Patients who have symptoms that they can see, focus on those symptoms. They can become confused and frustrated when clinicians focus on less obvious internal conditions. Patients without symptoms feel they are being asked by clinicians to eat unpalatable food or perform unpleasant exercise in the pursuit of a vague hypothetical outcome (eg, avoiding nephropathy). None of the clinicians indicated that they involved their patients in deciding what a desirable outcome would be, but rather stipulated an outcome based on their own beliefs. It is critical that the patients be involved in weighing the risks and benefits of treatment to come up with a practical plan.
It is by no means certain that all patients would choose the same outcomes as desirable. When given the degree of work (and, in their view, discomfort or even suffering) needed to decrease by half an already small probability of ending up on dialysis, it is conceivable that some patients would see such possible outcomes as inadequate justification for denying themselves their favorite foods. Because the treatment plan involves minimal consultation with the patient in pursuit of a goal set by the clinician, it is not surprising that the outcome is often frustration for both.
Conclusions
Clinician attitudes toward diabetes and their patients with diabetes are derived from a number of sources. One source is the culture of medicine, which is largely influenced by a shared set of medical beliefs not always grounded in science or scientific data based on current research. These attitudes and the actions that originate with them are often markedly different from the attitudes of people with diabetes. Even when clinicians voice concern for patient belief issues in the interview setting, they rarely address these beliefs as priority issues in their practice, focusing instead on numbers and drugs. Also, clinician attitudes are usually the sole or primary determinant of what outcome will be pursued. This culturally insular approach leaves patients with little input into their own care plan, and their frequent failure to follow the clinician’s plan leads to major frustration for both parties. Although the macrovascular complications of diabetes (heart disease, stroke) are the major causes of mortality in people with this disease,31 in our study they were rarely addressed by providers or patients, which suggests that these well-known and serious conditions were probably not tied to diabetes in the minds of clinicians or patients.
Clinicians should become aware of their own beliefs, understand that they have cultural as well as scientific roots, open themselves to learning the beliefs and attitudes of their patients with diabetes, and recognize that the ultimate decision about the outcome to be pursued is the patient’s, informed by the clinician’s scientific knowledge. In particular, this knowledge includes current clinical guidelines about the relationship of heart disease and blood pressure control with diabetes.32-35 Clinicians can seek a middle ground between unilaterally imposing external clinical guidelines on an unaccepting patient and adopting a near fatalistic individual relativism that does not seek to help people change behaviors that can adversely affect their health.
Such an approach will allow patients to use information offered by the clinician to identify the outcome they hope to achieve. Then the patient and clinician can work together to design a plan that will realize this desired outcome. It is likely that such an approach will decrease the frustration experienced by both patients and clinicians and enhance the collaborative effort to minimize the impact of diabetes
Acknowledgments
The authors wish to acknowledge the generous financial support of the American Academy of Family Physicians Foundation. Special thanks to Sean O’Sullivan, PhD; Lauretta Quinn, PhD, John Schwartzman, PhD; Steven Zuckerman, PhD; and Eve Pinsker, PhD, for participating in the data analysis sessions, to Anamari Golf, MA, and Dionne Hart for conducting interviews with patients with diabetes, and to Anne Larme, PhD, and Denise Stallcup, MA, for their invaluable feedback on earlier versions of this manuscript. Finally, we would like to thank Stephanie Tillman for coordinating research activities from start to finish and transcribing many of the interviews and precepting sessions.