Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s):…
Since 2005, forgoing live-support (FLS) is allowed by the French law (known as the Leonetti law) for end-of-life patients only. This study aims at describing the variations over time in the use of the following methods to end life: FLS, brain death…
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…
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.…
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…
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…
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for…
Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review…
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care…
Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of…
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education…
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with…
Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in…
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at…
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in…
BACKGROUND:
This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service…
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during…
Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and…
Background Timely discussions about goals of care in critically ill patients have been shown to be important. Methods We conducted a retrospective chart review over 2 years (2003-2004) of patients admitted to our medical service who were classified…
BACKGROUND:
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study…
Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely…
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support…
BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might…
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who…
BACKGROUND AND AIMS:
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors…
Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death.…
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and…
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined…
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is…
Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488…
CONTEXT: The relationship between quality of Goals of Care (GOC) conversations and moral distress among NICU providers is not known. OBJECTIVES: We sought: 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress…
BACKGROUND:
Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
AIM:
The aim of this review is to…
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the…
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from…
