Do Patients Actually Take Their Medications?
There is a growing drive to move healthcare, specifically the doctor-patient relationship, from a “benevolent paternalism”1, 2 to a system where patient and physician co-create a treatment plan which gives the patient both the best health outcome and the best quality of life.
By most indications, that drive to make patients collaborators in their own care has been superficial at best.3 For example, with regards to medication use, the preferred language has shifted from the right-and-wrong, black-and-white “compliant” towards the gentler connotation of “adherent”. The focus on patient-centered care again moved the language of medication to “concordant”, something agreed upon by both patient and physician.
The shifting terminology, however, doesn’t mean patients feel like they are necessarily being heard and understood any better by their healthcare providers. One of the clearest ways to see this is by observing the area which is entirely the patient’s responsibility: the use of medications.
The numbers are staggering:
Between 30% and 60% of patients with chronic illnesses are not adherent to medical therapy, which can be both dangerous and costly, leading to hospitalization, adverse effects, and disease progression.4 Whereas nonadherence is often thought of as failure to take medications consistently, a 2010 study of e-prescriptions reported that 22% were never even filled once,5 with primary nonadherence rates of … 31.4% for diabetes medications.
You read that correctly. According to the study by Fischer et al., nearly one-third of diabetes prescriptions were never even filled.
Patients are unwilling to talk to physicians about their nonadherence/nonconcordance. If, though, patients are so unwilling to talk to physicians about not taking or even filling their medications, how do you solicit unbiased feedback about why that might be?
Listening to the Patients Where They’re Talking Openly
Tanya Bezreh, M. Barton Laws, Tatiana Taubin, Dena E. Rifkin, and Ira B. Wilson had a pretty ingenious idea. They went to the one place everyone complains about everything anonymously: the comment section. Specifically, they looked at the comment section for the New York Times article “When Patients Don’t Fill Their Prescriptions” by Dr. Pauline W. Chen, MD. The results of that study were published in this week’s Thursday Review article, “Challenges to physician–patient communication about medication use: a window into the skeptical patient’s world” in Patient Preference and Adherence.
The authors are clear, of course, that this isn’t exactly a double-blind laboratory test. It is, though, an interesting and uncensored look into what patients actually think of their doctors and communicating with their doctors, particularly regarding prescriptions.
People’s skepticism and nonadherence happens for a number of reasons you’d expect: people are wary of the pharmaceutical industry (33 of 117 users commented about this). Patients are wary of a medical culture in which a doctor makes a diagnosis at a glance, then writes a prescription (24 commenters). The authors also note that
[t]welve posts cited cost as a barrier to adherence for them personally. Twenty more assumed cost was a barrier in the abstract.
The big picture the authors paint is that patients in general — and these commenters specifically — feel that their healthcare is their responsibility.
Implicit in many of the posts is an important redefinition of the traditional physician–patient relationship. Some patients feel the onus is on them to double-check doctor recommendations, perform their own research, or decide how to make their care congruent with other demands of life including financial pressures. Others take this even further and appear to be using doctors as “consultants” whose advice they may ignore. Furthermore, it appears that these older models of how the physician and patient should interact are sometimes being replaced without explicit discussion and recognition that this is happening.
This is the most dangerous part for patients: that patients are changing the relationship between them and their healthcare providers… and forgetting to mention this change to their healthcare providers.
There is a spectrum of attitudes towards doctors. These attitudes range from the traditional role of physician as a “benevolent paternal” force. In this traditional role, “Doctor’s orders!” is enough to inspire a “compliant” patient. In the middle of the spectrum, a physician is still a trusted professional, but the patient feels they need to research the opinions, diagnoses, and treatment options the physician recommends. In this scenario, the patient is their own second opinion. At the far end of this spectrum is a patient who has very little trust in the physician and in the healthcare system. This patient will view doctors as what the authors call a consultant-only physician,
whose advice they may ignore.
This spectrum of internalized attitudes is in conflict with external, social attitudes towards. Even someone who spouts bizarre, rambling conspiracy theories about collusion between “big pharma” and doctors appears to want to show professional deference to an MD face-to-face. Doctors — even doctors we don’t trust — are viewed as having power over us:
Previous research has noted how the professional status of doctors is reinforced by patient deference and by avoiding open disagreement and conflict.6, 7 This fits within the long-noted tendency of politeness to prevail in asymmetric power relationships.8
Theory in the Practice
The authors build on work citing Jürgen Habermas’ landmark 1981 book Theorie des kommunikativen Handelns (English The Theory of Communicative Action) to help explain the shift from the paternal doctor and “compliance” to the co-creation of positive health outcomes and “concordance”.
