Many people with Alzheimer’s disease don’t receive the hospice services they need because these programs are reserved for people with less than 6 months to live. A new prognostic model could make it easier for these patients to get quality end-of-life care.
Despite some small advances in treatment, Alzheimer’s disease remains a terminal illness. As such, its victims would often benefit from the professional end-of-life care that hospices offer. But to be eligible for those services under Medicare, a person must have only a 6-month life expectancy. Unfortunately, predicting the life span of someone with advanced dementia has remained problematic. The arc of the disease is not as clear-cut as in, for example, congestive heart failure, says William Thies, vice president of medical and scientific affairs for the Alzheimer’s Association in Chicago. This difficulty has hampered Alzheimer’s sufferers from gaining access to the palliative care hospices provide.
A study that appeared last month in the Journal of the American Medical Association could offer a solution to the problem. Geriatrician Susan Mitchell of the Hebrew Rehabilitation Center for Aged in Boston and her colleagues have developed a tool for predicting how long people with advanced dementia will live. Mitchell’s model is based on 12 risk factors, such as cancer, a need for oxygen therapy, and being older than 83. The more factors the patients had, the greater their chance of dying within 6 months.
Even with this new tool, figuring out when a patient is going to die still remains “more of an art than a science,” says Stephen Connor, vice president for research and development at the National Hospice and Palliative Care Organization in Alexandria, Virginia. Nevertheless, Mitchell’s approach, which relies on precise and easily obtainable data, has proven more accurate in estimating 6-month mortality than current guidelines for assessing hospice eligibility for dementia patients, which are based more on expert opinion.
“This is important information for families, health care providers, and policymakers,” says Evan Hadley, associate director of the National Institute on Aging in Bethesda, Maryland, which cofunded the research. “Being able to estimate how long someone with Alzheimer’s may live is difficult emotionally and practically, but it is important to consider it if we want to optimize care for these patients.”
Mitchell’s study also stands to benefit family members — by giving them access to the support and counseling services hospices offer, says Naomi Naierman, president and CEO of the American Hospice Foundation in Washington, D.C. And knowing when someone is likely to die allows for end-of-life planning, in which all involved can prepare emotionally, spiritually, and financially. The information could also help physicians better treat those patients, allowing them to concentrate on providing palliative care to ensure comfort rather than pursuing aggressive treatment.
Connor hopes to work with Mitchell to develop new guidelines that could be presented to Medicare that would result “in more and more-appropriate access to hospice care for people with Alzheimer’s.” As for Mitchell, she says she doesn’t think that the 6-month life span should be used to determine who receives hospice care in the first place: “Palliative care should be available to all patients with advanced dementia who want it, regardless of their life expectancy.” Until improved treatments for Alzheimer’s disease are developed, making more sufferers comfortable might be a huge innovation in itself.