October 14, 2015 — Blog Post
The Moment I Realized the Impact of Illness on Health Literacy
I’m sitting in my father’s room waiting for him to be discharged from a major academic medical center.
He was hospitalized from complications related to chemotherapy and radiation therapy for laryngeal cancer. Even though I am on faculty at this institution, I am not wearing my white coat and stethoscope and am dressed casually. No one recognizes me.
As I greet him, he mentions how he can’t wait to get home. After a few minutes, a student nurse comes in and gives him these discharge instructions:
When he was asked if he had any questions, he simply said, “No.”
There are so many errors in this discharge summary that it begs belief on how this can be given to a patient:
- There are two different doses for a powerful narcotic.
- There are three line entries for an antibiotic with two different modes of delivery.
- There are duplicate orders for oral, liquid pain relief.
- There are three anti-nausea line entries for two different drugs, some with medical jargon like “PO.”
When he’s well, my father doesn’t have impaired health literacy. But he remembers precious little from this time. He was feverish, poorly nourished, and his executive function was impaired due to the narcotics he was taking for the profound mucositis (sores in the mucous membranes, like in his mouth) from cancer treatment. Health literacy is not a constant state; illness, pain, medications, and other factors all affect our ability to understand and act on information.
It wasn’t until this experience in 2009 that I finally became a better doctor.
What do I mean by “better doctor?” I started using “teach back” to ensure my patients could repeat my instructions in their own words or demonstrate how to draw up and inject insulin or appropriately use an inhaler.
Besides conducting research on patients with low literacy, I also am on faculty for an organization that teaches communication skills for physicians. I can whole-heartedly endorse data that suggests that 50 percent of what is immediately communicated is forgotten and, even if recalled, is remembered inaccurately, especially since over one-half of hospitalized patients with chronic diseases like chronic obstructive pulmonary disease and congestive heart failure have been shown to have cognitive impairment.
How can we reduce hospital readmissions and improve the quality of medical care if we just hand people a discharge summary and ask them if they have any questions? How can we be so naive as to think that without the participation and understanding of our patients, an occasional office visit or a hospital stay will holistically achieve optimal health? And imagine my dad didn’t have the resource of his physician son and instead was an impoverished single mother with a sick child at home, unreliable child care, struggling to pay overdue bills with food insecurity and unreliable transportation.
Whose demands come first?
Is it the expectations of the health care team to fill prescriptions, take them as prescribed, self-monitor for any worsening health conditions, call the office for an appointment, arrange transportation, etc.? Or is it the employer where the single mother tries to earn while living while balancing these herculean demands? Or is it the sick child who depends on her mother to care for her as there is no other reliable caregiver? Or is it the bill collectors who threaten action if they are not paid?
I don’t have all the answers for the social determinants of health. But I can do some things.
- I can write in way that makes understanding easier.
- I can have a conversation that probes for understanding.
- I can ask if the cost of the medicine is a problem and look for less expensive generic instead.
- I can see if other forms of assistance are available.
- And I can ask if I can schedule an appointment that doesn’t conflict with work or school.
Most of all, I finally understand what it means to be in a “helping profession” rather than just a profession that diagnoses and treats patients. My dad’s experience helped me understand the difference.