Sick To Death > Chapter 2 > Misleading Words and Ideas

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Misleading Words and Ideas

The language that we commonly use to discuss illness, treatment, and payment is also becoming misleading. Ever since the Renaissance, people have identified illnesses first by giving a diagnosis. Indeed, for much of that time, providing a diagnosis was one of a physician's most important services. Even now, much of health care is organized by diagnosis. Each condition usually includes a wide range of stages, starting with minor problems and progressing to serious, advanced illness. The diagnosis alone does not tell much about severity. Furthermore, most of the people who are very sick and coming toward the end of life have more than one important diagnosis. Finally, diagnosis may not characterize needs well. Being unable to climb stairs means needing help in getting the groceries in, whether you have heart trouble or hip trouble; but many people with heart or hip trouble can climb steps. Being unable to think clearly or remember your situation requires supervision around the clock, whether the cognitive failure arose from strokes or Alzheimer's dementia.

Health-care delivery is organized by its setting - nursing home, hospital, home, and doctor's office. The setting governs how insurance pays bills, providers meet with patients, and regulations apply. However, patients with serious chronic illness change settings often. No longer is it enough to deliver high-quality hospital care for heart disease - the hospital's contribution to good outcomes means little if the next provider (such as a nursing home or physician's office) cannot play its role well. Patients, family members, and even policy makers will need to learn to assess performance with regard to the populations who are very sick and nearing the end of life in all their settings, rather than evaluating quality of care or costs only in particular care settings or with particular diagnoses or treatments. The scope of good care must include nursing homes, bed baths, advance care planning, and bereavement, as well as surgical operations, preventive services, and rehabilitation.

Some other commonplace terms also need remodeling. Statistics on the cause of death have shaped research and treatment priorities for years, and most people believe that this classification is as reliable and obvious as gender or age. Not true. When a person dies after trauma or sudden pneumonia at age fifty, it makes sense to say that this one problem was the cause of death. For most people now, the situation is much more complicated. First, the person is often sick enough and old enough that no one wants to put him or her through much travail to get a specific diagnosis, since no diagnosis could make a difference in treatment or outcome. Indeed, many people carry serious diagnoses that are never rigorously investigated and might well be misleading. In the very old, the rate of correct diagnoses of heart failure probably includes only about half of those who have had a medical bill for heart failure (Barnato et al. 2003). Sometimes, in contrast, the person carries a number of diagnoses, and which one "caused" death is difficult to discern. Even the doctor often cannot know exactly what combination of problems caused death. Autopsy would provide a great deal of information about the body's infirmities, but almost no expected deaths, especially in old age, give rise to autopsies (Podbregar et al. 2001).

Just as overall decline and multisystem failure in old age confound the diagnosis and cause of death, the very images of sickness, health, and dying come into question. Once, a person was healthy, then sick, and then usually either recovered or died within a few weeks. The classic outline of a physician-patient encounter assumes that the patient has a chief complaint, gets a diagnosis, and adopts a temporary "sick role," shedding usual responsibilities and roles in order to recover. In contrast, many patients now have many symptoms and problems, rather than a chief complaint, and the physician may find multiple well-established diagnoses, or no clear diagnosis at all, and still have to help patients cope with a difficult situation. The sick role is often lifelong and thus becomes normal life.

Again, this amounts to a new way of thinking. Instead of assuming that sick roles are part of the process of getting well, society must recognize that the natural course of life now includes living with a worsening degenerative disease in the last phase of life. As each person accumulates illnesses, risk factors, and loss of reserves, the balance of factors necessary for life becomes increasingly fragile. Smaller disruptions become enough to tip over the balance and make the person seriously ill. With that image in mind, symptoms and disabilities might be more important than diagnoses as we match patients with services. Rather than organizing payment and quality assessment by settings of care, we might do better to focus on the populations that need ongoing services as they move among multiple settings. Perhaps we could, more rationally, tie funding and regulation to the patients rather than to the setting for care. Furthermore, rather than linking resource allocation for care and research to "cause of death" statistics, our public priorities might reflect an effort to maximize comfort and capabilities as well as length of life.

Many opinion leaders have railed at the inadequacies of the acute- care model and have proposed various alternatives (Institute of Medicine 2001; Fox 1993; Wagner 1998). Oddly, the most prominent efforts to gain public attention for a chronic-care model hardly take note of the fact that serious chronic illness generally leads to death (see www. improvingchroniccare.org; www.nccconline.org). Major publications on prevalence and impact of chronic illness simply do not mention that the end of chronic illness is death or that the impact of chronic illness tends to become more pervasive and severe toward the end of life (Institute for Health and Aging 1996; Centers for Disease Control and Prevention 2002b). Chronic illness somehow pops up in the middle of a life, unconnected to its necessary end in death.

Disregard for death as the outcome of serious chronic illness is unfortunate, since the fact of implacable decline and death is important in shaping the patient's experience and judging the real merits of treatment strategies. Many elderly people would choose to have a care delivery system that made it harder to use hospitals, in return for having reliable help at home (Lynn, O'Connor, et al. 1999). An eighty-two-year-old with fragile health, for example, may well be a suitable candidate for heart surgery, but he may also reflect that his prostate cancer and his memory problems will continue to get worse and that the months of recuperation from surgery will ruin the best time he otherwise has left.

Thus, part of the work needed to undergird reform involves changes in perception. The categories of the past prevent our seeing current realities. Workingwith patterns of need as they change over time seems better than working only with diagnoses and settings of care. The time has come to abandon the expectation that patients will have a "transition from cure to care," to use the common phrase for changing the orientation of health care as the patient nears death. Often our mental models, categories, and language need updating in order to enable needed reforms.