I have been the caregiver and almost everything else to Carol these last four/five years.It’ scary what a 65 year old can’t relate to her doctors.If I wasn’t always there,many things would never be mentioned properly,much less treated so.
I thank the world for those like you,who contribute so much.

Sheba, thank you for your information. Oh, I’d love to send that information… and do a lot more.
Correct – awareness doesn’t always correct behavioral change. But we who believe it is an essential element in making medicine and the healthcare treatment patients receive successful, need to keep it on the radar and make it a high priority in all of the the programs we develop.

During my career I’ve work with two top nationally ranked surgeons in pulmonology and orthopedic oncology. Both would give analogies to their patients in ways the patient could understand. The one doc had a patient who was a farmer, so the analogy he provided about getting the cancer out of his bones was similar to something the farmer had to do in his line of work in his field on his farm. And voila – the patient understood!

I think asking patients what they need is good, but the bottom line is some patients don’t know what they need because they don’t know what exists. [the good ole Catch 22!]. Many will never speak up and tell you what they don’t know either as they are afraid to admit if the intelligence is missing. Yes, they will tell you what they need and want if only they understand.

Caregivers cannot be intimated at all. Caregivers need to be strong and those with the best health literacy skills should be the ones in the caregiving role.

Not only can Health Literacy lead to stress for caregivers and families, it can lead to major patient safety errors which could (on the extreme side), result in death. Extreme. But very possible.

Kurt, I am happy to answer your question but now you know more of my personal story. When the patient proceeded through the doors without the caregiver, I tried to walk through the doors with the patient. You see, I was/am the caregiver. The patient here was/is my father. At this point I was stopped (physically stopped by the clinician) and told I could not go any further. I made a snide remark looking the clinician straight in the eyes and said “There are communication problems HERE which clearly YOU don’t know about.”). I didn’t want to cause uncomfortable confrontation in front of my father (he was just diagnosed with lung cancer and 7 days away from major surgery with a 2 month healing time) so I let it go and let my father proceed to the testing without me. When the doors closed however, I demanded to speak with the management staff and then proceeded to have a little meeting with these people while my dad was getting some tests done. I was upset and rather livid needless to say. I must say, I was dressed in my ski jacket, casual street clothes, had my hair in a pony tail… I looked like I came from the gym (not from the office or in “business” attire). I was dressed quite opposite of my father. And I was definitely sized up by this staff based on my appearance. The staff definitely treated me as though I was not an educated consumer or caregiver. Assumptions were made about me…. It was not until I opened my lips and began to speak and communicate did anyone know how seriously to take me. I voiced my opinion, communicated and shared some rather intelligent thoughts on health literacy, care giving, why I was my father’s caregiver and how they should never make “assumptions” about patients. [it was funny to watch them back down as I spoke]. They asked if I was a physician to which I replied “no, I’m an informed consumer, patient and caregiver.” [this happens to me often as the "educated" caregiver]. Essentially, my father (the patient) was judged, and I (as the caregiver) was judged. And they judged us both wrong. In the end they felt stupid and they started making additional excuses why I couldn’t go back into the testing such as 1) the room was too small, 2) and HIPPA again.

They heck with HIPPA by the way. I am tired of hearing this! My father and I wrote a letter naming me as his primary caregiver and #1 communicator for our family. So all privacy concerns do not apply to he and I when it comes to his care. I am to have access to all of it. These folks need to stop using and blaming HIPPA from allowing people to care-give but I guess that is an entirely different blog post for another day maybe.

What they did was look at us both and make assumptions on our looks, and boy did they get it really wrong. So again, shame shame on them.

I am pleased to say that physicians in BC, Canada participating in a health literacy improvement project recognized the role of patients’ family members and care providers in optimizing health care communication. To address the reality of overworked health care professionals, they have suggested the involvement of physician “extenders” in the form of medical office assistants, volunteer coaches, literacy coordinators… to help patients participate as partners in their care. For more on this innovative project, see: http://www.impactbc.ca/PatientsasPartners/resourcesforregionalteams