Abstract

Background and objectives: Definitions of medical futility, offered by healthcare professionals, bioethicists and other experts, have been rigorously debated by many investigators, but the perceptions of patients of futility have been explored only by a few. Patients were allowed to discuss their concerns about end-of-life care, so that their ideas about treatment futility or utility could be extrapolated by us.

Methods: In this cross-sectional study, in-depth, semistructured interviews were conducted with 30 elderly people who were receiving outpatient care in a large, urban Veterans Affairs medical centre in the US. Each of their healthcare providers was also interviewed. Participants were asked to consider four terms commonly used in advance directive forms (ie, life-sustaining treatment, terminal condition, state of permanent unconsciousness and decision-making capacity) and to discuss what these terms meant to them. Audiotapes of the open-ended interviews were transcribed and responses were coded and categorised by constant comparison, a commonly used qualitative method.

Results: The following four factors were taken into account by the participants when discussing end-of-life interventions and outcomes: (1) expected quality of life; (2) emotional and financial costs of treatment; (3) likelihood of treatment success; and (4) expected effect on longevity.

Conclusions: Although the terms “utility” or “futility” were not generally used by the participants, segments of speech indicating their perceptions of these terms were identified. Treatment was not always discussed in the same way by patients and providers, but seemed to reflect the same four concerns. Therefore, it may be fruitful for providers to focus on these concerns when discussing end-of-life treatment options with their patients.