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The Second Fifty Years: Promoting Health and Preventing Disability A Can Philosophy Cure What Ails the Medical Model? Arthur Caplan CAN THE AMERICAN HEALTH CARE SYSTEM COPE WITH SUCCESS? It is often said that Americans enjoy the finest health care system in the world. The capacity of American hospitals to deliver the best emergency and acute medical care is impressive. The world turns to America for the latest breakthroughs in drugs, devices, surgical techniques, and diagnostic technologies. Yet there is a great deal of ferment evident in current discussions of the future of health care in the United States. Third-party payers, both public and private, who find themselves buffeted by high prices and rapidly escalating costs are demanding some form of relief.5 Providers who see their autonomy restricted by a growing torrent of regulations, paperwork, and bureaucratic demands are complaining vociferously about the red tape that is an all too familiar feature of health care in the United States.17,39 Some estimates maintain that 30 cents out of every dollar spent on health care in the United States goes to administrative costs. Despite the high costs of health care, many Americans still lack adequate access to necessary services. At least 30 million Americans have no health insurance. Tens of millions of Americans, knowing they lack adequate medical insurance, dread the prospect of prolonged hospitalization or extended stay in a nursing home. Many elderly Americans are forced to impoverish themselves to gain access
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The Second Fifty Years: Promoting Health and Preventing Disability to long-term care. The United States has a marvelous system for the treatment of life-threatening medical problems, but it is also spending far more on health care than any other comparable nation while obtaining less access for its citizens. America is an aging society. More Americans, owing in part to medical and public health advances, live longer lives. Others who would have died as a consequence of injuries or devastating illnesses have been rescued by the remarkable power of health care technology. This success, however, has a large price tag. When the subject turns to how to pay for the costs of success, the elderly are often described not as beneficiaries but as problems. Treating the morbidity associated with old age or paying the price to add years of life are viewed by many public policymakers as the primary causes for the current high cost of health care and as major reasons for concern about the future costs of care. Others worry that, whatever the benefits, the elderly are consuming a disproportionate amount of social resources relative to the needs of other segments of our society.32 The costs associated with the medical care of the elderly have led many commentators to advocate public policies that would explicitly ration access to life-extending medical services on the basis of age.1,6,15,27 They argue that the only way to cope with the price of success is to limit the access to services of those who are old. Those who argue for a public policy that legitimates the intentional denial of medical care to older Americans cement their case by noting that Americans are not willing to pay the bill for medical care. And the evolution of health care in the United States during the past few decades would, at least at first glance, seem to provide strong support for the position that controlling the cost of success requires the drawing of clear lines of ineligibility concerning access to health care somewhere in the second half of the human lifespan. Despite the glaring inadequacies in existing public and private insurance programs, and despite consistent public opinion poll findings that Americans are willing to pay more to remedy gaps in their health insurance coverage, Americans have shown little inclination to reach into their wallets when actually asked to ante up funds in the form of taxes of one sort or another. Congress and the President decided in the fall of 1989 to retrench the Catastrophic Health Care Program, a package of benefits that include additional hospital days for acute illness and prescription drug coverage that had been added to Medicare with the strong support of then-President Ronald Reagan and the Congress in 1988. The cutbacks in the program resulted from strident protests on the part of some older Americans about the
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The Second Fifty Years: Promoting Health and Preventing Disability unfairness of the surtax that had been levied on high-income Medicare beneficiaries to pay for the program. The debacle of the Catastrophic Health Care Program illustrates that, where health care benefits are concerned, Americans are very sensitive to considerations of equity and fairness in evaluating the distribution of fiscal burdens. Moreover, although Americans say in response to opinion polls and surveys that they are willing to pay more for health care, in reality they may not do so, especially if the higher costs mean extending already widely held benefits only to those who lack them. The problem of how to afford success where medicine is concerned threatens to become worse. New technologies, both diagnostic and therapeutic, continue to pour out of the medical research cornucopia at a rapid rate.1,37 Success in the discovery and dissemination of acute care medical technology, progress funded in large measure by public monies administered through the National Institutes of Health since the end of the World War II, has brought in its wake all manner of burdensome fiscal consequences. Health policymakers in the United States must struggle to solve an ironic problem: how to ensure equitable, affordable access to the fruits of the many already or soon to be achieved successes that have resulted from the massive public investment in biomedical research. One answer for coping with the problem of medical success is simply to pay the price. Yet the United States' experience with an effort to make the benefits of technology available to all in need has not been salutary. In 1972 the End Stage Renal Disease (ESRD) Program was added to Medicare. The program was explicitly created to obviate the need for doctors to make hard choices about who to dialyze when faced with the prospect of more persons dying from renal failure than could be treated, given the available limited supply of dialysis machines. Initially, the program's goal was to help 20,000 Americans with renal failure overcome the hurdles of money and a shortage of machines to gain access to a life-extending treatment. Expected costs were in the neighborhood of $220 million. Today, it costs the federal government well over $2.2 billion to provide various forms of renal substitution therapy to approximately 100,000 Americans. This early experience with solving the problem of technological success by lowering the "green screen" to allow universal access to a necessary health care service has occupied a central place in the consciousness of U.S. health policymakers. The explosive cost of the ESRD Program for those with a relatively rare form of life-threatening organ failure bred a generation of cynics regarding the public financing of health care in the United States. The costly ESRD attempt to avoid the need to ration access to care by providing
