The patient perspective: considering shades of gray in medication adherence

Not so long ago, a middle-aged patient came to my office for a checkup. He cheerfully admitted that he hadn’t been paying attention to his diabetes for the last few years. He’d stopped taking his medicine, stopped seeing his doctors, stopped thinking about the disease altogether. When I checked his blood sugar in the office, it wasn’t just a little elevated — it was four times the normal level…

It’s not surprising that doctors and patients have contrasting agendas. We come to illness from entirely different perspectives and backgrounds. Moreover, the angles of our respective lenses are mismatched.

For my patient, his wide-angle lens took in the whole of his life, of which diabetes was one small part. For me, in the 20 minutes allotted, my lens was narrowly focused on the disease that posed the gravest and most immediate risk to his health.

The challenge that lay ahead of us was to help each other adjust the angles of our respective lenses so that our visions could come into common focus. Otherwise, we’d slip into futile haranguing.

-Danielle Ofri, MD

Reading this in a New York Times blog post, “Doctor Priorities vs. Patient Priorities,” I was reminded of my ponderings on patient-physician dynamics and medication adherence in my Reed senior thesis. Good adherence refers to taking the correct number and type of doses with few or no missed doses, while poor adherence implies taking the incorrect dosage and/or missing many doses.1 Poor adherence has been described as rooted in patient lack of knowledge, health beliefs, and/or rational choice,1 along with in patient lifestyles such as substance and alcohol abuse.2 Economic concerns, such as ability to regularly pay for prescriptions, could of course also impact adherence. It is easy to view adherence in black and white terms – listen to doctors orders and take prescriptions as prescribed, or wrongly ignore the Rx script and suffer the health consequences. This is not to say I am against adherence – it is incredibly important both at individual and societal levels. Individually, not taking medications properly (or at all) can result in negative health consequences. Societally, not taking medications properly contributes to such problems as drug resistance development and increased health care costs. Still, it seems that adherence is enmeshed in the perspective of a hierarchical physician-patient relationship, with patients expected to follow doctors’ orders unquestioningly.

According to anthropologist Arthur Kleinman and psychiatrist Wayne Katon,doctor-patient relationships across varying cultures are rooted in an authoritarian power structure in which patients are accorded less power than practitioners. In line with a hierarchical relationship, compliance used to be the term for what is now called adherence – compliance is still sometimes used.Governmental laws and professional clinical care settings legitimate the hierarchical relationship, but in some countries, power has been shifting more toward patients. The status of the physician may be said to be decreasing in “the West”, as professionalism becomes suspect, health practitioner critiques grow in volume, individual rights grow in importance, and dissatisfaction with health care increases.3,4 These complaints may be tied to structural shifts, such as increasing legal-medical suits making doctors more concerned about patient dissatisfaction.3

Whether a stricter physician-patient power dynamic weighted in favor of the physician actually results in greater adherence, I cannot say. Still, as patient empowerment grows, there is increased opportunity for dialogue. Patients, if given the room, can explain why they do not take certain medications as prescribed. From there, physicians can either serve as educators to ameliorate any misunderstandings, resulting in higher adherence, or physicians can work with patients to come up with alternative care plans that do not involve patients taking the medication as originally prescribed (or perhaps at all). Would this necessarily result in the best health outcomes? Perhaps not. However, using the wider angle lens of a patient’s perspective, the health results balanced against other life considerations may be the best possible for the individual patient. In essence, this model would involve prioritizing the subjective best over the objective good in health care.

Technology offers one way toward facilitating these discussions. One such avenue may be via patient access to electronic medical records, such as through OpenNotes – a research project I get to work on at the University of Washington. In the frequently short time frame of a medical consultation, doctors may not have the time to educate patients and explain things thoroughly. Through having access to electronic medical records, patients may have the opportunity to review (a) exact medication prescription directions (if misunderstanding directions was the root of a patient’s poor adherence) and (b) the doctor’s reasoning behind prescribing medication – symptom/condition leading to prescription (if questioning the need for the prescription was the cause of poor adherence). Supplemental or alternative technologies could enable addressing another cause of poor adherence – patients choosing to not take a medication as prescribed because of how it impacts their lives. If patients had a place to record their feedback on doctor’s orders (or electronic notes) more frequently than at office visits which are sometimes so far apart, say in a feedback column/link on electronic medical records or a phone application, more room would perhaps be negotiated for dialogue about reasoning behind poor adherence and ways to best improve patient health. This could also, perhaps, help maintain some continuity of care, as patients see various doctors over time.

I can imagine the frustration of a physician when faced with a patient who seems to not care about his or her health, who would feel better if only he or she would take the medication prescribed. However, a patient is more than a collection of bodily functions and symptoms – a patient is a person whose wellbeing is determined by many life factors beyond health and whose medical choices are shaped by more than the stark balance of physical symptoms and treatments.

1 Crane, Johanna, San Francisco Medical Anthropology University of California, and San Francisco University of California. Resistant to treatment: AIDS, science, and power at the dawn of Uganda’s ‘treatment era’ 2007.

2 Chesney, M. A. 2000. “Factors affecting adherence to antiretroviral therapy.” Clinical infectious diseases: an official publication of the Infectious Diseases Society of America no. 30:171-6.

3 Katon, Wayne, and Arthur Kleinman. 1981. “Doctor-Patient Negotiation and Other Social Science Strategies in Patient Care.” In The Relevance of Social Science for Medicine, edited by Leon Eisenberg and Arthur Kleinman, 253-279. Dordrecht: D. Reidel Publishing Company.

4 Davey, P., C. Pagliari, and A. Hayes. 2002. “The patient’s role in the spread and control of bacterial resistance to antibiotics.” Clinical Microbiology and Infection no. 8:43-68. doi: 10.1046/j.1469-0691.8.s.2.6.x.

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