<p><strong>CONTEXT: </strong>Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care.</p>

<p><strong>OBJECTIVES: </strong>To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals.</p>

<p><strong>METHODS: </strong>A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention.</p>

<p><strong>RESULTS: </strong>Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice.</p>

<p><strong>CONCLUSION: </strong>An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.</p>

<p><strong>CONTEXT: </strong>Interprofessional teams often develop a care plan prior to engaging in a family meeting in the pediatric cardiac intensive care unit (CICU)-a process that can affect the course of the family meeting and alter team dynamics, but that has not been studied.</p>

<p><strong>OBJECTIVES: </strong>To characterize the types of interactions that interprofessional team members have in pre-family meetings huddles in the pediatric CICU by 1) evaluating the amount of time each team member speaks; 2) assessing team communication and teamwork using standardized instruments; and 3) measuring team members' perceptions of collaboration and satisfaction with decision-making.</p>

<p><strong>METHODS: </strong>We conducted a prospective observational study in a pediatric CICU. Subjects were members of the interprofessional team attending preparation meetings prior to care meetings with families of patients admitted to the CICU for longer than two weeks. We quantitatively coded the amount each team member spoke. We assessed team performance of communication and teamwork using the PACT-Novice tool, and we measured perception of collaboration and satisfaction with decision-making using the CSACD questionnaire.</p>

<p><strong>RESULTS: </strong>Physicians spoke for an average of 83.9% of each meeting's duration (SD 7.5%); non-physicians averaged 9.9% (SD 5.2%). Teamwork behaviors were present and adequately performed as judged by trained observers. Significant differences in physician and non-physician perceptions of collaboration were found in 3 out of 10 observed meetings.</p>

<p><strong>CONCLUSIONS: </strong>Interprofessional team members' interactions in team meetings provide important information about team dynamics, revealing potential opportunities for improved collaboration and communication in team meetings and subsequent family meetings.</p>

<p><strong>BACKGROUND: </strong>Parents of children in the pediatric cardiac intensive care unit (CICU) report inadequate communication and a lack of empathy during conversations with their clinicians.</p>

<p><strong>OBJECTIVE: </strong>To assess quantitatively and qualitatively the contributions made by team members of different professions in communicating with parents during family meetings.</p>

<p><strong>DESIGN: </strong>Prospective observational study.</p>

<p><strong>SETTING/SUBJECTS: </strong>The pediatric CICU at the Children's Hospital of Philadelphia. Subjects were members of the interprofessional team attending family meetings for patients admitted to the CICU longer than two weeks.</p>

<p><strong>MEASUREMENTS: </strong>We used quantitative conversation attribution and coding to compare durations of attendee contributions and contribution type by professional role. The SCOPE codebook and other quantitative codes drawn from best practices in family meetings were used to measure communication behaviors. A qualitative analysis of nurses' and social workers' contributions was used to identify themes not otherwise captured.</p>

<p><strong>RESULTS: </strong>Across 10 meetings, physicians spoke for an average of 78.1% (SD 10.7%) of each meeting, non-physicians 9.6% (SD 7.8%), and parents 17.4% (SD 12.2%). Parental understanding was assessed an average of 0.2 (SD 0.4) times per meeting. Parents expressed emotion an average of 4.2 times per meeting (SD 7.1) and the clinical team responded empathetically 2.2 times per meeting (SD 4.3). All clinician empathic responses were a minority of their overall contributions. Conversation was almost exclusively between physicians and families until physicians indicated other team members could contribute.</p>

<p><strong>CONCLUSIONS: </strong>Coordination of team members' roles in the meetings may improve parental engagement necessary for decision-making and empathic responses that are often missed.</p>

<p>We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.</p>

<p><strong>BACKGROUND: </strong>Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time.</p>

<p><strong>METHODS: </strong>In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit.</p>

<p><strong>RESULTS: </strong>One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents.</p>

<p><strong>CONCLUSIONS: </strong>The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.</p>

<p>Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices.</p>

<p><strong>CONTEXT: </strong>Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns.</p>

<p><strong>OBJECTIVE: </strong>To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation.</p>

<p><strong>METHODS: </strong>We conducted semi-structured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio recorded, transcribed and analyzed by two coders using a modified grounded theory approach.</p>

<p><strong>RESULTS: </strong>We interviewed 16 providers (10 physicians, 1 nurse practitioner, 2 social workers, 2 psychologists and 1 child life specialist). Three core perceptions emerged: (1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; (2) providers held favorable opinions about the PPCS due to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and (3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation.</p>

<p><strong>CONCLUSION: </strong>The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.</p>

<p><strong>CONTEXT: </strong>The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines.</p>

<p><strong>OBJECTIVE: </strong>To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs).</p>

<p><strong>METHODS: </strong>We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows.</p>

<p><strong>RESULTS: </strong>We identified key themes (3 barriers, 4 facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and a resource.</p>

<p><strong>CONCLUSION: </strong>We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.</p>