Browsing by Subject "End-of-Life Care"

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    End-of-life decision-making among African Americans with serious illness
    (2015-05-07) Smith-Howell, Esther Renee; Hickman, Susan E.; Rawl, Susan M.; Hebermann, Barbara; Morgan, Susan E.; Perkins, Susan M.
    African Americans' tendency to choose life-prolonging treatments (LPT) over comfort focused care (CFC) at end-of-life is well documented but poorly understood. There is minimal knowledge about African American (AA) perceptions of decisions to continue or discontinue LPT. The purpose of this study was to examine AA family members' perceptions of factors that influenced end-of-life care decision-making for a relative who recently died from serious illness. A conceptual framework informed by the literature and the Ottawa Decision Support Framework was developed to guide this study. A retrospective, mixed methods design combined quantitative and qualitative descriptive approaches. Forty-nine bereaved AA family members of AA decedents with serious illness who died between 2 to 6 months prior to enrollment participated in a one-time telephone interview. Outcomes examined include end-of-life treatment decision, decision regret, and decisional conflict. Quantitative data were analyzed using descriptive statistics, independent-sample t-tests, Mann-Whitney U tests, chi-square tests, Spearman and Pearson correlations, and linear and logistic regressions. Qualitative data were analyzed using content analysis and qualitative descriptive methods. Family members' decisional conflict scores were negatively correlated with their quality of general communication (rs = -.503, p = .000) and end-of-life communication scores (rs = -.414, p = .003). There was a significant difference in decisional regret scores between family members of decedents who received CFC versus those who received LPT (p = .030). Family members' quality of general communication (p = .030) and end-of-life communication (p = .014) were significant predictors of family members' decisional conflict scores. Qualitative themes related to AA family members' experiences in end-of-life decision-making included understanding (e.g., feeling prepared or unprepared for death), relationships with healthcare providers (e.g., being shown care, distrust) and the quality of communication (e.g., being informed, openness, and inadequate information). Additional qualitative themes were related to perceptions of the decision to continue LPT (e.g., a lack of understanding, believe will benefit) or discontinue LPT (e.g., patient preferences, desire to prevent suffering). In conclusion, this study generated new knowledge of the factors that influenced AA bereaved family members' end-of-life decision-making for decedents with serious illnesses. Directions for future research were identified.
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    High-Quality Nursing Home and Palliative Care-One and the Same
    (Elsevier, 2022) Ersek, Mary; Unroe, Kathleen T.; Carpenter, Joan G.; Cagle, John G.; Stephens, Caroline E.; Stevenson, David G.; Medicine, School of Medicine
    Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches’ effectiveness is inadequate. In this paper, we review the existing evidence and challenges with each of these three approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high quality nursing home care. To achieve this vision, we make four recommendations: 1) Promote internal palliative and end-of-life care capacity through comprehensive training and support; 2) Ensure that state and federal payment policies and regulations do not create barriers to delivering high quality, person-centered palliative and end-of-life care; 3) Align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and 4) Support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this paper describes some key strategies to make this goal a reality.