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Part V Implications for Patients

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10 The Patient's Stake in the Changing Health Care Economy Albert G. Mulley, Jr. The focus of this volume is the impact of the changing health care economy on technological innovation. The changing economy affects inno- vation by altering the environment of decision makers changing their in- centives and their perceptions of what is, and will be, valued in health care. Other papers in the volume address such changes from the perspective of health care providers or of those in industry and academia who develop new technologies. The purpose of this paper is to consider the patient's stake in the changing health care economy. Focusing on and fully understanding the patient's perspective can bring a critical advantage, for it is what health care does to and for patients that determines its value. To understand the health care economy, one must understand the deci- sion-making process that determines consumption of medical services and thereby the allocation of health care resources. Two clinical examples will clarify both the patient's role in decision making and the patient's stake in how decision making is affected by the changing economy. These exam- ples, treatment of low back pain and treatment of breast cancer, involve choices that depend both on professional knowledge and on personal value judgments and preferences. As the discussion shows, serious questions can be raised about the adequacy of the professional knowledge base and about whether treatment decisions accurately reflect the preferences of those who must bear the consequences. These problems with the adequacy of the knowledge base and the phy 153

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154 ALBERT G. MULLEY, JR. sician's role as the rational agent of the patient in a relationship character- ized by extreme asymmetry of information have been blamed for wide- spread variation in medical practices, which in turn has heightened concerns about the cost and quality of medical care (Wennberg et al., 1982; Mulley, 1990~. These failings of the professional model of resource allocation have motivated policymakers to effect changes in the health care economy. The policy solutions have been drawn from two different kinds of models: the market model and various forms of managed decision making, which have been characterized by Friedson as the bureaucratic model (Priedson, 1990; Mulley, 1991~. These two models are most evident in policies designed to promote efficiency through competition among providers and through direct management of clinical decision making. Each model implies different roles and responsibilities for doctors, patients, and policymakers. Each also portends different opportunities and constraints for innovators who would bring new drugs, devices, or procedures into use. Focusing on what is at stake for patients brings one to the conclusion that objective information is critical not only to good decision making, and ~l~C.~Uy ~c~uur`;c canon, cut also to innovation and diffusion of new technologies. Furthermore, not enough is known about what patients want from their health care system or what health care they would choose if they were provided with objective information and, when necessary, empathic sharing by their physician of the decision-making responsibility. Until such information is obtained, along with reliable assessments of the effectiveness of available and emerging technologies, policymakers and innovators will be "flying blind" along with doctors and patients as they try to make health care more efficient and effective. Hour - Scam ^11~:~_ I~.,^ ~1~_ THE PATIENT'S PREDICAMENT: LOW BACK PAIN All decisions, including those related to health care, are goal oriented. Common health care goals are to maintain good health and functioning, or to relieve morbidity that has decreased well-being or diminished functional capacity. Different people, however, have different life goals shaped by different circumstances, as well as different values and preferences. These in turn shape their particular health care wants and needs. When faced with the risk of, or actual, illness, most people without professional medical training do not have the information necessary to un- derstand their particular health care predicament or the diagnostic and treat- ment options available to them. They must rely on a physician or other professional for this technical information. ~ to ensure that the decision reflects the patient's personal health care goals, he or she must understand and communicate preferences or underlying value judgments, or both, re- garding the relevant health care outcomes.

