Most of us enter the world of hospital-based advocacy as a "beginner." We lack either:
the technical knowledge because we are not trained in medicine; or
the personal knowledge because we have never been an advocate and/or patient before.
For hospital personnel, we may be operating on the "other side" for the first time in our lives and lack the authority and perhaps the detachment to effectively "make medical things happen." There are many books authored by doctors describing this very challenge when they found themselves horizontal and dressed in the lovely backside revealing hospital gown...
Because we rarely have the time to prepare ourselves, we need to designate a shelf/section or add to our home reference library materials. Among many good books I have collected over the years, I recommend that a good home-based medical reference library minimally include:
While some of these books may not have a long lifespan due to the continuous nature of change and advancement in medicine (for example, The Pill Book is republished annually), they are a good place to start.
- a medical dictionary (containing terms and their definitions);
- The Pill Book (a home/lay person version of the Physician's Desk Reference);
- The Merck Manual of Medical Information (information on medical conditions);
- basic and advanced first aid manuals;
- Alternative Medicine: The Definitive Guide (information on treatments that are not considered "conventional" and typically are not reimbursed by insurance companies without LOTS of agonizing effort!); and, of course,
- Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your Loved Ones.
If you do not have time to read all these materials cover to cover, at least scan the table of contents so you are familiar with what is contained in each.
The Internet is much easier to keep current and on it resides cutting-edge information. The caveat here, however, is caution. I am not a medical expert and would certainly not be comfortable endorsing any medically based sites. However, I have discovered sites that can provide excellent resource material for anyone stepping into the role of advocate. With acknowledgement that some of the following material is copied directly from each site, here are resources I have used and found extremely helpful. Many are critical to the research you will conduct online. When available, both phone and Internet access information are provided.
Be advised, all links functioned at the time article was written. The underlined sections represent my commentary. Apologies to all the worthy organizations not cited below...
Aging With Dignity
The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other Living Will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician.
Five Wishes lets your family and doctors know -
which person you want to make health care decisions for you when you can't make them
the kind of medical treatment you want or don't want
how comfortable you want to be
how you want people to treat you
what you want your loved ones to know