PURPOSE: The purpose of this study was to assess patient participation in advance care planning (ACP) and the decision to enroll in hospice. METHODS: One hundred sixty-five family members of patients who died in hospice between January 2004 and September 2004 returned an anonymous survey (165/380; 43% response rate). RESULTS: Forty-nine percent of family members reported that the patient was not involved in the hospice enrollment decision. The majority of respondents (78%) reported one or more people helped make the decision to enroll in hospice. For patients reported as being involved in the decision to enroll in hospice (either independently or in a shared capacity) they were more likely to have cancer (odds ratio [OR] = 2.3, p = 0.02), die at home (OR = 3.3, p = 0.006), have a length of stay in hospice greater than 7 days (OR = 2.1, p = 0.03), and less likely to have dementia (OR = 0.43, p = 0.001). White respondents were more likely to report having ACP discussions with the patient about: feeding tubes (OR = 4.7; p = 0.001), cardiopulmonary resuscitation (CPR; OR = 3.9; p = 0.002), or mechanical ventilation (OR = 2.7; p = 0.02) than non-white respondents. White respondents were more likely than non-white respondents to report that the patient had a written advance directive (OR = 4.2, p = 0.001). DISCUSSION: These data indicate that some patients are not actively involved in the decision to enroll in hospice and that others, often physicians and family members, are making these decisions for the patient collaboratively. These data support the need for early education and interventions that assist patients and families in discussing ACP preferences and the need for greater understanding of how involved patients want to be with the decision to enroll in hospice.
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