Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the…
Objective: To explore pediatric emergency medicine healthcare providers' perspectives regarding their role in pediatric palliative care. Methodology: A qualitative study was conducted at the CHU Sainte-Justine from January to April 2016. Four…
BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…
UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on…
AIMS: A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions. METHODS: The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and…
Learning Objectives: For many children with medical complexity (CMC), early death is an inevitable outcome of their illness, making advance care planning (ACP) a vital component in the optimal care of this population. Studies evaluating the…
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system.…
Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment…
Objective: The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Methods: Thirteen pediatric…
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these…
Context: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement.Objectives: The objective of this study was to compare…
Background: Hospitalizations of children with medical complexity (CMC) account for one-half of hospital days in children, with lengths of stays (LOS) that are typically longer than those for children without medical complexity. The objective was to…
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures…
OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed…
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and…
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim…
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement.…
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of…
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave.…
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for…
Drawing on fieldwork in a neonatal intensive care unit (NICU) in Chiang Mai during 2010 and 2012, I examine neonatal care as a contingent entanglement of technological and ethical relationships with vulnerable others. Along the continuum of universal…
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…
Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ).…
OBJECTIVES:
To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to…
Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate…
Paediatric palliative care is characterised by the holistic care provided to children living with life-limiting and life threatening conditions, ranging from providing symptom control to bereavement support. Due to the nature of the conditions many…
The death of someone close to a child often has a profound and lifelong effect on the child and results in a range of both short- and long-term reactions. Pediatricians, within a patient-centered medical home, are in an excellent position to provide…
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…
Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the…
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction…
Children and young people who require palliative care have aheterogeneous range of life-limiting conditions such as a malig-nant disease, chromosomal, neurodegenerative and genetic meta-bolic disorders. The benefits of paediatric palliative care…
Abstract
OBJECTIVES:
To develop and validate an algorithm to guide selection of patients for pediatric critical care admission during a severe pandemic when Crisis Standards of Care are implemented.
DESIGN:
Retrospective observational study using…
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care…
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…
Background It is notoriously difficult to predict life expectancy for children with static neurological conditions (e.g. cerebral palsy). Identifying factors that make a child likely to be life limited and require an early palliative focus to their…
Context This quality improvement project took place in a district general hospital paediatric department. The target population was all doctors in training, consultants, ward nurses and community nurses.
Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs.
