There is an identified problem with patients receiving suboptimal pain management at a hospice agency in the northwestern United States. At this agency, undertreatment of pain is prevalent. Evidence indicates that this may be a result of a lack of guidelines, education, and knowledge of appropriate prescribing. Known barriers to the correct prescription and administration of potent opioids in the hospice setting include prevailing beliefs, knowledge, skills, and attitudes, all of which can impact care negatively. Contextually, hospice principles mandate patient comfort and caregiver involvement in continuous quality improvement, which includes adequate and informed pain management. Moreover, hospice metrics demand requisite knowledge, skills, and attitudes for optimal care, including pain management at the end of life. The Academic Center for Evidence-Based Practice (ACE) star model was used to guide the development of an evidence-based, guideline-supported educational program that will improve pain management at the hospice agency when implemented. The purpose of this project was to use transdisciplinary expertise and team collaboration to develop the program and then to conduct a formative and summative evaluation utilizing experts to prepare the guidelines and process for implementation. Ten experts reviewed the guideline, the educational materials, the process, and the evaluation plan and conducted reviews using the AGREE II tool. The panel of experts agreed within the 6 AGREE domains. Future implementation of this guideline, translation process, and evaluation tool will impact social change through the empowerment of the clinical staff, patients, and caregivers to provide the best pain control and comfort at end of life, a vulnerable time for all patients.

Indiana University-Purdue University Indianapolis (IUPUI) / 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.