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THE PATIENT'S STAKE 155 Dependence on the health care professional for information and for empathic understanding of values and preferences puts a premium on trust in this relationship. Sometimes the doctor can easily and correctly infer what is best for a particular patient because the decision involves such widely shared goals that it requires little in the way of quality-of-life trade- offs; but these straightforward decisions may well be the exceptions. The following clinical example may offer some insights. Consider the predica- ment of a 41-year-old male physician who exercised regularly and was in excellent health until he suddenly developed low back pain. In the ensuing weeks, back pain was largely replaced by pain in the left leg extending to the ankle; there was minimal weakness of the left hamstring muscles. Bed rest for three weeks provided little relief. A magnetic resonance image disclosed a herniation of the L5-S1 intervertebral disc impinging on the left S1 nerve root. This patient faces a choice between surgery or nonsurgical therapy. If he chooses surgery, the most likely outcome will be symptom relief, but there is a chance of a surgical complication with a serious result, even death. There is also a chance that surgery will fail and that pain will persist or worsen; if it is due to scarring in the wrong place, it may well be perma- nent. If the patient chooses continued nonsurgical therapy, the symptoms may disappear spontaneously, but it is more likely that he will continue to live with discomfort, at least for the next few years. What does this patient need to know to make the right decision? What does his doctor need to know to help him with that process? First, he needs to know the probabilities of the different outcomes noted above. Where does this information come from? Often, such probabilities are derived from the relatively limited experience of the clinician, supplemented by what he learns from others and can glean from the published literature. Based on multiple interviews with scores of back surgeons and physicians, this author can attest to wide variability in the estimates that would be provided to this man. The literature does not offer very much in the way of help. Experi- enced surgeons readily acknowledge an important publication bias that sometimes produces unwarranted enthusiasm for surgery among their younger colleagues. Data are available from only one randomized trial related to this condition; the trial was performed in Norway 20 years ago with a total of 126 patients, 60 of whom were randomly selected to undergo surgery (Weber, 19831. The paucity of information is surprising, considering that approximately 500,000 people face this decision and 200,000 find their way to surgery each year in the United States alone. Furthermore, the results of the Nor- wegian study may not apply to this particular patient. He may be quite different from those patients who were willing to be randomized, with a different clinical syndrome and comorbid factors. As a result, he may face quite different outcome probabilities.

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156 ALBERT G. MULLEY, JR. Additional questions can be raised about the adequacy of the informa- tion base, because the clinical decision problem is more complicated than what has been portrayed thus far. There are actually many choices to be made, between new and old diagnostic tests and new and old therapies. The first surgery for herniated disc was performed at Massachusetts General Hospital some 60 years ago; a handful of cases were reported by Mixter and Barr in the New England Journal of Medicine in 1934, some 40 years before the only randomized trial. Consider the technologies that have come and gone, or come and stayed, since that trial: technologies to improve diagnos- tic acumen, such as myelograms (most recently with water-soluble contrast media), discography, computed tomography (CT) scans, and now magnetic resonance imaging, or MRI; added to these are agents or procedures for treatment, such as chymopapain, microsurgery, and even percutaneous re- moval of disc material. When surgeons agree on the need for surgery, they often disagree on which nrooP.rillr~. ~holil~l he Han from the merit a~ in _ ~ ~ ^- 44 ~A ~ 414} ~ A~ ~r 1 1 ~ ~ ~ . . ~ . . preaches available Involving variations of discectomy alone, or discectomy combined with laminectomy, foraminotomy, or fusion (Deyo et al., 19911. Because of these differences, and perhaps because of differences in skill, different providers produce different outcomes, which result in different outcome rates. Neither providers nor patients have access to this kind of information in the current health care economy. Even when clinical trials are rigorously conducted, the special skills of an operator or the enthusiasm of an innovator may bias results. Ten years ago, there was considerable interest in the use of chymopapain to treat lumbar disc disease. In 1982, 108 patients were treated in seven centers in a double-blind placebo-control trial. The variation in outcomes reported from these centers was striking. In several centers, administration of a placebo resulted in an outcome equal to or better than chymopapain. In others, chymopapain was dramatically effective; in fact, in one center, 100 percent of active-agent patients were deemed successes, compared with none of the placebo patients. The overall results of the trial were positive, and their submission to the Food and Drug Administration led to approval of the com- pound for treating lumbar disc disease; that was followed by what one skepti- cal surgeon called "an unprecedented stampede with 6,000 orthopedic and necrologic surgeons lined up to take a one-day course on how the extract of papaya juice should be injected into the human back" (Pager, 1984~. Recognition of the inadequate and limited mechanisms available to maintain and enhance the professional knowledge base has led to the establishment of the Agency for Health Care Policy and Research, with its emphasis on outcomes research. The agency's main objective is a continuously improv- ing professional knowledge base complete with outcome probabilities to aid decision making and comparative rates to stimulate examination and im- provement of applications of technology.

