How to determine eligibility in Alzheimer’s
Guidelines offer some help
Defining a terminal prognosis of six months or less to live, as required for a hospice admission, is one of the biggest barriers to enlarging the role of hospice in Alzheimer’s care. These patients have been gradually declining for many years, and there many not be an obvious transition point or dramatic changes in their condition that would signal the need to consider hospice care. (For further discussion of the role of hospice in Alzheimer’s care, see cover story.)
However, Medical Guidelines for Determin ing Prognosis in Selected Non-Cancer Diseases, Second Edition, developed by the National Hospice Organization (NHO) in Arlington, VA, provides a good starting point in qualifying Alzheimer’s patients for the Medicare hospice benefit. Meanwhile, research is under way that should bring additional clarity in this area — at least until legislative changes are made in hospice’s six-months-or-less requirement.
David Lindeman, PhD, of the Rush Institute for Healthy Aging at Rush-Presbyterian-St. Luke’s Medical Center in Chicago is coprincipal investigator of a new project that will study 1,500 Alzheimer’s patients residing at 60 nursing homes nationwide. The goal is to develop a more refined model for estimating six-month survival rates. He hopes the research will "capture all clinical as well as policy-related data to not only identify if it’s possible to create a model for estimating six-month survival rates, but also to make recommendations for providers and for family members on how to make informed decisions."
Ladislav Volicer, MD, PhD, and colleagues at the E.N. Rogers Memorial Veterans Hospital in Bedford, MA, also are studying the issue with funding from the Alzheimer’s Association, with the goal of developing recommendations for policy changes in this area. But he urges hospices not to shy away from Alzheimer’s because "they can provide a lot of useful services within the current benefit."
NHO’s medical guidelines for determining a terminal prognosis in chronic Alzheimer’s or multi-infarct (stroke) dementias — as opposed to acute, potentially reversible dementias — start with functional status and the use of tools such as the Reisberg Functional Assessment Staging (FAST). Other such scales include the Karnofsky Performance Status Scale and the Global Deterioration Scale. According to NHO guidelines, an appropriate Alzheimer’s patient for hospice would show all of the following characteristics:
• inability to ambulate without assistance;
• inability to dress without assistance;
• inability to bathe properly;
• urinary and fecal incontinence;
• inability to speak or communicate meaningfully, using more than six different intelligible words.
The first of these factors is the most critical one, according to the research, although a recent study suggests that the fifth trait, loss of meaningful communication, also is a key indicator of end-stage status. Other critical factors include difficulty in swallowing food or refusal to eat, and the presence of comorbid medical complications such as aspiration pneumonia, upper urinary tract infection, septicemia, or decubitus ulcers.
Can patient walk and talk?
Taken as a whole, the criteria suggest that appropriate hospice candidates with Alzheimer’s disease will have lost the ability to walk and talk while comorbid conditions are starting to appear, says Brad Stuart, MD, hospice medical director for Home Hospice, a program of VNA and Hospice of Northern California in Emeryville and a primary author of the NHO guidelines. If more evidence is needed, Stuart suggests looking to elements of rapid decline in functional status. (For further discussion of six-month determination, see Hospice Management Advisor, October 1998, p. 119.)
The NHO guidelines and the Medicare local medical review policies based on them "have been criticized for being insensitive, and that criticism is valid," Stuart says. "If you use the standard of not walking and talking and the presence of medical complications, few patients will survive six months. But that standard leaves out many Alzheimer’s patients" who will die within six months. The more experience hospices have using the criteria on these patients, the better they well get at applying them, he adds.
"Hospices are reluctant to admit these patients if they think they might have to discharge them in the future" when they no longer appear to fit the criteria, observes Paul Brenner, MDiv, coordinator of Jacob Perlow Hospice in New York City. "For most hospices, that’s not OK. This is also not a time when they want to be taking risks, but in today’s regulatory environment, it has to be OK."
Use of the NHO criteria need not be terribly difficult, says Pat Whitney, RN, MBA, director of St. Margaret’s Hospice in Spring Valley, IL. "But if these criteria are in place, why aren’t people putting their loved one into hospice? They’ve been taking care of their loved one for years, struggling on their own. By the time they get to the end, unless someone comes in and says, Hey, here’s something that could really help,’ they don’t know."