Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Importance: The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined. Objective: To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences. Design, Setting, and Participants: This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022. Exposures: Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information. Main Outcomes and Measures: Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis. Results: A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (ß [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69). Conclusions and Relevance: Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study. Trial Registration: ClinicalTrials.gov Identifier: NCT02693665.

Considerations in Caring for Adult Patients in the Pediatric Intensive Care Unit.

Pediatric providers are caring for a growing number of adults in pediatric in-patient settings due to the increasing survival of patients with historically pediatric disease. Beyond understanding the unique medical management of these patients, adult-specific ethical and legal issues must be considered. The aim of this article is to discuss four major issues unique to caring for adult patients: advance directives, confidentiality, decision-making capacity, and palliative care. To our knowledge, no literature exists focusing on the consideration of these specific concepts for the pediatric provider. An understanding of these issues in caring for adult patients in pediatric settings will enable pediatric practitioners to better consider patient autonomy, protect patient privacy, and ensure appropriate decision-making in critically ill patients.

Home extubation by a pediatric critical care team: providing a compassionate death outside the pediatric intensive care unit.

Our objective is to present a case report of home extubation by a pediatric intensive care team in a terminally ill pediatric patient. Literature relevant to home extubation will be reviewed. The design is a case report. Home extubation of critically ill children may offer significant benefits and an alternative end-of-life option for families. Allowing a child to die at home creates an opportunity for families to maintain privacy and to better address their spiritual and cultural needs at the time of death. Before offering home extubation to families, hospitals should prepare families for the experience and address the availability of staff to comfort parents and provide bereavement support. Medicolegal as well as cost issues for the hospital related to home extubation should be explored before the implementation of a program of this nature. This case illustrates that home extubation is a creative, compassionate, and culturally sensitive alternative to hospital-based end-of-life care involving the pediatric intensivist, transport teams, and primary care physicians.