Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model.

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.

Development of Curricular Milestones for Hospice and Palliative Medicine Fellowship Training in the U.S.

CONTEXT: A physician workgroup of the American Academy of Hospice and Palliative Medicine sought to define curricular milestones (CMs) for hospice and palliative medicine (HPM) Fellowship Programs. The developed list of CMs would serve as components upon which to organize curriculum and standardize what to teach during training. These would complement entrustable professional activities previously developed by this group and new specialty-specific reporting milestones (RMs) for HPM developed through the Accreditation Council for Graduate Medical Education. OBJECTIVES: The objective of this study was to develop and vet CMs for HPM fellowships in the U.S. METHODS: A draft of CMs was developed through an iterative consensus group process with repeated cycles of drafting, analyzing, and revising by a broadly representative expert workgroup who then gained input from HPM educators at a national meeting workshop. The CM draft was subsequently revised and then vetted through a national survey to 203 fellowship educators. Respondents were asked to "keep," "revise," or "exclude" each proposed CM with space for comments. An agreement of 75% among respondents was set as the criteria a priori for keeping a CM. Eighty-four of the 203 potential respondents participated in the survey. All items met the minimum agreement level of 75% or greater recommending keeping the CM. Greater than 85% of the respondents agreed to keep 19 of the 22 CMs with no revisions. Comments for revisions on other CMs were primarily related to changes in language and formatting, not conceptual underpinnings. CONCLUSION: A group consensus method strengthened by inclusion of a national survey to HPM fellowship educators resulted in a CM document that is both carefully developed and broadly vetted. Along with entrustable professional activities and new specialty-specific RMs, these CMs offer educators and trainees tools to create more comprehensive curricula and behaviorally based assessment tools for HPM fellowships and their stakeholders.

Development of Entrustable Professional Activities for Hospice and Palliative Medicine Fellowship Training in the United States.

CONTEXT: Entrustable Professional Activities (EPAs) represent the key physician tasks of a specialty. Once a trainee demonstrates competence in an activity, they can then be "entrusted" to practice without supervision. A physician workgroup of the American Academy of Hospice and Palliative Medicine sought to define Hospice and Palliative Medicine (HPM) EPAs. OBJECTIVE: The objective of this study was to describe the development of a set of consensus EPAs for HPM fellowship training in the United States. METHODS: A set of HPM EPAs was developed through an iterative consensus process involving an expert workgroup, vetting at a national meeting with HPM educators, and an electronic survey from a national registry of 3550 HPM physicians. Vetting feedback was reviewed, and survey data were statistically analyzed. Final EPA revisions followed from the multisource feedback. RESULTS: Through the iterative consensus process, a set of 17 HPM EPAs was created, detailed, and revised. In the national survey, 362 HPM specialists responded (10%), including 58 of 126 fellowship program directors (46%). Respondents indicated that the set of 17 EPAs well represented the core activities of HPM physician practice (mean 4.72 on a five-point Likert scale) and considered all EPAs to either be "essential" or "important" with none of the EPAs ranking "neither essential, nor important." CONCLUSIONS: A set of 17 EPAs was developed using national input of practicing physicians and program directors and an iterative expert workgroup consensus process. The workgroup anticipates that EPAs can assist fellowship directors with strengthening competency-based training curricula.

Providing Palliative Care in Rare Pediatric Diseases: A Case Series of Three Children with Congenital Disorder of Glycosylation.

Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from the prognostic uncertainty surrounding their child's rare condition. We discuss several unique challenges, illustrated through case studies of three children who shared the rare diagnosis of congenital disorder of glycosylation.