Context

With rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP).

Objectives

To characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it.

Methods

Semi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel.

Results

Four key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes.

Conclusion

Hospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care.

Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code. Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments. Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method. Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences. Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.