Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of…
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and…
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…
Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact…
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and…
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…
Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While…
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this…
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014,…
Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient…
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their…
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician…
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…
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…
BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective…
Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing…
BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population. METHODS: This is a…
BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the…
OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of…
BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS:…
CONTEXT: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used…
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital…
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential…
OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this…
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate…
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other…
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions…
Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a…
BACKGROUND: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time…
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical…
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity…
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of…
Opioids are often prescribed to children for pain relief related to procedures, acute injuries, and chronic conditions. Round-the-clock dosing of opioids can produce opioid dependence within 5 days. According to a 2001 Consensus Paper from the…
The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong…
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…
