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INTRODUCTION: The goal of palliative care is to improve the quality of life for both patients and caregivers facing challenges associated with serious illness. Palliative care can be introduced at any time, and it is associated with improved…
Introduction Empathetic end-of-life (EOL) communication is important for high quality pediatric patient and family outcomes. Trainees may have limited exposure and training in caring for patients at EOL which may impact communication-related stress.…
Terminally ill children (TIC) in pediatric palliative care often encounter psychological deprivation due to isolation, impacting their self-discovery and identity formation. The Young Pioneer Voluntary Teams (YPVTs), initiated by the Ministry of…
Background/objectives: In severe cases of necrotizing enterocolitis (NEC) in preterm neonates, surgery may be the only option for survival. However, the consequences of active treatment are not always in the infant's best interest, urging parents and…
Background: Congenital heart disease CHD is a common congenital anomaly with lesions requiring intervention before initial hospital discharge defined as critical CHD CCHD. Advances in prenatal detection, surgical, and post-operative care have…
Context: Pediatric patients report using complementary and integrative health interventions (CHI) for symptom management. Objective: Feasibility and initial effect sizes of CHI with patients at two children's hospitals. Methods: Using convenience…
Abstract The inclusion of health-related quality of life (HRQoL) impacts on informal carers in health technology assessments (HTAs) is lacking due, primarily, to a deficiency in evidence and methodological issues on how informal carer HRQoL is…
Background: There are increasing numbers of children living with conditions that may threaten or shorten their lives. While child mortality has decreased in recent decades, it is estimated 4500 infants, children and young people (0-19 years) die in…
INTRODUCTION: Evaluation for death by neurologic criteria (DNC) may help inform family decisions around end of life care and organ donation in pediatric patients with severe neurologic injury. Knowledge is limited on which children who undergo DNC…
In this narrative medicine essay, a mother, a palliative care physician, and a hospital chaplain describe a meeting discussing a young patient’s medical options for treating his rare brain tumor.
INTRODUCTION: Approximately 80% of pediatric deaths occur in the pediatric intensive care unit (PICU), with a significant proportion being after withdrawal of life sustaining therapies (WOLST).1-3 There are few published guidelines for how to prepare…
Background: We describe an infant with a diagnosis of GM3 synthase deficiency, presenting with severe neuroirritability from birth. He required multiple admissions due to extreme agitation and caregiver burnout. Multiple pharmacological agents were…
Introduction: Since the passage of the Affordable Care Act, children are able to access pediatric hospice while still pursuing life-prolonging care. This can create confusion between hospice and palliative care staff and families about current goals…
Objective: To identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress. Method: Parents of children diagnosed prenatally with CHD (N = 37) were…
OBJECTIVES: Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating…
Abstract Death and grieving are regular events in the human lifecycle, and the rituals associated with the loss bring closure to dear ones. Ambiguous loss, a term coined by Pauline Boss, is a state in which there is no actual "death" and, therefore,…
"To the Editor: With the changing Accreditation Council for Graduate Medical Education requirements and the looming general and subspecialty pediatrician shortages, now is the time to consider carefully pediatric residency training. Aye et al should…
Context: In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients' symptoms is unknown. Objective: To measure…
"The Leadbeater Terminally Ill Adults (End of Life) Bill, the latest UK bill on assisted dying, passed its second reading in the House of Commons in November 2024 after a short period of intense debate and extensive high-profile media coverage.…
Abstract: Palliative care focuses on providing relief from the stress and symptoms of serious illness. Obstetrician gynecologists (OBGYNs) manage a variety of complex clinical situations ranging from delivering a cancer diagnosis to caring for a…
Objective: To describe children with medical complexity (CMC) in Montana according to their clinical characteristics, rurality, and distance from specialty care, and to assess for disparities in geographic access to specialty care for American Indian…
Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care. Methods:…
INTRODUCTION: Palliative care (PC) was traditionally reserved for children at the end-of-life, but is now widely considered to be essential for optimizing the management of children and families with complex critical illnesses. This pilot study aimed…
In Canada, the provision of Paediatric Palliative Care (PPC) services faces unique barriers due to a large geography and dispersed service population. This review identifies global challenges and strategies to inform efforts in strengthening Canadian…
Background: Home-based hospice and/or palliative care (HBHPC) is an important pediatric care modality offering continuity of care and a deeper understanding of patient and family needs. There is limited guidance to address multi-faceted approaches to…