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THE PATIENT'S STAKE 157 So there are problems with the knowledge base, and clearly patients have a stake in accurate, objective information. But that is not all the patient needs; he must also determine how he feels about the alternative outcomes. Patients who face the same probabilities may make different choices because they assign different values to the same outcomes (Sackett and Torrance, 1978; Mulley, 1 989~. A brief aside is warranted here to introduce a notion that is important in ~. . . . . considering policies drawn from a bureaucratic model of resource alloca- tion. In developing decision guidelines that include patients' preferences for different health outcomes, some number of patients might be inter- viewed. Previous work of this kind has demonstrated repeatedly that in doing so one would find a rather wide distribution of responses. As re- searchers aggregate those responses to incorporate a utility into their deci- sion model or implicit consensus process, they might use an average value. This approach allows them to scale the health states; it also provides prefer- ences for a hypothetical average patient. The clinician's job is not to scale health states but to discriminate among patients who have different relative preferences for the relevant outcomes. The decision analyst might be satisfied with the probabilities and utili- ties-and would choose the alternative with the highest expected utility. But few people make decisions based on expected utility; instead, they exhibit varying degrees of risk aversion when health, or life itself, is at stake. Most people are averse to risk, and there is some evidence that patients are systematically more risk averse than their doctors. The variable time preferences of individuals must also be considered. The evidence that is available suggests that patients with herniated discs do just as well in the long run with or without surgery. The benefit of surgery is quicker relief from symptoms. Patients must thus weigh the value they place on early . . ~. . . ~_ _ relief against a greater nsK o1 1ullg~l-.t;llll ~lllulll~ lull. Interviews with patients who suffer from low back pain have explored the interactions of these patients with their doctors during the treatment These interviews indicate substantial variability decision-making process. in how patients and physicians deal with these difficult communication issues. Generally, patients want information. But they also want to be able to trust their doctors to help them decide what is best for them. This issue is discussed more fully later. THE PATIENT'S PREDICAMENT: EARLY BREAST CANCER Let us consider a second case. A 42-year-old mother of two children considered herself quite healthy until 2 weeks ago when she discovered a suspicious lump in her right breast. She has since had a mammogram, which showed a 2.5-centimeter nodule consistent with cancer. A needle

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158 ALBERT G. MULLEY, JR. biopsy confirmed the diagnosis of invasive ductal carcinoma. She has no clinical adenopathy, and her tumor is estrogen-receptor negative. Her axil- lary nodes were negative when examined at the time of surgery. This woman, and about 150,000 like her each year in the United States, face two sequential decisions. Should she have a mastectomy or lumpecto- my and radiation therapy as local treatment? Should she receive adjuvant therapy to reduce the chances of the tumor recurring? She too needs infor- mation. For the first decision, the probabilities are quite straightforward. The best available evidence suggests that the alternative local therapies are equivalent in terms of risk of complications and effectiveness (Fisher et al., 1985~. The decision really hinges on several other factors: how the woman feels about the longer duration of lumpectomy/radiation therapy; how she feels about the risks of having a new tumor or recurrence in the preserved breast; and, most important, how she feels about keeping her breast. For decades, this has been a controversial clinical decision. In the 1890s, William Stuart Halsted reasoned that the best chance for curing breast cancer was offered by wide excision of the breast and surrounding tissue including muscles and lymph nodes. This untested hypothesis domi- nated treatment for 80 years but came under increasing scrutiny in the early 1970s. Throughout the 1970s, the frequency of the Halsted operation de- clined steadily; the procedure was replaced by modified mastectomies that were far less disfiguring. During the 1980s, reports appeared of partial mastectomy or even simple removal of the tumor itself. These breast pres- ervation procedures were not standardized, but when teamed with radiation therapy, they seemed to provide survival benefits equivalent to mastectomy. Some have argued that the slow diffusion of the breast preservation ap- proaches reflects a collective indifference on the part of a largely male profession to the quality-of-life issues important to female patients. Others argue that conservatism is appropriate when the decisions are a matter of life and death. In the United States, data are unavailable on how many women would choose one option or the other. However, there is good evidence to suggest that women generally get the procedure that their sur- geon prefers (Osteen et al., 1992~. The adjuvant therapy decision is equally controversial (Himel et al., 1986~. Until 1988, women without evidence of tumor in their axillary lymph nodes generally were not treated with adjuvant chemotherapy. In that year, however, a clinical advisory was issued by the National Cancer Institute, based on the unpublished results of a randomized trial. When those results were published and were considered in the context of other evidence, the case for adjuvant therapy was less than compelling. Approxi- mately 70 percent of women with early breast cancer are cured by local treatment. But it is impossible to predict which women will or will not have a recurrence; each faces a risk of recurrence of about 4 percent each year. Adjuvant therapy, the evidence suggests, will reduce that risk by

