Technology and Health Care in an Era of Limits (1992) / Chapter Skim
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PART V: IMPLICATIONS FOR PATIENTS
PART V: IMPLICATIONS FOR PATIENTS
Pages 151-198
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Part V Implications for Patients
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The focus of this volume is the impact of the changing health care economy on technological innovation. The changing economy affects innovation by altering the environment of decision makers changing their incentives and their perceptions of what is, and will be, valued in health care.
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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~.
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Experienced 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.
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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.
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. considering policies drawn from a bureaucratic model of resource allocation.
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However, there is good evidence to suggest that women generally get the procedure that their surgeon prefers (Osteen et al., 1992~. The adjuvant therapy decision is equally controversial (Himel et al., 1986~.
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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 process at a tertiary care center (Siminoff et al., 1989)
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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.
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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.
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The resulting policies will be inefficient because some patients will receive care that they themselves would never choose to receive and others will go without care they want. This is not to say that the health care economy, in this country or in others, does not need real constraints.
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1989. Doctor-patient communication about breast cancer adjuvant therapy.
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I recognize that personal experience can be limiting as well as illuminating. Over the past 5 years, I have read widely and deeply in the literature on medical care and health policy; I have accompanied medical school faculty on teaching rounds, observed physicians practicing in fee-for-service and health maintenance organization (HMO)
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Seldin, "Human problems and human agonies are medical problems and medical illnesses only when they can be approached by the theories and techniques of biomedical science." The underlying assumption of this reductionist approach "is that all disease is physiology gone astray. Where there is truly no physiological problem, there is no disease." The extraordinary clarity and detail of the images produced by computed tomography, or CT, scans, by magnetic resonance imaging (MRI)
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For patients, disease never is just "physiology gone astray." "What happens when my body breaks down happens not just to that body but also to my life, which is lived in that body," writes Arthur Frank, a Canadian medical sociologist who had a massive coronary followed by testicular cancer. "When the body breaks down, so does the life." Fixing the body "doesn't always put the life back together again," Frank adds, because serious illness "leaves no aspect of life untouched....
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As John E Ware, Jr., of the New England Medical Center's Institute for the Improvement of Medical Care and Health puts it, "Doctors and patients are like ships passing in the night" (Ware, quoted in Friedman, 1989~.
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To a patient, the answer is self-evident: if this enormous health care enterprise is about anything, it is about serving the needs of patients. And physicians, hospitals, and manufacturers of pharmaceuticals and medical devices cannot serve the needs of patients without knowing what those needs are without understanding how patients experience and think about illness and, therefore, what patients want and expect from medical care.
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The delegated decision-making model is under attack (see the later discussion, "The Revolution in Patient-Doctor Relations"~; hospitals, pharmaceutical manufacturers, and manufacturers of medical devices are being forced to take account of the perspective of patients and to come to terms with their needs and preferences. This is happening in part because patients are demanding it.
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; by fiscal year 1990, such funding exceeded the amount allocated to research on heart disease and approached the sum allocated to cancer research (Fumento, 19901. Patient activism has also forced significant changes in the way the Food and Drug Administration (FDA)
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The FDA is susceptible to pressure because it is expected to balance two conflicting and sometimes incompatible goals: encouraging technological innovation by making sure that effective remedies become available as quickly and as widely as possible; and protecting patients against ineffective, as well as unsafe, medications and medical devices a mandate that tends to slow the pace of innovation (see, e.g., Kessler, 1989; Lasagna, 1989~. Specifically, the federal Food, Drug, and Cosmetic Act gives the FDA power to require "substantial evidence" that a new medication (and since 1976, a new medical device)
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. Under pressure from AIDS activists, who "mix antiestablishment politics with a desperate faith in the products of medical technology" (Aronowitz, 1991)
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Merigan of the Stanford University Center for AIDS Research explains, "The changes stem from a shared desire that the control group receive the most up-to-date care in all clinical trials a principle developed in cancer therapy." That in turn means that "protocols must be changed in mid-stream" to ensure that none of the patients receive inferior treatment, and that "all patients should have an equal opportunity to enter trials, even if they have disease complications or are members of a small subgroup" (Merigan, 1990~. Some now question the ethical propriety of the randomized clinical trial itself.
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Hence "drug companies and manufacturers of medical devices have become consumers of quality of life and health status assessments" (Bergner, 1990~. Payers' demands for accountability are affecting doctors and hospitals even more than drug companies or manufacturers of medical devices.
