Journal of palliative medicine
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Background: Currently, the definition and naming of reflexive hospice care (RHC) vary, hindering its correct application in hospice care. Aims and Objectives: The study aims to understand the meaning of RHC by clarifying its uses, attributes, antecedents, and consequences. Design: The study focused on concept analysis. ⋯ There is an urgent need to develop strategies, assessment tools, and courses for RHC to promote its application. Relevance to Clinical Practice: Terminally ill patients who provide RHC will have better quality-of-life outcomes and face death more peacefully. Identifying the concept of RHC can help nurses and other health care professionals who wish to serve patients and their families better in hospice care.
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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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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.