BACKGROUND AND OBJECTIVE To evaluate the efficacy of Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC) on adolescents' quality of life.METHODS A clinical trial randomized adolescent-family dyads at a 2:1 ratio to either FACE-TC or control. FACE-TC dyads received 3 weekly 60-minute sessions: Lyon Pediatric Advance Care Planning Survey; Next Steps: Respecting Choices; and Five Wishes. Generalized mixed-effect models evaluated efficacy at 3, 6, and 12 months after intervention measured by FACIT-SP-Ex-V4 (meaning/peace, faith) and PROMIS pediatric (anxiety; depressive symptoms; pain interference, fatigue). Fisher exact tests assessed decisional support and preparedness.RESULTS Adolescents (n = 126) were mean age 17 years, 57% female, and 79% white. No significant differences were found between groups for faith or meaning/peace. At 12 months after intervention compared to control, FACE-TC increased anxiety (mean ratio 1.14; CI 1.04-1.25), depressive symptoms (mean ratio 1.12; CI 1.02-1.22), and pain interference (mean ratio 1.10; CI 1.00-1.20), but not at 3 or 6 months. FACE-TC increased fatigue at 3 months (mean ratio 1.13; CI 1.02-1.26), but not at 6 or 12 months. Compared to control, adolescents participating in FACE-TC agreed that "I feel prepared for the future" (76% vs 94%) and "I feel we are now on the same page" (76% vs 94%) at 3 months, but not at 12 months.CONCLUSIONS There were no significant differences in quality of life between groups until 1 year, except for fatigue. FACE-TC had late effects, increasing adolescents' anxiety, depressive symptoms, and pain interference. Reassessment at 1 year is clinically important.

OBJECTIVE:Approximately 67.8 million people in the United States population speak a language other than English (LOE). Within the health care setting, professional interpreters are critical to providing quality patient care. How pediatric clinicians engage with interpreters is understudied. Our goal was to explore pediatric intensive care unit (PICU)-clinician practices related to interpreter services at time of withdrawal of life-sustaining medical treatment in patients who speak an LOE. METHODS:A 44-question web-based survey was distributed via 2 pediatric critical care listservs. Demographics of respondents, types of interpreters available, how interpreters are used, and clinician perception of interpreter services were collected. Comparisons were made using the paired t test. RESULTS:About 176 clinicians completed the survey. Significant differences were seen between in-person and remote interpreters regarding the percentage of clinicians who brief interpreters prior to engaging with the patient/family (84% vs 42%; P < .0001) and confidence in (1) interpretation of their words (72% vs 41%; P < .0001), (2) the communication of the general context of the conversation (89% vs 53%; P < .0001), and (3) in interpreters using their cultural understanding to aid the conversion (79% vs 41%; P < .0001). CONCLUSIONS:PICU-clinician engagement and confidence in interpreters was significantly higher for in-person than remote interpreting modalities. We have identified multiple opportunities for improvement in communication between LOE families and clinicians including interpreter briefing, expansion of in-person interpreter availability, and expansion of education on partnering with professional medical interpreters.

BACKGROUND:Cardiac allotransplantation is the optimal treatment for end-stage heart failure. However, organ supply remains the principal issue affecting patients. Pediatric patients present unique challenges resulting in long wait-list times and increased mortality. Donation after circulatory death with normothermic regional perfusion represents a method to increase the number of available organs in this population. METHODS:Multiinstitutional expert consultation was sought to outline extant technical, ethical, and logistical issues with regard to normothermic regional perfusion cardiac donation techniques. Specific advantages in the pediatric population are highlighted, as well as technical considerations resulting in successful organ procurement. RESULTS:The use of donation after circulatory death organs after normothermic regional perfusion in the United States is increasing and offers advantages to the pediatric heart failure population. Ethical reservations both nationally and abroad persist, namely pertaining to cerebral blood flow. This issue has led to variation in perception and use of normothermic regional perfusion, thus contributing to a discrepancy between donor and recipient locations. Procurement techniques and variations are described, with an introduction to program planning and protocol development. Training in technical aspects of the procedure is paramount for both the surgeon and support staff to construct a successful program, along with transparent protocols to mitigate ethical concerns. CONCLUSIONS:Normothermic regional perfusion is relevant after donation after cardiac death in the pediatric population. Ethical and technical challenges remain, in concert with substantial domestic and international variation. Standardization of technique may serve to increase future use and increase the number of available hearts for transplantation, thereby reducing pediatric mortality.

PURPOSE:The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS:We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS:Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS:Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

This randomized clinical trial examines an intervention that supports and enables the discussion of advance directives between adolescents with cancer and their families.

Resources (eg, traditional and protocols) will be available on Padlet, an online bulletin board that allows participants to interact with, modify, and save resources.During this session, participants will practice skills and leave with tangible tools that they can take home to their institutions.At the end of the session, participants will be supported in real time to complete their Notice of Intent for buprenorphine prescribing.

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.

