Journal of pain and symptom management
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J Pain Symptom Manage · Aug 2024
Gender Differences Regarding Palliative Care Consultation Among Persons Hospitalized With Heart Failure.
Palliative care is increasingly recognized as an important aspect of heart failure (HF) management, but data on gender differences regarding palliative care needs are scarce. ⋯ As compared to men, women with HF were more severely impaired at the time of palliative care consult, and dedicated efforts to better address their needs are warranted.
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J Pain Symptom Manage · Aug 2024
Race and Socio-Economic Status Impact Withdrawal of Treatment in Young Traumatic Brain Injury.
Withdrawal of life-sustaining therapies (WDLST) in young individuals with traumatic brain injury (TBI) is an overwhelming situation often made more stressful by socioeconomic factors that shape health outcomes. Identifying these factors is crucial to developing equitable and goal-concordant care for patients and families. ⋯ The decision for WDLST in young patients with severe TBI may be influenced by cultural and socioeconomic factors in addition to clinical considerations.
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J Pain Symptom Manage · Aug 2024
Compassionate 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 · Aug 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.