OBJECTIVES: The burden of suffering among patients with end-stage chronic diseases may be greater than those of cancer patients, as a result of longer duration of illness trajectory and high prevalence of symptoms, yet they may be less likely to…
This article discusses the need for person-specific planning for the increasing numbers of disabled children with life-limiting and life-threatening conditions. It describes the system developed in Nottingham for this client group to have a…
Abstract Background: When a patient is expected to die, the ideal plan of care focuses on comfort. Prior investigation of application of one institution's end-of-life symptom management order (ESMO) protocol suggested that comfort measures were often…
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…
PURPOSE: To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS: This cross-sectional study included children between the…
Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40…
Background Psychological tests can be useful to record adaptive and maladaptive behaviours of children with intellectual disability. The objective of this study was to describe the adaptive and maladaptive behaviour of children and adolescents with…
OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…
OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…
The purpose of this paper is to investigate the impact of a Do Not Attempt Resuscitation (DNAR) order on subsequent decision making relating to the clinical care of the patient. The approach taken was a questionnaire based on a hypothetical clinical…
Prior studies have suggested that sleep disturbance is common in Cornelia de Lange Syndrome (CdLS); however, the nature of this sleep disturbance has not been well characterized. In this study, we evaluate the prevalence of sleep disordered breathing…
Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be effective, health care professionals who provide hospital…
A behavior therapy approach for obtaining cooperation during needle sticks was provided to 8 pediatric patients with intellectual and developmental disabilities. Therapy was provided during mock needle sticks. Hand lotion was applied to simulate…
Background Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these…
ABSTRACT: BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In…
BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…
Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined…
This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions…
To identify causes of death (COD) in propositi with Cornelia de Lange syndrome (CdLS) at various ages, and to develop guidelines to improve management and avoid morbidity and mortality, we retrospectively reviewed a total of 426 propositi with…
This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a)…
Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The…
The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss…
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…
Improvements in protocol-driven clinical trials and supportive care for children and adolescents with cancer have reduced mortality rates by more than 50% over the past three decades. Overall, the 5-year survival rate for patients with pediatric…
Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a…
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…
WHO Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of…
Guideline or diagnostic criteria in clinical practice assist physicians in their clinical decision-making and improve health outcomes for patients. Diagnostic and classification criteria are based on evidence from rigorously conducted controlled…
