ROLE OF WRITTEN ADVANCE DIRECTIVES IN DECISIONMAKING - INSIGHTS FROM QUALITATIVE AND QUANTITATIVE DATA

OBJECTIVE: To understand the role of written advance directives (ADs) in medical decision making through examination of qualitative and quan titative data sources. We specifically wanted to address whether physi cians unilaterally disregard advance directives. DESIGN:Block randomiz ed controlled trial to improve decision making and outcomes of serious ly ill patients, SETTING: Five academic medical centers. PATIENTS:Four teen hospitalized, seriously ill adults were randomized to receive an intervention of patient-specific information on prognoses and speciall y trained nurse to facilitate decision making. To be included in this analysis, patients reported having an AD and also met one of these cri teria of severity: were comatose, had objective estimate of prognosis for surviving 2 months of 40% or less, or died during this hospital ad mission. MEASUREMENTS AND MAIN RESULTS: Quantitative data sources cons isted of medical record review and interviews with the patient (when p ossible), surrogate, and responsible physician about prognosis, sympto ms, preferences, and decision making. Qualitative data consisted of na rratives by the nurse responsible for counseling and facilitating deci sion making, Each element of the quantitative database was reviewed, a nd a timeline of communication and decision making was constructed. Qu alitative data were analyzed using grounded theory and narrative summa ry analysis, We compared and contrasted qualitative and quantitative d ata to better understand the role of ADs in decision making, In each c ase, the patient had a period of diminished capacity in which ADs shou ld have been invoked. Advance directives played an important role in d ecision making of 5 of 14 cases, but even in those cases, life-sustain ing treatment was stopped only when the patient was ''absolutely, hope lessly ill.'' In two of these cases, the family member wrongly reporte d that the patient had an AD, and in the remaining seven cases, ADs ha d a limited role. The limited role could not be traced to a single exp lanation, Rather, a complex interaction of several factors was identif ied: patients were not considered hopelessly ill, so the directive was never seen as applicable and a transition in the goals of care did no t occur; family members or the designated surrogate were not available , were ineffectual, or were overwhelmed; or the content of the AD was vague, or not applicable to the clinical situation, and the intent in completing the AD was never clarified. A physician did not unilaterall y disregard a patient's preference in any of the cases, Two factors th at enhanced the role of the AD were an available surrogate who was abl e to advocate for the patient and open communication between the physi cian and the surrogate in which the patient's prognosis was reconsider ed. CONCLUSIONS: Our findings indicate that physicians are not unilate rally disregarding patients' ADs. Despite the patients' serious illnes ses, family members and physicians did not see them as ''absolutely, h opelessly ill.'' Hence, ADs were not considered applicable to the majo rity of these cases. Cases in which ADs had an impact evidenced open n egotiation with a surrogate that yielded a transition in the goals of care.