Purpose Of Review: Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life…
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation…
10.1542/6315738932112Video AbstractPEDS-VA_2022-0589056315738932112Many patients receiving pediatric palliative care (PPC) present with surgically treatable problems. The role of surgery in the care of these patients, however, has not yet been…
BACKGROUND: Death of a child in the Paediatric Intensive Care Unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even…
The World Health Organization describes paediatric palliative care (PPC) as the active total care of the child's body, mind and spirit and supporting their family.1 It should be established as early as possible and continued along the entire disease…
Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited…
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics…
Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving…
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and…
To investigate any association between expressions of parents' continuing bond with their stillborn baby and bereavement adaptation. Continuing bonds theory suggests that bereaved parents adapt to the loss of their child by sharing and transforming…
INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for…
When working on an ethnographic study into communication between children and health professionals about their cancer, the researcher witnessed an event that seemed to capture the often-invisible emotional challenges associated with such work (Bryan…
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…
Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not…
Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…
Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…
Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The…
Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In…
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: The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. Aim: First, this study aimed to develop a deeper understanding of…
Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the…
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their…
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…
Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background…
The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand…
BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and…
OBJECTIVE: To compare the characteristics and healthcare utilization of children with medical complexity (CMC) who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional non-family member (non-family…
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting…
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.…
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric…
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To…
A Review of Pediatric Care: A Model for Exemplory Practice This book i sbased on research across three settings where children with complex, chronic, and potentially life-threatening conditions are often cared for: neonatal intensive care, oncology…
BACKGROUND: The Quality of Care Collaborative Australia (QuoCCA) builds capability in the generalist and specialist paediatric palliative care (PPC) workforce throughout Australia. It supports regional and community services to provide care close to…
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing…
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain…
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and…
