Journal of palliative medicine
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Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews. Setting/Participants: People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. ⋯ Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54). Conclusion: An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services.
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Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. ⋯ Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.
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Background: Patients with serious illness may elect to transition their care to comfort measures only (CMO) while in the hospital. Although studies have shown that routine hospice care is underutilized, the rate of general inpatient hospice (GIP) use among CMO patients during their terminal admission remains unclear. Objectives: We sought to (1) examine the rate of GIP utilization and (2) identify factors associated with its use among hospitalized CMO decedents. ⋯ There was no difference in total LOS between the two groups. CMO decedents were much less likely to receive GIP in an ICU. The RI may help clinicians identify CMO patients who would benefit from GIP earlier in their terminal admission.
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Background: Effective communication with ill patients requires practice, yet, the traditional history overlooks patients' personal stories. This information is vital to determining goals of care and facilitates partnership by building trust. Objective: We implemented a narrative medicine exercise for students during their palliative medicine rotation to highlight humanism. ⋯ Conclusion: The power of uncovering patients' backgrounds and values was demonstrated, reinforcing a palliative medicine approach. Analysis showed a positive impact and the possibility of change to future practice. The intervention was feasible, well received, and encouraged reflection on the physician-patient relationship beyond the medical domain.
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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.