Start thinking about health literacy in a broader framework

I have a patient who I will call Antonia.

Antonia is in her early 70’s.  She came to the United States from Guatemala many years ago, but never learned to speak much English.  This doesn’t cause her much of a problem; her community is small and tightly-knit, so she doesn’t have much need to speak English in her home or her neighborhood.   And she has a large family—children and grandchildren and great-grandchildren—who live close by.

Antonia is one of my favorite patients.   We communicate in different languages, and taking care of her is a series of endless frustrations.  But I love her contradictions.

She seems so little when she sits in the chair in my exam room, feet up on the bar supporting the chair’s legs, her body folded up around the purse clutched tightly in her lap.  But when she talks, she shines; she is larger than life.  We enjoy ourselves.  I like her, and I like being her doctor.

Here is Antonia’s medication list:

For diabetes:
Metformin 1000 mg: 1 tablet 2 times daily
Glyburide 5 mg: 1 tablet 2 times daily

For pain associated with neuropathy (a complication of her diabetes):
Gabapentin 300 mg: 1 tablet 3 times daily

For high blood pressure:
Hydrochlorothiazide 25 mg: 1 tablet 1 time daily
Benazepril 20 mg: 1 tablet 1 time daily

To protect from heart attacks:
Aspirin 81 mg: 1 tablet 1 time daily

For a recent bout of depression:
Escitalopram 10 mg: 1 tablet 1 time daily

For heartburn:
Omeprazole 20 mg: 1 tablet daily

For osteoporosis:
Os-cal 500mg: 1 tablet 2 times daily

For cough of unclear etiology (maybe asthma?):
Albuterol Inhaler: 2 puffs four times daily as needed for cough

Despite these ten medicines on her official list, Antonia’s blood pressure is often too high when she comes in to see me.   Her blood sugar is way out of control.  And she has had a cough now for many months.  I don’t know why she has a cough, because she has not completed most of the tests I have ordered for her.   All of this troubles me.

Without a doubt Antonia has limited health literacy. As an “expert” in health literacy, I know how to approach Antonia.  So here is what I have done:

1. Recruit her family members to help with her care. Check.  Her granddaughter now accompanies her to most of her appointments and (at least by report) checks in on her grandmother twice a day to make sure that she has taken her medications.   The granddaughter is also my patient, however, so I happen to know that her granddaughter has many of the same challenges as Antonia….

2. Use the “teach back” method. Check, although with only mixed results.  I usually get only smiles and expressions of deep appreciation for my care when I ask her to report back to me the changes I have made in her medication regimens.   When her granddaughter accompanies her, however, I am a little more confident that she understands my instructions—at least for that moment.

3. Use aids to help her with her medicines. Check.  She has a weekly medication box at home, which apparently her granddaughter fills, but they have never been able to bring the box in to show me.

4. Simplify her medication regimen. To some extent, I have done this.  Her blood sugar was repeatedly dropping too low while she was on insulin, so I stopped the insulin completely.  I also stopped her cholesterol medicine and one of her osteoporosis medicines because I decided they were not essential.

But now I am stuck.  I know what I am supposed to do. I am supposed to start peeling off more medicines to find a simple regimen for her (one medicine? two medicines?) that gives her the biggest bang-for-the-buck.  I advise the residents in our clinic this way all the time.  But what does that mean for Antonia?

I can divide Antonia’s medicine into three categories: those that improve her quality of life (like her pain medicine and her depression medicine), those that may make her live longer (like her blood pressure medicines and her aspirin), and those for her diabetes (which at her age treat mostly symptoms associated with too-high blood sugar—urinary incontinence, poor wound healing, and possibly confusion).

So which medicines should I stop?  You be the doctor.  Stop the medicines that make her feel better, or the medicines that make her live longer?

Despite my years of studying health literacy, I don’t know the answer to this. I usually lean toward stopping the medicines that make her live longer, but why does Antonia not deserve the same high-quality care all my other patients get?  Does she not deserve the mortality benefit of the aspirin because she has limited health literacy?  Of course not.

So maybe I should stop the medicines that improve her quality of life instead?  But then why am I her doctor if I am not able to make her more comfortable, to treat the aches and pains that she comes to see me for?

I know the answer, but it is not an easy one.  The answer is neither of these options.

You see, like most patients in my clinic with limited health literacy, Antonia doesn’t only have limited health literacy.  She also probably has some mild dementia;  and some mild depression; and we do not speak the same language (Spanish, of course, but also the language in which she frames her health issues); and she only shows up for about one out of every four appointments I make for her.  And even when she does show up for her appointments, I still only have 20 or 30 minutes to spend with her at best (and that’s if I resolve to skip lunch and make all my other patients wait).  But even then she leaves my exam room, she goes home, and I don’t see her again for weeks or even months.  And it is during those in-between times I need help.

So what is the answer? The answer is that I need solutions to Antonia’s problem that are bigger than me and my response to her limited health literacy.  I need a nurse to go out to her house once a week to fill her medication box and spend the time to communicate with her in a way she understands.  I need someone to call Antonia and her granddaughter the day before every appointment to remind them to come in—and to send a few bus tokens if they have run out of money.  I need nutritious meals delivered warm to her apartment every day.  I need someone to take a walk with her every afternoon because she is afraid of falling if she goes out alone.  I need a mental health counselor to talk to her about her depression.

And yet, in Antonia’s case, I do not have these tools at my disposal.

We have to start thinking about health literacy in a broader framework.  We cannot approach health literacy in isolation, because rarely do we encounter limited health literacy in isolation.  We see limited health literacy in the context of poverty, or dementia, or limited English proficiency, or depression.   So our clinical responses to health literacy must be similarly broad.  I cannot solve Antonia’s problem on my own, plugging away in the exam room with her month after month and year after year.

So Antonia remains on her ten medicines.  I cringe every time I see her medication list and berate myself for being a poor doctor.  But really I have Antonia on these medicines because I think it is good medical care, and, if nothing else, this is what Antonia deserves.

Hilary Seligman is an internal medicine physician who blogs at Engaging The Patient.com.

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