Journal of palliative medicine
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Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design: Post hoc secondary analysis of data from a qualitative cross-sectional study. ⋯ Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts.
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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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In 2015, Mylan pharmaceuticals received final approval from the Food and Drug Administration for its Supplemental Abbreviated New Drug Application and introduced three new intermediate strengths of transdermal fentanyl patches to the U. S. drug market.1 With this approval, Mylan added 37.5 , 62.5, and 87.5 mcg/hr strength patches to existing 12, 25, 50, 75, and 100 mcg/hr strength patches. Today, these intermediate strength patches cost many times more than older strengths. In this commentary, we discuss the clinical implications of intermediate strengths of the fentanyl patch, explore mechanisms for price differences, and offer practice-based and policy solutions to address these differences.