Are we referring patients to hospice too late? Patients' and families' opinions.

BACKGROUND: Patients typically receive hospice care only in the last days or weeks of life, and there is widespread agreement among experts that patients enroll in hospice too late. However, it is not known whether patients and their families believe that they are enrolling in hospice too late.

DESIGN: Prospective interview study.

SETTING: Not-for-profit, Medicare-certified hospice.

PATIENTS: Patients and families recruited at consecutive hospice enrollment visits.

MEASUREMENTS: Interviews at the time of hospice enrollment and 1 month after death or discharge from hospice assessed patients' and families' perceptions of the timing of hospice enrollment ("too soon," "too late," "at about the right time").

RESULTS: Interviews were conducted at 274 enrollment visits. Very few patients (1/85; 1%) and family members (12/261; 5%) said that they believed they were enrolling in hospice too late. In follow-up interviews with families after the patient's death or discharge, families were more likely to believe that enrollment was too late (n = 38/218; 17%; sign test p < .001). Families who believed they had enrolled too late had shorter lengths of stay in hospice compared to those who said that enrollment was too soon or at the right time (median 10 vs. 24 days; rank-sum test p < 0.001).

CONCLUSION: Despite late enrollment in hospice and very short lengths of stay, most patients and families believe that they are enrolling in hospice at the right time.