I used to be among the legal and health care professionals who harped about the importance of having a plan for end-of-life decision making--we call it Advance Care Planning. Then, while updating my 2006 book on advance directives, I thought back on all the people over the past decade who have shared their stories of journeying through the health care system. The common theme as they traveled alongside sick and dying loved ones? "We would have made different decisions if only we'd understood."
A light bulb moment for me. Advance Care Planning is just one piece of the health literacy puzzle. Health literacy is recognizing when, how and where to access, process and understand basic health information and services needed to make informed decisions concerning medical treatment and care. It's not just about end of life--it's about having a system in place to deal with all the medical decision-making demands of preventive, routine, emergency and--yes, of course--end-of-life care.
Stop and think about how you would go about making a decision if you got a critical medical diagnosis, or in an emergency, or at the end of life. Become health literate and be empowered to preserve your rights as a patient.