Chapter 5: Does My Patient Have Low Health Literacy? (Hint: You Can’t Tell by Looking!)
Many low-literate patients are surprisingly smart and have figured out ways to hide their limited literacy skills from others by memorising things they have read before or making intelligent guesses that camouflage their lack of understanding. Patients often wish to be amiable and a smile and a nod should not be mistaken for agreement or comprehension. Ironically, they may also not know enough English to tell you that they dont understand what you are saying.
While its easy to diagnose jaundice simply by examining a patient, there are no visual signs to tell doctors who is health literate and who is not. There are many prevailing myths about people with limited literacy skills, such as:
- They have low IQ and are slow learners
- Years of schooling correlates with high literacy skills
- They usually hail from ethnic minority groups
- When confronted, they will admit they have limited literacy skills
Doctors often make wrong assumptions about their patients health literacy. They may for instance assume that poor patients who have difficulty comprehending medical jargon are stupid, or that rich patients understand everything. Both these stereotypes are incorrect. However, there could be clues that help you know if your patient needs extra help, if you pay sufficient attention. For instance, if your patients complete their forms incorrectly, or have left many blanks, it may be due to limited literacy skills. Taking medications incorrectly can also be a clue to their lack of understanding of the doctors instructions. In case of low-literate patients, poor communication can also result in:
- Frequently missed appointments
- Inability to clearly explain their symptoms to the doctor
- Difficulty in complying with the treatment instructions
- Not following through with tests or referrals to other providers
- Inability to read patient educational material that you provide
- Inability to understand what a medication is really meant for
Often, despite these clues, health literacy is a hidden problem. Most people with low literacy skills go undetected by their doctors, simply because they go to great lengths to hide their literacy problems. They are ashamed of it and carry a lot of emotional baggage from the past and from many years of feeling stupid when they have to acknowledge their limited literacy to medical practitioners. This is often a sensitive issue for them, prompting them to clam up because of humiliation and frustration.
Many low-literate patients are surprisingly smart and have figured out ways to hide their limited literacy skills from others by memorising things they have read before or making intelligent guesses that camouflage their lack of understanding. Patients often wish to be amiable and a smile and a nod should not be mistaken for agreement or comprehension. Ironically, they may also not know enough English to tell you that they dont understand what you are saying. Remember that even people with proficient literacy skills can fail to comprehend complex instructions and health information when they are ill; and many patients are reluctant to ask questions so as not to appear stupid, or because they do not want to annoy a busy physician.
One simple way to assess whether patients have adequate health literacy skills is to conduct a "brown bag medication review". Ask patients to bring in all the medications they take (both prescription and non-prescription) to their next appointment and to name each of them one by one; explain what each is for; and how often they take them. You may suspect low literacy skills if the patient struggles to read the label on the bottle or if they pour out the pills in their hand to look at them in order to identify them.
There are several formal assessment tools available for use in the clinic, such as:
Newest Vital Sign (@https://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf)
Rapid assessment of health literacy in medicine (@ https://www.rcmar.ucla.edu/rcmar_wiki/Literacy_REALM.html)
Short assessment of health literacy for Spanish speaking adults (@ https://www.ncbi.nlm.nih.gov/pubmed/16899014)
While these resources can help you assess your patients level of health literacy scientifically, their major limitation is that they only give an approximation of reading skills and are incapable of assessing other important aspects of health literacy, such as comprehension; motivation; and their ability to access or use information on health and healthcare.
Its safest to assume that everyone can have difficulty understanding health information. Universal Precautions are a method of minimising risk for ALL patients, because you do not know which patients will have trouble understanding. The idea is similar to taking Universal Precautions against the transmission of blood-borne infectious diseases, because you do not know which patients are HIV or hepatitis positive.
Many healthcare professionals find it challenging to practice Universal Precautions, because they have to change the way they think and talk to their patients. They also may fear they are "dumbing down" information, or that patients will feel insulted by their use of "simple language". However, patient surveys have shown this to be untrue. All patients prefer simple and clear communication and plain language resources if it helps them move up the learning curve. In brief, Universal Precautions include four main areas:
- Improving spoken communication
- Improving written communication
- Improving self-management and empowerment
- Improving support systems
Improving spoken communication includes using "plain language" and "teach-back" technique for clear verbal communication. Improving written communication involves selecting and creating written materials that patients can understand and make use of, easily and efficiently. Improving self-management and empowerment means increasing self-efficacy and self-care, thus improving adherence to recommended treatment. Improving support systems involves collaborating with professionals and organisations inside and outside the healthcare system to help patients carry out the advice of healthcare professionals. We will address each of these issues individually in this book.
To help healthcare practices implement health literacy Universal Precautions, The Agency for Healthcare Research and Quality has created a Health Literacy Universal Precautions Toolkit (@https://www.nchealthliteracy.org/toolkit/). This provides step-by-step instructions and offers a systematic approach to simplifying edical care and helping patients receive the right medical care.
Finally, for there to be a solution, the problem must first be identified. This is not an easy task, simply because low-literate patients are masters at hiding their inability to read - after all, this isnt something they want to advertise. With all of our progress and technology, people are still slipping through the school system without being able to read. The educational system has failed them; does the health care system have to fail them as well?