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Illness as Failure: Blaming Patients.

At fifty, everyone has the face he deserves.

--George Orwell

Thy rebuke hath broken my heart; I am full of heaviness: I looked for some to have pity on me, but there was no man, neither found I any to comfort me. They gave me gall to eat: and when I was thirsty they gave me vinegar to drink.

--Prayer Book

Mr. Washington, a fifty-eight-year-old man with a long history of heavy cigarette smoking and alcohol consumption, presented to the emergency room with weight loss and severe difficulty swallowing. A battery of diagnostic tests quickly disclosed that he was suffering from advanced cancer of the esophagus. Once this conclusion had been reached, more than one member of the health care team could not help remarking that Mr. Washington had "brought it on himself," through decades of abusing his health. When one physician heard other members of the team express this attitude, she became indignant and accused the others of "blaming the victim." "Mr. Washington has suffered enough already, and what little remains of his life will be even worse," she said. "Why don't you stop worrying about who is to blame, and instead focus your energies on taking good care of your patient?"

Should we roundly condemn victim blaming in all cases, and devote our full attention to every patient, without regard to the role their own choices may have played in generating their afflictions? Or might there come a point at which the link between patients' choices and their afflictions appears so strong that it diminishes the strength of their claims on our resources, our ministrations, and perhaps even our sympathy?

Why and How We Blame Patients

The phenomenon of assigning moral blame for illness is far from new. The Bible often describes illness as the wages of sin, and the Book of Leviticus repeatedly links bodily affliction with ritual impurity. In recent times, epidemiological research has transformed venerable moral vices such as sloth, gluttony, intemperance, and fornication into medical risk factors--sedentary lifestyle, obesity, alcoholism, and unsafe sex. Implicit throughout is a causal association between habit and health, according to which the afflicted may be regarded as the instigators of their own bodily misfortune.

As our biological and epidemiological understanding continues to advance, more and more illness becomes explainable in terms of risk factors. The progressive elucidation of avoidable risk factors, in turn, strengthens the case for treating patients themselves as the cause of their diseases.[1] Once we admit that patients bear some degree of responsibility for their afflictions, the circle of blame is limited only by our understanding of pathology and epidemiology.

To the obvious example of cigarette smoking one could add a host of other hazardous conditions and behaviors for which patients might be blamed: alcohol and drug abuse (increasing the risk of cirrhosis, heart disease, and AIDS), failure to wear seat belts (injury or fatality in a motor vehicle accident), obesity (diabetes and cardiovascular disease), sedentary lifestyle (cardiovascular disease), and multiple sex partners and unprotected sex (AIDS, other venereal diseases, and cervical cancer). The list of hazardous choices extends even further, to include avoidance of marriage (singles of both sexes tend not to be as healthy as their married counterparts), nulliparity (women who have never had children suffer an increased risk of breast and endometrial cancer), and even failure to find satisfying work (people who like their jobs tend to be healthier than people who don't).

To blame people for the health habits they adopt, two factors in addition to the link between habit and health must be taken into account. First, individuals must genuinely choose to adopt those habits, and their failure to relinquish them must also be a matter of personal choice. Second, individuals must understand that what they are doing is hazardous.[2] It would have been not only unjust but nonsensical to blame smokers for contracting lung cancer back in the 1930s, before the link between smoking and lung cancer had been elucidated. On the other hand, the more thoroughly people under stand the threat that certain habits pose to their health, the more solid the case for holding them responsible when they fall ill.

A thorny issue for those rugged individualists who would like to lay all of the blame for behavior-related diseases at the feet of individual risk takers is the link between hazardous behaviors and broader personal and social conditions of life. There are strong relationships between behaviors such as cigarette smoking and demographic characteristics such as race, level of education, and socioeconomic class.[3] Poor people are much more likely to smoke than the well-off, and highly educated groups such as physicians are much less likely to smoke than people who did not attend college. Similar statements may be made about a variety of health behaviors, including alcoholism, obesity, promiscuity, and violent crime, among many others. To some observers, the demographic patterns of hazardous behavior indicate that risk taking is not primarily a matter of personal choice, but the product of social and economic forces over which the individuals involved may possess little knowledge, let alone control. On this view, a poor person might deserve less blame for smoking than would a rich person. Other observers with a strong commitment to personal responsibility might regard low educational attainment or poverty as no less blame-worthy than the choice to smoke cigarettes.

