Quality of Outpatient Pediatric Palliative Care Telehealth: A Retrospective Chart Review.

CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated measures. OBJECTIVE: We sought to compare the provision of pediatric palliative care by delivery method. METHODS: We conducted a retrospective electronic health record review of patients seen by our outpatient palliative care team over a two-year period. Demographic, diagnostic, and health utilization data as well as encounter characteristics were compared between patients seen in person (IP), through telehealth (TH), and both (IP/TH). RESULTS: Three hundred ninety-four patients were evaluated with 889 outpatient pediatric palliative care encounters. Non-English speaking patients were less likely to receive palliative care through TH, as were patients without active patient portals. Median follow-up time was longer for patients seen through TH or IP/TH. Patients with malignancies were seen more frequently IP while children with neurologic diagnoses, technology dependence, and a higher number of complex chronic conditions were seen more frequently via TH. Health outcomes, end of life quality metrics, and encounter-level quality indicators were similar across care delivery methods. Review of systems, pain, and mood management, and advance care planning happened more frequently IP while goals of care discussions and medical decision-making happened more through TH. CONCLUSION: Despite differences in patients seen and palliative interventions provided in person compared to telehealth, health outcomes, and quality indicators were similar across care delivery methods. These data support the continued practice of telehealth in palliative care and highlight the need for equity in its evolution.

"Just let me go"; When suicidal ideation and goals of care collide in adolescent cancer at the end of life.

Cancer in adolescents and young adults is associated with an increased risk for suicidal ideation (SI). There are no reported pediatric oncology cases describing management of SI during end of life. We present the case of a 14-year-old male with relapsed, high-risk, B-cell acute lymphoblastic leukemia who received a haploidentical stem cell transplant and was suicidal at various points in his treatment. We discuss how to manage acute suicidality in this patient population, the importance of giving a voice to the adolescent patient, the impact of discordant goals of care, and potential preventive strategies for similar cases.

Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning With Competencies.

Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set forth by the Accreditation Council for Graduate Medical Education (ACGME) and published subspecialty competencies for residents in pediatric hospice and palliative medicine (pHPM). Objectives: To evaluate what residents are learning on a four-week pediatric palliative care elective rotation at a single institution and how these learnings fulfill ACGME and pHPM competencies. Setting/Subjects: Prompted, written reflections were collected from residents completing a pediatric palliative care rotation at a large, urban academic center in the United States between academic years 2016-2017 and 2020-2021. Measurements: A qualitative, inductive reasoning approach was used to analyze reflections for emergent themes and codes. A deductive approach was used to map resulting codes to ACGME core competencies, Pediatric subcompetencies, and pHPM competencies. Results: Twenty-five resident reflections were collected. Inductive analysis revealed three primary themes and 102 codes. These codes were mapped to all six ACGME core competencies and mapped to most Pediatric subcompetencies with the exception of performing a physical examination, organizing and prioritizing patients, diagnostic evaluation, and community and population health. Codes mapped to most pHPM competencies with the exception of two symptom-based competencies, malignant bowel obstruction and severe fatigue. Conclusions: Residents' written reflections following a pediatric palliative care elective rotation demonstrated robust learnings that fulfill many core, specialty, and subspecialty competencies, particularly those that relate to patient- and family-centered care, communication, professionalism, and systems-based practice.

Palliative Care in Pediatric Pulmonology.

Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children's Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries.