Suchergebnisse

This review proposes that the end of life is a uniquely contemporary life course stage. Epidemiologic, technological, and cultural shifts over the past two centuries have created a context in which dying has shifted from a sudden and unexpected event to a protracted, anticipated transition following an incurable chronic illness. The emergence of an end-of-life stage lasting for months or even years has heightened public interest in enhancing patient well-being, autonomy, and the receipt of medical care that accords with patient and family members' wishes. We describe key components of end-of-life well-being and highlight socioeconomic and race disparities therein, drawing on fundamental cause theory. We describe two practices that are critical to end-of-life well-being (advance care planning and hospice) and identify limitations that may undermine their effectiveness. We conclude with recommendations for future sociological research that could inform practices to enhance patient and family well-being at the end of life.

CONTEXT. Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority. OBJECTIVES. This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions. METHODS. This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011-2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics. RESULTS. No or minimal caregiving burden is associated with ≥0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with ≥0.80 probability of giving such reports, even when perceiving high burden. CONCLUSION. Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.