In spite of the vital role of understanding in rendering any action voluntary and hence subject to praise or blame, ignorance itself is one of the shortcomings for which health professionals may blame their patients. All too common are patients who present for care relatively late in the course of disease, past the point at which good treatment results could have been anticipated, because they did not believe (or did not want to believe) that they were really sick. Consider the breast cancer patient who had been observing a growing lump in her breast for nearly two years, and only saw her doctor once it had ulcerated through the skin and become foul smelling. Her physicians asked her pointedly why she had waited so long to seek care, an attitude that obviously made her feel very uncomfortable, and soon she broke down in tears. Later, when her physicians talked amongst themselves about her prognosis, they clearly felt relieved of responsibility for her dismal prospects. "It's not our fault that her prognosis is so poor," they seemed to say, implicating the patient herself as the responsible party.

Patients may also be blamed for their failure to respond to therapies which, from the physician's point of view, should have worked. In this scenario, patients are blamed not for making themselves sick, but for failing to get well. In contemporary medical parlance, the patient, not the physician, is the one to whom failure is typically ascribed. For example, oncology patients are routinely described as having "failed" to respond to their treatment regimens: "Mrs. Jones is a 37 year old mother of three who failed the standard breast cancer chemotherapy protocol, subsequently failed our newest investigational protocol, most recently failed autologous bone marrow transplantation, and now presents for palliative care with widely metastatic disease."

Mrs. Jones's "failures" mean that her tumor continued to grow despite medicine's best efforts to stop it, but physicians tend to speak of the outcome not in terms of her tumor's resistance to therapy, or their own inability to provide an effective treatment, but her failure to respond. Imagine how such a patient would feel if she could listen in on the discussion of her case. "But doctor, how did I fail? I did everything you told me to, faithfully complying with your every recommendation. I never missed an appointment, never failed to take my medications, never complained when my hair fell out and those medicines you injected into my veins made me sick to my stomach. I even permitted you to enroll me in your experimental protocols in hopes of advancing medical knowledge and helping other patients in the future. Tell me, doctor, how did I fail?" Whether the physicians involved actually blame the patient or not, these habits of speech contribute to a presumption that the responsibility for failure lies with the patient, while simultaneously absolving the health professions because caregivers did the best they could.

Patients may be blamed for over- or under-reacting to their conditions. Some exhibit an unusual degree of acceptance, unconcern, or even confidence in the face of harrowing medical circumstances. I know of a patient with advanced cancer who, though warned that she would likely survive only several months, produced considerable consternation among all those caring for her when she stubbornly persisted in planning for her daughter's college graduation a year hence. That ceremony was so important to her that she simply declined to allow herself to enter into the prognostic narrative her physicians had constructed for her, and instead wrote her own script. To the physicians, this behavior smacked of ignorance and denial, a refusal to "come to grips" with her situation.

An especially insidious form of patient blame has developed from heightened interest in "the power of positive thinking." Flurries of self-help books, many written by physicians, extol the virtues of a positive mental attitude in preventing and curing disease. Whether "positive thinking" boosts health or not, the claim that it does so creates in the minds of many patients the conditions for denial and self-recrimination.[4] Confronting such accounts, they may experience implicit pressure to marginalize or completely deny all negative feelings. This, in turn, can undermine their ability to come to terms with their affliction. And when things go poorly, they may feel compelled to question whether they failed to do the right thing to make themselves well. "If only I had prayed more, I wouldn't have fallen ill in the first place," or "If only I had been more positive in my mental outlook, my tumor wouldn't have recurred," or simply, "I guess I didn't deserve to get better." The more patients are encouraged to take responsibility for their health successes, the more liable they are to feel culpable when their health fails.

The impairment that accompanies affliction may produce not only shame, but a sense of diminished entitlement that undermines or prevents efforts to seek care. In a culture that places a premium on autonomy and self-sufficiency, the loss of the ability to provide for and take care of oneself may prove profoundly enervating, resulting in neglect of otherwise treatable problems. Many patients who need someone to talk to about their pain and suffering may feel inhibited by the fear that they will be branded "whiners." Although they would benefit from sharing their experiences with their physician, they may feel that they should "buck up" or "grin and bear it" rather than risk appearing weak and unable to cope on their own.

Part of the explanation for victim blaming arises from the special psychology of the health professions themselves. Physicians are constitutionally averse to the notion that some diseases "just happen," and regard it as an article of faith that there is no such thing as a truly "random" disease. Cases in which no cause can be found are thought to reflect current limitations in our understanding and diagnostic capabilities, rather than proof that some diseases have no scientific explanation. The intellectual quest to find a cause for affliction may stem to a significant degree from the health care professional's psychological impulse to suppress a disturbing realization of personal vulnerability. From a caregiver's point of view, it is unnerving to realize that "I, too, could fall ill and die."

