It is "too late" or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less

Context: Many family members of patients enrolled in hospice for less than seven days state that the hospice referral was made "at the right time." Objectives: To examine bereaved family members' perceptions of the timing of hospice referral to identify aspects of the referral process that can be improved. Methods: Open-ended interviews were conducted in seven hospice programs, interviewing bereaved family members of hospice patients who died within the first week of hospice enrollment. Results: Of the 100 narrative interviews, 99 respondents stated that their family member was either referred "too late" (n = 41) or "at the right time" (n = 58) to hospice services. When families stated that referral was "at the right time," their perceptions were based on the patient having refused earlier referral (n = 8), a rapid decline in the patient's condition resulting in the late referral (n = 20), or a belief in all things coming together as they were meant to (n = 11). In contrast, when families stated that referral was "too late," their reasons were centered on concerns with the health care providers' role in decision making (n = 24), with the leading concerns being inadequate physician communication (n = 7), not recognizing the patient as dying (n = 11), or problematic hospice delays in referral from the nursing home or home health agency (n = 4). Despite the patient refusing an earlier hospice referral, five family members believed the referral was "too late." Conclusion: Whereas family members identified expected concerns with communication, more than one in three stated an earlier hospice referral was not possible.