Changing Health Care Systems and Rheumatic Disease (1996) / Chapter Skim
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4: What Would Ideal Care Look Like?
4: What Would Ideal Care Look Like?
Pages 31-72
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4 What Would Ideal Care :Look Like?
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In his words, "the system is no longer confronted primarily with the problems it was created to solve." Holman reminds us that we are entering an entirely different era, one dominated not by acute disease but by chronic disease, an era in which the prevailing paradigm is management of an unpredictably undulating course of illness. In this context he offers us a useful conceptual distinction between "disease" (the biologic entity)
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All play crucial parts in dealing with chronic illness, and together will constitute the system of the future for delivering high quality care, no matter what version of"managed care" or other delivery system provides the organizing or financing infrastructure.
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Our current system was created, in terms of its conceptual notions, its practices, and its institutions, to deal with acute disease. There is now a real discordance, because the system no longer is confronted primarily with the problems it was created to solve.
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Our serologic tests are not precise in distinguishing among rheumatic diseases. X-ray is notoriously useless in making an early and precise diagnosis, or in telling whether the symptoms themselves are a consequence of the abnormality YOU see.
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In a sense, both of us are partially knowledgeable and reciprocally knowledgeable, so an ideal system requires a partnership between the patient and the physician or among the patient, the family, and the array of health professionals who are playing a role in the care of the patient. These points can be illustrated in rheumatic disease by considering that we classify one cluster of rheumatic diseases with at least five names: rheumatoid arthritis (RA)
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Some people who seem extremely ill will respond well to therapy, and others who seem minimally disadvantaged will not respond well at all. One could recite these same differences for rheumatoid arthritis.
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Acute disease physicians in an emergency room make their decisions based on changes in minutes and hours. However, we are now talking about using much larger blocks of time as the tool to establish the trends and tempos of chronic disease.
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An example of ways in which it appears to work quite well in the rheumatic diseases has to do with our Arthritis SelfManagement Program. This program consisted of six two-hour sessions, led by trained lay leaders, to educate patients on what we knew about chronic arthritis, what we knew and did not know about its therapy, what they could do for themselves, ways to use medical and community resources, how they could interpret their symptoms, and self-management practices such as relaxation, exercise, and compensation for handicaps.
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. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health costs.
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Physician support is important for effective selfmanagement by patients. As Tables 4-2 and 4-3 illustrate, the responsibilities of primary care physicians and specialists in managing patients with chronic disease are complementary but often quite different from the roles they play in the case of acute disease.
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7. Locate health care in the most appropriate site-be it office, home, hospital - employing the most efficient methods to determine disease tempos and trends, such as proactive and reactive telephone contact, remote monitoring, mobile services, and visits to any site of care.
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5. Accept primary responsibility for care whenever appropriate for the disease or the problem, keeping the primary care physician involved and returning responsibility to the primary care physician when reasonable.
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10. Organized, integrated health care "firms" across the full spectrum of medical need extending from ambulatory care through quaternary care, and continuous working relationships between designated specialists and groups of primary care physicians.
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The second is achieving the necessary roles for patients, families, physicians, and other health professionals. The third is creating health services that are consonant with the new responsibilities.
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Because of this and the relative lack of regulation in the health insurance business, I believe there is a need for consumer-controlled organizations to which patients can turn for advocacy and also for provision of some types of services, home care services in particular. Independent living centers are examples of such organizations.
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I did belong at one time to a health maintenance organization in which primary care physicians were the lead providers, with the rheumatologist playing a consultant role. In this situation I found that getting the rheumatic disease care I needed was invariably a two-step process.
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The ideal care system would financially support the ongoing exercise and fitness needs of patients with RA or SEE.
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I have three main points: the importance of self-management, the need for changing roles, and the possibility of alternative delivery mechanisms. Hal Holman did a very nice job of laying out the case for self-management as a crucial element of the ideal care system.
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We clearly need to set up our systems so that appropriate self-management is inherent in them. Facilitating self-management is one of the role changes necessary in the ideal care system.
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I think prepaid medicine gives us the opportunity to explore alternative delivery mechanisms. Health care delivery is currently based on what is reimbursable.
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This seems to be a clinically and financially effective alternative delivery mode. In summary, my key points, which reflect some of the National Chronic Care Consortium's criteria for chronic care networks, are that self-management is essential and we need to organize our care system around it, that we need to integrate changing roles by all of our care providers into our care management, and that we need to explore alternative care delivery mechanisms.
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I have been asked to look at the question of ideal treatment from this perspective. I would like to examine the three critical components of an ideal care system, as defined by Hal Holman: the patient, the physician, and essential elements of the system itself.
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. Arthritis and rheumatic diseases: What doctors can learn from their patients.
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From page 57... ...
and the specialist, in most instances the rheumatologist, but also in others to name only a few the orthopedist, gastroenterologist, nephrologist, podiatrist, pulmonologist, or ophthalmologist. With reference to this hand-off, John Eisenberg, who spoke earlier, stated that"primary care doctors navigate, negotiate, evaluate, educate patients and make decisions, and consultants consult." This perspective raises an obvious question not only for the system of care, but more particularly for the consumer with complex rheumatic disease who, like those of us commenting today, has come to place a high value on his or her ability to maintain a direct and continuing interchange with a specialist in rheumatology.
