Browse Items (251 total)

Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the…

Background: The majority of children die in pediatric hospitals after a decision to withhold or withdraw life sustaining interventions. Tensions and conflicts at the end of life (EOL) are not rare in pediatric hospitals. Objective: To investigate how…

Background: Children's hospital professionals generally receive standardized training in Pediatric Advanced Life Support (PALS) but they are not regularly trained in the provision of end-of-life care in situations where death is anticipated. To…

CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based…

CONTEXT: Workforce productivity is poorly defined in healthcare. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness.…

CONTEXT: Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final…

As a fellowship trained palliative care physician impressed by the complementarity of Palliative and Integrative Medicine, I am reporting on recent experiences with healing touch in our pediatric hospital (Children's Hospital and Medical Center in…

CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is…

Context: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment.Objectives: The objective of this study was to…

CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children…

CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the…

CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe…

Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to…

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer…

CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…

Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice…

Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the…

Context No consensus exists about the most appropriate dose ratio for conversion from parenteral to oral ketamine. Objectives To confirm that a 1:1 dose ratio is suitable for converting subcutaneous (s.c.) to oral ketamine in cancer patients. Methods…

Communication with children who have life-threatening illnesses is a major challenge. Communication practices are greatly influenced by factors such as the child’s age, the parents’ wishes, and the cultural norms. This article presents the case…

It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to…

The results of a novel approach to the use of ketamine in refractory cancer pain are reported. In this prospective, multicenter, unblinded, open-label audit, 39 patients (with a total of 43 pains) received a short duration (3 to 5 days) ketamine…

The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult…

The complexity of assessing the impact of palliative care is much greater than in other fields of medicine, due to the shortcomings of traditional outcome indicators. We conducted a prospective study to describe the patient's quality of life at the…

Assess pain regularly throughout the course of treatment. Follow the WHO Analgesic Ladder for selecting pain-relief drugs, that is, a stepwise approach to analgesic management, where a child's pain severity determines the level of analgesics. Use…

The effectiveness of analgesia during sickle cell crisis was examined in this descriptive, exploratory study. Pain scores (using the African-American Oucher and the Adolescent Pediatric Pain Tool) and analgesics administered were examined during a…

Concerns about the safety of therapy with methadone, which may arise because of its pharmacokinetic characteristics and inappropriate dosing, may deter clinicians from using this drug, especially in elderly patients. Experience is accumulating that…

The purpose of this study was to evaluate the need for pain medication and the adequacy or inadequacy of the analgesia achieved, in children with cancer who died while in terminal care. Of the 100 pediatric patients with cancer treated at the…

Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for…

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research…

Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is…

The purpose of this quasi-experimental (pre and posttest) study was to test a model pain management program (PMP) to implement the American Pain Society (APS) quality assurance standards for the management of acute and chronic cancer pain using a…

Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the child's family; and families may require help with decisions…

Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on…

A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236…
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