The final months of advanced dementia are marked by “distressing symptoms and burdensome interventions,” investigators concluded in the first systematic, prospective investigation of the disease’s late-stage clinical course.
Among 323 patients with advanced dementia in nearly two dozen nursing homes who were followed for 18 months, more than 40% developed pneumonia, while half had at least one febrile episode, and 85% suffered eating problems, according to Susan L. Mitchell, MD, MPH, of the Hebrew Senior Life Institute for Aging Research in Boston, and colleagues.
Some 55% of the sample died during follow-up, the researchers reported in the Oct. 14New England Journal of Medicine. Most suffered from Alzheimer’s.
During their final three months of life, 41% of dying patients underwent at least one intensive intervention, such as hospitalization, transport to an emergency room, tube feeding, or parenteral treatment.
“Patients, families, and health care providers must understand and be prepared to confront the end stage of this disease, which is estimated to afflict more than 5 million Americans currently and is expected to afflict more than 13 million by 2050,” Mitchell and colleagues wrote.
They also found that when patients’ surrogates and guardians understood the expected clinical course, burdensome interventions were much less likely during the final three months of life (adjusted odds ratio 0.12, 95% CI 0.04 to 0.37), relative to proxies with poor understanding.
In an accompanying editorial, Greg A. Sachs, MD, of Indiana University School of Medicine in Indianapolis, said the study “moves the field forward in major ways with respect to both prognosis and the terminal nature of advanced dementia.”
Not only should clinicians, nursing home staff, and patients’ families be aware of the study results, Sachs suggested, but so should Congress and the government’s major health agencies.
“Much more research is needed on the use of palliative care for these patients, including studies on prognosis, patients in less advanced stages of dementia, alternative care settings, intervention trials, and, eventually, the effects of implementing programs designed to improve current systems of care,” he wrote.
The study focused on nursing home patients in the Boston area who could no longer recognize family members or walk independently.
About 72% had scores of zero on the Test for Severe Impairment, and the mean scores on the Bedford Alzheimer’s Nursing Severity subscale was 21.0 (SD 2.3). The mean age of the group was 85, and patients had been in nursing home care for a median of three years.
Dementia was related to vascular insufficiency in 17% of the patients and to Alzheimer’s disease in 72%. Symptoms in the remainder had other causes.
Patients underwent exams every three months. Caregivers and guardians or other surrogate decision-makers were also interviewed regularly.
In particular, each guardian or surrogate was asked whether he or she thought the patient would survive another six months. Also, at study baseline they were asked whether they understood the general clinical complications that might be expected in advanced dementia and whether they had discussed these issues with a nursing home physician.
Median patient survival was 478 days, Mitchell and colleagues reported. They calculated the following probabilities of complications:
- Pneumonia: 41.1%
- Febrile episode: 52.6%
- Eating problems: 85.8%
Patients developing these problems had relatively high mortality rates in the following six months: 46.7% after a bout of pneumonia, 44.5% after a fever, and 38.6% after eating problems began.
On the other hand, patients who could eat normally were very unlikely to die. Only about 10% of these patients died during the entire follow-up period, compared with about 70% of those who developed eating problems at some point.
Other sentinel events included 14 cases of seizure, 11 gastrointestinal bleeds, and seven hip or other bone fractures. But only seven of the 42 sentinel events occurred during the last three months of life for those who died during follow-up.
Symptoms causing acute distress were also common in the study. From 40% to 45% of patients suffered one or more of the following: dyspnea or pain for at least five days per month, pressure ulcers at stage II or higher, and aspiration. Nearly 54% experienced periods of agitation, the researchers found.
Among the entire study sample, about one-third received parenteral therapy, while 17% were admitted to a hospital, 10% had an emergency room visit, and 8% were tube-fed.
Pneumonia accounted for more than two-thirds of the hospitalizations, Mitchell and colleagues said.
Only 30% of those who died during follow-up had been referred to hospice care, and 22% of the overall sample.
The interviews with surrogates and guardians showed that 96% believed that comfort was the primary goal of therapy. Less than 20% said a nursing home physician had discussed prognosis with them.
About 80% indicated that they understood the medical complications likely to occur, but only 33% said they had discussed them with a physician.
Mitchell and colleagues noted that most of these findings had been observed in previous studies, but those were either retrospective or cross-sectional analyses or had focused on hospitalized patients. “The clinical course of advanced dementia has not been described in a rigorous, prospective manner,” they said, prompting their study.
They said their results “can be used to inform families and care providers that infections and eating problems should be expected and that their occurrence often indicates that the end of life is near.”
They added, “Families and providers should also understand that although these complications may be harbingers or even precipitants of death, as they are in other terminal diseases (e.g., the acquired immunodeficiency syndrome, cancer, and emphysema), it is the major illness, in this case dementia, that is the underlying cause of death.”
In his editorial, Sachs said it was important that clinicians and patients’ families approach advanced dementia “as a terminal illness requiring palliative care.” He argued that these patients should qualify for hospice care whether or not they have other serious illnesses.
He also criticized moves by the government to restrict hospice care in nursing homes. “Although no one can argue against the need to root out fraud and unseemly conflicts of interest, it would be a shame to take hospice away from patients with dementia, who could truly benefit from it,” Sachs wrote.
Mitchell and colleagues noted that their study was limited by its narrow geographic focus and its reliance on charts and nursing reports for some data. They also emphasized that their reported survival times do not represent survival from onset of advanced dementia.
They also noted, “We can report only the associations between the health care proxies’ perceptions of prognosis and of the complications expected and the use or nonuse of aggressive interventions — we cannot draw conclusions about cause and effect.”