Measuring and Improving Patient Experience in Care for Persons with Advanced Illness: Methodology Matters

As health care providers throughout the United States increasingly focus on improving care for persons with advanced illness, measuring and understanding patient (and family) satisfaction with care becomes especially important. Patient satisfaction, of course, is increasingly incorporated into all sorts of quality measurement and improvement processes, but it has special significance in caring for those with serious, life-threatening illnesses. Both the patients’ problems and the care they receive are particularly complex and multidimensional. In caring for patients for whom a cure is unlikely, quality of life and patient satisfaction with care take on additional importance. As a result, substantive, continuing engagement of patients and their families in decision making about care becomes a goal of the caring enterprise, not just a means to other goals. And unlike many other health services, care of those with advanced illness is not a one-time intervention; caring occurs, and changes, over time.