Engaging Survivors of Critical Illness in Health Care Assessment and Policy Development. Ethical and Practical Complexities

Health systems, granting agencies, and professional societies are increasingly involving patients and their family members in the delivery of health care and the improvement of health sciences. This is a laudable advance toward fully patient-centered medicine. However, patient engagement is not a simple matter, either practically or ethically. The complexities include (1) the physical limitations that patients and their family members may have, from traveling to meetings to special dietary needs; (2) the emotional sensitivities patients and their families might experience-from distress at discussions of disease prognosis, outcomes, and therapies to being inexperienced at public speaking; and (3) the fact that advocacy efforts by patients and family members, which may be encouraged at the national level, may threaten individual professionals providing care to individual patients and may result in risk to patients. In this article, a patient-physician and patient-bioethicist set out the obstacles, including ones that they have encountered in their own advocacy efforts. The aim is to survey the practical and ethical landscape so that solutions to various problems may be identified and solved as we move forward in our efforts to involve patients and their families in research, policy, and quality improvement in critical care medicine.