In brief, Habermas distinguishes communicative action from strategic action. Communicative action is an open dialog aimed at finding the best course of action for all parties involved. Strategic action is what happens when parties enter dialog with a goal or agenda, and act in order to try and achieve that aim.
This distinction is useful in this context because it explains what patients increasingly want from doctors (communicative action), and what they feel physicians and the industries that supply healthcare can offer (strategic action).
The issue with using Habermas as a theoretical model is that communicative action assumes that the agents involved are peers, ready to listen and understand the concerns of all parties involved. Whether or not the physician is ready to hear the patient’s misgivings, patients view themselves on unequal footing with doctors. This is where deference towards healthcare providers comes from, and is part of patients’ reluctance to discuss nonadherence/nonconcordance to a treatment plan, as well as other concerns about the entire healthcare system.
Stories Can Help
In patients’ minds, the model our healthcare system may be shifting, but that shifting internal model is only going to frustrate patients as long as they feel that they are unable to unabashedly communicate with healthcare providers. Social power structures are incredibly resilient. For the foreseeable future, patients will continue to see themselves as subordinates to MDs, and will themselves suppress the open dialog which they want to create.
The onus, then, is on physicians to solicit feedback:
Practitioners may benefit from encouraging their patients to express dissent and even mistrust about medications and medical practice. It may be necessary to invite shared decision-making overtly and to encourage disclosure of opinions that may be perceived as taboo or threatening.
The authors themselves recognize that this is
more difficult to realize than many, including patients and physicians, expect. This is where storytelling can help. Storytelling structure can quickly communicate to patients that
- the physician acknowledges that it’s usually socially unacceptable to question a physician or express reluctance to follow a physician’s instructions,
- the physician acknowledges that it’s the patient’s decision whether or not to follow a plan of treatment, and that nonadherence/nonconcordance happens,
- the physician is overtly asking the patient
to express dissent and even mistrustas a part of the discussion of treatment, not as separate to it, and
- even though this is socially taboo, the physician desires it because doing so will lead to better health outcomes for the patient.
The article reviewed: Tanya, Bezreh, M. Barton Laws, Tatiana Taubin, Dena E. Rifkin, and Ira B. Wilson. “Challenges to physician–patient communication about medication use: a window into the skeptical patient’s world.” Patient Preference and Adherence 2012, no. 6 (December 29, 2011): 11-18. doi:10.2147/ppa.s25971
1 Katz, Jay. The Silent World of Doctor and Patient. Glencoe, IL: The Free Press, 1984. ↑
2 Parsons, Talcott. The Social System. Glencoe, IL: The Free Press, 1951. ↑
3 Cushing, Annie, and Richard Metcalfe. “Optimizing Medicines Management: From Compliance to Concordance.” Therapeutics and Clinical Risk Management 3, no. 6 (December 2007): 1047–58. http://www.ncbi.nlm.nih.gov/pubmed/18516274. ↑
4 Dunbar-Jacob, J., and M. K. Mortimer-Stephens. “Treatment Adherence in Chronic Disease.” Journal of Clinical Epidemiology 54 Suppl 1 (December 2001): S57-60. http://www.ncbi.nlm.nih.gov/pubmed/11750211. ↑
5 Fischer, Michael A., Margaret R. Stedman, Joyce Lii, Christine Vogeli, William H. Shrank, M. Alan Brookhart, and Joel S. Weissman. “Primary Medication Non-Adherence: Analysis of 195,930 Electronic Prescriptions.” Journal of General Internal Medicine 25, no. 4 (April 4, 2010): 284–90. doi:10.1007/s11606-010-1253-9. ↑
6 Barry, C. A., C. P. Bradley, N. Britten, F. A. Stevenson, and N. Barber. “Patients’ Unvoiced Agendas in General Practice Consultations: Qualitative Study.” BMJ (Clinical Research Ed.) 320, no. 7244 (May 6, 2000): 1246–50. http://www.ncbi.nlm.nih.gov/pubmed/10797036. ↑
7 Butler, C. C., S. Rollnick, R. Pill, F. Maggs-Rapport, and N. Stott. “Understanding the Culture of Prescribing: Qualitative Study of General Practitioners’ and Patients’ Perceptions of Antibiotics for Sore Throats.” BMJ (Clinical Research Ed.) 317, no. 7159 (September 5, 1998): 637–42. http://www.ncbi.nlm.nih.gov/pubmed/9727992. ↑
8 Brown, Penelope, and Stephen C. Levinson. “Universals in Language Usage: Politeness Phenomena.” In Questions and Politeness: Strategies in Social Interaction, 56–311. Cambridge: Cambridge University Press, 1978. ↑