Journal of palliative medicine
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High-quality care for seriously ill patients aligns treatment with their goals and values. Failure to achieve "goal-concordant" care is a medical error that can harm patients and families. Because communication between clinicians and patients enables goal concordance and also affects the illness experience in its own right, healthcare systems should endeavor to measure communication and its outcomes as a quality assessment. Yet, little consensus exists on what should be measured and by which methods. ⋯ Improving serious illness care necessitates ensuring that high-quality communication has occurred and measuring its impact. Measuring patient experience and receipt of goal-concordant care should be our highest priority. We have the tools to measure both.
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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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Chronic pain associated with serious illnesses is having a major impact on population health in the United States. Accountability for high quality care for community-dwelling patients with serious illnesses requires selection of metrics that capture the burden of chronic pain whose treatment may be enhanced or complicated by opioid use. ⋯ Accountability for high quality care for community-dwelling patients requires selection of metrics that will capture the burden of chronic pain and beneficial use or misuse of opioids. Future research is warranted to identify, modify, or develop instruments that contain important metrics, demonstrate a balance between sensitivity and specificity, and address patient preferences and quality outcomes.
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Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. ⋯ Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers.
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Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. ⋯ High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.