Implementing the Bereaved Family Survey for an advanced cancer population.

Abstract

76 Background: Despite being endorsed as a National Quality Forum measure, the Bereaved Family Survey (BFS), a tool to assess a patient’s end-of-life (EOL) experience, has not been broadly used outside the Veteran’s Affairs Health System or in the outpatient setting. We adapted the BFS for an advanced cancer population and implemented it at an academic health system to identify areas for quality improvement in EOL care. Methods: Between August 2016 and May 2017, we surveyed caregivers of advanced cancer decedents. We included English-speaking decedents > 18 years of age who were continuity patients of a health system oncologist and had documentation of metastatic disease in either problem list, oncology notes, or advanced imaging. Death was verified in the chart or by obituary found via internet search. Caregivers surveyed were the appointed healthcare agent in an advance directive or the first listed contact. Scoring was done via the top-box approach. Surveys were mailed 3 months after death with a follow-up post-card reminder and phone-call at 2 and 4 weeks, respectively. Results: Of 285 eligible decedents, 242 caregivers were mailed surveys with 83 completed (34% response rate) of whom 28% died in the hospital. Mean overall BFS score was 75 out of 100. Ratings were high for overall care quality (78% Always/Usually) and staff caring (74% Always) with lower ratings for communication (58% Always), emotional/spiritual support (37% Always with 30% not wanting support) and pain control (56% Always/Usually uncomfortable). Nearly 84% of respondents felt their loved one died in the right place and 67% felt staff caring for the patient provided a dignified death. 74% of patients were referred to hospice with 64% of caregivers stating the hospice referral was timely. Write-in responses mentioned concerns about caregiver support, the quality and timeliness of hospice care and communication between physician and patient/caregiver. Over half of statements were positive remarks about a physician or ancillary staff member. Conclusions: A post-mortem survey implemented for an advanced cancer population received a modest response rate but collected valuable information regarding gaps in care quality to drive quality improvement.