Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care…
Objectives: Accurate prediction of time to death after withdrawal of life-sustaining therapies may improve counseling for families and help identify candidates for organ donation after cardiac death. The study objectives were to: 1) train a long…
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept…
Objectives: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. Method(s): A scoping review methodology was used to map…
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…
Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a…
OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's…
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…
Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this…
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support…
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative…
Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper…
BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric…
PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from…
The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources…
Children with cancer experience suffering, particularly at the end of life. Pediatric hematology/oncology (PHO) fellows need dedicated palliative care (PC) training in order to adequately manage this suffering. Our objectives were to understand (1)…
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…
BACKGROUND: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of…
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This…
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This…
OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by…
OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died…
OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending…
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians…
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative,…
OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care…
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.…
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a…
CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To…
BACKGROUND: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. OBJECTIVE: To…
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…
CONTEXT: Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. OBJECTIVES: The objective of this study…
Up to 40% of patients cared for by pediatric palliative care teams have severe neurologic impairment (SNI). Children with SNI have congenital/chromosomal, central nervous system static or progressive conditions that result in lifelong cognitive…
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for…
CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies…
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their…
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care.…