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The Second Fifty Years: Promoting Health and Preventing Disability universal access to all who needed a "high-tech" solution to a chronic medical problem cast an exceedingly long shadow across subsequent efforts to extend federally subsidized access to other therapies. Americans have and continue to believe in the power of technology to solve various kinds of social and medical problems. Nevertheless, without some form of public financing or cost-shifting format from the wealthy to the poor, the high cost of many technological interventions distorts the pattern of access of many Americans to the benefits of technologies. Access to various forms of organ and tissue transplantation, for example, is closely tied to the ability to pay for these procedures.11 This link exists despite the fact that provision of the transplanted organs and tissues depends on a system of procurement that is deeply rooted in a public policy of voluntary generosity and altruism.7,12,26 Moreover, the ability to pay determines access to most forms of organ and tissue transplantation, although in fact it is the public that has supported the proliferation of transplant centers throughout the United States through a variety of direct and indirect subsidies for organ and tissue procurement agencies, hospitals, pharmaceutical companies, and medical education.26 The problems generated by success seem intractable. Costs have escalated and are likely to grow in the immediate future as more technology is added to the already bulging confines of American hospitals. The society shows no inclination to foot the bill for providing ready access to expensive technology for all who might benefit from it. In addition, the demand for medical services will grow as American society ages. There would appear to be no other option but to begin the process of denying access to medical care to those who will incur the greatest costs—those in the second 50 years of the human lifespan. But is rationing medical care for the elderly the only public policy response that is practical and plausible? Perhaps not, if those responsible for planning health policy are willing to critically examine the philosophical premises that generate this apparently intractable dilemma: how to pay for the growing demand for more acute care medical technology when those who might benefit from this care do not want to pay for it. CAN PHILOSOPHY CURE OUR AILING HEALTH CARE SYSTEM? The fact that the flow of new inventions and innovations shows no sign of abating whereas the percentage of older Americans continues
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The Second Fifty Years: Promoting Health and Preventing Disability to grow has led to a cacophony of Cassandra-like warnings about the inevitability of rationing access to health care.1,14,25,27 Proposals concerning how to implement rationing range from suggestions that the elderly be deliberately shut out of the health care system at some point in their lifespan,6 to calls for rationing by excluding those who are perceived as responsible for or causing their own medical problems3,28,35 through the choice of unhealthy lifestyles, dangerous occupations, or imprudent conduct with respect to drugs, sex, or the operation of motor vehicles. As former Surgeon General C. Everett Koop has warned, there is a grave danger that our health care system will "replace forgiveness with retribution" when confronted with health problems that are seen as arising from self-inflicted harms of one sort or another. Still others have called for the grudging recognition that the ability to pay must be allowed to determine who does and does not have access to health care.24,25 Proponents of the efficiency of the marketplace argue that health care will and should be distributed, as are most other goods in the United States, by price. Indeed, the moral commitment to ensuring equal care for all regardless of the ability of the individual to pay, exhibited in the development of Medicaid and Medicare in the United States and in the creation of various sorts of national health insurance schemes in such other nations as Great Britain, Canada, the Federal Republic of Germany, Norway, and Sweden, is weakening in the face of rising costs on both sides of the Atlantic. Politicians and some health care leaders now regularly aver their allegiance to public policies that would permit variations in access to health care services on the basis of the ability to pay. Some even go so far as to advocate the exclusion of some groups (e.g., the poor, the elderly, the comatose, those responsible for their poor health through self-injury) from access to certain expensive services as the only option available to national, state, and local government.23,24,25 The volume of calls for the deliberate and public rationing of health care is likely to increase in the years to come. The American population is "greying." Improvements throughout this century in sanitation, housing, the safety of the workplace, in making food, air, and water safer along with breakthroughs in the prevention and treatment of infectious diseases have permitted more Americans to live longer. Changes in health habits and advances in the treatment of serious injury and illness mean that the demand for health care services is likely to increase for the foreseeable future. One in nine Americans in 1980 was over the age of 65. By 2030 that number will have grown to one in five.34 The fastest growing segment of American society is the group that has the greatest risk of needing
