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