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THE PATIENT'S STAKE 159 approximately 30 percent, to a level of about 3 percent (Hillner and Smith, 19913. But adjuvant therapy exacts a heavy toll, conferring significant morbidity for 6 months or longer. Again, there are no data on how many women would choose adjuvant therapy if they were provided with objective information. The communication barriers are formidable. Just one example is the distinction between the absolute and relative risk difference. Should a woman be told that adjuvant therapy will reduce her risk of recurrence by 30 percent (the relative risk difference) or that it will reduce it from an annual rate of 4 percent to 2.8 percent (the absolute risk difference)? Fo- cusing on the risk and the relative reduction makes the benefits seem quite important. Focusing on the absolute risk difference makes the benefits seem smaller and raises a question of whether they justify the harm of chemotherapy. One careful examination of the adjuvant therapy decision-making pro- cess at a tertiary care center (Siminoff et al., 1989) provides some insights about the very real barriers to both communication about therapeutic op- tions and evaluation of new therapeutic regimens. In general, the women who were studied were poorly informed. They tended to substantially over- estimate the benefits of adjuvant therapy as they followed the recommenda- tions of their oncologists. Forty-eight percent of the women In the study were advised to have therapy that would be considered standard for their node status and menopausal status; 98 percent of these women followed that . .. . . recommendation. Thirty percent ot tne women were advised to follow what were considered nonstandard recommendations, which were usually part of a treatment arm of another ongoing trial; 80 percent of these women com- plied with those recommendations. Twenty-two percent of the women were advised to participate in one of three ongoing trials; of these, only 46 per- cent agreed to do so. Close examination of the content of the interviews led the author of this paper to speculate on the reasons for this singular exception to patients' willingness to comply with recommendations. The interviews suggested that the recommendation of the oncologist was often half-hearted or not supported by the information that was communicated. Oncologists often recommended standard or less aggressive nonstandard therapy to women with better prognoses (e.g., fewer positive nodes), and recommended more ns~s~r~.~sive nonstandard theranv to women with worse prognoses. In es- sence. the oncologists often behaved as if the question being addressed by They discussed trade-offs between present and future patients, with the edge always going to the identified former rather than the unidentified latter. Doctors were overly confident about what they knew, and patients were overly optimistic about how much they would benefit. Neither had an incentive to invest in new knowledge. _, _ ~ , the trial had already been answered. ~_

