Perspectives of Hospice Medical Directors on Challenges and Solutions for Improving Care for Persons Living With Dementias (PLWD) and Their Caregivers.

Background Persons living with dementia (PLWD) on hospice care face unique end-of-life (EoL) care challenges. A larger proportion of PLWD outlive the 6-month hospice eligibility requirement compared to other terminally ill patients, which leads to high rates of hospice live discharge. Hospice medical directors (HMDs) are physicians with unique insights into both the clinical aspects of care and the administrative and regulatory guidelines of hospice care delivery. Given their role as frontline clinicians and systems-level leaders, HMDs are uniquely positioned to provide insights into the challenges of caring for PLWD and identify potential solutions to improve hospice care. Objective To characterize the perspectives of HMDs regarding (1) the challenges of providing hospice care to PLWD and their caregivers and (2) suggestions to improve hospice care for this population. Methods Semi-structured interviews with certified HMDs (N = 17) were conducted. Data were analyzed using thematic analysis. Results HMDs expressed concern about (1) caregiver burnout, (2) caregiver-initiated live discharge, and (3) hospice-initiated live discharge in PLWD and their caregivers. To address these challenges, HMDs suggested (1) establishing a dementia-specific hospice program, (2) extending hospice benefit availability for PLWD, and (3) creating a step-down service for families experiencing live discharge from hospice. Conclusion HMD participants suggested providing additional supports and/or reforming the current Medicare hospice benefits to better address end-of-life care for PLWD, who may require prolonged and intensive end-of-life support. Further research is needed to assess the feasibility of the improvements to hospice care proposed by HMDs.