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indicated that in a Medicare risk plan that required a rheumatology consult before other orthopedic, radiology, or therapy referrals could be made, orthopedic procedures dropped Mom 14.9 to 6.7 joint replacements per 1000 enrollees; payments to orthopedists dropped over $3.30 per member per month; arid there was an accompanying reduction in hospital costs, which were five times those of the physicians' costs.53 Specialist referral may also have the potential to confer other benefits on both the system and the patient. Again, in preliminary findings, rheumatologists treating complicated rheumatoid arthritis patients were shown to have achieved better outcomes with fewer physician visits tears primary care physicians with similar patients.54 Still another paper presented at the 1995 Scientific Meeting of the ACR suggested that patients sent for rheumatologic care had lower average annual costs, although comparison arid control data are unclear.55 The future role of and need for rheumatologists remain the subject of differing opinion.
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Obviously, more studies in this area are required, and, indeed, this need may be met by managed care organizations as they invest in the study of specialist referrals, as a function both of their bottom line and of consumers' perceptions of quality care. To summarize, an ideal care system must address these tensions in the relationship between the PCP and the specialist and must consider the most effective use of the specialist, here the rheumatologist, in treating systemic rheumatic disease.
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Exercise An ideal care system for rheumatic disease must consider the impact of exercise on patient outcomes and support patient involvement in a serious exercise program, not as part of a rehabilitation program but as part of a longterm personal commitment to health maintenance. As Allaire has noted, emphasis should be placed on "normalizing" and "mainstreaming" the patient's routine and experience.
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Certainly the experience of those of us responding, which has been confirmed by at least one study relating to osteoarthritis patients, has been that the majority of patients with rheumatic disease are not consistently advised by their physician to engage in modest range-of-motion exercises or, if so advised, are not then given specific exercise instructions.64 Nonrestrictive Drug Formularies An ideal care system must consider the value of widely varying and rapidly advancing pharmacological approaches to the treatment of rheumatoid arthritis and lupus. The value of any single pharmacological intervention varies Mom patient to patient and fluctuates over time with each individual.
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However, in the same study, similar improvements did not occur in patients with rheumatoid arthritis.69 Kaiser Permar~ente's Group Cooperative Health Care Clinic, Wheatridge, Colorado, in a pilot study now receiving ongoing funding by the Robert Wood Johnson Foundation, has noted positive patient and system responses to consultation sessions involving groups of geriatric patients. Such preliminary responses have included reduced hospital and emergency room visits, decreased mortality, arid increased physician and patient satisfaction, as well as more timely arid cost-effective use of preventive care (Scott et al., unpublished marluscript)
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What is clear is that the various forms of rheumatic disease, in particular lupus and rheumatoid arthritis, although Caught with uncertainty and demanding care that reflects not only a competent grasp of the prevailing "science" of medicine but an equally important appreciation for the illusive "art" of wise care, must and do lend themselves to standardized, considered, all-encompassing clinical treatment protocols. The depth of expertise resting within the established specialty community must be tapped in an effort to bring this essential balance of art and science critical to the treatment of any chronic illness into an ideal and workable disease management model for rheumatic disease.
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73 MEASUREMENT OF OUTCOMES IN AN IDEAL CARE SYSTEM Outcomes of an ideal care system for rheumatic disease must be measured broadly. Disease management systems will be judged by clinical, economic, and humanistic outcomes.74 Significant clinical events in a rheumatology model should include not only the traditional measurements of clinical trials (e.g., joint involvement and erosion, and physiologic and metabolic measures)
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In the future, patient health will be improved by maximizing functionality; minimizing disease, disability, and death; and improving the efficiency and cost-effectiveness of health care. This improvement involves the use of effective outcomes tools, including linked databases and collaborative research efforts.77 ACCESS TO AN IDEAL CARE SYSTEM A care system no matter how utopian in design- will never approach "ideal" if there remain those who are in need of its services but are barred Tom access.
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An ideal care system for rheumatic disease, the single most prevalent chronic condition in the United States today, should emerge within this framework and serve as a working template for numerous other chronic conditions. Systems will emerge that embrace clinical, economic, and humanistic outcomes.
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I think Bill Kelley is right on target when he argues that in a steady state it will be impossible to provide high-quality care without a medical loss ratio that has a minimum of 85 cents on the dollar. Kaiser, which is a mature system, claims it has a medical loss ratio of 95 percent.
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6 8 CHANGING HEAL TH CARE SYSTEMS AND RHEUMA TIC DISEASE premiums for our care and a plan is able to provide the quality of care we demand and make a profit, all the more power to it. A plan may transfer the profits from hospitals and doctors to investors, and the customer ends up the same basically.
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That is, do the patients get report cards? Do we feed back to the patient-provider the data on how the patient's functional status is changing and what the utilization of health care resources is?
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NORMAN LEVINSKY: I have a comment about the role of specialists and primary care physicians, but I will take one second, as Chief of Medicine at Boston City Hospital, to reinforce and emphasize the comments of a couple of speakers on the questionable utility of what I think is a middle-class model of patient involvement for some of the populations with which we deal. It is not just African American versus white.
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I would like to ask how you think that the changing health care system will be involved in the generation of new knowledge in terms of diagnosis, treatment, prevention, rehabilitation? SARALYNN ALLAIRE: That is one of the concerns that I was trying to express: if care systems require that people with rheumatic diseases be cared for by primary care physicians, each physician will see a few people with RA, an occasional person with lupus, and so on.
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From page 72... ...
JEREMIAH BARONDESS: John Eisenberg said that HMO is a grab bag term that is no longer useful. I would submit that the same is true of primary care physician, a nonhomogeneous term that embraces sophisticated generalists as well as people in various specialties and subspecialties and at various levels of training and expertise.
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