Browse Items (395 total)

Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families,…

The fear of "choking to death" is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a…

Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been…

As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build…

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death'…

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and…

Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are…

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and…

Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…

OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative…

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by…

Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the…

Aims Children's hospices provide a range of services for children with life limiting (LLC) and life threatening conditions (LTC). Referral previously relied on obtaining supporting views from the child's paediatrician and there was often delay…

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric…

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…

Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the…

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide…

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive…

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…

Purpose: There is lack of standardized resident' curriculum or training for the rapidly emerging field of pediatric end of life care. Goal: To assess pediatric residents' perception of their clinical competence with end of life care and their…

Objective: Controlling seizures in children approaching death is often challenging. The evidence base to guide best practice is limited. We aimed to compare our current practice against the guidance for seizure management produced by the Association…

OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a…

OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in…

BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the…

The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing…

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research…

Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children…

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…
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