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160 ALBERT G. MULLEY, JR. THE PROFESSIONAL MODEL: ROLE AND RESPONSIBILITIES The two exemplary cases discussed above indicate that patients have a stake in a continuously improving base of medical knowledge that depends not only on clinical trials but also on the orderly collection of information from representative clinical practice. They also have a stake in being treat- ed like individuals with wants and needs that may be different from those of seemingly similar people. They need objective information, or a doctor who has such information, as well as help in dealing with the subjective variables that may be as important or more important in determining the care that is best for them. This formulation implies a set of responsibilities for patients and doc- tors and for policymakers. The heaviest burden falls on the medical pro- fession as the keeper of the ever-changing knowledge base. Clearly, it must do a better job of securing and making good use of both outcome probabil- ities and comparative outcome rates. The profession also has the privilege of helping people with some of their most personal decisions. It must do a better job of sharing this collective vicarious experience with those who could benefit. What about patients? The patient's role in this model is not the passive sick role that Parsons described in 1951. Do patients want information? Are they willing to face risks and participate in decision making? A small but interesting body of literature addresses these questions (Brody, 1980; Strull et al., 1984; Ende et al., 1989~. The responses can be fairly summa- rized as "yes" and "it depends." Patients generally want information whether or not they are prepared to bear responsibility for decisions. In fact, a number of anecdotes have been cited repeatedly to make the point that many patients do not want decision-making responsibility, particularly when the condition is serious (Inglefinger, 1980~. The studies that have been conducted, however, provide conflicting evidence. Most studies that have addressed the decision-making question have not assured patients that they will be provided with the information necessary to participate in an informed decision. When that information is provided, patients accept decision-making responsibility. For a woman facing a new diagnosis of breast cancer, it is a difficult time to bear the responsibility for making a decision; nevertheless, when 153 women with early-stage breast cancer were given a choice between breast preservation and mastectomy in Newcastle, England, none declined to decide for herself (Wilson et al., 1988~. Interestingly, 65 percent of the women chose mastectomy; most cited a wish to get the treatment behind them quickly and a reluctance to face the risk of future cancer in the same breast. Furthermore, there is emerging evidence that patient involvement in care has a positive impact on patient reports of treatment outcome and on

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THE PATIENT'S STAKE 161 objective measures of it (Greenfield et al., 1985, 1988; Kaplan et al., 1989~. But information is not a substitute for empathy and concern-and alone, it will not establish a basis for trust. For the patient, these may be the most important attributes of a health care encounter. The most consistent finding in the voluminous patient satisfaction literature is that those characteristics of the provider and his or her organization that make care more personal are associated with higher levels of satisfaction (Cleary and McNeil, 19881. Good communication skills, empathy, and caring are the strongest predic- tors of patient-perceived quality of care. What about the role of policymakers? This function legitimately com- prises the need to establish constraints, including economic constraints. More information about what patients want could be valuable in this regard, em- powering policymakers in a way that they have not been empowered before. Policymakers, however, also have the responsibility to provide those mech- anisms and services that constitute public goods. The kind of objective information system described in this paper is a public good. MARKET AND BUREAUCRATIC MODELS: THE PATIENT'S STAKE How have changes in the health care economy changed the patient's stake in that economy? As indicated earlier, the forces of policy change have been moving in two directions, both of which represent efforts to improve efficiency. The first has been toward increased competition-that is, the market model. Such policies shift the burden and responsibility for accurate information to patients. The greatest danger of this approach is that competition may further compromise the quality of information available to patients and to the pro- fession. Proprietary interests, competition on the basis of perceived rather than established quality, and development of unrealistic expectations before the point of sale all conspire against objective information, informed deci- sion making, and efficient resource allocation. Policies that promote com- petition have sanctioned deviations from the professional model that facili- tate persuasion through manipulation of values and preferences as well as selective use of information. The problems for patients are quite different with policies drawn from the bureaucratic model that is, what Wennberg and Barer and Evans else- where in this volume have called "micromanagement of care." Efforts to reduce variation and to reduce induced demand for unnecessary care char- acterize this approach. For patients, the danger here is not so much related to the objectivity of the information used for decision making as it is to the potential for neglecting subjective variables. Value judgments, which are necessarily aggregated in order to make policy decisions, may actually be