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The selling has been vigorous. When market research indicated that patients' choices in hospitals are heavily influenced by their judgment of the quality of the doctors who practice in it, Matschulat created a multimillion-dollar newspaper, radio, and television advertising campaign describing medical advances for which Mount Sinai doctors have been responsible.
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For example, the University of Chicago Hospitals found that one patient in four was dissatisfied with pain control, a "problem score" more than double the national average; in checking with academic medical centers with better scores, hospital officials found that Chicago had lagged behind the others in installing patient-administered analgesic units. The hospital re-surveyed its patients after expanding the number of patient-administered analgesic units and found a big increase in patient satisfaction.
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"We know how to collect data on patients' functional status and well-being for research purposes," says Allyson Ross Davies, director of the New England Medical Center's Department of Quality Assessment. "But if clinicians are to use the information, we have to collect the data more economically and in real time, and we have to learn how to use the data to improve clinical practice."" To do so, Grossman brought Alvin Tarlov, John E
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Patients are not just asking questions; they are demanding an active role in decisions about their own care. This shift from delegated to shared decision making amounts to a Copernican revolution-one that is forcing physicians and hospitals to organize medical care around the perspective of the patient as well as of the physician.
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On the contrary, Wennberg, Mulley, and their colleagues have shown that when patients with benign prostatic hypertrophy are given information about the outcomes of alternative treatments and are involved in the decisions about their own care, they malice strikingly different choices for themselves than their physicians make for them. In particular, patients choose surgery far less often and "watchful waiting" far more often than do their doctors.
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Such measures are incomplete at best and may tell the doctor little about how the patient feels or functions; in conditions such as ulcers, angina, arrhythmias, diabetes, spinal stenosis, and disk herniation, among others, there is little correlation between the severity of the organic disorder and the amount of pain or other symptoms patients experience. Indeed, biomedical data explain only 10 to 25 percent of the variance in patients' functional status or well-being (see, e.g., Fowler et al., 1988; Stewart et al., 1989; Mulley, 1990; Ware, 1990~.
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We compare medical and surgical treatment for coronary heart disease by measuring survival time, patency of vessels, eleccrocardiographic changes, and treadmill exercise tests. We do not regularly perform scientifically credible measurements of whether the angina pectoris is still severe, whether the patient was truly made able to return to work, and whether the quality of life has otherwise improved for the patient and his family.
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Physicians now have at their disposal a number of easily used, as well as valid and reliable, instruments for assessing patients' symptoms, functional status, and sense of well being instruments such as the SF-36 Health Status Questionnaire developed by John E Ware, Jr., and colleagues, the Dartmouth Coop Charts, the Duke Health Profile, the Sickness Impact Profile developed by Marilyn Bergner and colleagues, and the Quality of WellBeing Scale (see Lohr, 1992; Stewart and Ware, 1992 forthcoming)
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It is an ethical imperative, as Wennberg, Mulley, Eddy, and others point out, because most medical procedures have multiple and contradictory, as well as uncertain, outcomes and because patients differ widely in their attitudes toward risk and uncertainty and in the values they attach to various outcomes. What we have called medical judgments frequently are not that at all; they are value judgments-judgments to which physicians have much to contribute but which they are not eauioned to make on their own.
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The use of chymopapain injections for herniated lumbar inter vertebral disks enjoyed explosive growth in the early 1980s, but has de clined greatly. Recent clinical trials have challenged the efficacy of many popular treatments, including lengthy bed rest, traction, and transcutaneous
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have shown that when patients are taught to play an active role in the patient-doctor relationship, their health improves as measured, for example, by hemoglobin Alc and diastolic blood pressure as well as by improvements in functional status. "We can thus assert with some confidence," Kaplan and coworkers (1989)
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Yet when so many double-blind controlled clinical trials show almost as much healing from the placebo as from the drug or procedure being tested, it is hard to escape the conclusion that the healing comes from the placebo as well as or more than-from the drug (Spiro, 1986~. TECHNOLOGICAL INNOVATION AND PATIENT CARE To recapitulate, American medicine is undergoing a change as far-reaching as that ushered in by the introduction of antibiotics a half century ago.
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. The interactive videodisc technology that Wennberg, Mulley, and colleagues 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.
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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 experiments studying the impact of patient activism on health (see above)
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to teach physicians 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.
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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 Medicare physician payment system that began in the fall of 1991.
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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.
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1990. Advances in health status measurement: The potential to improve experimental and non-experimental data collection.
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1991. Physician payment.
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1991. Of mice but not men: Problems of the randomized clinical trial.
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Journal of the American Medical Association 88:877-882. Physician Payment Review Commission.
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1990. Measuring patient function and well-being: Some lessons from the Medical Outcomes Study.
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