Journal of palliative medicine
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Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. ⋯ The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.
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Innovation is needed to improve care of the seriously ill, and there are important opportunities as we transition from a volume- to value-based payment system. Not all seriously ill are dying; some recover, while others are persistently functionally impaired. ⋯ A series of articles written by experts provided the basis for debate and guidance in formulating a path forward to develop an accountability system for community-based programs for the seriously ill, outlined in this article. As we innovate in existing population-based payment programs such as Medicare Advantage and develop new alternative payment models, it is important and urgent that we develop the foundation for accountability along with actionable measures so that the healthcare system ensures high-quality person- and family-centered care for persons who are seriously ill.
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It is unknown how many hospice enrollees elect to be full code and if this is associated with higher hospice live discharge rates. ⋯ Those electing full code status on admission to hospice are at high risk of live hospice discharge after short enrollments, particularly nonwhite enrollees.
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Patient- and family-centeredness of care is particularly important for individuals with serious illness. In this article, we describe methodological challenges of using measures of patient- and family-centeredness in accountability initiatives such as public reporting and pay for performance. We begin with background on measuring patient- and family-centered care using standardized surveys, describe evidence of the use of these measures for quality improvement, and highlight methodological challenges in the development and implementation of these measures for use in accountability. To ensure that patient- and family-centeredness is the cornerstone of public and private accountability initiatives designed to promote high-quality care to seriously ill patients, we recommend development of (1) a nationally endorsed survey instrument that assesses patient and family experiences of serious illness care across the full range of patient trajectories and care settings in which this care is provided; (2) administrative data infrastructure that allows for identification and outreach to the most knowledgeable respondents for the survey, regardless of the patient's setting of care; and (3) a broad toolkit of quality improvement approaches to ensure that as the emphasis on accountability grows, providers across settings have access to tools that can help them improve patient- and family-centeredness of care for the seriously ill.
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To ensure seriously ill people and their families receive high-quality primary and specialty palliative care services, rigorous methods are needed to prospectively identify this population. ⋯ Standard administrative data are inadequate to identify this population. Defining the seriously ill denominator with high specificity, as described here, will focus efforts toward the highest-need segment of the population, who may indeed benefit most.