Browse Items (147 total)

Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate…

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

The presence in blood of proteins normally confined to the cytoplasm of brain cells is considered peripheral evidence of brain damage. Only recently have these proteins been measured in the blood of children at risk of brain damage. To show the value…

Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.…

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…

PURPOSE OF REVIEW: Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these…

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a…

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

A retrospective study of 54 patients who underwent feeding jejunostomy because of dysphagia on a neurologic basis was performed to determine risk factors affecting a postoperative mortality of 33% and six-month mortality of 67%. Advanced patient age,…

The aim of this study was to reach consensus about the prognostic factors when deciding the discharge destination from a hospital stroke unit, and to construct a prognostic conceptual framework. To realise an optimal integration of knowledge from…

Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated…

A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

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: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation…

Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all…

Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However,…

Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

We documented seizures in 33 of 68 (48.5%) children with congenital hydrocephalus not associated with myelomeningocele. Mental retardation (MR) and CNS malformations correlated with seizure occurrence; age at shunt insertion and number of shunt…

Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose…

BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…

BACKGROUND: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board…

PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is…

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers,…
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