One of the most venerable psychological self-defense stratagems is to erect protective barriers between oneself and one's patients. Physicians instinctively seek out ways to differentiate themselves from those for whom they care. The physician may say, "My patient is a cigarette smoker, while I assiduously avoid all cigarette smoke; therefore, I need not fear that I, too, will contract lung cancer." The white coat, the stethoscope, and the title "Doctor" all help to provide further insulation. Such a buffer zone may help to maintain the physician's psychological equilibrium, but once established, the buffer zone frequently becomes colonized by blame. Once someone can be isolated as "not one of us," it becomes psychologically less problematic to treat them in a way in which we would not want to be treated. Perhaps one of the reasons that physicians sometimes withdraw from terminally ill patients, and refer to other caregivers patients in whom they can find no organic cause for suffering, is not merely that they "cannot do anything" for such patients, but that contact with such patients threatens the security of their knowledge and sense of control, their powers to hold at bay the otherwise wayward and menacing forces of affliction.

Responses to Patient Blaming

The impact of economic, social, and cultural settings on personal health behaviors merits close examination. There is no question that people with lower levels of income and educational attainment tend to engage more often in riskier behaviors and to fail more frequently to engage in behaviors that would reduce that risk. The same applies to health care: low-income people tend to seek less care. The roots of these behaviors, however, may lie not in a lamentable zest for risk taking or a refusal to take personal responsibility for health, but in a different way of looking at the world, which disaffected health professionals serving such populations could begin to elicit if they tried.

For example, individuals living in poverty may be more firmly grounded in the present, giving less thought to the morrow than health professionals, who by dint of character and long experience take delayed gratification for granted. To talk about the increased risk of heart disease and stroke decades down the road from failing to take anti-hypertension medicine today may have little effect, because the patient's temporal horizon may not extend that far. Perhaps the patient's sense of vulnerability is already fully engaged by the prospect of avoiding violent death on the way home from the hospital. Similarly, socially disadvantaged individuals may experience less of a sense of empowerment in charting their own destiny, viewing illness and other afflictions as arising from external sources. Other circumstances may have inculcated the view that they simply don't have much control over their lives.

The contrast between a view of preventable illness that emphasizes personal responsibility and one that emphasizes social circumstances is mirrored by contrasting public policy approaches. Those who, like most health professionals, are psychologically inclined toward a perspective that emphasizes personal responsibility may favor approaches that educate and motivate people to take good care of themselves. They may regard the public health challenge as one of getting people who are making a mess of their lives to "clean up their acts." By contrast, people who underscore the importance of social circumstances are likely to focus their interventions accordingly. For example, instead of trying to make smoking look stupid, they may favor policy initiatives that reduce access to cigarettes. More radically, they may argue that we should redirect money that would otherwise be used to treat preventable diseases to improving public education and job training, thereby addressing the roots of the behavior-related illness. Perhaps the most complete and balanced approach to preventable illness would incorporate elements of both, recognizing the importance of individual and social factors.

At the level of individual caregiver-patient relationships, how should health professionals react to the pervasive phenomenon of patient blaming? To begin with, we must acknowledge that a certain amount of recrimination may, in some cases, prove just and even therapeutic. If educational efforts targeted at enhancing the general public's understanding of the links between habits of living and health status enables them to make more informed choices about how to live, then the effect is at least in part a salutary one. Similarly, it may be helpful in some cases for caregivers to adopt a somewhat stern attitude with patients whose habits are placing their health at unnecessary risk. In our litigious society, where people have fallen into the unfortunate habit of looking for someone else to blame for their misfortunes, it is desirable that we be reminded from time to time of the measure of responsibility we bear for our own lot in life.

In pointing out health risks, we must be mindful of the fact that epidemiological data apply best to populations, not to individuals. We can predict with decent accuracy the number of lung cancers that will develop in a population of 10,000 cigarette smokers, but we cannot say with certainty--or often, even with a high degree of confidence--whether any particular smoker will develop cancer. In many cases, causal connections may be difficult to draw even retrospectively. For example, just because someone who is overweight suffers a heart attack, we cannot say with certainty that her weight was the cause of her affliction. Too many overweight people never suffer heart attacks, and too many people who are not overweight do.

In terms of the relationship between patients and caregivers, blame as such is rarely called for. The physician's objective is not to determine who is fault, but to promote health, treat disease, and relieve suffering. If pointing out to patients what they are doing to themselves is likely to achieve these objectives, and it can be done in such a way that the patient-physician relationship is not wrecked or placed in undue jeopardy, then such approaches may be warranted. The goal, however, is not to provide physicians with an opportunity to vent their righteous indignation, but to improve the lives of patients.

