Compliance is a Dirty Word
When I was an undergrad psychology major, zillions of years ago, we learned about Philip Zimbardo’s classic experiment where he created a prison and, with a flip of a coin, made half of his volunteer, mentally healthy college student participants inmates and the other half guards. With an instant power differential, the “guards” immediately started to harass, punish, and even abuse the “prisoners”. i One lesson? A power differential can be a dangerous thing. And, requiring “compliance” in healthcare instantly creates such a power differential.
In the past 5 years or so, I’ve heard a lot about patient-centered care and patient engagementin kidney care. AHRQ describes patient-centered care as “relationship-based, with an orientation toward the whole person.” ii It incorporates patients’ values and preferences. The term “patient-centered care” does not appear in the ESRD Conditions for Coverage. But, there is a mandate for dialysis clinics to involve patients in their care and plan of care as much as they’re willing to participate. Staff are required to honor patients’ rights—including the right to refuse treatment, which can be interpreted as choosing not to “comply”.iii
Patient engagement is…well, it’s tricky to figure out exactly what it is, since there are so many definitions. But, patient engagement has an element of active and meaningful participation of patients and families in decision-making, policy development, and “engagement in one’s own health, care, and treatment.”iv
Demanding Compliance is Not Providing Patient-Centered Care
Despite the new patient-centered and patient engagement rhetoric, at the end of the day, though, the question still seems to be, “ how do we get patients to comply?” “Non-compliance” is a term I hear frequently (and pay-for-performance has a disturbing element of cherry picking that can make it hard for “non-compliant” patients to receive care)—but compliance and patient-centered care are opposite ends of a spectrum.
Here’s why: “compliance” (with synonyms like: assent, acquiescence, docility, obedience…) arises out of a disease-based, “Medical Model” in which “dis-ease” is acute and either self-limiting or fatal; treated with medicine or surgery in a clinical context that ignores the patient’s belief system or life priorities. The staff’s job is to be the medical experts. The patient’s job is to seek good care and comply. When we use this model and someone’s kidneys fail, our only consideration is treatment, and other aspects of life—from child or elder care to education, work, or travel—don’t really matter and are rarely (if ever) even asked about.
Patients are labeled “non-compliant” when they choose not to—or are not able to—follow their treatment plans . Over the years, I’ve heard stories like these (and so have you):
- A parent insisted on getting off of the machine early at each in-center treatment.
- A patient didn’t take his or her prescribed blood pressure medications.
- A patient came in 6 liters fluid overloaded
In the first case, the patient chose to leave early so he could meet his small children at the school bus. No one had asked him which treatment slot would fit his life, so he did what he had to do to be sure his little ones were safe. In the second case, the patient could not afford all of the prescribed medications, because he lost his job. In the third case, the patient did not understand how dialysis worked and why she should limit her fluid intake, when it was summer and she was thirsty.
The Medical Model Doesn’t Work with Chronic Illness
Chronic kidney disease is a chronic disease. The Medical Model doesn’t fit, because there is no place in it for patients to take an active role—yet the job of someone with a chronic disease is to self-manage (not comply), and self-management is a far bigger job than just compliance. Self-management includes maintaining safety and reporting symptoms, for example, in addition to following a care plan that patients develop in consultation with their care teams. Fortunately, there is a Chronic Care Model,v which looks like this:
As you can see, better health outcomes are produced when informed, activated patients work productively with a prepared, proactive practice team. Does that sound like compliance? No! I think it sounds like self-management, with the care team coaching patients so they can understand why they might want to follow their care plans, and have the tools to do so.
Using a disease-based, Medical Model, “compliance” approach fails patients, because they are people with their own often complicated lives, and focusing solely on the clinical means we deliver care that doesn’t support their values or meet their needs. vi Then, we are surprised or even angry when patients don’t do what we want them to do. The reality is, most of us would not be any better at compliance than our patients are—and for many of the same reasons. As adults, we don’t like being told what to do. We appreciate being asked to contribute our ideas and wisdom. We like being asked what will and won’t work for us. We might prefer to be the guards and not the prisoners, but at the end of the day, it’s best if we are neither.
How to Provide Care That Is Patient-Centered
When you want to figure out how to engage someone in his or her own health think about YOURSELF first:
- How does it make you feel when you need a follow-up medical visit, and a desk clerk hands you an appointment slip without asking you about your schedule?
- How important is it to you to know why you should do something—not just what?
- Do you like to have your health care questions answered, or dismissed?
- How well do you do with exercise? Your diet? Your New Year’s resolution to drink or smoke less?
- Is your blood pressure or blood sugar in the target range? If not, are you taking steps to control it?
I’m sure you can see where I’m going with this. To be truly patient-centered, we need to ask patients about their values and preferences and then honor those. We are all human, and life can interfere with our best intentions sometimes. Rather than chastising patients, think about what you might want if it were you. Empathy and understanding about the difficult changes that may be required? Better information tailored to your language, reading level and learning style? Respect? A chance to vent? Instrumental help to overcome barriers (such as free medication samples or a shift time or treatment type to fit with life outside of dialysis)? Find out, meet those needs, and you are likely to find that more of your patients collaborate with you to produce better health outcomes for themselves—they become engaged in their care when you show that you care.
So, what can we say instead of compliance? I prefer “ follow the treatment plan .” And, for “non-compliance”? How about “ our team’s failure to engage someone in self-management”— or “ someone is exercising his or her right to refuse care .” Dialysis clinics—in-center or at home—are not prisons. Collaboration has the potential to boost health outcomes more than coercion ever will.
iii Part 494 Conditions for Coverage for End-Stage Renal Disease Services Interpretive Guidance, Interim Final Version 1.1, October 3, 2008, http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/GuidanceforLawsAndRegulations/Downloads/esrdpgmguidance.pdf accessed August 27, 2014
iv Gallivan J, Burns KK, Bellows M, Eigenseher C. The many faces of patient engagement. J Participatory Med. 2012 Dec; (4):e32. http://www.jopm.org/evidence/research/2012/12/26/the-many-faces-of-patient-engagement/
vi Green AR, Carillo JE, Betancourt JR. Why the disease-based model of medicine fails our patients. West J Med. 2002; 176(2):141-3