Dementia Is a Terminal Illness, But Palliative Care Often Poor

Susan Jeffrey

October 16, 2009

October 16, 2009 — A new study looking at the natural history of dementia into its end stages finds high rates of complications, high 6-month mortality rates, and a high number of distressing symptoms and aggressive interventions of questionable benefit.

However, when family members understood the poor prognosis and clinical course of dementia, patients were far less likely to undergo such burdensome interventions, said lead author Susan L. Mitchell, MD, MPH, a senior scientist at the Hebrew SeniorLife Institute for Aging Research and associate professor of medicine at Harvard Medical School, Boston, Massachusetts.

"I think the study really underscores and calls for, number 1, improved communication, so family members are aware of the expected complications and poor prognosis of advanced dementia so they can make appropriate advanced care plans and informed decision making," Dr. Mitchell told Medscape Neurology, "and then secondly, the need for improved palliative care, particularly with expert symptom management, both through greater access to hospice, as well as improved skilled nursing home services."

Their report was published in the October 15 issue of the New England Journal of Medicine.

A Terminal Illness

A growing number of Americans are dying with dementia, the authors write, but dementia is underrecognized as a terminal illness. Previous studies suggest that patients with advanced dementia are not viewed as being at high risk for death and receive suboptimal palliative care. Current understanding of the course of end-stage dementia comes from retrospective or cross-sectional studies, or studies in hospitalized patients, the authors write, not studied in a "rigorous prospective manner" in nursing home residents.

Data for this analysis came from the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, a prospective cohort study of nursing home residents and their families, or "healthcare proxies," funded by the National Institutes of Health.

The researchers followed-up 323 residents with advanced dementia in 22 nursing homes along with their proxies during 18 months. Data were collected on the residents' survival, clinical complications, symptoms, and any treatments given.

Proxies were also asked about their understanding of the residents' prognosis and the clinical complications that might be expected in patients with advanced dementia. Advanced dementia was characterized as memory loss, such that the patient could not remember family members; speaking with fewer than 6 words; and being bed-bound, incontinent, and totally dependent on others, Dr. Mitchell noted.

During 18 months, more than half of the residents died — a total of 177 patients, or 54.8%. The adjusted median survival was 478 days, and the probability of death within 6 months was 24.7%. Infections, pneumonia, and eating problems were frequent, she said, "and these eating problems and fevers and infections really heralded the final stage of life."

Probability of Symptoms and 6-Month Associated Mortality in Advanced Dementia

Symptom Probability (%) 6-Month Associated Mortality Rate (%)
Pneumonia 41.1 46.7
Febrile episode 52.6 44.5
Eating problem 85.8 38.6

Many of these patients had distressing symptoms and underwent burdensome interventions as they approached the end of life, Dr. Mitchell noted. For example, 46% had dyspnea, and about 40% had pain, "really not unlike the pattern one would see in cancer patients," she said. About 40% had had aggressive interventions to deal with these problems, such as insertion of a feeding tube, hospitalization, or use of intravenous therapy.

The presence of distressing symptoms and burdensome interventions of limited benefit are "2 things that are not really indicative of high-quality palliative care," she said.

However, when family members understood the poor prognosis and clinical course of end-stage dementia, patients were far less likely to undergo aggressive intervention, Dr. Mitchell added. "For example, if the family felt they both understood the clinical complications that were expected and the poor prognosis, 27% of those patients got a burdensome intervention in the last 90 days of life, compared to 73% of those patients whose family members didn't understand either of those things."

"It really comes down to what the goals of care are," she added. When it becomes clear to families that these patients have a poor prognosis, and they understand the types of complications the patients will face near the end, most want the goal of care to be comfort for the patient, she explained. Families can then take the different problems that arise and consider the treatment options, whether they be palliative or aggressive, and decide which one is going to promote that goal of comfort for the patient, Dr. Mitchell said.

"I think as soon as the preferences turn toward comfort with an understanding of where these folks are in the end stage of the disease, that's when you can comfortably stop doing some of those things that don't promote comfort," Dr. Mitchell concluded.

Hospice Care for Advanced Dementia

In an accompanying editorial, Greg A. Sachs, MD, from the Indiana University Center for Aging Research in Indianapolis, points out that despite the benefits of hospice care in reducing hospitalizations and psychiatric symptoms, and increasing family satisfaction with care during final illness, patients with advanced dementia are referred to hospice care at rates far lower than patients who are dying from cancer.

Barriers to hospice care for these patients include difficulties in estimating prognosis and failure to recognize dementia as a terminal illness that requires palliative care, he notes. "Fortunately," he writes, this study by Dr. Mitchell and colleagues, "moves the field forward in major ways with regard to both prognosis and the terminal nature of advanced dementia."

Other audiences for this article should be the policymakers and funders of research, such as the National Institutes of Health, Dr. Sachs notes. "Congress, the Centers for Medicare and Medicaid Services, and the Office of Inspector General are looking at revising hospice reimbursement, raising concerns about the provision of 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."

These results, along with future research on prognosis, patients in earlier stages of dementia, and comparative studies looking at palliative vs usual care, could inform public policy, he concludes.

The study was supported by the National Institute on Aging and by a Midcareer Award in Patient-Oriented Research from the institute to Dr. Mitchell. The authors have disclosed no relevant financial relationships. Dr. Sachs has reported receiving consulting fees from CVS Caremark and serving on the board of directors of the American Geriatrics Society and the Academic Task Force of the American Academy of Hospice and Palliative Medicine.

N Engl J Med. 2009;361:1529–1538, 1595–1596. Abstract Abstract