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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Background: Comfort care without transport to hospital was not traditionally a paramedic practice. The novel Paramedics Providing Palliative Care at Home Program includes a new clinical practice guideline, medications, a database to manage and share goals of care, and palliative care training. This study determined essential elements for implementation, scale, and spread of this Program. ⋯ Early engagement of diverse stakeholders and planning for sustainability is key. Conclusion: This framework analysis using CFIR constructs can guide successful scale and spread of the program. The constructs of Outer setting: Cosmopolitanism; Characteristics of the intervention: Adaptability; Inner Setting: Implementation climate; and Processes: Engagement, and Planning, emerged as essential.
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Background: End-stage liver disease (ESLD) is associated with high morbidity and mortality, with liver transplantation as the only existing cure. Despite reduced quality of life and limited life expectancy, referral to palliative care (PC) rarely occurs. Moreover, there is scarcity of data on the appropriate timing and type of PC intervention needed. ⋯ Conclusions: Only 37 (27%) patients delisted or declined for liver transplantation were referred to PC. MELD score and degree of decompensation were important factors associated with referral. Continued exploration of these data could help guide future studies and help determine timing and criteria for PC referral.
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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.