The Health Illiterate Patient Wrongly Judged

  • February 2, 2010
  • by Leigh Fazzina
  • health literacy, illiterate patient,
  • Leave a comment

Today I witnessed a clinician make assumptions about a patient (and wrongly judge the patient) based on the patient’s appearance which consisted of handsome looks, classy clothes, clean grooming, and nice presentation. What the clinician didn’t know is that underneath the nice appearance actually sat a patient who had comprehension problems and communication limitations; a patient who was “health illiterate.” (Yes, for non healthcare folks reading – that is a real term).

The caregiver was made to sit in the waiting room while the patient was taken in to see the clinician for testing. The clinician prevented the caregiver from going with the patient saying that:

  • The caregiver wasn’t permitted
  • There were HIPPA issues (although the patient had given consent in writing that the caregiver was his caregiver)
  • The patient “looks like a man who can do just fine on his own… unless of course he needs an interpreter”

In today’s day and age, families often assign caregivers when a family member is sick. Sometimes there are multiple caregivers. Caregivers help the patient to retain information, help guide the patient in their treatment, and relay info to others. In many cases caregivers are needed due to health literacy problems. I know as I have been a caregiver in the past for these reasons. I am also a caregiver now, and I work in healthcare communications and understand the importance of health literacy and the limitations and potential outcomes that can occur when a patient is health illiterate. Sadly, it looks like those on the front lines of care are forgetting about health literacy in their communications to patients (at least in what I experienced today).

Health literacy remains a very big problem in the United States. Some documented facts:

  • 46 million American adults are functionally illiterate.
  • 40 million Americans read at or below 4th grade reading level.
  • Nearly half of all American adults –90 million people– have difficulty understanding and using health information.
  • The average American comprehends between a 4th – 7th grade level.
  • 26% of Americans can’t understand when their next doc appt is scheduled.
  • 42% of Americans do not comprehend instructions to “take medication on an empty stomach.”
  • 49% of Americans cannot determine if they are eligible for free care by reading hospital financial aid forms.
  • 60% of Americans cannot understand a standard consent form.

Even well educated people with strong reading and writing skills may have trouble comprehending a medical form or doctor’s instructions regarding a drug or procedure. At some point, most individuals will encounter health information they cannot understand. This is why caregivers are so important.

Shame shame on this clinician today! Health literacy can strike even the well groomed. And clinical staff needs to think better than make assumptions. By making assumptions the patient can walk out confused and it can just cause the family a lot stress; making caring for the patient more difficult as one doesn’t know what has been communicated.

As the old saying goes “a book should never be judged by its cover.”  What I witnessed today I never want to witness again.

Are the medical and nursing schools teaching health literacy to students these days? I really hope they would be. Its great the medical societies like AMA, AAFP and ACP take on this role, but where do the medical schools stand with this? Id really like to know.

As a healthcare communicator, I never lose sight of health literacy in my work. Personally, I’m thankful it plays such a big role in my life as I am able to help myself, my family, and my friends muddle through potential challenges it may create.


Susan Giurleo
Leigh, Great post and good points, I am have a PhD in psychology and sometimes I get overwhelmed by the forms I get at my doctor's office. I think communication is the key here. Doctors/clinicians need to treat patients like people. Ask questions, listen for answers, act accordingly. In the medical profession there is too much assumption of who knows what, who knows more and who knows better. I was engaged in the #hcsm (Heatlh care social media) discussion on Twitter the other day and suggested we ask patients what they need in terms of online information and services. Someone actually said to me, "Well, you're a psychologist, so you are supposed to engage in inquiry. Not all doctors know to do that." I think that is a scary insight into the medical profession. Treat people like people, not a diagnosis or a specimen. They will TELL you what they need and want, if they understand. And allow those caregivers to speak to you as well. As our population ages, as more and more people with autism spectrum diagnoses and other cognitive differences are mainstreamed into our world, they will need support to make informed choices. Shame is right. We must focus on our patient's needs,not our own need to be in control.
Excellent points as always, Leigh. From the perspective of a veteran caregiver, I would strongly urge caregivers to not allow themselves to be intimidated into silence/compliance by the provider. If the provider tries to keep you out, insist. Refuse to allow the visit or test to continue - especially given the presence of written consent. If they won't cooperate, find someone else. That provider is jeopardizing the patient's health just as much as if they prescribed incorrect medication. It's unfortunate that some providers place themselves in an adversarial position, but it happens. You have to be strong for the patient.
Hi Leigh, I have to ask what you did aside from witness this. Given your passion for this topic, my assumption would be that you pointed this out to the clinician.
Leigh -- excellent post. You make a comment about literacy being taught at nursing schools. Here at UCLA, communication with patients is a critical component of education. And not just literacy, but cultural competancy as well,. If we want patients to assume more responsibility for their health, then medical professionals who speak the patient's language is critical to their success. And the clinician you mentioned needs a HIPAA refresher course.
Sheba Muturi
Hi Leigh - thank you for this. I agree with Kurt that you must "educate" the said physician about this gross insenstivity - depending on your relationship of course. Do you think you could tactfully send a link to this AMA video: [quality not great but good enough]? I have summarized the great content here: It's unfortunate that although health literacy is recognized as a huge barrier to optimal health care, many physicians just don't seem to get it. Patient communication is becoming a part of medical curricula but changing actual practice remains an on-going challenge ie. awareness doesn't always translate to behavioural change. Our work as health literacy advocates is cut out for us. 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:
Leigh Fazzina
Susan, communication is key. Its key to everything in life. Docs need to treat patients like “people” for sure – and people at the appropriate level. Im sure many do, but in some case perhaps they do not. If I was a practicing physician who really understood health literacy and the challenges it posed, I would make sure I am speaking to my patients at a 4 - 7th grade level. This isn’t to demean anyone, its just to speak at a more simplified level in which the Average American comprehends. 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.
Leigh Fazzina
Laura, I am happy to hear what you all are doing at UCLA. [Applause there. My hands are clapping!]. Great job to UCLA. And clearly, a refresher on HIPPA for some is needed. 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.
Bob Gilbert
Leigh; As you know,I haven't kept up well with things in Philly these last years. Very upset to hear about Bob.Please,if you can,keep me up to date. I always was partial to the three of you. 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.

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