Objective: The primary objective was to evaluate the efficacy of a weekly palliative care-guided, case-based discussion of high-risk infants on Neonatal Intensive Care Unit (NICU) physician (MD) and Advanced Practice Provider (APP) perceptions of…
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all…
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to…
Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous…
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data…
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a…
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these…
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in…
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…
OBJECTIVE: To present the characteristics of pediatric patients with chronic and irreversible diseases who underwent palliative extubation. METHOD: This is a descriptive analysis of a case series of patients admitted to a public pediatric hospital,…
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one.…
AIMS: This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies. METHODS: A questionnaire was distributed to all 2,300 professionals at a paediatric…
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support.…
OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN:: A full population survey,…
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a…
The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. The study was conducted over a…
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive…
BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with…
BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES:…
BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content…
Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the…
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort…
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding…
A regular work day for intensivists can be emotionally draining, as we witness suffering, fear, pain,
tragedies, unfair treatment of children, death…. We may experience the mental stress of dealing with
nursing shortages, increasing family demands,…
Purpose: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative…
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived. Materials…
As a result of oncology research and technology, great improvements in cancer treatment and survival have occurred in the past 2 decades. However, adolescents and young adults (AYAs) who received a diagnosis of cancer have not witnessed the same…
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233…
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and…
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n =…
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families…
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland…
Highlights
•Parent experiences surrounding end-of-life care in the NICU were explored.
•The opportunity to be a parent was important regardless of the infant's prognosis.
•NICU nurses played a critical role in facilitating parenting.
•Living with…
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill…
