Alzheimer’s population creates hospice dilemma
Too little, too late most often the case for elderly
The elderly couple in their mid-60s looked forward to a long and fruitful retirement together. But the husband’s diagnosis of Alzheimer’s disease put an end to that dream and left his wife to tend to his declining health. Increasingly overwhelmed by his mental deterioration and physical needs, she sought help and was steered toward adult day care. But staff there couldn’t handle his violent outbursts and turned them away.
After months of desperately searching for help, the wife finally was directed toward hospice, where her husband died within six months of admission.
That couple’s battle with Alzheimer’s is not unique four million Americans have the disease but receiving help from hospice is unique because of misconceptions and fears about the disease.
Place in hospice murky
According to the Arlington, VA-based National Hospice Organization (NHO), only about 1% of America’s hospice population are Alzheimer’s patients. Although the NHO issued standards for determining six-month life expectancy last year aimed at clarifying the disease’s terminal stage, Alzheimer’s patients still do not receive the care that they could from hospice and often arrive within days of dying, many experts say.
Despite the attention Alzheimer’s receives in the media, with clearly escalating numbers and interest among researchers, its place in hospice remains murky, and many hospice administrators admit they are unsure how to handle Alzheimer’s admissions. "I don’t think anybody really feels comfortable dealing with it. It doesn’t seem to have such a preset course. It’s hard to identify when there are acute changes and what those changes mean," says Bonnie Kosman, MSN, RN, CS, CDE, director, Lehigh Valley Hospice in Allentown, PA, echoing the thoughts of many of her peers.
Alzheimer’s patients are "not a population that has traditionally been served by hospice," adds Patricia Hanrahan, PhD, associate professor at the University of Chicago department of psychiatry. "There is still some question about whether the patient is going to die on time [within the six months Medicare and Medicaid stipulate]." Hanrahan, along with Daniel Luchins, PhD, associate professor also at the University of Chicago department of psychiatry, has studied Alzheimer’s impact on patients’ families.
One of the biggest obstacles to Alzheimer’s patients benefitting from hospice is physicians’ reluctance to certify a terminal illness, which they often see as admitting defeat, hospice leaders say. Adding to physicians’ natural reluctance to end treatment is the Health Care Financing Administration (HCFA) investigation into Medicare billing fraud. Launched in five states in 1995 and set for expansion this year, HCFA’s probe includes auditing hospice medical records for life expectancy discrepancies, among other things. (See related story, p. 25.)
Media attention brings negative impact
Media attention to the HCFA probe has had a chilling impact on Alzheimer’s hospice admissions. "We’re seeing more and more physicians refusing to certify people as being terminally ill," Kosman says. "I think they’re afraid of the implications [of terminal certification] rather than looking at the needs of the patients and needs of the family."
Kosman has had success in asking the geriatric specialist at an affiliated hospital to talk to Alzheimer’s patients’ physicians. "Sometimes when it’s peer to peer or when [the geriatric specialist] gives us enough information that the patient’s physician needs to hear, then we get them in hospice," she says.
Misconceptions about the disease are another barrier that cheats Alzheimer’s patients out of appropriate hospice care, experts say. Alzheimer’s is the ninth leading cause of death among those over age 65, according to the National Center for Health Statistics. But patients’ families often do not perceive of Alzheimer’s as a terminal illness, says Jeanne Brenneis, MDiv, STM, Director, Bioethics Center, Chaplain for Hospice of Northern Virginia in Falls Church.
One likely reason for this is that the onset of symptoms until the time of death ranges from three to 20 years, according to the national Alzheimer’s Association. The average Alzheimer’s patient lingers for eight years.
So hospice is not what friends and family think of when they hear the diagnosis. "There is a real need for education both for the general public and for physicians about the appropriateness of using hospice care," says Brenneis.
Disease’s progression not always standard
Last year’s set of standards for determining six-month life expectancy help, hospice experts say, but as with any disease, progression does not always follow standards. And, Brenneis points out, the standards haven’t been in use long enough to gauge how useful they are.
Paul Brenner, MDiv, MMU, executive director at the Jacob Perlow Hospice of Beth Israel Medical Systems in New York City, says that although the standards are helpful, they are not ironclad, since caregivers can significantly change an Alzheimer’s patient’s life expectancy. "When you’re using only medical criteria to determine the appropriateness of the diagnosis and the admission into hospice, if you don’t look at the role of the care giver, all of the medical criteria may be telling you one thing, but the experience may be quite different," Brenner says. "When this is a family member that has, for all intents and purposes, given up their life to care for an elderly patient with Alzheimer’s, [the patient] tends to live beyond the six month prognosis. There was just this unbelievable detail of care that had some influence."
Another difficult issue that hospice administrators sometimes face is staff reaction to the symptoms of Alzheimer’s. Trained in responding to the verbal demands of dying patients, hospice staff are often unprepared for the complete withdrawal of Alzheimer’s patients. "Most hospice direct care staff are used to getting immediate verbal feedback from the patients they’re taking care of. A great sense of their value and meaning in providing care comes through that loop," Brenner observes. "That dynamic is not going to be there with Alzheimer’s."
"Staff members were talking about how frustrating it was to communicate with these patients. It made us realize that we had to change our whole focus to look for other things that let you know you are doing a good job," Brenner adds.
Those cues from patients, used to assess their comfort levels, include: crying out, body movements, and contortions. In addition, low doses of morphine are sometimes prescribed. "We believe pain is an often unidentified need with Alzheimer’s patients," Brenner says.
Physical violence is often frightening for hospice staff, adds Kosman. Her staff has been given guidelines for approaching Alzheimer’s patients:
• Announce your approach so as not to startle patients.
• Don’t joke. Because of their diminished mental capacity, they likely won’t understand.
• Don’t fight back when they become violent.
• Keep your distance when they are physically aggressive.
Brenner’s hospice has found success with music therapy. A full time music therapist works with Alzheimer’s patients. (See story on music therapy, p. 32.) Family members are usually delighted to see their loved one respond to music when nothing else has reached them for months, Brenner says. "That becomes one of their cherished memories," he adds.
Great strain on families
Another challenge offered by Alzheimer’s patients is the duration of the strain on caregivers, who often tend aging parents or spouses for years on end. By the time they reach hospice, "It’s painful for family and caregivers after years of not having the recognition from their loved ones," says Trisha Pulloch, RN, MSN, director of clinical services at St. Peter’s Hospital Hospice in Albany, NY. "They’ve lost them years ago. That’s very difficult for them. [And there is] the guilt that family members have for having to give up the direct caregiving."
Staff at St. Peter’s are trained to reinforce the appropriateness of the family’s decision to admit a loved one to hospice and to put that decision in the context of the patient’s entire life. "We encourage a life review and tell them that what they did was OK. We go over the entire decision process and normalize it. It is part of the disease and normal for that group of people," Pulloch says.
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