Journal of palliative medicine
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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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Background: Chronic obstructive pulmonary disease (COPD), the sixth leading cause of death in the United States, is associated with higher mortality rates in women. Women also experience tremendous symptom burden, including dyspnea, anxiety, and depression, in comparison to men with COPD. Palliative care (PC) provides symptom management and addresses advanced care planning for serious illness, but little is known about the use of PC in women with COPD. ⋯ None of the studies identified in this review focused specifically on women with advanced COPD receiving PC, despite the significant impact that this illness has on women. Conclusion: It remains unknown if any intervention is more beneficial than another for women with advanced COPD. Future research is needed to provide an understanding of the unmet PC needs of women with advanced COPD.
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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.
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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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There is a lack of report of conscious sedation used as a last resort therapy for alleviating severe symptoms. To achieve this goal, dexmedetomidine appears to be a promising option. We report a case of successful two-month long treatment of intravenous (IV) dexmedetomidine added to hydromorphone for intractable cancer pain, restlessness, severe sleep disorder, anxiety, and craving symptoms in a 40-year-old man with active polysubstance use, receiving escalating doses of opioids for intractable abdominal cancer pain together with benzodiazepines. ⋯ We did not observe anxiety or agitation rebound during short periods of discontinuation of the infusion. Neither side effects nor tolerance were observed over time. Further research is needed to investigate the indications for conscious sedation and analgesia with dexmedetomidine in palliative patients with a prognosis that is longer than few weeks or uncertain.