Forget the paperwork - sit & speak to me face-to-face in my language - Emmi

October 28, 2016 — Blog Post

Forget the paperwork – sit & speak to me face-to-face in my language

I have always been a very “hands on” physician. Not only have I examined patients in my neurology clinic performing neurological examinations and cognitive evaluations for dementia and Alzheimer’s Disease dementia (AD), but I also have been very involved in the “Now What?” of their care interfacing with family members who are often present at these visits. I had to deliver the “Now what?” to thousands of families focusing on:

  • What is the next step?
  • What do we need to do?
  • What educational and social support resources do we need to tap into?

At the core of answering all of these questions, having a plan that will work in the “field” when the patient goes home with family, is essentially health literacy. What do patients and their families really understand about the condition and more important how is that literacy going to impact care and empower them?

Dementia and especially Alzheimer’s Disease Dementia (AD) is a very tough topic to tackle in the office. From a physician perspective, the office visit is too short to really get an accurate history from patient and family, let alone discuss the issue. From a patient and family perspective they don’t where to start in giving a history of the concern or issue.

Actively doing “something to the patient” in the form of blood draws and pictures of the brain (neuroimaging) is therefore, the most common plan of action. Yet, even when this is performed it is stunning for me as a specialist to have patients and their families tell me they are not sure why a test was done, what the result was and what the test means (…. in plain English). It is quite obvious that the information presented at the time of workup is still often very “content” heavy, lots of words in a language that patients and their families don’t understand.

Literacy in general was never formally assessed not just with the patient but more importantly with the family member, before the paperwork was given even though we know that general literacy affects health literacy. In fact, we know literacy in general is the single best predictor of health status, and is a stronger predictor than age, income, race/ ethnicity or employment status.

So what is it like to not understand the written materials presented at the time of the visit?  Let’s do a little exercise that I did after taking a course in health literacy for physicians years ago. Read this out loud and try to do this in under 1 minute.  (Need a hint: the first word is CLEANING)

GNINAELC: Ot erussa hgih ecnamrofrep, yllacidoirep naelc eht epat sdaeh dna natspac revenehw uoy eciton na noitalumucca fo tsud dna nworb-red edixo selcitrap. Esu a nottoc baws denetsiom htiw lyporposi lohocla. Eb erus on lohocla sehcuot eht rebbur strap, sa ti sdnet ot yrd dna yllautneve kcarc eht rebbur. 

This exercise not only reflects what a patient and family member with low/medium literacy may see on a page, but also simulates how much time and brain energy it takes to read this “instruction” let alone understand what it means. So much time is spent on the decoding each word that retention of the message later will surely be lost. In addition, the person who reads this may think that because they read it out loud, sounded out and recognize some words, they don’t have a problem, yet, they don’t understand what was presented in this passage and may have to re read this many times. More than likely the re-read won’t happen.

Taking this exercise one step further, what do you think this means for the provider, health care system or patient as it relates to literacy related to health issues? Well, my review of the studies suggest that other factors – experience with a health system, cultural and language factors, age  and “how the provider” communicates with the patient/ family will also predict the level of one’s  health literacy and if not addressed will lead to the following:

  1. Misunderstanding instructions, prescriptions, appointments
  2. Mistakes in taking the medication properly
  3. Excess hospitalizations due to inability to recognize what the disease of dementia does, and how it interferes with self management of other chronic illnesses the patient may have
  4. Poor health outcomes like elevated blood pressures or blood sugar

Patients don’t need to find a health coach – YOU are the Coach! Just like a coach trains his/her athletes, I really believe that physicians and their staff need to step in as coaches. We should not only talk to our patient different but “coach” the family member about the patient’s health and action plan. Coaching is an active process so here is what I suggest:

Use the teach back method – it works! Ask the patient and family member if you explained it well and to restate it in their own words.

Visually present information to patients – it works!

  • Draw out as much as can or obtain a map. Including a map of where a patient may need to go to get a test done or obtain a service both in the clinic or hospital and/ or the community
  • Show a picture of a medication in color so they know what the medicine looks like and then talk about “why” they are taking it and what condition the medicine is treating. (high blood pressure)

Make your office staff and you a safe shame free environment – it works!

  • Listen first, ask before you advise
  • Give the patient time to respond
  • ASK patient how they want information communicated to them. Hand outs, pictures, pamphlets, videos, I have become a huge fan of YouTube and other videos.

 

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Author
  • Neelum T. Aggarwal, MD

Neelum T. Aggarwal, MD is a cognitive neurologist, clinical trialist and researcher in the field of population health and aging. She is Senior Neurologist for the Rush Alzheimer’s Disease Center Clinical Core in Chicago; Director of Research and founder of the Cardiology Cognitive Clinic at the Rush Heart Center for Women, and an Associate Professor at Rush University Medical Center. She is the co-principal investigator for the PCORI grant: Community Engagement for Early Recognition and Immediate Action in Stroke (CEERIAS) study, which addresses socioeconomic, race/ethnicity and sex and gender disparities in stroke awareness, barriers to health care access, treatments and outcomes in Chicago’s minority communities.

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Author
  • Neelum T. Aggarwal, MD

Neelum T. Aggarwal, MD is a cognitive neurologist, clinical trialist and researcher in the field of population health and aging. She is Senior Neurologist for the Rush Alzheimer’s Disease Center Clinical Core in Chicago; Director of Research and founder of the Cardiology Cognitive Clinic at the Rush Heart Center for Women, and an Associate Professor at Rush University Medical Center. She is the co-principal investigator for the PCORI grant: Community Engagement for Early Recognition and Immediate Action in Stroke (CEERIAS) study, which addresses socioeconomic, race/ethnicity and sex and gender disparities in stroke awareness, barriers to health care access, treatments and outcomes in Chicago’s minority communities.