BACKGROUND: Advance directives are a means of promoting patient autonomy in end-of-life decisions but are used infrequently. A recent federal law requires healthcare organizations to provide information to patients about advance directives. This study explored attitudes and behaviors related to the use of advance directives in three areas: familiarity with advance directives, reasons for completing or not completing advance directives and preferences for receiving information about advance directives. METHODS: A questionnaire was administered by personal interview to a nonrandomized convenience sample of 46 inpatients and 50 outpatients at a large, tertiary care, urban academic medical center in the summer of 1991. RESULTS: Most respondents (77%) had heard of either the living will or durable power of attorney for healthcare, but only 52% correctly understood the purpose of these documents. Twenty-nine percent of the sample had executed an advance directive. Those who had advance directives were older and considered themselves less healthy than did those without advance directives. Unfamiliarity with advance directives and procrastination were cited most often as reasons for not having an advance directive. Most subjects (65%) had spoken with someone, usually a family member or close friend, about preferences for treatment during a critical illness. Although they had rarely discussed advance directives, 83% anticipated that they would be comfortable doing so with a physician or a nurse. CONCLUSIONS: Advance directives are used infrequently to document treatment preferences. The success of programs to promote greater use of advance directives depends on a clearer understanding of the factors that influence both decision and action to execute an advance directive. Patients claim to be comfortable in discussing the topic and prefer that such discussions occur in the outpatient setting.

Method Up to 140 EU sites will enrol 1000 patients. Safety data are recorded at routine clinic visits for 2 years. Adverse drug reactions (ADR: a noxious, unintended drug response at therapeutic doses) and serious ADRs (SADR: ADRs that are lifethreatening; cause death, disability, congenital anomaly; require hospitalisation or an intervention to prevent permanent impairment) are collected. Results Data from 530 patients enrolled by 68 sites in 7 countries are included. Age was 69 ± 8.8 years (mean ± SD); IPF diagnosis duration was 1.8 ± 3.51 years; 81% were men. Median time in study was 5.5 months; total exposure was 284 person-years. Of 311 patients with ADRs, 85 discontinued due to ADR and 41 discontinued for other reasons. Approximately 1/3 of patients with ADRs had their dose adjusted.

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