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The Second Fifty Years: Promoting Health and Preventing Disability public support for health care services as a result of chronic illness, disability, functional impairment, and the loss of the ability to live independently.34 It is likely that, as improvements in acute care technologies lead to declines in mortality, the number of Americans who have disabilities or restrictions of some sort in their cognitive or functional abilities will increase. The ranks of those with chronic disability and impairment will grow, not only because Americans are living longer but also because acute care technologies can be used to rescue persons who once would have died from acute disease or trauma. For example, extremely premature babies who survive as a result of neonatal intensive care units, adults who survive traumatic injuries to the brain or spinal cord as a result of advances in neurosurgery and emergency and intensive care, or those who have been severely burned and maimed as a result of accidents may be rescued from the fatal consequences of their disease or impairment only to survive with chronic, irremediable conditions.20 Their care will add to the already burgeoning health care bill and increase the already heated debate concerning how best to contain the costs of health care in the United States. The incessant calls for cost containment that characterize health policy debates in the United States and most other technologically advanced societies have brought in their wake a highly fractious set of debates about the aims and goals that ought to be pursued by those who provide care. Some argue that we ought to focus more of our shrinking health care dollar on children and the young as the most prudent way to utilize scarce funds.15,32 Others argue that we need to place much more of an emphasis within the provision of health care on the prevention of disease, injury, and disability and far less on the treatment of acute medical problems.19 Still others maintain that what is needed is a demedicalization of health care problems in favor of more "social" approaches to the difficulties that face those who are impaired or ill.16,41 The volume of debate about where the emphasis should lie in setting the aims and goals of health care has increased in direct proportion to the perception that rationing is and will continue to be the only plausible response to the high costs of biomedical success. What, it is reasonable to ask, can philosophical or ethical analysis possibly contribute to this bubbling maelstrom of health policy debate? If anything is true, it would appear that the time for abstract, ethereal philosophizing is long since past in the context of America's debate about health care. Most observers of the current and future health care scene see only crisis and recommend bold action as the only plausible response.5,27,37 The quintessential American
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The Second Fifty Years: Promoting Health and Preventing Disability response to crisis is to stop talking and start acting. Philosophical rumination seems a luxury that cannot be tolerated, much less afforded, in both the figurative and literal sense of the term. What is required, the experts say, are bold policy initiatives, dynamic leadership, and decisive action. Moreover, philosophy is relatively helpless in comparison with other voices who purvey fast solutions or quick fixes for the crisis in American health care. Philosophical analysis is rarely grounded in anything that even vaguely resembles quantification, and in matters in which budgets and values conflict, victory almost always goes to those who can adduce algorithms, mathematical models, and formulae.2 But the attitude that the time for careful reflection is past is wrong on any number of counts. Advances in the ability of the health care system to rescue lives that would once have been lost to acute injury and disease highlight the fact that we have had relatively little discussion, much less systematic efforts to obtain societal consensus, about the aims and goals appropriate to health care when life might be prolonged but with severe impairments. Both quantity and quality of life need to be examined where the cost of medical care is concerned. Progress in the treatment of acute disease and success in affording longer lives to more Americans open the door to key philosophical questions about the response, both in terms of health care and public policy, that is appropriate in the face of a likely rise in the incidence of chronic illness, disability, and impairment.20 The investment of public dollars both directly and indirectly in the health care system in the decades since World War II surely ought to give legitimacy to calls for public debate about the best public policy response to the crisis of cost currently besetting our health care system. Philosophizing about the goals appropriate to health care is not so much a luxury as a necessity forced on us by our society's success in preventing or treating a wide range of what were once lethal diseases such as polio, smallpox, tuberculosis, meningitis, diphtheria, typhoid, pneumonia, renal failure, and traumatic brain injuries. There is a grave danger that the discussion of the enormous costs of health care and the need to do something—anything—to rein them in will lead our nation to enact policies that are at best indifferent to the norms and values that historically have been viewed as necessary to guide the provision of health care and to underpin the formulation of health policy.33 Moreover, the stakes are so high where policy options such as publicly legitimized rationing by age or some other standard are concerned that it is hardly luxurious to try and subject the health care system to philosophical examination
