Journal of palliative medicine
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Practice Guideline
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.
Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. ⋯ The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.
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Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. ⋯ The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
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Background: Information routinely collected during a palliative care consultation request may help predict the level of complexity of that patient encounter. Objectives: We examined whether patient and consultation characteristics, as captured in consultation requests, are associated with the number of unmet palliative care needs that emerge during consultation, as an indicator of complexity. Design: We performed a retrospective cohort analysis of palliative care consultations. ⋯ The hospital intensive care unit, compared with the general floor, was associated with higher complexity scores. In contrast, outpatient and residence, compared with the general floor, were associated with lower complexity scores. Conclusion: Patient, disease, and care setting factors known at the time of specialty palliative care consultation request are associated with level of complexity, and they may inform teams about the right service provisions, including time and expertise, required to meet patient needs.
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Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U. S. pediatric surgical patients. ⋯ White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09-8.56, p = 0.044). Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being "sicker" and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.
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Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible. Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions. ⋯ However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.