Role of written advance directives in decision making. Insights from qualitative and quantitative data

Abstract

OBJECTIVE: To understand the role of written advance directives (ADs) in medical decision making through examination of qualitative and quantitative data sources. We specifically wanted to address whether physicians unilaterally disregard advance directives. DESIGN: Block randomized controlled trial to improve decision making and outcomes of seriously ill patients. SETTING: Five academic medical centers. PATIENTS: Fourteen hospitalized, seriously III adults were randomized to receive an intervention of patient-specific information on prognoses and specially trained nurse to facilitate decision making. To be included in this analysis, patients reported having an AD and also met one of these criteria of severity: were comatose, had objective estimate of prognosis for surviving 2 months of 40% or less, or died during this hospital admission. MEASUREMENTS AND MAIN RESULTS: Quantitative data sources consisted of medical record review and interviews with the patient (when possible), surrogate, and responsible physician about prognosis, symptoms, preferences, and decision making. Qualitative data consisted of narratives by the nurse responsible for counseling and facilitating decision making. Each element of the quantitative database was reviewed, and a timeline of communication and decision making was constructed. Qualitative data were analyzed using grounded theory and narrative summary analysis. We compared and contrasted qualitative and quantitative data to better understand the role of ADs in decision making. In each case, the patient had a period of diminished capacity in which ADs should have been invoked. Advance directives played an important role in decision making of 5 of 14 cases, but even in those cases, life-sustaining treatment was stopped only when the patient was 'absolutely, hopelessly ill.' In two of these cases, the family member wrongly reported that the patient had an AD, and in the remaining seven cases, ADs had a limited role. The limited role could not be traced to a single explanation. Rather, a complex interaction of several factors was identified: patients were not considered hopelessly ill, so the directive was never seen as applicable and a transition in the goals of care did not 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 unilaterally disregard a patient's preference in any of the cases. Two factors that enhanced the role of the AD were an available surrogate who was able to advocate for the patient and open communication between the physician and the surrogate in which the patient's prognosis was reconsidered. CONCLUSIONS: Our findings indicate that physicians are not unilaterally disregarding patients' ADs. Despite the patients' serious illnesses, family members and physicians did not see' them as 'absolutely, hopelessly ill.' Hence, ADs were not considered applicable to the majority of these cases. Cases in which ADs had an impact evidenced open negotiation with a surrogate that yielded a transition in the goals of care.