C-PAP, oral appliance, medication, orthodontic, myofunctional therapy and dietary compliance/adherence are some of the everyday buzz words in the worlds of medicine and dentistry. A quick internet search reveals thousands of citations that either seek to identify or resolve problems around the non-compliance/adherence issue for breathing, sleep disorder therapy and numerous other chronic illnesses. It must be understood that successful treatment of most chronic disorders requires high levels of patient engagement and self-management. The numbers of studies citing issues with compliance/adherence show that what has been the gold standard methodology in patient management simply isn’t working for large numbers of patients. They also do not mention how compliance, or lack thereof, manifests itself in strained physician/patient relationships.
Compliance/adherence theory stems from a traditional view of healthcare relationships developed during a time when most mortality and morbidity was caused by acute illness (Vital Statistics of the US, 1974). Patients got sick, they died, no follow up required. Disease management referred generally to the physician mandating what was best for the patient with no patient involvement in either treatment planning or therapy decision making.
Breathing and sleep disorders are chronic illnesses, and primary therapy management is the responsibility of the patient. As care providers we are motivated by knowing that the consequences of untreated and poorly managed sleep apnea not only affects the individual patient, but their families and society as a whole. Overall increased healthcare costs, work related accidents, loss of income, automobile accidents are just a few highly impacted areas. We were all trained in school to believe that compliance/adherence management of disease is somehow in our control, and if a patient fails to “comply” we have failed in our duty to treat them. Our core beliefs about what patients should or should not do often colors our clinical perceptions and how we view patients as individuals. It can and does lead to frustration and difficulty when what we believe and what actually occurs with a patient do not sync.
Compliance/adherence theory fails to address major concerns from the patient perspective. Of primary concern is the notion of control. The patient needs to be fully in control of all self-management decisions. Most of the frustration stems from our wish as providers that patients would maximize their self-management levels. Many of us lament that we feel more invested in our patients sleep apnea care than they do. If we’re honest, labeling a patient non-compliant places blame away from us and minimizes how helpless we feel. It does nothing to help the actual situation. Understanding where patient choice factors in and how we must look at each individual helps to build collaborative physician/patient relationships which are far more conducive to managing breathing and sleep apnea disorders.
Shifting thought processes, we must accept that patients make series of choices relating to the management of their disorders throughout the day. For example, what they eat, how they breathe, if they take medications as prescribed, manage their stress, wear their appliances or C-PAP or exercise. While we can educate the importance of following established protocols, there is no way we can ensure which and to what extent a patient’s decisions regarding therapy will be followed. We are responsible to educate/stress to our patients that their positive or negative self-management choices have greater impact than any therapy we offer. Decisions they either make or do not make right now, will indeed impact their health status down the road. As care providers we are accountable for the quality of care, education, and advice we provide. Ultimately, the disorder belongs to the patient.
Treatment planning for breathing and sleep disorder care should be viewed as a collaboration between equals. The notions of compliance and adherence have no place in this new paradigm of care. Both the physician/dentist and patient bring important elements to the development of an ongoing care plan. Patient input is paramount in the collaboration. Keeping this in mind allows us to help our patients reflect on their personal life situation and priorities so they will be prepared to make informed choices to improve their own care management success. The goal is to work with the patients to develop realistic breathing and sleep apnea self-management plans that fit the individual clinically, emotionally, psychologically, and socially. Patients who own the therapy plans they help create become invested in the success and long term health outcomes.
Finally, semantics matter. Removing compliance/adherence from our terminology resolves many conflicts which can arise in the doctor patient relationship. Labeling a patient “non-compliant/non-adherent” in an electronic health record that patients have full access to can create ill will and exacerbate the frustrations felt on both sides. There is no room for dysfunctional relationships between physicians, dentists, and patients in the management of chronic disorders. Giving up on such labeling is hard as many clinicians presume that it shifts responsibility for failure to the clinician. Actually, it is the reverse. Replacing compliance/adherence with empowerment/collaboration shifts a negative to a positive on both sides of the equation. This change means that clinicians will need to speak and behave differently when engaging patients in a clinical setting. Collaborating requires listening, and listening takes time. Even if it feels odd to say “we need to collaborate on a therapy plan you can live with,” practice makes perfect, and this is one thing all of us need to embrace and get right. If what we do as clinicians and educators is empower and collaborate with our patients in a joint effort to manage chronic illness, then we truly have embraced a new paradigm of patient focused precision medicine. Patients who own their disorders are more likely to focus on managing them effectively. Our job is to peel back the layers of each individual and create a pathway of empowerment for patient self-management as we walk them towards wellness and a healthier life.