A guest column by the American College of Physicians, exclusive to KevinMD.com.
Those of us who provide clinical care inevitably have patients who simply don’t do what we tell them. And this isn’t limited to only primary care but is encountered in all specialties and by subspecialists and consultants alike.
Not only can this be frustrating and annoying but at times may lead us to become frankly angry at our patients, not to mention leaving us with the feeling that we’ve failed in our mission of trying to help them do what is best for their health.
The reasons for patients not doing what we advise are certainly multiple, complex, and interrelated. For example, many of us have a subset of patients who fully understand their underlying medical issues and our recommendations but choose to disregard our advice for reasons such as having read articles in the non-medical literature, making their own interpretation of medical research, or basing their decisions on what they’ve seen on television or heard from friends. I think these are by far the most frustrating situations because their choice of how to manage their medical care is antithetical to the way we’ve been trained to think and simply doesn’t make sense to us.
Yet, there is a much larger group of people we care for who, despite being seemingly willing to follow our recommendations, either just don’t or can’t for reasons that may not be clear to us. There is a good chance they may have issues with health literacy, as defined by the National Academy of Medicine as the “ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.”
We know that health literacy is a significantly underrecognized but major issue affecting the care of our patients. It’s estimated that up to half of adults in the U.S. — 90 million people — have difficulty understanding what their doctor tells them about why they are sick and how to take the medications they are given. This results in 20% to 30% of prescriptions for chronic medical conditions never being filled, and at least half of these medications not being taken as prescribed. Plus, estimates are that nonadherence leads to up to 10% of hospitalizations and an estimated 125,000 deaths annually. This doesn’t even begin to describe the economic costs associated with limited health literacy.
But what role do we doctors play in health literacy? In my experience, a huge and central one. Although most of us honestly believe we interact effectively with our patients and are therefore not a significant part of the problem, I’m convinced that in many cases patients don’t follow our advice simply because we fail to adequately relate to them as physicians. And the existing data supports this.
It’s been shown that we often profoundly overestimate what patients are truly able to comprehend, including many common terms we use to describe medical conditions, tests, or procedures, even if we think they are straightforward and obvious. This is why, as a medical educator, I’ve always been frustrated by the paradox that we spend at least seven years teaching students and residents to think and speak “medicalese,” then have them struggle for the rest of their careers attempting to translate this language back to patients in a meaningful way.
Another aspect of the problem is that it is difficult to actually know what individual patients understand. We all have patients with limited education, language skills, or cultural differences that make us aware of possible difficulties in comprehending things medical. However, studies also show that even educated and articulate professionals may have difficulty understanding common medical terms, concepts, and instructions we give. The fact that many of my physician colleagues have trouble making sense of what their own doctors say to them is quite revealing. And we know that simply asking patients if they understand what we have told them will often be met with an affirmative response as most are too embarrassed or hesitant to acknowledge that they don’t.
How do we contribute to the problem? I think we frequently become so focused on our specific area of expertise and the process of addressing each problem a patient has that we forget how hard it is to actually be a patient. To have a disease (or more typically, diseases) that you may not fully understand, receive instructions from multiple physicians, and be told that you need to (sometimes drastically) change the way you live can be daunting for even the most educated and sophisticated person, not to mention someone with limited health literacy for whom this may be overwhelming. This is why I ask trainees to imagine how they would feel if they were told to comply with a 2-gram daily sodium restriction, or take pills reliably on a daily, twice daily, three times daily, and four times daily schedule all at the same time. It’s no wonder that for patients with multiple medical issues and limited health literacy, it seems virtually impossible for them to do all that their caregivers tell them to.
And it is important to remember that as the healthcare system evolves from a more paternalistic, physician-focused model to one that seeks more involvement of patients in medical decision making, we are actually increasing the demands for health literacy which patient may further struggle with.
So what can we do? Perhaps it is the mindset of “telling” patients what they should do that is a part of the problem. I believe the answer is for us to move away from the approach of being the expert charged with instructing patients what to do, and begin acting more as partners with and advocates for them in the healthcare enterprise. This means attempting to understand the difficulties that their illnesses and conditions impose on them, and helping them truly understand, and buy into, those things that are important for their well-being.
This requires that we re-examine the way we communicate with patients and seek ways to help engage, motivate, and most importantly empower them in their own care to the best of their abilities. The ACP is trying to help with both through its Center for Patient Partnership in Healthcare that develops educational materials for patients and seeks to create patient-centered care delivery resources. It also requires working with patients to establish reasonable and practical health goals that are realistic and minimally disruptive to their lives.
This is not easy for many of us to do, and takes a bit more time than business as usual. However, we know that effective physician-patient communication both increases rates of medical adherence and has well-documented benefits on medical outcomes.
Instead of simply telling our patients what to do, perhaps seeking to know what they can and want to do is probably the best thing we can do for them.
Philip A. Masters is vice-president, Membership and International Programs, American College of Physicians. His statements do not necessarily reflect official policies of ACP.
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