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88 CHARLES E. SILBERMAN laparoscopic approach is superior to the traditional procedure" (Wolfe et al., 19919. In a growing number of communities, in fact, it already has become the procedure of choice. The rapid diffusion of this technique is a response, in part, to payers' demands for less costly alternatives to expensive procedures. For the most part, however, diffusion has been driven by patient demand; the reported advantages of the technique "include diminished postoperative pain, . . . more rapid recovery and return to full activity, and a superior cosmetic result" as well as "shorter hospitalization and associated cost" (Wolfe et al., 1991; see also the Southern Surgeons Club, 1991~. Patient demand for the laparoscopic approach was so strong that plans for a prospective random- ized trial at the University of California, Davis, had to be abandoned; pa- tients were unwilling to chance being assigned to the control group (Wolfe et al., 1991). (Laparoscopic technolorrv is new hying ::'n~li'~A to Other 1~;^Ac of abdominal surgery.) Patients want more than reduction in pain and other symptoms; they want more control over their own condition and treatment, as well. Hospi- tals' growing use of self-administered analgesic units represents one Akind of technological response to these desires; giving patients more control over the management of their own pain seems to lead to less, rather than more, use of analgesic medication. Pharmaceutical manufacturers, meanwhile, are avidly searching for al- ternatives to injection for administering insulin, hormones, and other pro- tein-based medications. Self-injection is awkward and inconvenient, and many patients with diabetes dislike having to inject themselves two or three times a day because it symbolizes their dependence and lack of control. Hence manufacturers have stepped up their efforts to develop implantable pumps, patches, and methods for scra~rin~ the merlication into the nnctrilc or lungs (Thompson, 1990). The interactive videodisc technology that Wennberg, Mulley, and col- leagues are developing to inform patients with breast cancer, back pain, benign prostatic hypertrophy, and other conditions about treatment outcomes and to assist them in making decisions about their own care represents still another response to the rise of patient-centered medicine. Patients need help in making the change; the delegated decision-making model is so deep- ly ingrained that patients find it hard to relate to their physicians as equals and to play an active role in decisions ahoy their own rare Awe of the doctor is instilled in us in childhood, when we see our parents defer to the doctor and carry out his or her orders. "In the child's mind, the authority and mysterious power of the doctor supersede the au- thority of the parents," Thomas A. Preston of the University of Washington Medical School has written. "The physician is the only one who is allowed to violate the rules and taboos of the home, entering the bedroom and ~J A _ ~ A ~ ~ ~ ~ ~1 A A ~ V V ~ ~ A-1 AM 1 11 ~ ~ A ~A AA _ ~_~^ _ ^^ ~ ~ ~.$ ~ A U

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WHAT IS IT LIKE TO BE A PATIENT IN THE l 990s? 189 physically handling the child's body." By the time we are grown, we have "learned to accept the power of the doctor to set rules, make pronounce- ments, and give orders, and twe have] long since come to believe in the doctor's ability to cure" (Preston, 1986~. Even when we are well, therefore, it is hard for lay people to relate to doctors as equals; and as I have shown above, illness makes us feel vulner- able and dependent, destroying our sense of control over our lives and our bodies. Our dependency is exacerbated by our need for the doctor not only to cure us but, equally important, to help us make sense of what is happen- ina hence the need for reeducation if patients are to learn to relate to ~h~rc1r'~nc in an ~nlit~rinn hilt nonc~nnfrontational way. tJ1A]~ ^~^ ~4 _~ ^, ~ of_ The interactive video technology Wennberg7 Mulley9 and colleagues are using is an enor- mously promising approach.2 Physicians need as much help as patients. Authoritarianism is deeply ingrained in medical education and practice and is powerfully reinforced by the dependency doctors often see in their patients. "Ever since the 1960s, we've been told that the patient must be the colleague of his doctor and that the decision making must be shared equally by them," says Richard Seizer. "Intellectually and philosophically I certainly do agree." Unfortunately, it doesn't quite work out that way. When I try to call the patient in on a consultation and say, "Which alternative would you pre- fer?" invariably the patient says, "What do you mean, which alternative? I want you to tell me what to do. You're the doctor." The only unspoken word is daddy; tell me what to do, daddy. When a person is desperately ill or frightened, there is a certain kind of regression that makes you want to place yourself in someone's loving care. It is the responsibility of the doctor to have the courage to make decisions for the patient, in as kind and wise a way as he can. To be a father or mother and comfort [emphasis in the onginall (Seizer, quoted in Katz, 1984, p. 126~. Selzer's reaction is understandable, but he has misinterpreted his pa- tients' needs. Frequently, a patient "will do his best to push you into the place of parental authority, and he will make use of you as a parental authority to the utmost," Anna Freud told Case Western Reserve Medical School students in a 1964 lecture. "You must understand that." 2Greenfield, Kaplan, and Ware have used a different approach in their controlled experi- ments studying the impact of patient activism on health (see above). In 20-minute sessions immediately preceding their visits to their doctors, patients were given information about their medical record and the treatment alternatives from which their physician would choose. Pa- tients also received "coaching in behavioral strategies for increasing their participation in care during the office visit," including "techniques for improving question-asking and negotiating skills and ways of defusing hostility or intimidation on the part of the physician" (Kaplan et al., 1989; Greenfield et al., 1988).

