Dina Refki, Rukhsana Ahmed, and Jeanette Altarriba University at Albany, State University of New York
The Institute of Medicine (2001) defines patient-centered care as “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patients’ values guide all clinical decisions.” It implies meeting patients where they are and on their own terms, serving them with profound respect, acknowledging their wishes and their needs, and recognizing that each patient is a unique human being living in a social world (Epstein & Street, 2006). Goals and Outcomes of a patient-centered care include a strong patient-provider relationship and consistent communication patterns that effectively inform patients about their conditions, facilitate adherence to treatment, and activate patients’ shared decision-making.
Proper implementation of patient-centered care can be hindered by framing of barriers to healthcare access. Those frames can intensify rather than dismantle barriers. When we frame a problem, we draw the boundaries of that problem. Frames reinforce certain worldviews, identify who is responsible for the problem and the solution. Frames are powerful and can limit what we can and cannot do about a problem. They are conceptual structures that express deeply embedded thought patterns about the world and become “truth” when repeated. Certain frames in the field of health disparities have taken on the character of truth and have served to exacerbate disparities.
The notion of “health literacy”, for example, implies that the problem of health disparities is driven by a lack of understanding on the part of the patient, low educational attainment, and an inability to comprehend their own health conditions and to make decisions. Framing of the problem places the onus on the patient to become more literate and close the disparity gap. It absolves the healthcare system of the responsibility to provide quality care to patients who may not meet the standards of literacy that providers construct. Limited English Proficiency is another example of framing of foreign-born individuals for whom English is a second language and who need interpretation and translations to communicate with healthcare professionals. It implies that the problem resides with the patient and drops accountability of the healthcare system to meet the patient where they are to provide care on the patient’s terms.
The implications of these frames are far-reaching. They justify poor health outcomes and disparities. They create resentment in some healthcare quarters about the need for increased resources, service time, and staff efforts to provide care to diverse patients. An unwelcoming environment is likely to emerge where healthcare professionals perceive these patients to be a burden on the system. A tailored and patient-centered approach may seem as going “above and beyond” the call of duty since it is the patient’s problem and not the healthcare system’s duty to serve patients on their own terms.
A provider in a recent focus group led by the authors offered an effective reframing of the problem: “It's actually my responsibility as the healthcare provider. I have to do a better job of helping people understand the concepts of Western preventive medicine…The onus is on me as the provider to spend enough time explaining in a culturally sensitive, culturally humble way. We are not competent or humble enough to explain things adequately. We blame the patient. We say the reason the patient's outcome was poor was because of their cultural attitudes, their lack of English skills... I think that we have failed them.”
As researchers and educators, we must question, challenge, and reframe harmful frames. We must ask the questions: how is the problem defined? What levers of change does the definition of the problem point to? What solutions emerge from how the problem is currently framed? Most importantly, what solutions are suppressed because of how we communicate the scope of the problem? Does the problem definition call for “fixing the patient” as a solution, and relieves those serving the patient from the responsibilities of meeting the patient where they are? Where does the healthcare system’s responsibility to serve start and where does it end? Only when we replace harmful frames can we effectively contribute to sustaining a culturally and linguistically sensitive healthcare system that fulfills the promise and moral obligation of patient-centered care.