Sick To Death > Chapter 1 > Living with Chronic Conditions

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.

Living with Chronic Conditions

A medical school professor, aiming to orient my class to the medical profession thirty years ago, claimed, "Office practice is mainly cuts, sore throats, and the worried well." He may have been overstating the case even then, but he certainly would be wrong now. Most of medical care has become the care of chronic conditions. Nearly half of all Americans have one or more chronic conditions, which generally require some accommodations in order to get through the day and some ongoing upkeep to prevent or delay worsening or disability (Anderson, Horvath, and Anderson 2002). Currently, about forty million people, or 15 percent of the adult U.S. population, are limited in activities as a result of a chronic health condition (Kaye et al. 1996). Of these, almost 5 percent have difficulty walking (Freedman and Martin 1998); 7-8 percent have severe cognitive impairments (Freedman, Aykan, and Martin 2001); and 20 percent have impaired vision (Desai et al. 2001). With advancing age, the likelihood of disability gets much higher (Fried and Guralnik 1997). After age eighty-five, only one person in twenty is still fully mobile (Sharma et al. 2001). Age and disability are the strongest factors in predicting further declines in functioning, recurrent hospitalization, institutionalization, and death, even after taking into account other personal characteristics such as smoking, obesity, and several specific chronic diseases (Corti et al. 1994; Manton, Corder, and Stallard 1993).

Of those living with any chronic condition, most are suffering from more than one (Wolff, Starfield, and Anderson 2002). In the Medicare population, the average beneficiary sees seven different physicians and fills upwards of twenty prescriptions per year (Anderson, Horvath, and Anderson 2002). Having multiple chronic conditions puts people at greater risk of disability, activity limitations, and high costs. The health- care cost for a person older than sixty-five averages three to five times greater than the cost for an average younger person.

Even so, for Medicare populations with various levels of serious chronic conditions at age seventy, the costs of medical care for the rest of life are remarkably similar (Lubitz et al. 2003). A seventy-year-old healthy person with no functional limitations will spend about $136,000 in Medicare-covered services (hospitals, physicians, rehabilitation, durable equipment) during a life expectancy of fourteen more years, living with a functional limitation for six of those additional years. A seventy-year-old who is limited in at least one activity of daily living (such as mobility, toileting, feeding) will spend an average of about $145,000 in Medicare coverage during a life expectancy of twelve more years, having a functional limitation for nearly eight years of that time. Most Americans do not yet recognize the impact of these figures: even the healthy person at age seventy is in for many years of living with a disability, and length of life does not make much difference in the costs per person in Medicare. Yet since the use of institutional long-term care increases steeply with advancing age, the costs that Medicare does not cover will increase sharply with longer survival.

Most elderly people have accumulated some combination of arthritis, hearing or vision problems, dental decay or malfunction, painful feet, sluggish bowels, and urinary difficulties. Most people live for many years with such conditions, which worsen only gradually. Chronic conditions like these incur substantial costs, as well as symptoms and functional challenges; but they don't generally cause serious dependency or death.

An important group of chronic conditions, in contrast, regularly worsen and eventually cause death. Overwhelmingly, these are cancer, organ system failure (heart, lung, liver, or kidney, mostly), dementia, and stroke. Nine out of ten elderly who die covered by Medicare have one or more of these conditions in the year preceding death (Hogan et al. 2000). Most of us eventually get one or more of these conditions; however, at any one time, only a small proportion of people have these serious conditions, probably about one-quarter to one-third of the elderly (Lynn and Adamson 2003). Thus, both of these statements are true: most elderly are healthy, and virtually all Americans will have a substantial period of serious illness and disability before death.

Cognitive disability and frailty are rapidly becoming dominant elements of dying in old age, even though they are hard to track because these conditions are not reliably identified and recorded. Already, half of Americans who die past age eighty-five (and one-third of us live that long) have major memory loss as part of their final phase of life (Cornoni-Huntley et al. 1985). The proportion is lower at younger ages, though still commonplace. This cognitive loss can arise from Alzheimer's dementia, strokes, Parkinson's disease, and other syndromes. The course early on usually allows the person to be active, but lapses in judgment, memory, and self-control require constant supervision. Later on, the person often becomes unable to move about, use the toilet, or otherwise provide for self-care. From that time to the end of life, someone else must assist with every bodily function. The course usually lasts for years. Since cognitive loss is strongly correlated with age, as more of the population lives to old age, more will have cognitive deficits as part of the challenges posed.

Frailty is, in effect, the fragility of multiple body systems as their customary reserves diminish with age and disease. Instability when walking, problems with vision and hearing, loss of muscle strength, and lack of reserve in critical organ systems (heart and lung, especially) are typical elements (Fried et al. 2001; Gillick 2001). While people with substantial frailty may stay mentally capable, they still need help with daily activities and are at constant risk of major calamities like hip fractures, pneumonia, falls, strokes, and infections. Partly from outliving peers but also from incurring deficits in hearing and mobility, frail persons often become socially isolated and unhappy, especially if they have to leave familiar surroundings to move into nursing homes. Their spouses are often as old and frail, or already deceased, and their children are themselves getting old, so no family helper may be available or sufficient. Frailty is probably already a major pathway through the last part of life, but the standard classifications of illness do not provide for it and hence often misleadingly count persons with this general state of decline as having "heart failure" or some other specific manifestation.

Indeed, our coding and classifications are generally misleading for those with serious chronic conditions at the last phase of life. Most Americans have a number of years of good health in old age, but usually the accumulation of chronic conditions gradually causes progressive disabilities and limits the person's ability to overcome setbacks. Younger people have substantial reserves and can often overcome major illnesses, but old and frail people with chronic illnesses exist in a very fragile balance with the demands of their environment and often cannot withstand even small threats to that balance. Living with serious illness or frailty in old age is like walking on a high wire, and the cause of the final stumble and fall is mischaracterized when it is termed the "cause of death," since being out on the high wire itself is what makes the stumble lethal. Less metaphorically, being in a fragile state of health for a long time at the end of life is what makes colds, flu, pneumonia, falls, and other modest setbacks into common causes of death. We misunderstand the situation when we count the incidental cause as being lethal, when it is really the underlying frailty that allowed such a small setback to lead to death.

The high-wire metaphor illuminates the new importance of multiple coexisting serious illnesses and multiple competing causes of death. Some people will succumb to medical complications within a short time; others in a generally stable but fragile condition will evade fatal complications for a long time. Care that meets the needs of persons with serious, progressive chronic illness in the last phase of life will often have to be available to these individuals for many years. Some will use it that long, while others, who are no more seriously ill, will encounter their final complication and die much earlier. We cannot tell how long most people will have to live once they are living in a delicate balance with a fatal chronic condition.