Journal of palliative medicine
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Background: People with hematological malignancies can deteriorate rapidly to a terminal event and have variable levels of engagement when transitioning to palliative and end-of-life care. Objectives: To describe end-of-life care values and preferences of people with hematological malignancies and explore whether these align with hematology clinicians' perceptions. Design: Two matched anonymous quantitative cross-sectional surveys explored: (1) patients' values and preferences around manner and timing of discussions regarding life expectancy and prognosis, involvement in decision making, and concurrent integration of palliative care with active treatment; and (2) clinicians' perceptions of their patients' values and preferences in relation to prognostic information. ⋯ Clinicians generally underestimated most of these responses. Conclusion: Although our findings indicate that most people believe they would be comfortable discussing prognosis, life expectancy, and wishes at the end of life, clinicians were largely unaware of their preferences. This highlights the need to embed values clarification in routine care for each patient and family.
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Palliative care providers are frequently called to consult on patients with tenuous hemodynamics caused by an underlying serious illness. In this article, we describe a patient with end-stage renal disease who developed hypotension and severe pain due to calciphylaxis. ⋯ We describe challenges encountered when trying to attend to the providers' concerns and guide shared medical decision making with the patient and family. We also summarize the current limited knowledge about the effect of opioids on hemodynamics and highlight a topic in need of further exploration.
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Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. ⋯ Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation (r = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.
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Background: Nursing home (NH) residents are vulnerable to increased mortality after a natural disaster such as hurricanes but the specific vulnerability of NH residents on hospice and the impact on admission to hospice are unknown. Objectives: Exposure to Hurricane Irma (2017) was used to evaluate increased mortality among Florida NH residents by hospice status compared with the same time period in a nonhurricane year. Difference in hospice utilization rates poststorm for short- and long-stay NH residents was also examined. ⋯ For the rate of hospice enrollment poststorm among residents previously not on hospice, there was an increase in odds of enrollment among long-stay residents in 30 days (OR = 1.15, 95% CI: 1.02-1.23) and 90 days (OR = 1.12, 95% CI: 1.05-1.20) but not short-stay residents within 30 (OR = 1.02, 95% CI: 0.91-1.15) and 90 days (OR = 1.07, 95% CI: 0.99-1.15). Conclusion: Mortality in NH residents on hospice care increased in the aftermath of Hurricane Irma. In addition, NH residents not on hospice were more likely to be referred to hospice in the 30 days after the storm.
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Introduction: Peritoneal carcinomatosis (PC) afflicts women with advanced gynecologic cancers. Patients with PC often require ostomies, gastric tubes, or catheters to palliate symptoms, yet patients and caregivers report feeling unprepared to manage these devices. The purpose of this study was to develop and field test the Building Out Lifelines for Safety, Trust, Empowerment, and Renewal (BOLSTER) intervention to support patients and their caregivers after hospitalization for PC. ⋯ Two withdrew before participating in any study activity because they were "too overwhelmed." We excluded data from one caregiver who completed baseline measures with the patient's assistance. All remaining patients (5/5) and caregivers (4/4) completed outcome measures and recommended BOLSTER. Conclusion: BOLSTER is a technology-enhanced, nurse-led intervention that is feasible and acceptable to patients with gynecologic cancer-associated PC and their caregivers.