Frequent complications in patients with advanced dementia include pneumonia, febrile episodes, and eating problems and are associated with high six-month mortality rates, according to an article in the October 15 New England Journal of Medicine. Patients whose healthcare proxies understand the clinical complications of dementia are less likely to undergo a burdensome intervention in the last three months of life (adjusted odds ratio, 0.12).
Susan L. Mitchell, MD, MPH, Senior Scientist at the Institute for Aging Research, Harvard Medical School, in Boston, and colleagues followed 323 nursing home residents (mean age, 85.3; 85.4% women) with advanced dementia, and their healthcare proxies, for 18 months in 22 nursing homes. Data regarding survival, clinical complications, symptoms, and treatments were collected. The investigators also assessed the proxies’ understanding of the residents’ prognosis and expected clinical complications.
“More than half of the 323 residents (n = 177, 54.8%) died over the 18-month course of the study,” Dr. Mitchell’s group stated. “The adjusted median survival was 478 days, and the probability of death within six months was 24.7%. Most of the deaths occurred in the nursing home (93.8%).”
The probability of at least one episode of pneumonia during the study period was 41.1%; for a febrile episode the probability was 52.6%, and for an eating problem, it was 85.8%. Adjusted six-month mortality rates after development of each complication were 46.7%, 44.5%, and 38.6%, respectively.
“In each case, these rates were substantially higher than the mortality rates for residents in whom such complications had not developed at the time of the assessment and for those in whom they never developed,” Dr. Mitchell and coauthors commented.
Among those who died, 37.3% had pneumonia in the last three months of life; 32.2% had febrile episodes, and 90.4% had eating problems.
Forty-two sentinel events occurred in 31 (9.6%) residents; seizures accounted for 14 (33.3%), gastrointestinal bleeding for 11 (26.2%), hip fractures for three (7.1%), other bone fractures for four (9.5%), stroke for three (7.1%), pulmonary embolus for one (2.3%), and other events for five (11.9%). Sentinel events precipitated death in seven cases.
Intervention Strategies
Parenteral therapy was used to treat 34.4% of the residents during follow-up; 16.7% were hospitalized, 9.6% were taken to the emergency room, and 8.0% were tube-fed. Of those who died, 52 (29.4%) received parenteral therapy, 22 (12.4%) were hospitalized, five (2.8%) were taken to the emergency room, 13 (7.3%) were tube-fed, and 72 (40.7%) underwent any one of these interventions during the last three months of life.
“The most common reason for the 22 hospitalizations was pneumonia, which accounted for 15 (68.2%), followed by other infections, accounting for three (13.6%); heart failure, two (9.1%); hip fracture, one (4.5%); and dehydration, one (4.5%),” the investigators noted.
Seventy-two (22.3%) residents were referred to hospice care during follow-up. Of those who died, 53 (29.9%) received hospice referrals, which occurred at the following times before death: up to seven days, 26.4%; eight to 90 days, 30.2%; 91 to 180 days, 17.0%; and more than 181 days, 26.4%.
Proxies' Perception
For 96.0% of proxies, comfort was the primary goal of care. However, discomfort was common among residents; patients with dementia who are dying often receive aggressive treatment, such as tube feeding or hospitalization for pneumonia. These treatments are of limited benefit and inconsistent with a palliative approach to care, noted the authors.
At the last assessment, 20.0% of proxies believed that the resident they cared for had less than six months to live. “Only 18.0% of healthcare proxies stated that they received prognostic information from a physician,” Dr. Mitchell’s group stated. “Whereas 81.4% of the proxies felt they understood which clinical complications to expect in advanced dementia, only 32.5% stated that a physician had counseled them about these complications.” Receipt of physician counseling was not associated with the likelihood of interventions.
“Patients who believe the end of life is near and who have a realistic understanding of the clinical problems characterizing terminal disease are more likely to receive care directed toward comfort,” the researchers stated. “Our findings show that these observations extend to heathcare proxies for nursing home residents with advanced dementia.”
Palliative and Hospice Care
In a related editorial, Greg A. Sachs, MD, Professor of Medicine and Chief of the Division of General Internal Medicine and Geriatrics at Indiana University in Indianapolis, wrote, “Palliative and hospice care could greatly improve the care of patients with advanced dementia—and perhaps simultaneously reduce the cost of care.
“Hospice care in nursing homes during the last 30 days of life has been associated with a reduction in hospitalization of almost 50%, and with improvements in pain assessment and management.