The words Health Literacy sounds so fancy and academic. I have been married to a nurse practitioner for over 36 years and along the way I have picked up a few medical terms…but I will be the first to tell you that I am somewhat illiterate when I speak to a doctor or some other medical/ nursing home professionals. But I am not afraid to ask questions. My wife and daughter (who is also a nurse practitioner) are very patient when I ask them the same questions over and over again. It simply should not be this hard to provide care for a loved one, but it is and it is a very frustrating experience.
While you are grieving and trying to provide the best care possible for your loved one, my experience is that if you ask five medical or nursing home professional about any situation, you will likely get several different responses. Yes, the practice of medicine is both an art and a science but as a society we have to make it easier for lay people to make good decisions based upon data and best practice. Also, lay people need to be made aware of the choices they have when it comes to insurance coverage and Medicaid/Medicare deadlines as far in advance as possible.
Lately I have been in hospitals and nursing homes on a regular basis and I wonder how some folks who seemingly have no one advocating for them determine what is in their best interest. I am sure they simply rely on what doctors tell them to do and move from facility to facility when doctors or insurance companies tell them they must move.
Maybe every hospital/ nursing home needs a person who works with families and interprets what medical professional are telling families or act as an advocate for the family. Better health literacy and medical case management is not a luxury—it is a necessity.