Journal of pain and symptom management
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J Pain Symptom Manage · Nov 2024
Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care.
Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. ⋯ We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.
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J Pain Symptom Manage · Nov 2024
'Recommendations for deprescribing of medication in the last phase of life: an international Delphi study'.
Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life. ⋯ A high level of consensus was reached on recommendations on potential deprescription of several medications for patients with a life expectancy of six months or less.
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J Pain Symptom Manage · Nov 2024
Start of the COVID-19 pandemic and palliative care unit utilization: a retrospective cohort study.
People with noncancer diagnoses have poorer access to palliative care units (PCUs) or hospices compared to those with cancer diagnoses. The COVID-19 pandemic disrupted how specialist palliative care services were delivered and utilized. ⋯ Despite historically poor PCU/hospice access, the COVID-19 pandemic created circumstances that may have enabled unprecedented utilization in individuals with noncancer diagnoses in our cohort.
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J Pain Symptom Manage · Nov 2024
Case ReportsCompassionate Ventilator Release In Patients With Neuromuscular Disease: A Two-Case Comparison.
Dyspnea, the subjective sensation of breathlessness, is a distressing and potentially traumatic symptom. Dyspnea associated with mechanical ventilation may contribute to intensive care unit (ICU) associated post-traumatic stress disorder and impaired quality of life. Dyspnea is both difficult to alleviate and a cause of significant distress to patients, their loved ones, and care providers People living with neuromuscular disease, such as amyotrophic lateral sclerosis (ALS) or myasthenia gravis (MG), often rely on a ventilator at late stages of illness due to complications of progressive respiratory muscle weakness and paralysis. ⋯ Although limited recommendations have been published specific to patients with ALS, no guidelines currently exist for the terminal liberation from mechanical ventilation in patients experiencing respiratory muscle insufficiency from a neuromuscular disease. Further research on this topic is needed, including creation of a protocol for ventilator release in patients with neuromuscular disease. The following case reports detail the dissimilar EOL experiences of two patients with different forms of neuromuscular disease.
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J Pain Symptom Manage · Nov 2024
Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions.
Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). ⋯ In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life.