By Doug Olsen, PhD, RN, associate professor, Michigan State University College of Nursing, and AJN contributing editor. Olsen regularly addresses topics related to nursing ethics. His most recent article for AJN was “Helping Patients Who Don’t Help Themselves” (July issue; free until August 15).
Why does the American Medical Association’s recognition of obesity as a disease (AMA, 2013) stir strong feelings? People are just as heavy as before, their health is suffering as much, and the therapies for obesity remain the same. The main difference is that the label may give clinicians a better rationale to seek reimbursement for obesity-related services, which might help increase treatment rates. No one yet knows if the new label will really have an effect on treatment rates; in any case, this is not what people are concerned about.
The issue is what labeling a health problem with a behavioral component as a “disease” implies about personal responsibility—or what people think it means. How does personal responsibility relate to individual suffering?
The relationship between decision making, suffering, and personal responsibility is at the heart of bioethics as it is practiced in the United States. But bioethics didn’t invent our cultural tendency to connect personal responsibility and sympathetic regard for suffering, and our current approach to the issue was developed through 28 centuries of increasing focus on the individual as the center of the moral universe in Western thought.
In the West, we are heavily invested in considering humans as autonomous—beings that act deliberately and are internally self-directed. In bioethics, the principle that clinicians should respect patient autonomy, patients’ deliberate, self-directed decisions, has preeminence over all other principles. Many critique this preeminence as a shortcoming, some deny its truth, and some defend it as right and proper. Patient autonomy can be ethically denied, but only with substantial justification.
But patient autonomy has another implication that’s less often discussed—people are considered responsible for the consequences of autonomously made decisions. Autonomy over health decisions and the concomitant responsibility for health decisions has emotional consequence that take a toll on clinical relationships (Olsen, 1997).
People tend to feel diminished sympathetic regard for the suffering of persons they hold responsible for that suffering—possibly because of the sense that the suffering is deserved. Suppose you tell a friend that John really hurts over his divorce from Mary, and your friend replies, “He treated her poorly and brought it on himself.” Is there any doubt about the friend’s lack of sympathetic regard for John’s suffering, although feelings were never mentioned, only a formulation about responsibility.
For nurses, the tendency to tie sympathetic regard for patient suffering to their personal behavior and choices has two potentially negatives effects on the clinical relationship. On one hand, nurses who blame patients for their pathology may have less caring concern for the patient.(Olsen, 1997) When patients sense this, they can feel marginalized and judged.
The other possibility is that nurses, in an effort to increase their sense of caring concern for the patient, may err in the other direction by denying the role that a patient’s ostensibly deliberate behavior plays in causing the pathology, thus mitigating the nurse’s sense of the patient as responsible. This potential distortion of the situation may undermine the nurse’s ability to help the patient modify the problematic behaviors.
Ideally, the nurse’s caring concern for the patient exists undiminished by a realistic understanding of the role that the patient’s behavior plays in bringing about the problem. Such a response can’t always be spontaneous—self-reflection plays a crucial role in ethical comportment. The ability to maintain caring concern in the face of a patient’s self-harming behaviors is a concept that can be traced back at least as far as Carl Rogers’ description of unconditional positive regard.
The value of detaching responsibility from sympathetic regard for suffering is clear in clinical relationships, but is it possible or even desirable for society? Talcott Parsons (1951) had as a condition of entry into the sick role that the person not be responsible for the condition. Traditionally, a person is understood to be a victim of illness, which is what entitles that person to sympathy.
However, the traditional division of people into either responsible or not-responsible as related to health behaviors now appears overly simplified. Most negative health behaviors, including overeating, are related to addictions that neuroscience tells us exert powerful influences on behavior. In addition, a focus solely on personal responsibility inadequately explains why smoking is overrepresented in the poor and obesity varies widely by income, ethnicity, and geographic location. Clearly, there are other factors at play.
Society’s ability to maintain a conception of illness that dichotomizes health-related sufferers into innocent victims who are “sick” and others who are reaping deserved consequences is no longer tenable. A great deal of current health-related suffering and death in the U.S.—for example, emphysema, type II diabetes, and heart disease—is directly related to forms of pathology arising as a consequence of lifestyle and ostensibly deliberate behaviors. In the AMA’s resolution “Recognition of Obesity as a Disease,” disease is defined, but in that definition there is no mention of etiology, let alone a specification that the cause must not be a product of person’s will.
What benefits society? Society’s conception of how to respond to pathological states caused by deliberate behaviors should be dictated by what benefits society, not by an outdated moral judgment of health behaviors. Lowering the rate of obesity can only benefit the public by substantially lowering health care costs and increasing the quality of life for millions. A judgmental lack of sympathetic regard does little to change people’s behavior or lessen their suffering, even while it allows the nonsufferer to avoid guilt. On the other hand, calling lifestyle-related pathologies a disease—in the traditional sense of being beyond the individual’s control—thereby denying the sufferer’s role in causation, may create moral hazard and dependency, as well as damaging the person’s ability to change that behavior.
Therefore, the public should re-conceptualize disease, adopting a more nuanced view of causality and a less rigid approach to who does and does not deserve sympathy. A number of modern diseases aren’t as easily and completely cured by remedies applied from the outside by experts; instead, they may be combated by altering behavior. Sometimes experts can help.
In the today’s world, it is less a matter of a person’s being diseased or well, and more a matter of being more healthy and less healthy—behaving so as to be at higher risk or behaving so as to lower one’s risk. The question to determine if you’re responsible and deserve to suffer or innocent and deserve treatment isn’t simply “do you have a disease?”—instead it should be “what can we do to help people improve their health and so benefit all society?” Some organizations like http://drugguardians.com are indeed being agents of change towards fixing the whole picture, we need far-seeing allies in this matter.
American Medical Association House of Delegates. (2013). Resolution: 420, Recognition of Obesity as a Disease. http://media.npr.org/documents/2013/jun/ama-resolution-obesity.pdf
Centers for Disease Control and Prevention. (2012). Current Cigarette Smoking Among Adults—United States, 2011. Morbidity and Mortality Weekly Report, 61(44), 889-894.
CDC. (2012). Adult Obesity Facts. http://www.cdc.gov/obesity/data/adult.html
Mokdad, A., Marks, S., Stroup, D. & Gerberding, J. (2004). Actual Causes of Death in the United States, 2000. JAMA, 291(10), 1238-1245.
Olsen, D. (1997). When the patient causes the problem: The effect of patient responsibility on the nurse-patient relationship. Journal of Advanced Nursing, 26, 515-522.
Parsons, T. (1951). The social system. London: Routledge.