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90 CHARLES E. SILBERMAN On the other hand, you must not be tempted to treat him as a child. You must be tolerant towards him as you would be towards a child and as respectful as you would be towards a fellow adult because he has only gone back to childhood as far as he's ill. He also has another part of his personality which has remained intact, and that part of him will resent it deeply, if you make too much use of your authority [emphasis added]" (Anna Freud, quoted in Katz, 1984, p. 146~. It will not be easy for physicians to learn to treat patients as adults rather than as children. The technology that Wennberg and Mulley are using to educate patients could be used to reeducate physicians, as well. Other technologies may also come into play; as part of his ongoing research on the therapeutic impact of patient-doctor relations, Sheldon Greenfield made a 20-minute film (using conventional VHS technology) to teach phy- sicians how to present treatment alternatives to patients, how to negotiate with patients, how to get passive patients involved in their own care, and so on.3 Patient-centered medicine will affect the development and diffusion of technology in other ways. In particular, a more patient-centered approach to medicine is likely to result in more discriminating use of technology. Until now, clinical practice has often been driven by technology, which imposed a logic of its own. Witness the so-called "cascade effect" in which one perhaps unnecessary diagnostic test leads to another, which leads to another, and so on. Here is a recent description of how the cascade effect works in cardiology. Instead of delving more carefully into the history when a patient presents with unusual chest pain, someone may order an exercise test that shows suspicious changes, leading to an isotope study with suggestive defects in a shadowy image, followed by arteriograms that, predictably, in most cases show some coronary disease, and so on down the cascade, sometimes with disastrous complications that no one wanted or anticipated (James, 1988; see also Mold and Stein, 1986~. All this because of failure to take a careful history. The more tests that are done, of course, the higher the probability that the patient will be found to have some abnormality. And when an abnor- mality is found, the assumption that disease is pathophysiological creates a bias in favor of intervention: "Once a lesion is found there is an irresistible temptation to remove it or fix it." Hence the recurrent cycle of surgical remedies, such as gastric freezing for duodenal ulcers, ligation of the inter- nal mammary arteries for angina, or intragastric balloons for obesity, that are discovered, tried, and then proven worthless at best and harmful at worst. 3Conversation with Sheldon Greenfield, December 3, 1990.