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The Second Fifty Years: Promoting Health and Preventing Disability (in terms of its aims, goals, and purposes) before prescribing such bitter policy medicine. Those who insist that economics is the only voice worth listening to in a time of crisis must reckon with the fact that economists and cost-benefit analysts have had the ear of those in positions of power with respect to the American health care system for the past 25 years and have gotten just about nowhere in terms of either containing costs or broadening access to affordable health services. Abstruse philosophy may be just what the doctor ordered for a health care system desperately in need of cures. Odd as it may seem, some of the debates about whether and how to reorient the health care system of the United States do hinge on the definitions that are given to the fundamental concepts of biomedicine. Our view of what to do in the face of disease, impairment, and illness is very much a function of what we take these concepts to mean. Philosophers are often accused of being entranced by the meaning of words. That may be so, but in disputes over the future direction of health care, words and their meanings matter because the means for reaching our goals in this area are inevitably determined by what we take those goals to be. IF YOU ARE NOT SICK, ARE YOU HEALTHY? It is odd that very few medical, nursing, or pharmacy textbooks spend very much time discussing the aims or goals of professionals in these fields. The relative silence over these matters in most texts and courses is a result of the fact that the aims of medicine or nursing may seem patently obvious and thus not in need of much explication or examination. Doctors and nurses fight disease and repair injury. That is what people who go into a health profession expect to do. Someone with a fractured tibia, emphysema, or claustrophobia does not need to converse with a philosopher to discover what they want their health care provider to do. People who are injured or sick want help, and most Americans believe that workers in the health professions have, through their training, skills, and technological equipment, the best chance of providing it. Nevertheless, although combating disease and injury surely occupy center stage among the universally acknowledged aims of health care, there are other goals that may be served as well. For example, are those in health care fields responsible for promoting or preserving health? If so, are they then responsible for treating any and all factors that may cause injury or disease including poverty, lack of housing, illiteracy, and poor sanitation? H. Jack Geiger, a physician
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The Second Fifty Years: Promoting Health and Preventing Disability at the Sophie Davis Medical Center of the City University of New York, often tells of the time he and other physicians who were working in the South in the early 1960s took it upon themselves to write prescriptions for food for poor people suffering from the effects of malnutrition. The constitution that created the World Health Organization speaks of health as a ''state of complete physical, mental and social well-being."40 If that is what health is, then it will be exceedingly difficult to define any boundaries, to set any limits as to the scope and responsibilities of health professions and the health care system if they are the social institutions responsible for the advancement and preservation of health. Even if one presumes that it is clear what health care professionals ought to do to fight illness and repair injury, what does it mean to say that those who provide health care ought to preserve or promote health? Not only is the link tenuous between health and the various interventions that health care providers offer28 (although only slightly less so in many cases than the links between health care interventions and the repair of illness and injury), it is not at all clear what health is. If someone is not sick or injured, are they then healthy? Or is health a state of physical or mental functioning that goes beyond the absence of illness, injury, and defect?40 To put the point another way, is health merely the absence of disease, or is it a state with its own defining properties and characteristics? Some health care providers—psychoanalysts, cosmetic surgeons, massage therapists, sports medicine specialists, electrologists, dieticians, physical therapists, and dermatologists among others—sometimes engage in activities that have as their goal a substantive conception of health that goes beyond the absence of disease. Optimal functioning or structure is the goal of at least some of the interventions carried out in our health care system. Moreover, it is surely possible to detect differences in the health of those who are not diseased or sick. Marathon runners and philosophy professors rarely possess the same degree of aerobic health unless they are both runners and professors. Pediatricians and endocrinologists try to decide that children are short enough to merit the administration of growth hormone now suddenly available through biotechnological engineering. The use of drugs to enhance stature is another example of a case in which disease amelioration overlaps health promotion. It seems reasonable to view health and disease not so much as opposites but as complementary concepts. Health has as its conceptual opposite "unhealthy" whereas the conceptual opposites of impairment and disease are not healthy but "unimpaired" and "not diseased." If
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The Second Fifty Years: Promoting Health and Preventing Disability these distinctions are embraced, it becomes possible to ask a very basic question that is not asked often enough in current arguments about the future direction of American health policy: Who is responsible for health, and who is responsible for disease? If health and disease are not conceptual opposites, then it may be appropriate for some parts of the health care system to pursue one or the other of these outcomes but not both; alternatively, it may be appropriate to assign the goal of the pursuit of health to persons who work outside the arena of treating disease and injury. If health and disease are understood to be conceptually distinct, it is an open question for public policymakers as to which is more worthy of social resources. Finally, if health and disease are seen as complementary although parallel concepts, it is reasonable to raise the question as to which groups, institutions, and professions are best suited to meet the aims of promoting health or combating disease. The answer to the nature of the relationship that exists between health and disease requires an examination of the ways in which disease is defined. Although such an examination is without question a philosophical task, it is an inquiry with high stakes. Not only do answers to what ought to be done to promote and preserve health hinge on what we think the relationship is between health and disease; basic questions about who ought to be involved in the treatment of disease and what sorts of skills and training they should have also revolve around the answer that is given. THE DEFINITION OF DISEASE AND IMPAIRMENT: NORMATIVISM VERSUS NONNORMATIVISM The stakes involving definition of disease are, as many commentators have noted, quite high.22,29 To label a state or condition a disease is to permit intervention by medical personnel, to grant access to various forms of social benefits, to confer a degree of exculpation from social roles and moral expectations, and to provide a framework for prophylactic, ameliorative, curative, and rehabilitative strategies. This fact has hardly been lost on members of certain groups whose physical condition or behavioral propensities leave them hovering near the borders of disease. Homosexuals, alcoholics, compulsive gamblers, drug addicts, the obese, hyperactive children, and many other such subpopulations have fought long and often heated battles either to gain entry into the realm of disease or to be demitted from the rolls of its subjects. Debates about what is or is not a disease and the evolution of
