Post written by Kathy Kastner
I couldn’t believe my ears when Dr Diane Meier said:
Health Literacy is not a patient problem: it’s a health care professional’s problem.
I could barely tweet this radical idea, riveted as I was to the Institute of Medicine’s webcast, Health Literacy and Palliative Care. I could have kissed Dr Meier, Director, Center to Advance Palliative Care right there on the computer screen. In the words of the Beatles, these were words I longed to hear.
From all I’ve heard and read, Health Literacy is always and forever about patients’ ability, or in-. Being as I’m one of those very patients – nay, persons – who is not a healthcare professional, this is a huge shift! It almost sounds like heresy: making health care providers accountable for patients’ Health Literacy issues. I rolled this concept around in my brain, not quite believing that someone dared to say this – and not just any ‘someone’ but a respected healthcare professional. Giving example after example, Dr Meier asked the rhetorical question:
“Who has the literacy problem?”
- Using ‘teach-back’ it took three tries to ensure I felt the patient understood properly.
- An elderly man was taking a dangerous amount of Tylenol 5mg. He was still in such major pain that his wife called 911 and he goes to ER in an ambulance. He’s then labeled as ER abuser.
- Functional status (how well are we doing our daily lives), Dementia, caregiver exhaustion aren’t reported as risk factors.
- Patients have everything they need to know about their goals and values - they don’t know or understand our terms.
About the definition of Health Literacy
The Centers for Disease Control and Prevention defines health literacy as "the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services to make appropriate health decisions”
Beth Pulsifer-Anders tweeted: Even the definition of health literacy wasn’t in Plain Language. Unclear on the concept.
Speaker after speaker weighed and found wanting the health-care-professional part of the balance:
- We need to learn to talk to people in ways they understand. It’s the doctors/nurses job – or we shouldn’t get paid.
- Build a better Carpenter, not a better hammer offered Rev Richard Freeman Sr.
- Clinicians need to know what procedures you want but patients don’t understand lingo.
And how’s about this gem
- “I don’t know how to tell you this, so I’m sending you to someone who can.”
While healthcare professionals are doing what they do, we patients – being patients – are not at our best.
Palliative Care Physicians recognize that being unwell renders us emotionally fraught and even less able to learn.
Dr Anne Kinderman tweeted:
When medical conditions worsen, you can’t process information.
Dr Robert Arnold sent this tweet:
We make decisions based on emotions. Physicians aren’t trained to help people do that.
‘Understanding’ is a complicated process: language should make it easier
Another of the exalted in my mission to make things understood is Dr. Christina Zarcadoolas, whose Health Literacy Lab has a series of videos, called Definitions Acting Badly using Monty Python’s Silly Walks to illustrate laughable attempts at explaining health issues.
I had the pleasure of meeting Dr. Z whilst at the hotel hosting Institute of Healthcare Advancement conference. Also at the hotel was a Papillion convention.
To illustrate how we adults learn and understand - whether about health or anything else - Dr. Z explained the role of context and incremental learning, using her own experience in an elevator ride from 24th floor. Overhearing a conversation about fluffy ears being assessed, along with general charm and smarts, she pieced together what the Papillion Conventions was all about. Papillion is French for Butterfly, and a Papillion is a charming dog with butterfly-like ears.
Another truism from the conference, that applies beyond healthcare:
“Never make assumptions about what people want to know.”