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WHAT IS IT LIKE TO BE A PATIENT IN THE 1990s? 191 The tendency to substitute diagnostic tests and surgical procedures for information from, and therapeutic relationships with, patients has been ex- acerbated by the way in which physicians have been reimbursed. By paying doctors far higher fees for tests and procedures than for the same time and effort spent talking to patients, the insurance reimbursement system has given doctors powerful financial incentives to maximize their use of tech- nology and avoid collaborative relationships with patients. The payment system "so favors the biotechnical aspects of care," Moloney and Paul (199lb) write, "that the implicit message to professionals is 'talk to patients on your own time."' The income differentials resulting from the discrepancies in fees have also channeled young physicians away from the primary care disciplines of pediatrics, internal medicine, and family practice and toward procedure-oriented specialties (Physician Payment Review Commission, 1990~. The incentives are changing now as a result of the reform of the Medi- care physician payment system that began in the fall of 1991. The change was proposed by the Physician Payment Review Commission, or PPRC, and mandated by Congress in 1989; although the reform is to be phased in over 5 years, the largest part of the change will be completed by the end of fiscal 1992 (Physician Payment Review Commission, 1991~. Under the new system, Medicare payments to physicians will be deter- mined by the resources needed to provide the service in question. These resources include the physician's time, physical effort, and skill; the mental effort and judgment required; the stress that is involved; and the associated costs of that kind of practice. When implementation of the system is com- plete, fees for primary care services will have risen by 30 percent or more, and there will be comparable reductions in payments for major diagnostic and surgical procedures. (To discourage physicians from performing more procedures to compensate for lower fees, the legislation mandates the estab- lishment of annual "volume performance standards"; if physicians increase volume more rapidly than the standard allows for that year, their fees would be reduced accordingly in the following year.) It is too soon to know whether insurance companies and employers will apply the concept to the private sector, but such an expansion is likely (Ginsburg and Lee, 1991~. Whether limited to Medicare or not, physician payment reform is bound to affect decisions about the use of medical technology. It will do this by creating a level playing field one in which financial incentives neither encourage nor discourage the use of technology. But physician payment reform will encourage the development of a more collaborative patient- doctor relationship by rewarding doctors equally for patient-oriented and procedure-oriented activities. It may also reverse the long-term movement of physicians away from primary care and into procedure-oriented specialties. The need is clear; how rapidly medicine adopts a more patient-centered approach will depend in good measure on the strength of the countervailing

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192 CHARLES E. SILBERMAN forces. As Wennberg and Mulley point out in their papers in this volume, the managed care approach to cost control implies different roles and re- sponsibilities for the actors in the health care drama doctors, patients, and policymakers. How different these roles can be was dramatized in late November 1991 when Thomas O. Pyle, the longtime chief executive of the Harvard Community Health Plan, was forced to resign by staff physicians angry over his plan to link their compensation with the number of patient visits they handled. The change would have created pressure on physicians to limit the time they spent with each patient. "Mr. Pyle's resignation underscores tensions that have developed at many health care organizations as competition for corporate and individual customers has intensified," the Wall Street Journal reported. "In August, top executives at Bay State Health Care, another large Boston-area HMO, resigned after a similar dispute con- cerning physician compensation" (Stipp, 1991~. True, many HMOs try to increase physician "productivity" by limiting the time physicians can spend per patient visit. But as Robert Blendon of the Harvard School of Public Health comments, the Harvard Community Health Plan "is supposed to be a special place for special people" (Stipp, 1991~. As Samuel Goldwyn is said to have remarked, predictions are always dangerous-especially about the future. Let me run the risk: the forces underlying the shift toward a more collaborative patient-doctor relationship seem to me to be too powerful to be offset by managed care, which moves decision making away from the patient and his or her physician and toward some anonymous bureaucrat. In the rest of the economy, after all, the trend is toward more account- ability to the customer. "About two decades ago, J. D. Power changed the nature of the automotive marketplace and influenced the future design of cars as well," Moloney and Paul (199lb) point out. "He did so by making consumer ratings of various aspects of new model automobiles widely available to the public." Industry officials warned that this practice would lead to wasteful changes in automotive design, such as larger tail fins and more metallic paint. In fact, consumers proved industry experts wrong, choosing instead cars needing fewer repairs and offering better safety features. Patients are now eager to know how other patients rate their care. They say they would use their neighbors' ratings as a key factor in deciding where to seek care in the future. Can the day be far ahead when employers, insurers, or citizens groups sponsor surveys of patient perceptions of care received under com- peting medical plans, at competing hospitals or group practices, and make those reports available to patients and their insurance sponsors? Or the day when patients and physicians collaborate and medical care is directed toward the outcomes patients want and need.

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