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The Second Fifty Years: Promoting Health and Preventing Disability professional medical opinion as to whether a particular state or behavior is or is not an instance of disease appear to provide support for one prominent line of thought concerning the definition of disease: that it is an inherently value-laden concept. Those who subscribe to the view that definitions of disease must necessarily invoke references to norms or values are sometimes referred to as normativists. Normativists believe that mere descriptions of the status of the body or mind or the functional output of an organ system say nothing about whether someone is sick, impaired, or diseased. The only way to transform a biological fact into a disease ascription is by assessing the biological fact in the light of functions, capacities, abilities, and powers that are considered desirable or undesirable, useful or useless, good or bad. Diseases, in the normativist view, do not wear their identities on their sleeves. What is a disease in one context or social setting may not be so in another. The only way to know whether a particular state or behavior is an instance of disease is to know what it is that an individual or group values and disvalues.13,38 If values are truly inextricable elements of any definition of disease, there would seem to be a number of direct implications for contemporary debates concerning the future direction of health policy. The identification of disease states as targets for either therapy or prevention will depend on the degree to which societal consensus exists about whether or not a particular state or condition is good or bad. The treatment of disease might involve the provision of therapy or rehabilitation to restore function or ameliorate impairment, but it could also involve an effort to shift social views as to the evaluation that lies behind labeling a particular condition as a disease. The cure for disease or impairment in the normativist model may be changing social attitudes rather than readjusting physiological variables. The recognition that values play determinative roles in the classification of states and behaviors as diseases indicates that the locus of intervention in responding to or coping with disease can be quite broad, including social, economic, and even moral interventions as well as pharmacological, nursing, or surgical responses. Normativists see the determination of disease or impairment as subject to the analysis of both professionals and individuals because the values that determine well-being, unhappiness, or handicap are in the eye of the beholder and the professional. There is, however, significant opposition to the view that disease is an inextricably value-laden concept. Some view disease either as a statistical concept that indicates only abnormality or deviation from
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The Second Fifty Years: Promoting Health and Preventing Disability a widely recognized paradigm of what is normal or as any state that is far removed from what is the general average for the population. Others argue that disease can be defined without reference to values because disease refers to those states or behaviors that place an organism at a biological disadvantage in terms of survival or reproduction. The foremost exponent of nonnormativism in recent times is philosopher Christopher Boorse, who argues that disease is a value-free concept whose meaning is rooted in the notion of biological disadvantage. Boorse maintains that because evolution has designed organisms, including human beings, to perform certain functions in certain specific environments, disease exists whenever there is a deviation from what is normal, species-typical functioning.4,13 Boorse believes that values play no role in the determination of disease and injury. Other nonnormativists believe that, although value judgements may enter into the definition of disease, they need not do so when a sufficient understanding of the functional design of particular attributes of the human mind and body is available.36 Nonormativism, if valid, also has direct and important repercussions for health policy and health planning. The scope and range of health care would be limited to those aspects of human life about which sufficient knowledge exists concerning the functions of the human body or mind to form a baseline for the assessment of disease. Ignorance of the design of the human mind or body or about whether a particular behavior or trait is advantageous to survival or reproduction would make it impossible to say whether something is disease or an impairment. The locus of health care interventions would be skewed toward the individual rather than toward efforts to change the environment, culture, or social values, as would be possible under a normativist view, given that linking disease to dysfunction encourages efforts to restore function directly rather than indirectly. Biology and organic functioning are the centerpieces of intervention with a nonnormativist view of disease. Authority over disease would lie mainly in the hands of those able to make functional analyses relative to their understanding of the ideal functional design of human beings. Judgements of illness, disease, and impairment would fall to professionals because it is quite possible under the nonnormativist view of disease for persons to be sick but to feel quite well. High blood pressure or incipient diabetes are examples of diseases in which only a functional analysis can reveal the presence of a problem that would otherwise not be recognized by someone without the appropriate education and training.
