The New Old Age - Caring and Coping
November 2, 2010, 12:29 pm
End-of-Life Care for Patients With Advanced Dementia
By PAULA SPAN

It’s hard for physicians to determine with much precision how long anyone with a terminal disease can expect to live, but it’s particularly challenging when the disease is advanced dementia.

“People with dementia get sicker inch by inch,” said Lin Simon, director of quality at Gilchrist Hospice in Baltimore, the largest hospice organization in Maryland. “Trying to say, ‘Now, she’s ready for hospice’ is much harder.”

Yet doctors serve as the gateway to hospice, which provides palliative care for the dying and support for their families. Medicare regulations require a physician to certify that a patient entering hospice is likely to die of his or her disease within six months. Doctors are more likely to do so when the disease is cancer or heart failure, which have more predictable trajectories.

That’s the major reason that dementia patients — who can benefit from the better pain control, fewer hospitalizations (so often associated with aggressive treatments that confer no measurable benefit) and greater family satisfaction that hospice has been shown to provide — are under-enrolled in hospice programs.

Only 11 percent of Americans who died in hospice care last year had a primary diagnosis of dementia, according to statistics from the National Hospice and Palliative Care Organization — up from 7 percent eight years earlier, but still a small proportion given the country’s galloping rates of dementia.

In fact, a 2004 study in The Journal of General Internal Medicine estimated that fewer than one in 10 people dying of dementia receives hospice services. A study of Michigan patients with advanced dementia, conducted about a decade ago, found that just 5.7 percent of nursing home residents and 10.7 percent of those receiving home care died with hospice care.

Nationally, by way of comparison, more than 40 percent of Americans who die each year are in hospice care.

When people with advanced dementia do get a hospice referral, “they’re enrolled quite late, within a few weeks or even days of death,” said Dr. Susan Mitchell, a senior scientist at the Hebrew Senior Life Institute for Aging Research in Boston.

Better prognoses might mean less suffering. The Michigan study, which Dr. Mitchell led, discovered that those dying with dementia frequently endured pain and shortness of breath, along with hospital stints, whether at home or in nursing facilities.

So Dr. Mitchell and a team of researchers recently set out to explore this important question: Is there a more accurate way to estimate how long someone with advanced dementia might live? (Those in the mild or moderate stage aren’t eligible for, and probably don’t yet need, hospice.)

In a study of more than 600 Boston-area nursing home residents, published online Tuesday in The Journal of the American Medical Association, Dr. Mitchell and her colleagues reached an interesting conclusion: no. There really isn’t a satisfactory way to identify which patients with advanced dementia are likely to die within six months.

The team tested two prognostic tools. It road-tested the current hospice eligibility guidelines for predicting life expectancy, which for advanced dementia include complete dependence on others for daily activities, incontinence, near-total inability to communicate and one of several medical conditions, such as pneumonia or bedsores, in the past year.

When the researchers looked at how many of these patients died within six months, they concluded that current guidelines amount to a crapshoot. They correctly identified which patients would die just 55 percent of the time, barely better than chance.

The researchers also developed their own tool, using a broader set of criteria including weight loss, shortness of breath and being bedridden, all based on “very rigorous statistical models,” Dr. Mitchell said. With their assessment, called A.D.E.P.T., “We did somewhat better, but we clearly weren’t perfect,” she said. A.D.E.P.T. could predict six-month mortality 67 percent of the time, which is to say that it failed a third of the time.

So how to fix the problem of dementia patients being denied hospice care because doctors can’t identify those likely to die within six months? Hospice patients who outlive the six-month period can be recertified for additional 60-day periods — it’s not unheard of to receive hospice services for a year or longer — but clearly most dementia patients aren’t entering hospice in the first place.

Dr. Mitchell’s suggestion is to scrap the whole certification system for dementia patients, to allow them access to palliative care, or “comfort care,” without regard to their expected lifespans, since there’s no accurate way to estimate them.

Her message to Medicare: “If comfort care is the goal, patients should be able to access that whether they live a month or two months or six months.”

“I certainly would agree,” said Ms. Simon, a former executive at the National Hospice and Palliative Care Organization. “We put arbitrary fences around when people can get into hospice.”

While we wait — possibly a long time — to see whether the federal Centers for Medicare and Medicaid Services rethinks eligibility standards, family caregivers can take on this issue. Even with more predictable diseases, physicians may hesitate to recommend hospice, fearing that family members will think they’re giving up on their patients. Often, families don’t raise the question, either.

In fact, Dr. Mitchell’s past work shows that frequently families don’t recognize dementia as a terminal disease. “People see it as solely a disease of the brain, not something that affects the whole body and that people die from,” she said.

But dementia does kill, and caregivers can request better end of life care for people with severe dementia by asking some tough but crucial questions:

“Is this hospitalization really necessary?”

“Will this procedure increase his comfort?”

“Is she a candidate for hospice care?”

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”