The Community Perspective on Potentially Inappropriate Treatment.

RATIONALE: Medical interventions that prolong life without achieving an effect that the patient can appreciate as a benefit are often considered futile or inappropriate by health care providers. In recent years, a multi-center guideline has been released with recommendations on how to resolve conflicts between families and clinicians in these situations and to increase public engagement. Although lay-people are acknowledged as important stakeholders, their perceptions and understanding of the terms "potentially inappropriate" or "futile" treatment have received little formal evaluation. OBJECTIVE: To evaluate the community perspective about the meaning of futile treatment. METHODS: Six focus groups (two groups each of ages 75) were convened to explore what constitutes futile treatment and who should decide in situations of conflict between doctors and families. Focus group discussions were analyzed using grounded theory. RESULTS: There were thirty-nine participants aged 18 or older with at least one previous hospitalization (personal or by immediate relative). When asked to describe "futile," or "inappropriate" treatment, community members found the concept difficult to understand and the terminology inadequate, though when presented with a case describing inappropriate treatment, most participants recognized it as the provision of inappropriate treatment. Several themes emerged regarding participant difficulty with the concept, including inadequate physician-patient communication, lack of public emphasis on end-of-life issues, skepticism that medical treatment can be completely inappropriate, and doubts and fears that medical futility could undermine patient/family autonomy. Participants also firmly believed that in situations of conflict, families should be the ultimate decision-makers. CONCLUSIONS: Public engagement in policy development and discourse around medical futility will first require intense education to familiarize the lay-public about use of inappropriate treatment at the end of life.