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The Second Fifty Years: Promoting Health and Preventing Disability Before turning to the question of whether normativism or nonnormativism is a more defensible view of disease and the implications of the answer to that question for understanding the interconnections between the concepts of disease, injury, and health, it must be said that, rightly or wrongly, nonnormativism is the view that has dominated within health care and, indeed, among health policymakers during the latter half of the twentieth century. When doctors treat disease they do so in the belief that their goal is to restore dysfunction. The emphasis on the normal and the abnormal in medical diagnosis and rehabilitation is a reflection of the prominence of nonnormativism as the dominant philosophy of medicine. And the belief that the goal of medical research is to find cures for diseases, a goal that dominates much of the funding for health care in the United States, reflects an implicit nonnormativism concerning the nature of disease. Yet despite the importance of nonnormativism in health care and health policy, the term is not often used by those interested in analyzing the philosophical presumptions of modern health care. Instead, "medical model" or "biomedical model" is used to describe what is seen as the dominant paradigm or research strategy of medicine.9,16,41 The medical model is usually defined in sociological terms. In fact, the classic analysis of Talcott Parsons30 provides the identifying criteria of the medical model: exculpation from responsibility, eligibility for benefits, assumption of the "sick role," and yielding of decision-making authority to medical professionals. Nonnormativism is a key, albeit neglected, element of the medical model. The assumption of decision-making authority by medical professionals is directly linked to the presumption that doctors can objectively assess dysfunction and disorder and then act to restore proper functioning, whether it be mental or physical. Although critics of the medical model sometimes chafe at the paternalism that is an omnipresent aspect of institutionally based health care, they fail to see that paternalism is a direct result of the presumption of nonnormativism. If doctors do not need to make value judgements in diagnosing and treating illness and disease, and if they are able to detect facts about disease or impairment that are not and cannot be known to those who seek their care, then there is little to fear on the part of patients who cede authority to professionals as part of taking on the "sick role." The medical model is social, but it is also epistemological, and in large measure the social acceptance of the medical model rests on the acceptance of the value-neutrality inherent in the epistemology of nonnormativism, which dominates medicine.
