More than 90 million Americans live with at least one chronic illness, and seven out of ten Americans die from chronic disease. Among the Medicare population, the toll is even greater: about nine out of ten deaths are associated with just nine chronic illnesses, including congestive heart failure, chronic lung disease, cancer, coronary artery disease, renal failure, peripheral vascular disease, diabetes, chronic liver disease, and dementia. Patients with chronic illness in their last two years of life account for about 32% of total Medicare spending, much of it going toward physician and hospital fees associated with repeated hospitalizations.
What do patients want at the end of life? Do they want their physicians to do everything possible to extend life? Do they want more time in the hospital? If additional treatments offer little possibility of benefit, do they want more invasive care? Research suggests that the care they get is not necessarily the care they want. Evidence comes from a large-scale study funded by the Robert Wood Johnson Foundation. Most patients with serious illness said they would prefer to die at home. Yet most patients died in the hospitals, and care was rarely aligned with their reported preferences, even though extensive efforts were made by trained nurses to align their care with their wishes. For example, among the patients who indicated that they preferred to die at home, the majority -- 55% -- actually died in the hospital. The evidence therefore suggests that patients often prefer a more conservative pattern of end-of-life care than they actually receive -- and that a patient’s wishes can be less influential than the practice patterns at the hospital where care is delivered.
People with severe chronic illness who live in communities where they receive more intensive inpatient care do not have improved survival, better quality of life, or better access to care than patients who live in communities where they receive less care. Patients’ experience of care, however, differs dramatically; they receive a much more aggressive brand of medicine, seeing medical specialists more frequently, spending more days in the hospital, and dying in an ICU more often than those in lower intensity regions. These findings underscore the importance of innovative approaches to care that help ensure that patients and their families engage in discussions of their preferences before they become seriously ill and that providers respect these preferences.