BACKGROUND AND OBJECTIVES:There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHODS:Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULTS:Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSIONS:High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

OBJECTIVES:. A statewide working group in Minnesota created a ventilator allocation scoring system in anticipation of functioning under a Crisis Standards of Care declaration. The scoring system was intended for patients with and without coronavirus disease 2019. There was disagreement about whether the scoring system might exacerbate health disparities and about whether the score should include age. We measured the relationship of ventilator scores to in-hospital and 3-month mortality. We analyzed our findings in the context of ethical and legal guidance for the triage of scarce resources. DESIGN:. Retrospective cohort study. SETTING:. Multihospital within a single healthcare system. PATIENTS:. Five-hundred four patients emergently intubated and admitted to the ICU. INTERVENTIONS:. None. MEASUREMENTS AND MAIN RESULTS:. The Ventilator Allocation Score was positively associated with higher mortality (p < 0.0001). The 3-month mortality rate for patients with a score of 6 or higher was 96% (42/44 patients). Age was positively associated with mortality. The 3-month mortality rate for patients 80 and older with scores of 4 or greater was 93% (40/43 patients). Of patients assigned a score of 5, those with end stage renal disease had lower mortality than patients without end stage renal disease although the difference did not achieve statistical significance (n = 27; 25% vs 58%; p = 0.2). CONCLUSIONS:. The Ventilator Allocation Score can accurately identify patients with high rates of short-term mortality. However, these high mortality patients only represent 27% of all the patients who died, limiting the utility of the score for allocation of scarce resources. The score may unfairly prioritize older patients and inadvertently exacerbate racial health disparities through the inclusion of specific comorbidities such as end stage renal disease. Triage frameworks that include age should be considered. Purposeful efforts must be taken to ensure that triage protocols do not perpetuate or exacerbate prevailing inequities. Further work on the allocation of scarce resources in critical care settings would benefit from consensus on the primary ethical objective.

Background To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer-related symptoms; and class classification varies by gender-poverty combinations. Procedure Cross-sectional data were collected among adolescents with cancer and families (N = 126 dyads) at four tertiary pediatric hospitals. Adolescents were aged 14-21 years, English speaking, cancer diagnosis, not developmentally delayed, psychotic, homicidal, suicidal, or severely depressed. Latent class analysis and multinomial logit models were used for analysis. Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric symptom measures, Short forms, evaluated anxiety, depressive symptoms, pain interference, and fatigue. Family-reported household income used 2016 Federal Poverty Level (FPL) guidelines. Results Three distinct groups of patients were identified using PROMIS symptom patterns: High Distress-25%; High Physical/Low Psychological Distress-14%; and Low Distress-62%. Female adolescents living in households with incomes at or below the 2016 FPL had 30 times the odds of being classified in the High Distress class (higher probabilities of experiencing anxiety, depressive symptoms, pain interference, and fatigue) compared to those in the High Physical/Low Psychological Distress class (female and poverty: AOR = 30.27, 95% CI 1.23, 735.10), and this was statistically significant (beta = 3.41, 95% CI 0.21, 6.60; p = .04) but not compared to those in Low Distress. Conclusion Adolescent females with cancer with households in poverty had significantly greater odds of experiencing high symptom distress, compared to those with high physical but low psychological distress. More comprehensive screening and intervention, as needed, may decrease disparities.

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families’ appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families’ (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = −.14; 95% CI = −0.42 to 0.15; P = .35) or distress (β = −.01; CI = −0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

e22533 Background: Little is known about how well family caregivers respond to participating in pACP. The research objective was to understand the effect of FAmily CEntered pediatric Advance Care Planning (FACE pACP) for teens with cancer (FACE-TC) on families’ appraisals of caregiving for their child over time. Methods: 126 adolescent/family dyads were randomized to either FACE-TC intervention or treatment as usual control. FACE-TC is three weekly, 60-minute pACP sessions with a trained/certified facilitator. Family Appraisal of Caregiving Questionnaire subscales assessed outcomes. Generalized Estimating equations (GEE) model was used to examine outcome change over time. The effect of intervention on the change was examined by the interaction between time and intervention. Results: 126 adolescent/family dyads completed baseline assessments. 102 dyads completed the 3-month assessment. Adolescents were mean age of 17 years (range 14-20); 57% female; 79% Caucasian. Family participants were mean age 46 (range 19-67); 83% female; 82% Caucasian. Positive caregiving appraisals subscale items are “Caring for __ is satisfying; It is a privilege to care for __; Caring for __ has made me feel closer to him/her; I am able to comfort __ when he/she needs it; I feel confident I can handle most problems in caring for __; I feel useful in my relationship with __; I am committed to caring for __”. FACE pACP significantly increased positive caregiving appraisals at 3 months post-intervention, compared to controls, (β = 0.20, Confidence Interval = 0.03-0.37, p = 0.0189). No significant differences were found between groups for the subscales: burden, distress or family well-being. Conclusions: FACE pACP significantly increased positive caregiver appraisals compared to controls. The family caregiver’s role is critical for the well-being of teens with cancer. Findings identified positive aspects of caregiving in the context of pACP without increasing caregiver burden or distress. Clinical trial information: NCT02693665.

Background: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. Aim: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. Design: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices ® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. Settings/participants: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children’s hospital were involved in the study. Results: Influences on participants’ decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant’s concern over the perceived negative impact of discontinuing treatment on their families. Conclusion: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.

Background Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health. Procedure Qualitative analysis using a phenomenological approach of N = 30 structuredRespecting Choicesinterviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial. Results AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family. Conclusions Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.

Importance:Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective:To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participants:This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure:Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures:The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Results:A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance:Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.