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The Second Fifty Years: Promoting Health and Preventing Disability OBJECTIVITY AND VALUES IN THE DEFINITION OF HEALTH AND DISEASE The primary benefit associated with the elimination of values from the language of disease is that it would seem to insure objectivity for medical assessments of both disease and health. If disease is nothing more than the presence of dysfunction and if dysfunction can be understood solely in terms of the biological advantages or disadvantages conferred by various physical, emotional, or psychological states, then health care providers should be able to ascertain the presence of disease regardless of variations in the culture, setting, class, or values of those who seek their care. Moreover, it health is seen as the absence of disease, then to achieve health, medicine and the entire health care system should orient themselves toward the war against disease. This war, if fought in a value-free, nonnormativist framework, will have objective targets and objective criteria by which success or failure can be assessed. The desire to keep the foundation of medicine objective does not issue solely from the desire to minimize the issue of relativism. It also serves to keep medicine in the domain of science. For if values are omnipresent in the diagnoses, treatments, and outcome evaluations that health care providers undertake, it would seem that the claims made by medicine, nursing, public health, pharmacy, and other health professions of being scientific might collapse. Objectivity of the sort required by the norms and methods of science would not be possible in the domain of health care. Or would it? If the driving force to ban values from the realm of health care is to secure objectivity for the provision of services, then this may not be a sufficient reason for advocating nonnormativism. The tacit assumption behind nonnormativism is that values and objectivity are not compatible, but this presumption is by no means self-evident. If values and objectivity are compatible, then the desire to defend the objectivity of medical interventions against the charges of cultural imperialism or professional hegemony and the desire to allow for the application of scientific methods and techniques in health care may be possible under a normativist view of health and disease. Those who believe that health and disease are unavoidably value-laden concepts can acknowledge the role played by values but defend the objectivity of the concepts through the pursuit of consensus and agreement regarding the nature and role of values in defining health and disease. As argued above, a strong case can be made that health and disease are not conceptual opposites but, rather, parallel concepts. If
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The Second Fifty Years: Promoting Health and Preventing Disability that is true, then the values that enter into the definition of health may not and need not be the same as those that enter into the definition of disease. Moreover, it will not be necessary to secure universal assent to the validity of particular values in defining either health or disease to secure a measure of objectivity for these concepts. What will be needed is an open, frank admission that values are at play in defining both of these concepts and then a sincere effort to examine, analyze, and defend the legitimacy of certain values for both providers and recipient of health care. If normativism is not prima facie incompatible with objectivity in health care, the road to understanding the proper aims and goals of health care and health policy lies in the open examination of the values that providers, clients, patients, and payers bring to the health care arena. Concretely, those who say that health care cannot be afforded in our society must be willing to ask whether the care that is being provided is really the care that is sought. Providers must be willing to ask whether the care they provide is the kind of care their patients or clients want. Do the goals of those providing services adequately overlap with those who receive the services? There are many reasons to suspect that they do not. The medical system of the United States is strongly oriented toward acute medical care with the goals of saving life and extending life. The value of the sanctity of life plays a driving role in how health care services are organized, delivered, and reimbursed. Yet other values might and probably do dominate the beliefs of many Americans who receive care. Americans talk not only about the quantity of life that medicine permits them to enjoy but also the quality of life they can have. There are well-known dangers in invoking the language of quality of life in health policy discussions because such talk carries the connotation that some lives are more worthy than others. But quality of life language need not have any connection to moral or value judgements about the worthiness of an individual or to misguided efforts to rank the comparable worth of individual lives.7 Quality of life connotes a set of values that make life worthwhile. Although the values held by different Americans will not all be the same, there can be little doubt that many Americans assign great importance to the quality of life they can enjoy in evaluating the aims and worth of health care interventions. Americans want to know if they will be able to think, feel, interact with others, work, enjoy recreational activities, engage in sexual behaviors, have the ability to move about, evince their religious beliefs, enjoy a degree of independence in daily living, and make choices for themselves about the course of their own lives. Although there is no consensus about
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The Second Fifty Years: Promoting Health and Preventing Disability the priority that ought to be given these values and there is even less consensus about whether all or only some of these values constitute what it is that is referred to in expressions such as "quality of life," there should be little doubt that wide consensus exists as to the objective importance of quality of life in making normative evaluations of both health and disease. THE DEMEDICALIZATION OF CHRONIC ILLNESS AND DISABILITY If values play a key role in the definitions of both health and disease in our society, then it is clear that our society has not made a sufficient effort to engage in a discussion regarding which values are important and how they should shape and inform the provision of health care in the United States. Arguments about the inability of society to afford the benefits of acute care medicine presume that the American people are only concerned with the benefits associated with acute care—primarily the preservation and extension of life. But if Americans expect more their health care system than the extension of life, it becomes critically important