family member, age of the child, whether the admission was expected, and whether the family member was a medical professional had no association with whether the family member attended rounds. Both family members who were present and those who were not present felt being at rounds would improve the care of their child (87% vs. 100%, p = 0.57). A family's response that they preferred to attend rounds was the only factor associated with a higher likelihood of attending rounds (odds ratio 3.4, 95% confidence interval 1.1-10.8, p = 0.03).Families feel that participating in family centered rounds improves the care of their children. Those that like attending rounds are more likely to participate in family centered rounds, but family demographic characteristics were not associated with rounds attendance. Future studies are needed to identify barriers to family participation in family centered rounds.

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.Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010.Pediatric intensive care unit at The Children's Hospital of Philadelphia.Eighty-seven English-speaking parents of 75 children either18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for72 hrs.Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect.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.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.

Chronic Pain in the Ambulatory Palliative Care Setting: A Distinct Entity from Acute Pain? (S744) Jessica Merlin, MD, University of Alabama at Birmingham, Birmingham, AL. Courtney Williams, MPH, University of Alabama at Birmingham, Birmingham, AL. Malissa Pynes, BS, University of Alabama School of Medicine, Birmingham, AL. Catherine McCarty, BS Candidate 2016, Healthcare Management & Psychology, University of Alabama at Birmingham, Birmingham, AL. Elizabeth Kvale, MD, University of Alabama at Birmingham Center for Palliative and Supportive Care, Birmingham, AL.

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.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.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).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.