2
Opening Remarks

Jeremiah A. Barondess

Traditionally, medicine and the health care system have been oriented around the management of acute disease. For a variety of reasons, notably the enhanced management of infections and a variety of other clinical advances, and preventive activities largely effected by changes in individual behaviors—the average age of the population has been increasing. Further, we are increasingly able to treat a number of disorders to the point of chronicity. The result of all this, of course, is that the system is now required to care for chronic disorders to a vastly greater degree than previously obtained. The corollaries of that fact include an important shift from cure to care as the paradigm in which we operate and new emphases in the direction of the maintenance of function and on patient values as they relate to treatment priorities, research, and outcomes assessment.

In addition, focusing on chronic disease brings special prominence to the critically important distinction between disease and illness. It is a distinction that has substantial pertinence to the issues to be considered in this conference. Disease, in this construct, is a biological phenomenon, to be understood ultimately in structural, physiological, or biochemical terms, increasingly at the molecular level. Much of the clinically relevant output of research in recent decades and a great deal of clinical practice, as a result, have focused on the aberrant biology of disease processes. Illness, on the other hand, is not a biological process but a subjective one. It is a term that encompasses the variety of discomforts, dysfunctions, limitations, and interferences with social as well as symptom-determined physical functioning and also involves the various fears, concerns, and emotional dislocations produced by ill health. The illness needs of patients are sometimes lost in the shuffle in our focus on



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--> 2 Opening Remarks Jeremiah A. Barondess Traditionally, medicine and the health care system have been oriented around the management of acute disease. For a variety of reasons, notably the enhanced management of infections and a variety of other clinical advances, and preventive activities largely effected by changes in individual behaviors—the average age of the population has been increasing. Further, we are increasingly able to treat a number of disorders to the point of chronicity. The result of all this, of course, is that the system is now required to care for chronic disorders to a vastly greater degree than previously obtained. The corollaries of that fact include an important shift from cure to care as the paradigm in which we operate and new emphases in the direction of the maintenance of function and on patient values as they relate to treatment priorities, research, and outcomes assessment. In addition, focusing on chronic disease brings special prominence to the critically important distinction between disease and illness. It is a distinction that has substantial pertinence to the issues to be considered in this conference. Disease, in this construct, is a biological phenomenon, to be understood ultimately in structural, physiological, or biochemical terms, increasingly at the molecular level. Much of the clinically relevant output of research in recent decades and a great deal of clinical practice, as a result, have focused on the aberrant biology of disease processes. Illness, on the other hand, is not a biological process but a subjective one. It is a term that encompasses the variety of discomforts, dysfunctions, limitations, and interferences with social as well as symptom-determined physical functioning and also involves the various fears, concerns, and emotional dislocations produced by ill health. The illness needs of patients are sometimes lost in the shuffle in our focus on

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--> addressing the biological abnormalities that characterize disease. For patients with chronic disorders, attention to management of the illness phenomena becomes even more important than in the case of acute disease. Of course, both disease and illness should be attended to, not only by the physician and other care givers, but by the care system as well. I would add that disease and illness are not congruent. That is, it is possible to have a disease without being ill, for example, in the case of an asymptomatic pulmonary atherosclerotic plaque or a presymptomatic neoplasm. By the same token, it is possible to be ill without having a disease. Clinical practices have traditionally contained large numbers of people who are ill, that is, symptomatic, without having an underlying disease. In the case of the disorders that we are focused on today, systemic lupus and rheumatoid arthritis, all of these features come importantly into play and help to describe the needs of these patients in a more comprehensive way. For example, at various points in the course of either disease, it is possible to have biologically active disease without necessarily being ill from that activity. Further, it is possible for patients to be ill, that is, symptomatic and limited, without necessarily being in a phase of biological activity of the disease. Important management decisions flow from that divergence. This workshop is focused at the confluence of chronic disease and an evolving care system, using systemic lupus and rheumatoid arthritis as exemplars. The remarkable shifts taking place in the care system resemble in some ways the grinding of tectonic plates: there is a fair amount of energy being released, there is a fair amount of noise, a lot of furniture is being shifted, and a lot of dishes are being broken. Traditional features of clinical management are being challenged; the challenge is generated primarily by fiscal considerations. Major shifts in the power structure of health care have emerged: for example, in clinical care arrangements, shifts away from physicians toward nurses and other non physician providers; within medicine, a very substantial shift from subspecialist to generalist care; within the organizational system, shifts from providers to payers and from physicians to administrative professionals, trustees, or stockholders. The traditional fiduciary responsibilities of physicians and of hospitals and other health care institutions are under substantial pressures as the focus on the bottom line increases in intensity. The impacts of those pressures on chronic care institutions or other chronic care arrangements are less clearly defined but no less important. In general, I think it is fair to say that from the point of view of the physician there is a perception of perverse incentives in the system, away from a primary focus on fiduciary responsibilities and in the direction of payment incentives, care giver selection that may be based on characteristics that are sometimes perverse, gag rules, issues of patient eligibility in care systems, and so on. From the point of view of some care givers, corporate priorities and the issues they brings in their wake amount to an unsought second opinion. Threats to

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--> confidentiality, ethical considerations in patient care, and gaming the system are looming risks. From the sector of the patient, new vulnerabilities are produced by the shift to managed care arrangements. At the same time, managed care structures have the potential to bring some advantages, including a clearer focus on costs; the assembly of cohorts; of defined populations, perhaps allowing easier evaluation of interventions and outcomes; and the potential for greater accountability in the system. From the point of view of this workshop, focused as it is at the intersection of the patient and the care system, with particular reference to chronic disease, we should focus ultimately on patient welfare, patient outcomes, and the things that need to be done to enhance both; then we should know with some confidence whether we are in fact doing so. The central issues for us to consider are what is needed from care system arrangements, the system characteristics that are most likely to yield enhanced patient outcomes, the nature of the evidence we have in hand bearing on that issue, and very importantly, the additional things we need to know.

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