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ABSTRACT
Patients with end-stage heart failure have a trajectory of illness characterized by an overall gradual decline in function punctuated by periods of symptom exacerbation followed by a return nearly to their baseline. These exacerbations are not predictable. Death may come suddenly and unexpectedly for each patient, even though predictive models can draw an accurate survival curve by averaging the experience of a substantial number of people with heart failure. Heart failure patients often have treatable symptoms, such as dyspnea, fatigue, and generalized pain. In this article, we explain the trajectory of patients with heart failure, illustrate the importance of advance care planning for these patients, discuss the impact of choices to use or forgo new technologies, and suggest ways to improve the care system. Only by reexamining our health care spending priorities can we create a sustainable care system that allows patients to live both long and comfortably, reaching a balance that serves them and their communities well.
HEART FAILURE HAS BECOME widespread in the United States, with an estimated 5 million people currently diagnosed and an additional 550,000 newly diagnosed each year (American Heart Association 2003). Despite advances in treatment, heart failure remains a chronic, progressive, eventually fatal illness. In this article we discuss the trajectory of the disease and its care needs, along with the impact of recent innovations in technology on patients' end-of-life care.
TRAJECTORY OF HEART FAIUURE
Society's stereotype of dying originates in the trajectory of most patients with cancer-a long period of good function, followed by a relatively short period of losing weight, taking to bed, and dying "on time." With the classic course of cancer, the average patient is usually still functioning well just two months before death. Once the cancer becomes overwhelming, the losses in function and wellbeing are obvious each week, and death becomes fairly predictable (Figure 1). This is the model which gave rise to hospice (Lunney, Lynn, and Hogan 2002; Lunney et al. 2003).
Patients with heart failure have a very different course at the end of life. Unlike patients with cancer, these patients have long-term limitations on function with intermittent exacerbations, each one met by rescue treatment and often followed by a return to nearly the prior functional status (Lunney, Lynn, and...