Understanding respect: learning from patients

Abstract

BACKGROUND: The importance of respecting patients and participants in clinical research is widely recognised. However, what it means to respect persons beyond recognising them as autonomous is unclear, and little is known about what patients find to be respectful. OBJECTIVE: To understand patients' conceptions of respect and what it means to be respected by medical providers. DESIGN: Qualitative study from an academic cardiology clinic, using semistructured interviews with 18 survivors of sudden cardiac death. RESULTS: Patients believed that respecting persons incorporates the following major elements: empathy, care, autonomy, provision of information, recognition of individuality, dignity and attention to needs. CONCLUSIONS: Making patients feel respected, or valued as a person, is a multi-faceted task that involves more than recognising autonomy. While patients' views of respect do not determine what respect means, these patients expressed important intuitions that may be of substantial conceptual relevance.