"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.

Challenges in Home-Based Pediatric Hospice and Palliative Care: A Case Series.

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination and best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.

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.

A Week in the Life: Pediatric Palliative Care through the Eyes of a Medical Student.

To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration of the numerous benefits of reflective writing for medical trainees (including improved communication and professionalism skills, as well as increased levels of empathy and comfort when facing complex or difficult situations). Additionally, we describe how brief personal narratives may serve to reduce common misconceptions and confusion by educating patients, families, and clinicians about the reality and the role of pediatric palliative care.

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.

Early Identification of Pediatric Neurology Patients With Palliative Care Needs: A Pilot Study.

Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot case-control study was to test a quantitative measure for identifying patients with unmet palliative care needs to facilitate appropriate referrals. First, a random subset of pediatric neurology patients were screened for number of hospital admissions, emergency center visits, and problems on the problem list. Screening results led to the hypothesis that having six or more hospital admissions in one year indicated unmet palliative care needs. Next, hospital admissions in the past year were counted for all patients admitted to the neurology service during a six-month period. Patients with six or more admissions as well as age- and gender-matched controls were assessed for unmet palliative care needs. In hospitalized pediatric neurology patients, having six or more admissions in the preceding year did not predict unmet palliative care needs. While this pilot study did not find a quantitative measure that identifies patients needing a palliative care consultation, the negative finding highlights an important distinction between unmet social needs that interfere with care and unmet palliative care needs. Further, the method of screening patients used in this study was simple to implement and provides a framework for future studies.

Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic.

OBJECTIVE: To improve outpatient advanced care planning (ACP) for adults with congenital/pediatric heart disease followed in a pediatric heart failure (HF) and transplant clinic through quality improvement (QI) methodology. DESIGN: A one-year QI project was completed. We conducted quarterly chart reviews and incorporated feedback from the providers to direct subsequent interventions. PATIENTS AND SETTING: Patients ≥18 years of age seen in the HF and Transplant Clinic for follow-up visit were included in analysis. INTERVENTIONS: Interventions focused on five main areas: identifying and training providers to have ACP discussions, standardizing the ACP discussion, standardizing ACP and advance directive (AD) documentation in the electronic medical record, preparing providers to have ACP conversations, and preparing patients to engage in ACP and AD completion. OUTCOME MEASURES: The outcome measure was percent of adults seen in the HF and Transplant Clinic per month with documented AD (goal 50%). The process measure was percent of adults seen in the HF and Transplant Clinic per month with a documented ACP discussion (goal 100%). RESULTS: At baseline, no patients had a documented ACP discussion or AD. Fifty-eight adults (mean age 20.4 ± 2.1 years) were seen from March 2016 to February 2017 for a total of 130 visits. In the final month of our study, 75% of adult encounters had a documented ACP discussion and 42% had a documented AD. CONCLUSIONS: The percentage of documented ADs in adults seen in the HF and Transplant Clinic at a quaternary children's hospital improved through a QI initiative. Over 50% of patients who were engaged in an ACP discussion completed an AD, suggesting this population is receptive to ACP and AD completion.