Background: Several methods exist to elicit end-of-life treatment preferences. However, little work has been done to elicit from patients themselves the aspects of treatment decision-making most important to them when making end-of-life treatment decisions.
Methods: Participants consisted of 23 patients, 60 years of age and older with a primary diagnosis of congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or cancer identified by their physicians as having a limited life expectancy. They took part in in-depth semistructured interviews and focus groups in which they were asked to discuss how they had made previous decisions about the treatment of their illness and/or would think about making future decisions. Transcripts were analyzed qualitatively using the constant comparative method.
Results: There were three major influences on treatment preferences: treatment burden, treatment outcome, and the likelihood of the outcome. Treatment burden was bearable if the outcome of treatment was desirable, but participants were less willing to endure the burden for more marginal outcomes. Certain outcomes were so unacceptable that they determined preference regardless of burden. However, some participants revealed that their willingness to tolerate these adverse outcomes may increase as their illness progresses. Although participants generally believed that physicians know with certainty the outcomes of treatment, most understood the concept of uncertainty, and the likelihood of a given outcome influenced their preferences.
Conclusions: A patient-centered approach to advance care planning needs to incorporate a consideration of both treatment burdens and treatment outcomes, including the likelihood of these outcomes. Patients' valuations of these outcomes may change over time.