to ask what values ought to guide the health care system in serving this broader view of the goal of health care. Just as important, when medicine is not faced with the challenge of extending or preserving life but instead must confront the reality of chronic illness or impairment, there is a crucial need for the health care system to orient itself toward a goal other than that of extending life because there is no threat to life inherent in many chronic ailments and problems. Norms and values are ineluctable elements of health care, and the driving value of health care in the American setting is the sanctity of life as exemplified in the efforts of acute care medicine to rescue lives imperiled by injury or disease. Yet chronic illness and impairment do not sit well with this view of health care. Whatever the goals of health care ought to be in confronting chronic illness and impairment, they cannot be only the extension or preservation of life. Chronic illness and impairment, whether in the old or the young, require fresh thinking on the part of health care professionals. An acute care model is simply inadequate. A nonnormative interpretation of what the aims and goals of chronic care should be is simply impossible. In fact, an acute care model of health or disease is entirely inappropriate for responding to the problems of chronic illness and disease. The professional norms of acute care medicine33 are simply out of touch with the needs and wants of those who must
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The Second Fifty Years: Promoting Health and Preventing Disability face impairment and disability along with their families and friends. The settings for delivering care, the training of those who provide it, and the modes of paying for it in the acute care model are based on a nonnormativist view of health and disease that is conceptually misleading and inimical to the interests of those whose problems stand outside this model of disease and health. A concrete illustration of the clash between a medicalized view of disease and health and the reality of chronic illness and impairment among the elderly emerges if one examines long-term care institutions such as nursing homes. In a recent study conducted during the past year, an interdisciplinary team at the University of Minnesota surveyed the residents and health care providers of nursing homes in five states to ascertain what they believed were the major impediments to their autonomy raised by residency in a nursing home.21 Only competent residents were included in the survey. The presumption of those doing the survey was that both residents and staff would be keenly concerned with their ability to maintain individual control over their medical care in the nursing home. Surprisingly, very few residents and relatively few professional staff mentioned medical care as an area of much concern. The primary focus of residents was on the quality of life permitted by control over their diet, sleep patterns, visitor rights, mobility, access to a telephone, ability to keep personal possessions, and right to leave the nursing home grounds. Professional staff were concerned with the need to maintain order and protect the safety of those in their care.21 One of the most surprising findings to emerge from the study was that the competent residents of nursing homes viewed their environment as their home. The professional staff, nurses, nurses' aides, and medical directors were much more likely to view the nursing home as a medical facility. Granted, there are many sick and demented persons who reside in nursing homes, but the fact remains that there appears to be a fundamental disagreement about the very nature of the nursing home that revolves around the relevance or irrelevance of the acute care model of disease and health for responding to the needs of competent nursing home residents. There is a tendency to use the model of disease that has proven successful in ameliorating so many medical problems and extend it to other challenges confronting the health care system. But to simply adopt the norms and values of nonnormativism and promulgate them as the guiding principles for responding to disability, impairment, and the chronic ailments associated with aging is a mistake. Moreover, it is a costly mistake in that the extension of the acute care, nonnormativist model will require the expenditure of far
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The Second Fifty Years: Promoting Health and Preventing Disability more monies than may be necessary if consensus can be achieved on the norms that ought to guide the delivery of care and services for chronic illness and impairment. THE DEMEDICALIZATION OF HEALTH Nowhere are the limitations of a nonnormativist conception of disease more in evidence than in the domain of health. For if health is not merely the absence of disease, then it is necessary to ask what sorts of values should guide the attempt to ensure and maintain health. If health is really well-being or a state of personal satisfaction, health promotion will have relatively little in common with disease prevention. To promote health among the elderly, a two-pronged strategy is required. Morbidity and impairment must be prevented, but it will also be necessary to enhance health. To achieve the latter, it will be necessary to have a better sense of what it is that those who have entered the second 50 years of their lifespan believe is important to their well-being and personal satisfaction. We know relatively little about what it means to be healthy and old. We presume that it means to be free of sickness and physical maladies. Surely, these are important goals, but health promotion requires more than disease prevention. Health promotion may be a task that also requires more than medical efforts. Indeed, it would be both unfair and unwise to ask medicine to take on the task of making people healthy. In all likelihood, promoting health is a task that will require much broader social commitment and accountability. REFERENCES 1. Aaron, H., and Schwartz, W. B. The Painful Prescription. Washington, D.C.: Brookings Institution, 1984. 2. Avorn, J. Medicine, health and the geriatric transformation. Daedalus 1986; 115:211-226. 3. Blank, R. Rationing Medicine. New York: Columbia University Press, 1987. 4. Boorse, C. What a theory of mental health should be. Philosophy of Science 1976; 44:542-573. 5. Califano, J. America's Health Care Revolution. New York: Random House, 1986. 6. Callahan, D. Setting Medical Goals in an Aging Society. New York: Simon and Schuster, 1987. 7. Caplan, A. Requests, gifts and obligations. Transplantation Proceedings 1986; 18(3):49-56. 8. Caplan, A. Imperiled newborns. Hastings Center Report 1987; 17:5-32. 9. Caplan, A. Is medical care the right prescription for chronic illness? In: S.
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Representative terms from entire chapter: