We live in a society in which health is regarded as the highest good—from the perspective of both the individual and the population as a whole. Health today is no longer part of medicine but is increasingly becoming an important economic factor. Empowerment is the new concept: activation of the individual to assume personal responsibility, while the state simultaneously withdraws from its duty to provide for the public welfare. Yet what are the limits and what are the drawbacks when we increasingly bear responsibility for our health ourselves? This chapter raises objection to the insidious notion of sickness as “guilt” and shows that personal responsibility only functions when it is anchored in social responsibility. A healthy person is not one without impairments but one who learns how to cope creatively with his own limitation and his fundamental vulnerability.
Personal Responsibility Is the New Paradigm
The passive patient who consults the expert, the doctor, and is told what to do has become obsolete—at least in political platforms. The guiding principle today is the active patient as an expression of the engaged citizen, one who does not merely follow the doctor’s orders but who sees himself as an expert on his own physical and emotional constitution, contributes accordingly, and makes decisions on his own responsibility. As his own responsibility increases, the patient is redefined as a user, an active player, who on his own initiative obtains the pertinent information and explores the options necessary for managing his health impairment. Not only does he utilize the advice and assistance of the physician, but he also consults other professionals—psychologists, pharmacists, or experts from health insurance providers, self-help groups, and experts from consumer protection associations. The modern patient assumes responsibility for his health himself and makes use of the physician and other health advisors largely as he sees fit.
“Improving the health literacy” of the patients becomes particularly important in this setting. The World Health Organization (WHO) and the European Union (EU) have defined health literacy as the “individual’s ability” to “take decisions in daily life that have a positive effect on health.” “Health literacy,” it continues, “makes people capable of self-determination and of accepting the freedom to arrange and decide with respect to their health. It improves the ability to find and understand health information and accept responsibility for one’s own health.”
Health literacy is thus a concept that explicitly rejects a patronizing health education. It replaces the previous health education, which was primarily geared to avoiding risks, with the emphasis on the competence of each individual. The aim is not primarily to ingrain certain changes in behavior in order to avoid disease but to mobilize one’s own strengths. Thus, this conception relies on motivating a person to control his own behavior. This is referred to as empowerment. The goal of health education would accordingly be to include the world in which the patient lives as well as strengthening his individual problem-solving abilities.
According to Ilona Kickbusch’s definition, health literacy can be divided into five areas:
- Competence in personal health.
- Competence in system orientation, meaning navigating the health care system.
- Competence in “consumer behavior,” meaning the ability to make “service decisions.”
- Competence in the workplace setting, meaning the ability to avoid accidents and occupational diseases.
- Finally, competence in health care policy, meaning the ability to become engaged for patient rights and other health-related issues.
This list unmistakably illustrates that health literacy, reflecting the modern aspirations, applies less to the patient in the classic sense than to the user, the “consumer.” It is he who should become empowered as soon as possible, meaning put in the position of being able to autonomously assume responsibility for himself. Yet it also becomes clear that health literacy is not simply a matter of acquiring certain knowledge. Rather, at its core, it is the ability to make many important decisions oneself, including those related to issues of one’s own health, and to acquire a certain practical competence in dealing with these questions. Thus, in discussing in health literacy, it is helpful not only to limit ourselves to only the five areas of competence mentioned—personal health, navigating the health care system, consumer behavior, health care policy, and the workplace setting—but also to differentiate three separate levels of health literacy:
- Functional competence, referring to the ability to acquire simple information (essentially the ability to read and understand texts).
- Interactive competence, examining and interpreting this information in a communicative exchange with other people.
- Critical competence as the ability to question information as well.
Promote and Demand
Naturally, all these goals and aspirations are to be welcomed. Who would not like to determine himself how he deals with health? It is obvious that people do not want to be patronized by experts, and it is a great gain that the old paternalism in which the doctor simply dictated to the patient what he had to do has since disappeared at least from political platforms. Yet it is important to see the modern concept of health literacy in the context in which it was formulated. For health literacy is not simply formulated as a goal in a vacuum but in the context of a new understanding of the state and society. It is formulated at a time when the welfare state, whose duty is to ensure that health care is provided to the population, has been declared obsolete and the call to modernize it is becoming ever louder. What is now called for is for the “activating state.” The modern understanding of the welfare state is based less on providing for citizens than on the concept of personal responsibility. The premise of the political system is thus to promote the citizen’s competences with the ultimate goal of obligating the citizen while simultaneously releasing the state from those obligations. While the welfare state must purportedly be maintained at all costs, it is in fact being dismantled behind the façade of euphemistic concepts such as freedom of choice, engagement, and personal responsibility.
It is not uninteresting to note that the state’s imposition of an obligation to assume responsibility has been coupled with the rhetoric of emancipation, of liberation from patronization. This represents an ingenious twofold strategy. The citizen is to be provided by the state with all the prerequisites for individual success while the state can withdraw from its obligations. We could aptly summarize under the slogan “promote and demand.” The first step is to encourage individual competences with respect to personal health behavior. If this does not suffice, then the second step is to threaten sanctions. But are we not overlooking the fact that the acceptance of responsibility must be linked to certain basic requirements? In other words, must people not first be rendered able to assume responsibility before they are threatened with sanctions? I think it is important to take a closer look here.
The Limits of Personal Responsibility
With the concept of personal responsibility, I feel we forget all too easily that those segments of the population that statistically bear the greatest risk of becoming sick are on average also least able to take health promotion into account in their behavior. Due perhaps to their social status, they often simply have no choice and have neither the financial means nor the freedom of choice that is present to a greater extent among the higher social strata. This means nothing less than that one first must be able to afford health-promoting behavior! The term “prevention paradox” has been introduced to describe this situation. In essence, efforts at prevention approach often fail to produce results because they generally reach those people first who need prevention the least. Conversely, the emphasis on personal responsibility further disadvantages those who are already disadvantaged. This shows that with the pathos of patient competence and personal responsibility we fail to reach precisely the people who would have a vital interest in maintaining or improving health. Here, emphasizing personal responsibility is a strategy that is too one-sided because these people do not lack the enlightenment or good will, rather the inner resources and in particular favorable structural conditions.
In this setting, I find the increasing demolition of social welfare today extremely problematic. The more we reduce social safeguards, the more we rob the already underprivileged social strata of the chance to become individually responsible. The reason why the system is nonetheless structured this way is that we have internalized the economic mindset to such an extent that we no longer notice how greatly it has altered our understanding of justice.
What is now occurring must be described as a shift away from justice based on need toward justice based on merit.
Yet most things in life are not the result of our own failings. In other words, there are social disadvantages that must be first equalized before we can even assume a justice of performance. Today we only look at the fact that in theory no one is denied access to social benefits, yet we fail to recognize that the starting conditions for this competition vary greatly. Under the undifferentiated paradigm of personal responsibility, we are thus on the verge of splitting society into two parts, into laudable healthy people and sick people who deserve sanctions.
We must remember that belonging to a certain social stratum is not the only factor that determines the ability to accept personal responsibility but that all this also depends on a person’s age and state of health. That means that socially disadvantaged people as well as older people and especially sick people have less of an opportunity to attain health literacy. This also has to do with the fact that these groups simply have more difficulty not only understanding information but also communicating about health maintenance issues with other people (experts, family members, self-help groups, etc.) and in communicating with them coming to realize what is important for themselves. Health literacy thus has to do not only with the ability and willingness to read but also primarily with whether a person has reliable social contacts. This is what the “interactive competence” mentioned earlier ultimately refers to. Therefore, relationship structures and not mere reading ability determine whether a person has the ability to develop health literacy.
When we bear in mind that sick people in particular have difficulty acquiring the required health literacy because they have fewer opportunities to communicate with other people, then it becomes clear that this is where we must begin. Promoting health literacy means not only supporting socially disadvantaged groups but also making an effort to include old and sick people. Yet then it immediately becomes clear that the concept of the “user” or “consumer” of health care services that is currently in fashion represents the wrong paradigm. That is also the greatest weakness of the idea of personal responsibility: it is based on the self-reliant consumer. This is precisely where the activating user concept has its limits. The patient in his role as a sick person is not first and foremost a self-reliant user of services. On the contrary, he is in a fundamentally asymmetrical position because he is dependent. In contrast to the consumer, he as a patient has no choice. He did not choose his illness and cannot choose freely among nonessential goods. He is simply dependent on them. What he needs is not first and foremost freedom of choice but simply someone who will help him. When a person becomes sick, he is initially characterized by helplessness, confusion, and lack of orientation. That does not mean that his freedom should not be absolutely respected! But in order to return to a state in which he is able to decide freely, he first needs someone who feels sympathy for him, who empathizes, who understands him, and who is willing to care for him. Only afterward can we think about empowerment.
Based on: Essays in Medical Ethics
by Giovanni Maio
Professor Giovanni Maio, the eloquent advocate of a new culture of medicine, poses fundamental questions in this book that no one can really avoid: Where are the promises of reproductive and transplantation medicine leading us? To what extent can health be made, and to what extent is it a gift? Does "prettier, better, stronger" promise us greater happiness? Why is the question of organ donation more difficult than is suggested to us? Does being old have its own intrinsic value? How can we acquire an attitude towards dying that does not leave us feeling powerless?
Giovanni Maio's profound plea for an ethics of prudence opens up hitherto unknown perspectives. In this way we could free ourselves from the belief in perfection and find our way to a new serenity as a condition for a good life.