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Context: High-quality pediatric palliative care is best achieved through a comprehensive interdisciplinary effort that actively involves the family and engages resources within the community. Community-based palliative care specifically strives to…
Context: Documented goals-of-care (GOC) conversations promote goal-concordant care; few studies have evaluated the comprehensiveness of this documentation within pediatrics. Objective: To evaluate the content of pediatric GOC documentation within a…
Excerpt Over the last three decades, pediatric palliative care (PPC) has become a respected subspecialty service in children’s hospitals across the United States,1 supporting children with serious illness and their families in discerning of goals of…
Context: Identifying when a child is suffering can be incredibly challenging. Understanding how the term 'suffering' is used in pediatric critical care - and specifically end of life care - is critical for clinical decision-making, communication, and…
In Buddhism, preserving life at all costs is generally discouraged, and to prolong life without hope for cure or recovery stems from the sins of delusion and worldly attachment. When an infant's death is imminent, Buddhist parents often prioritize…
While pediatric hospice and palliative medicine as a field have experienced enormous growth over the past twenty years, much work remains to be done, including establishing best practices and guidelines for provision of home-based palliative care and…
Over 97% of children needing palliative care live in low-and middle-income countries (LMICs) with most lacking access. However, most pediatric palliative care (PPC) research has been conducted in high-income countries. Generated knowledge may not…
Background and aims: Surveyed families of children and young adults with cancer who participated in a pilot study of three coordinated telehealth visits (triad of patient/family, hospital clinician, and hospice nurse) during the first month of…
Literature shows the importance of utilizing medical language interpreters (MLI) for patients and families with limited English proficiency for discussions regarding end-of-life (EOL) and/or advance care planning (ACP). Fewer studies have examined…
Pediatric end-of-life cases require a nuanced response to complex challenges (e.g., limits of parental authority, duty of child protection, and the inherent ambiguity–even impracticality–of the best interest standard). This is especially the case in…
As children with life-threatening conditions near end-of-life, their burden of disease tends to increase, often resulting in a high intensity of care in the hospital. While an expanding body of data supports the use of palliative and hospice care in…
Racial disparities within palliative care related to both quality of care and access to care are well-documented across inpatient, outpatient, and home-based settings, including in pediatrics. There has been a call to action to examine these ongoing…
Inequitable care across racial groups has been a reality throughout the history of modern medicine. These inequities extend to children living with serious illness and impact their experiences within the healthcare system as well as their health…
Pediatric palliative care (PPC) is integral component of comprehensive care provided to critically ill children and teens (1). Little is known about the utilization of PPC following Pediatric Out-of-Hospital Cardiac Arrest (OHCA) in the United…
Context: Prior work examines provider perspectives on withholding potentially inappropriate life-sustaining treatments over family objections; however, data are limited regarding how physicians approach situations in which they are considering…
Describe the impact of integrating in-person medical interpreters within the interdisciplinary framework of palliative care to support the development of a personalized care plan for non-English speaking families with complex goals of care. For…
Introduction: Pediatric palliative care (PPC) aims to enhance the quality of life of children and families facing serious illness. Subsequently, patient reported outcomes (PRO) are crucial; however, development of valid, useful tools for our field…
Context: Pediatric patients report using complementary and integrative health interventions (CHI) for symptom management. Objective: Feasibility and initial effect sizes of CHI with patients at two children's hospitals. Methods: Using convenience…
Context: In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients' symptoms is unknown. Objective: To measure…
BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…
Background: Although medical advancements have prolonged survival in Duchenne muscular dystrophy (DMD), it remains a life-limiting diagnosis with numerous challenges. Palliative care is recommended for all patients with DMD, but there is no consensus…
CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's…
CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…
BACKGROUND: Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.,…
Outcomes: 1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support. 2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement…
Background and aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice…
Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2.…
CONTEXT: The Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development.…
Context Traditional, complementary, and integrative medicine (TCIM) is being increasingly used to manage symptoms in patients with palliative needs. However, there is a lack of evidence to guide its use in the pediatric palliative care (PPC) setting.…
Abstract Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer,…
Context Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. Objectives To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to…
Introduction: Hospice and Palliative Medicine (HPM) fellowship training provides education on caring for patients from early childhood through adulthood. Yet, there are few guidelines about how to teach these key components, and more specifically the…
Context: Racial disparities in health outcomes have historically impacted Black and Native American children with serious illness, yet little is known about how racism shapes the healthcare experiences of these families. To improve care experiences…
Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric…
Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult…
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the…
CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…
Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…
Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred…
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…
