Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We…
BACKGROUND:
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children…
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with…
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and…
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and…
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown…
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and…
Editorial - The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance1 emphasises the need to include children…
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and…
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices…
OBJECTIVE: This paper identifies key features associated with high-quality educational materials for end-of-life curriculum. METHODS: The End of Life Physician Education Resource Center (EPERC), located on the Internet at provides a clearinghouse for…
Abstract Background: As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately…
BACKGROUND: Bereavement support is a core tenet of palliative care that may prove difficult for clinicians as it is time-consuming, emotionally charged, and not emphasized in pediatrics training. This project is intended to describe the opinions,…
Abstract Background: Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics. Objective: To describe the structure and characteristics of outpatient palliative care services…
BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and…
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with…
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences…
Nursing facilities (NF) are important sites for the care of dying patients. Curricula likely to improve end-of-life care are needed for NF physicians. To this end, a model medical school palliative care curriculum was modified for experienced NF…
Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize…
OBJECTIVES: Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and…
OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study…
BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are…
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for…
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…
Background: Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize…
BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all…
Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the…
BACKGROUND:
Palliative care guidelines recommend plain radiographs to assess constipation based on the presumption that visible fecal shadowing represents stool retention. Despite this, using plain radiographs in this way is not well…
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and…
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the…
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design:…
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care…
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this…
BACKGROUND: Pediatric end-of-life care involves multiple decision-makers including the patient, the family, and the health care provider. Although some information exists on the role of patient and family values on decision making, little is known…
