Sick To Death > Chapter 2 > Frequency of Trajectories

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.

Frequency of Trajectories

Analyses of Medicare claims show that about one-fifth of those who die appear to have a disease likely to cause the first trajectory (a short decline in the last phase of life, mostly cancer), about one-fifth have illnesses associated with the second trajectory (sudden death in chronic organ system failure, mostly heart and lung), and about two-fifths have evidence of a dwindling frailty course (figure 6). The rest are split between those with very low expenses before death, indicating a likely sudden demise (and also includes those getting services outside Medicare, mostly veterans) and a small group we have not yet learned to classify from claims (Lunney, Lynn, and Hogan 2002). The groups' proportions are roughly consistent with data from after-death interviews with families (Lunney et al. 2003).

Figure 6. Major medical conditions before death, for 
Medicare beneficiaries.

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Figure 6. Major medical conditions before death, for Medicare beneficiaries. Source: Lunney, Lynn, and Hogan 2002.

Some diagnoses may include patients who follow all three trajectories. For instance, strokes can mark the onset of frailty and slow demise - but sometimes multiple strokes and complications yield a course more like organ system failure; or one devastating stroke kills the patient over a few weeks, just as cancer can. Some types of cancer, such as prostate cancer in the elderly, yield symptoms and time course that mimic frailty. AIDS may evidence terminal cancer, intermittent infections and sudden dying, or slow dementing illness.

Needs for care arise as disabilities and symptoms emerge; the service array should be based more on these needs than on diagnosis and prognosis. Categories designed to mesh with the likely time course of disability and suffering present a useful model for improving care. Hence, reform strategies based on these three major trajectories may be easier to envision, and more practical to accomplish, than strategies aimed at customizing a care system for every combination of illness(es) and site of care. Indeed, a quality-improvement project in Jönköping, Sweden, has adopted this model and is using it to learn how to serve the prototypical person in each of the three trajectories ( 2003). Their claim is that if three paradigm patients - one with heart failure, one with colon cancer, and one with dementia (each named "Esther") - could all count on good care, then virtually everyone could count on good care. Thus, they are building a care system that delivers for all three.

The services that would match each trajectory have important common characteristics as well as differences (table 2). Clearly, every person coming to the end of his or her life needs to be confident of being comfortable, comforted, and in control of those elements of the experience that anyone can control. Those with rapidly declining clinical status in the first trajectory match the intensive but generally short-term services of hospice programs serving patients dying at home. Those with long- term chronic illnesses marked by periodic dramatic exacerbations need the self-care education, home-care support, medication management, and advance care planning that could constitute comprehensive disease management programs. Those with frailty and dementia and a long slow decline need respite for family caregivers, environmental accommodation for safety and ease of use, help with tasks of daily living, and eventually direct help with bathing and feeding. So care for those with serious, eventually fatal chronic illness could always include advance care planning and symptom management, while many other professional services would be customized to match the likely needs for each trajectory.

The proportion of people in each trajectory will shift with medical advances and lifestyle changes. As people reduce smoking and otherwise prevent lethal cancer, more people will live long enough to develop vascular and heart disease. To the extent that prevention (through diet, medications, and exercise) is effective for heart disease, more people will live long enough to encounter dementia and frailty. Dying from cancer tends to peak around seventy years of age, and heart and lung disease about a decade later. Most people who survive past eighty-five eventually need daily care and accumulate evidence of multisystem lack of reserves. Thus, to the extent that prevention and early treatment are successful, more Americans are likely to live their last years with frailty and dementia.

Table 2. Priority care needs for the three illness trajectories

For short period of evident decline (mostly cancer)

For chronic illness with intermittent exacerbations and sudden dying (mostly organ system failure)

For slow dwindling (mostly frailty and dementia)

Recent reports suggest a modest diminution of serious disability in old age (Crimmins, Saito, and Reynolds 1997; Manton, Corder, and Stallard 1997; Manton and Gu 2001), but this cannot mean major changes in the overall care needs of the elderly. Better geriatric care might be able to provide rehabilitation and environmental changes that enable people to care for themselves for longer periods. In addition, the disabilities of arthritis, hearing and vision deficits, and dentition problems may be amenable to prevention and amelioration. However, since general frailty is the most common course to death in advanced old age, patients regularly experience years of serious disability before dying.

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