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Hinda and Arthur Marcus Institute for Aging Research Study Finds Understanding End-Stage Dementia Improves End-of-Life Care

Nursing home residents with end-stage dementia whose health care proxies understand the clinical course of the disease are less likely to be treated aggressively near the end of life and more likely to receive comfort care, according to researchers at the Hinda and Arthur Marcus Institute for Aging of Hebrew SeniorLife, affiliated with Harvard Medical School.

The study, published in the October 15 issue of The New England Journal of Medicine, is one of the first to describe the clinical course of advanced dementia, a leading cause of death in the United States, but often under-recognized as a terminal illness.

“Many of the residents in our study underwent burdensome interventions of questionable benefit in the last three months of their lives,” says lead author Susan L. Mitchell, M.D., M.P.H., a senior scientist at the Marcus Institute. “However, when their health care proxies were aware of the poor diagnosis and expected clinical complications of advanced dementia, residents were less likely to undergo these interventions and instead received comfort care.

Often patients with dementia who are dying receive aggressive treatments, even though they are of limited benefit and not in line with a palliative approach to care, says Dr. Mitchell. She adds, however, that patients who know the end of life is near and have a realistic understanding of the clinical problems associated with terminal illness are more likely to receive comfort care. ”

In a review of 323 nursing home residents with advanced dementia, Dr. Mitchell and her team found that nearly 41 percent of the residents underwent at least one burdensome intervention in the last three months of life, including hospitalization, an emergency room visit, or tube feeding. Many of these residents suffered from such complications as pneumonia, infections, fevers and eating problems, as well as distressing symptoms, including pain, pressure ulcers, shortness of breath, and aspiration, that increased as the end of life approached.

Nearly 96 percent of the residents’ health care proxies believed that comfort care was the primary goal of care for their loved one. More than 81 percent of the proxies understood which clinical complications to expect; however, only one third said that a physician had counseled them about these complications.

“Understanding the prognosis and expected complications  reduces the likelihood that nursing home residents with dementia who are nearing the end of life will undergo potentially burdensome interventions of unclear benefit,” the researchers write. The study also underscores the need to improve the quality of palliative care in nursing homes in order to reduce the physical suffering of residents with advanced dementia who are dying.

Data were obtained from the Marcus Institute’s Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, a large, prospective study that follows the clinical course of nursing home residents with advanced dementia at end of life, describes how decisions are made for these patients, assesses families’ satisfaction with end-of-life care, and identifies factors associated with a family’s grief and the best way to support them.

Currently, more than 5 million Americans suffer from dementia, a number that is expected to more than double in the next 40 years. Dementia is a group of symptoms, including memory loss, difficulty communicating, personality change, and an inability to reason, severe enough to interfere with daily functioning. Alzheimer’s disease is the most common form of dementia.

Previous studies suggest that patients with advanced dementia are under-recognized as being at high risk of death and receive suboptimal palliative care. Dr. Mitchell and her colleagues say that a lack of information about the final stages of dementia may impede the quality of care these patients receive.

“A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition,” says Dr. Mitchell. “This knowledge will help to give health care providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches.”