Confessions of a Health Literacy Expert

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.

About Dr. Seligman

Hilary Seligman, MD MAS is an Assistant professor of medicine University of California San Francisco. In addition to matters of health literacy, Hilary studies the role of food insecurity, or access to enough food for an active, healthy life, in the development and management of obesity and chronic disease.

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14 replies »

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  2. People will still work to improve their lot in life and collectivly that work will lead to economic growth.The individual ads on algebra II and foreign language are a bit more humorous, and makes an attempt to present the subjects as more approachable.

  3. Since you asked on how to reduce her medications
    1. Stop the aspirin. There is no evidence it prevent cardiac events in women of this age, and the NNT to prevent ischaemic cerebral events is close to 555. And you’re exposing her to the risk of a GI bleed.
    2. If you stop the aspirin, she might not need the Omeprazole.
    3. Stop the Calcium unless a dietary assessment has shown an intake below the RDA. There’s no good evidence it does anything for osteoporosis as a single agent. And there’s emerging evidence that it has a cardiovascular signal. If she has osteoporosis, then she should be on vitamin D and a bisphosphonate. Or, compliance might be more easily achieved with a yearly infusion with Aclasta.
    4. Stop the thiazide and the ACEI and the Albuterol. Switch her to an ARB instead. See
    You’ve now halved her medications. And if she doesn’t know how to take them, get the chemist to provide a weekly blister pack labelled with day and time.

  4. Thanks for caring so much for Antonia your post is a great expression of humility and courage! You are raising awareness of several issues that need attention.
    That list of drugs is impressive! When using a drug interaction tool (clinical or consumer) do you take the time to aggregate the interactions of multiple drugs? How well are you able to track the side effects of the patient’s drug regimes and how often is addition of additional drugs just a method for managing the side effects of other drugs? I guess I am asking how did you get to where you are at today and did you use any diagnostics tools to support your decision-making?
    Antonia’s Drug Interactions:
    Wishing you the Best!

  5. Dr. Seligman’s wonderful post lays bare the systemic flaws in our health care “system,”and hints at some bandaid solutions (home nurse visits? Could work, but does the San Fran area have promotoras?). I’m not a physician so I can’t weigh in on the medication management tradeoffs, other than to echo the previous comment that the choices should be congruent with Antonia’s values (does she chiefly seek pain control, ability to perform ADLs, wanting to live a long life for her family, or does she want a minimal # of meds to keep straight).
    The medical home model points to a way forward, insofar as it enables all staff to work to the far edges of their scope of practice and creates opportunities for longer visits, phone follow-up, and patient-centeredness. Can a pharmacist or nurse (especially one fluent in Spanish) be engaged as a co-care provider?
    Still, by picking this case apart, we stray from the larger point this article is making–health literacy is as big a problem as any other we face in medical care, since it permeates every other aspect of the encounter and doesn’t go away once the doctor and patient part company. This is endemic, and the solution does not lie with the provider, nor with the rich and growing community of health literacy researchers. Empowerment and activation–even teaching people “how” to be a patient…it’s one thing that virtually no one is trained or prepared to do–is a necessity. Health education programs in schools are a place to begin this journey but again, only part of a solution. I worry that it’s too late to help Antonia feel empowered, but I’m grateful that there are providers like Dr. Seligman out there who are least trying, and ensuring that she feels cared for.
    Please don’t berate yourself, Dr. Seligman–your humility and self-examination in the face of this singular, but hardly unique situation–deserves our gratitude.
    And as a P.S. to the person who said “we deserve” that Antonia learn English after she’s been in this country for many years? You may feel you deserve as much, but please don’t speak for everyone on that one.

  6. A couple of visits by a home-care nurse would probably do more for this patient than anything. The most competent and caring of physicians will never develop the context needed in her office. You are doing a great job within the very limited scope that our office-based medical culture allows–but until physicians have other avenues available to them, they will continue to spin their wheels with patients like this. What’s the point of repeating this ineffective drama over and over? We spend so much money but are hamstrung by the payment system from providing the kind of care that can make the most difference in many cases.