From a pragmatic point of view, the fact that blaming the victim can inhibit care seeking, erode hope, and undermine the therapeutic alliance between patients and health professionals must be reckoned with. Many patients exhibit exquisite sensitivity to their caregivers' reactions and attitudes and would not fail to detect an accusatory tone in their physician's voice. If patients feel that the health professionals to whom they would otherwise turn in times of need are likely to heap blame upon them, they will seek needed care less readily. Once patients have met with such reactions, they may withdraw from further treatment, preferring to choose other caregivers, or even confront their afflictions alone, rather than be made to feel ashamed or guilty. In both cases, the patient's withdrawal threatens to generate additional preventable morbidity and suffering, contrary to the most fundamental goals of medicine.[5]

In our haste to ascribe blame, we must recognize our own thirst for omniscience and omnipotence. To pretend that we understand and control all of the gateways to illness would be to grandly overestimate our capabilities. So long as human beings remain biological creatures, fragility and mortality will remain ineluctable facts of human life. Even physicians themselves fall ill and die. This admission need not diminish medicine's resolve to stretch every fiber in the noble effort to sustain health and diminish suffering. Yet the acknowledgment of personal and professional limitations that it implies should serve as a reminder to health professionals--a reminder that our responsibilities extend beyond the mere conquest of disease to encompass even those frequent, disquieting situations in which the possibilities for cure have been exhausted. Good medicine may sometimes begin just at the point where the possibility of a biological reprieve has ended.

The acknowledgment of medicine's limitations invites health professionals, to whom the mirage of omnipotence and invincibility seems so appealing, to rekindle appreciation of our limitations and vulnerabilities as human beings. This is not a counsel of futility, apathy, or despair, but a necessary and fitting recognition of the fact that there are forces at work in the world that are beyond our ken, let alone our grasp. The meanings that emerge from suffering remind us that human lives have significances that extend far beyond the question of whether or not someone is healthy. Instead of distancing ourselves from suffering and doing everything we can to minimize risks, physicians need to be willing to take risks. We need to get to know patients well enough to understand their life outlook, including biographical and cultural perspectives that are barely hinted at in the medical record, that are impossible to quantify or analyze through laboratory tests and imaging studies, and that no health insurer will ever pay for.

Above all, health professionals should seek to develop relationships with patients that maintain and promote human dignity. Patients are human beings before, during, and after their interlude as patients, and no medical action is warranted that does not respect that fact. Human worth is not adequately assayed by such medical parameters as blood pressure, serum cholesterol, physical fitness, or even life expectancy. If a blameful attitude threatens to undermine the caregiver's ability to be compassionate and understanding, then it should be abandoned for the sake of these far greater goods.

Perhaps it is too much to ask that health professionals should love their patients. Yet there is much that we could learn from love, if we seek to care as best we can for them. For example, it is in the nature of genuine love always to be accompanied by vulnerability. The lover, whether parent, spouse, offspring, or friend, is always liable to suffer for having loved. To seek first to protect oneself, or to be always in control, is to be guilty of a kind of inauthentic love, which in many ways is worse than not loving at all. By contrast, genuine love is precarious, always carrying with it the risk of rejection, and even betrayal. One cannot genuinely love without becoming involved, and to be involved in a personal sense is to be committed, to bind one's fate with that of the beloved, and thereby to open oneself up to the possibility of disappointment and rejection.

Perhaps our best model of this genuine love is found in the God of the Bible, who is deeply involved with creation, delighting in its beauty and goodness, but expressing profound disappointment and even frank grief when human affairs go tragically awry. As in the Bible, so in health care, patience and fidelity are not signs of weakness, but inestimable virtues. Just as God does not abandon his covenant people, so the caregiver, in some infinitely smaller yet nonetheless profound way, enjoys the opportunity to remain faithful to the patient.

References

[1.] C. Tishelman, "Getting Sick and Getting Well: A Qualitative Study of Aetiologic Explanations of People with Cancer," Journal of Advances in Nursing 25 (1997): 60-67.

[2.] C. Mumma and R. McCorkle, "Causal Attribution and Life-Threatening Disease," International Journal of Psychiatry and Medicine 12 (1982-3): 311-19.

[3.] N. Freudenberg, "Health Education for Social Change: A Strategy for Public Health in the U.S." International Journal of Health Education 24 (1982): 138-45.

[4.] L. De Raeve, "Positive Thinking and Moral Oppression in Cancer Care," European Journal of Cancer Care 6 (1997): 249-56.

[5.] A. Houldin, et al., "Self-Blame and Adjustment to Breast Cancer," Oncology Nursing Forum 1 (1996): 75-79.

Richard Gunderman, "Illness as Failure: Blaming Patients," Hastings Center Report 30, no. 4 (2000): 7-11.

Richard Gunderman is the vice chairman of radiology at Indiana University. He is a faculty member in the Indiana University Summer Institute on Philanthropy and Voluntary Service, which is an intensive six-week institute that combines a service internship and course work in philosophy and practice of philanthropy.
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Author:GUNDERMAN, RICHARD
Publication:The Hastings Center Report
Date:Jul 1, 2000
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