Journal of palliative medicine
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Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. ⋯ Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.
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Background: The population of older adults who are unpartnered and childless (i.e., "kinless") is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of "kinless" older adults. Objectives: To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death). ⋯ Results: "Kinless" older adults (reference = has partner, has child) were the least likely group to visit the hospital (two or more times; odds ratio [OR] = 0.74, confidence interval [CI] = 0.70-0.77), emergency department (one or more times; OR = 0.90, CI = 0.86-0.93), and intensive care unit (one or more times; OR = 0.71, CI = 0.67-0.75) before death. Conclusions: "Kinless" older adults in Denmark were less likely to experience medically intensive care at the EoL. Further research is needed to understand factors associated with this pattern to ensure that all individuals receive high quality EoL care regardless of their family structure and family tie availability.
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Background: Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown. Objective: Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization. Design: Descriptive cohort analysis. ⋯ Those who were discharged to SNF were more likely to receive radiation compared to White patients. Conclusions: Younger patients with cancer discharged to SNF were unlikely to receive cancer treatment and hospice care before death. Racial disparities exist in cancer treatment receipt and hospice use warranting further investigation.
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Cachexia is a multifactorial syndrome that is common in cancer and chronic disease. It is often underdiagnosed and therefore goes untreated or undertreated. ⋯ In this article, a group of clinicians and researchers across cancer care, nutrition, and exercise offers tips about assessment, classification, and management of cachexia, with attention to its stage. The required multimodal management of cachexia mirrors well the interprofessional collaboration that is the mainstay of interdisciplinary palliative care and attention to screening, diagnosis, and management of cachexia is critical to maximize patients' quality of life.