Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…
Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening…
Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background(s): Volunteers play a critical role in providing peer support to adolescent and young…
Pediatric palliative care deals with the physical, psychosocial, and spiritual concerns of patients and their families. And to do this, clinicians must use all the tools at their disposal, including pharmacological and nonpharmacological modalities.…
BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…
BACKGROUND AND OBJECTIVE: Delirium in terminally ill cancer patients causes considerable distress to family members. The aim was to determine the family-perceived usefulness of a leaflet about delirium in terminally ill cancer patients. METHODS:…
BACKGROUND: For the better part of 100 years, acetaminophen (or paracetamol as it is known outside of the United States) has been a common first-line analgesic in pediatrics and is typically well tolerated with minimal side effects. Its use as an…
CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative…
OBJECTIVE AND BACKGROUND: Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center. METHODS: This is a retrospective cohort study of 109 patients…
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We…
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both…
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular…
Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical,…
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such…
The use of standardized patients (SPs) is an emerging strategy in palliative care education. We have used this strategy to provide pediatric residents with a structured educational experience focused on effectively communicating bad news and…
Abstract Background: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision…
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…
Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the…
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a…
All children experiencing child maltreatment/neglect require child abuse experts to offer the complex care needed, and for the child with potential life-limiting injuries, both child abuse and palliative care experts are integral to the team. The…
BACKGROUND: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically…
Abstract Background: The place of death is of considerable interest now, yet few studies have determined public preferences for place of end-of-life (EOL) care or final days of life. Objective: A survey was designed to answer three questions: (1)…
Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry ("the…
Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional…
BACKGROUND: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. OBJECTIVE: To determine…
