In nursing, we use a special language to share information. We talk about familial predisposition and health literacy . Our understanding goes much deeper than it sounds: the alphabet soup of A1C & CKD.
It’s easy to equate health literacy, the ability to understand and assimilate health information, with literacy, the ability to read & write. I mean, if you can read the newspaper, shouldn’t you be able to read the brochure?
This isn’t always the case. I remember a patient I had many years ago: A brilliant & successful executive who supported herself & her family’s comfortable lifestyle with her understanding & command of the English language.
Like many of our patients, she developed Type 2 Diabetes . She was 40 years old and was started on a low carbohydrate diet and metformin. She met with the dietitian and the diabetes nurse educator, was given brochures to read and a plan of action for physical activity. Sounds good, right?
Janet was highly intelligent and seemed motivated but was unable to follow through with her care plan. She never “got it” and would skip meals then binge. She “only liked carbohydrates” and “never remembered” to take her medication. Using the glucometer was “too stressful” and she didn’t understand the most basic principles, such as the relationship between skeletal muscle and glucose. Over time, medications were added but she never came anywhere near good control. Her best A1C was 8.5. Finally, she was told she would have to go on insulin.
When this option was presented Janet flatly declined. She would not consider it. That she was voiding protein and showing signs of retinopathy seemed to make no impression on her. Over subsequent follow up visits she remained firm. “My answer is ‘no’ I am not doing that.”
I continued to meet with Janet. Surprisingly, she kept her appointments. We would talk sometimes about the world in general and books we were reading . I never ‘beat up on her’ for her ‘bad patient behavior although it was hard not to do so. I followed the protocols of examinations, diagnostics, and referrals. Over time, we developed what I hoped would become the patient-nurse alliance and work on her diabetes.
One day, she told me her grandmother had been a diabetic and took insulin. I didn’t try to use this disclosure as a teaching moment, and just listened to her.
She eventually revealed that her single mother was unable to care for her & her younger sister, so they were raised by their grandmother. This isn’t uncommon but it was obvious the memory was painful, the disclosure a difficult one. Janet went on to describe how one day, when she was 7 years old and her sister 5, their Grammy didn’t feel well and so they “all went to the hospital”.
The emergency room doctor briefly examined Janet’s Grammy and ordered insulin. Regular, short- acting insulin, because he believed high blood sugar was the cause of her symptoms. This was back before we had glucometers or even rapid laboratory testing. A medical student tried to prevent the injection saying that the cause could be low blood sugar. He was forceful and argued but physician of course prevailed and the patient received the shot. Then she died in the emergency room in front of her two little granddaughters.
Anxiety was the reason for Janet’s health illiteracy. She couldn’t even think of what diabetes might mean. She wasn’t “recalcitrant”; she was literally scared to death.
Over time, we talked about how fast technology had grown. The way we lived before there were computers and DVDs , before CT scans or MRIs; before ultrasound or arthroscopic surgery,before glucometers or ultra-long acting insulins.
You must know this story has a good ending or else I probably wouldn’t be telling you about Janet. She struggled,sure , but as she talked about it, her anxiety decreased, and her ability to learn about diabetes increased. Janet went on lantus and was able to work on her diet & be more physically active. She discovered something that she never knew: That physical activity decreased her levels of stress and anxiety and actually made her feel better – even though she didn’t like to sweat. The last time I talked with her her A1C was 7.0. Not perfect, but getting there.