• Jennifer Kapo, Joan Harrold, Janet T Carroll, Elizabeth Rickerson, and David Casarett.
• Division of Geriatric Medicine and Center for Bioethics, University of Pennsylvania, 19104, USA.
• J Palliat Med. 2005 Jun 1;8(3):521-7.

BackgroundPatients 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.DesignProspective interview study.SettingNot-for-profit, Medicare-certified hospice.PatientsPatients and families recruited at consecutive hospice enrollment visits.MeasurementsInterviews 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").ResultsInterviews 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).ConclusionDespite 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.

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