  7. ” I don’t know why she has a cough, because she has not completed most of the tests I have ordered for her. ‘
    How many thousands of dollars of tests did you order?
    The ace inhibitor is causing the cough. Stop the ACE inhibitor, and then you can stop the albuterol.
    You being a professor at UCSF, I would think that you would know to give the patient and ACE holiday. What did your computers tell you to do?
    Is this case a joke? Now I know how nuch EMRs are screwing up me3dical care.

  8. It is great to know that there are still Doctors like you that care enough about there patients and take the time to actually research and ask online. I think you must be a great doctor. Best Wishes!

  9. MD as Hell was the only one to mention cost issues. Is she missing meds because the copays for 10 drugs adds up to a substantial sum out-of-pocket every month, especially if they are brand names?
    At 70, she is on Medicare, and presumably has a Part D plan.
    Since they outlawed CFC albuterol, you can only get it in non-CFC (HFA) delivery form, and it’s a Tier 2 drug nowadays, not a Tier 1 generic anymore. Os-Cal is a brand, too, and probably on Tier 2. How many other of these drugs are on Tier 2 or Tier 3 or Tier 4 for her insurer — if she even has a Part D plan?
    Part D plans are required to offer patients medication therapy management (MTM) to patients with multiple diagnoses and multiple prescriptions. Antonia is clearly qualified, which means she gets a free consult with a clinical pharmacist who can advise her on how to properly take her meds, and consult with her doc (which is you) on how best to adjust dosages, and which meds can safely be dropped, or which scripts can safely be changed to a generic in the same therapeutic class.
    Next time she’s in, find out which Part D plan she has, and advise that she call them and ask to be signed up for a Medication Therapy Management program (and ask for an interpreter). Maybe have the family help her with it. You’ll know she did it when the clinical pharmacist calls you.
    This will take some of the burden off you, and give you another knowledgeable source to consult with. The insurer will likely also do some outreach/reminder calls with her.

  10. Commentators who are offering their own medical tips for managing Antonia are clearly missing the point. Juggling medicines on the margins isn’t the real answer to Antonia’s care, but it is the thing we physicians can do. A reminder, again, that the context of a person’s life is so much more dominant than our learned interventions.

  11. For unexplained cough, stop her Benzapril. See if she is in CHF and have pulmonary function studies done so you know what you are doing. Might save her from albuterol
    For quality of life or length of life, ask her what she values.
    What is her family history? You cannot change her genes. If her family lives long,, don’t worry so much about lengthening her life. If they don’ have a long life span, there is precious little you can do to thwart that.
    For “heartburn” in her early 70’s, she needs a Cardiolyte stress test.
    Her diabetic control would be better illustrated by a Hemoglobin A1C.
    Aspirin is dirt cheap.
    Generic metformin is cheap.
    HCTZ is cheap.
    Why did she start seeing you in the first place? Was it for you to become her nanny? You are in the advice and access business. Are you so sure of your regimen you would invade her home to enforce it? Is she seeing more than one doctor? Are you sure?
    If she has been here “many years” we deserve that she learn English.
    She needs to warm her meals. Her friends and family need to fill her med box. Maybe she doesn’t want to talk to anyond about her depression. You have said you need all these things. Does she need them or want them? If so, she need to move into assisted living.
    Have you discussed advanced directives? Does she have a living will or a healthcare power of attorney or a durable power of attorney?
    You have presumed she has no resources. Are you sure? People brave enough to immigrate are usually survivors, usually not helpless.

  12. Wonderful post, and can speak to a host of issues.
    Translate this to care transitions and unneccesary readmissions for one.
    If Antonia winds up in the ED, where is the root cause, how good or large of a safety net can we provide?
    That is not to say we cant do much better as a system, but an excellent illustrative example of how difficult it will be make lighting in a bottle happen.
    Well done, and it sounds like you are a very caring doc.
    Brad F

  13. And of course, by pay for performance standards, this makes you a very bad doctor and you should be punished financially.
    But, then, Antonia’s not an e-patient, so who cares?

  14. I saw lots of discussion of high sugar levels and medications, but I saw no mention at all of her diet.
    Does this lady eat properly?

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