Journal of palliative medicine
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Background: Potentially burdensome transitions at the end of life (e.g., repeated hospitalizations toward the end of life and/or health care transitions in the last three days of life) are common among residential care/assisted living (RC/AL) residents, and are associated with lower quality of end-of-life care reported by bereaved family members. We examined the association between state RC/AL regulations relevant to end-of-life care delivery and the likelihood of residents experiencing potentially burdensome transitions. Methods: Retrospective cohort study combining RC/AL registries of states' regulations with Medicare claims data for residents in large RC/ALs (i.e., 25+ beds) in the United States on the 120th day before death (N = 129,153), 2017-2019. ⋯ Results: We found a lack of associations between potentially burdensome transitions and regulations regarding third-party services and staffing. There were small associations found between regulations related to medication management (i.e., requiring regular medication reviews, permitting direct care workers for injections, requiring/not requiring licensed nursing staff for injections) and potentially burdensome transitions. Conclusions: In this cross-sectional study, the associations of RC/AL regulations with potentially burdensome transitions were either small or not statistically significant, calling for more studies to explain the wide variation observed in end-of-life outcomes among RC/AL residents.
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Background: Symptom burden assessment with the Edmonton Symptom Assessment System (ESAS) has been widely studied among patients in outpatient palliative care (OPC), but fewer reports in home-based palliative care (HBPC), and none has assessed the prognostic value of ESAS scores in HBPC. Methods: This retrospective cohort study compares symptom burden and its prognostic value in adult patients receiving OPC and HBPC services between January 1, 2019, and June 30, 2021. ⋯ ESAS was prognostic of survival in both settings (Hazard ratio 1.18-1.64, p < 0.01). Conclusion: Symptom burden is an independent prognosticator of survival in HBPC and OPC in this community-based setting.
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Background: Patients with life-limiting cancers are commonly prescribed opioids to manage pain, dyspnea, and cough. Proper prescription opioid disposal is essential to prevent poisonings and deaths. Objective: We examined opioid disposal practices of patients referred to a Canadian outpatient palliative care clinic (OPCC). ⋯ Conversely, reports of an increased amount of opioid use in the past six months were negatively associated with routine disposal of opioids (OR: 0.38, 95% CI: 0.16-0.88). Conclusion: The high prevalence of people with life-limiting illnesses who do not routinely dispose their opioids requires increased attention. Interventions, such as education, are needed to reduce medication waste and opioid-related harms.
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Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. ⋯ What serious illness "took away" from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.
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As palliative care (PC) programs rapidly grow and expand across settings, the need to measure, improve, and standardize high-quality PC has also grown. The electronic health record (EHR) is a key component of these efforts as a central hub of care delivery and a repository of patient and system data. Deliberate efforts to leverage the EHR for PC quality improvement (QI) can help PC programs and health systems improve care for patients with serious illnesses. This article, written by clinicians with experience in QI, informatics, and clinical program development, provides practical tips and guidance on EHR strategies and tools for QI and quality measurement.