Hospice and Alzheimer's Disease
by Leslie Knowlton| Geriatric Times |  |
November/December 2000 | |
Vol. I | |
Issue 4 |
Every year, about 540,000 terminally ill Americans enter hospice programs to receive supportive care services for themselves and their families. Care is usually given at home with no out-of-pocket cost. Although hospice is a well-known option for end-stage cancer patients, it is rarely utilized for people with Alzheimer's disease (AD).
According to the Virginia-based National Hospice and Palliative Care Organization (NHPCO), less than 3% of the nation's hospice census comprises patients with AD, despite the fact that AD contributed directly to about 22,000 deaths in 1996 and was a contributing factor for another 21,000 (Hoyert and Rosenberg, 1999).
"Doctors are still very shy about recommending hospice to their patients, whether it's for Alzheimer's or any other disease," Jean Marks, associate executive director of the Alzheimer's Association, told Geriatric Times. "One reason is there's still lots of confusion about what hospice is and how to qualify patients for hospice benefits. Another reason is, since there's no curative medical intervention with hospice, they run away from feelings of impotence. But that makes no sense in terms of the people who are dying and their families."
Families are also reluctant to consider hospice for relatives with Alzheimer's, added Naomi Naierman in an interview with GT. Naierman is president and CEO of the Washington, D.C.-based American Hospice Foundation, which publishes the brochure "Alzheimer's Disease and Hospice."
"Hospice offers a very peaceful way to go after this long protracted illness, but often it's simply not clear-cut when it is appropriate," she said. "There's more reluctance to do it on behalf of people with dementia who can't speak for themselves, even when families know what their loved one's wishes would be."
Naierman explained that there is nothing clear-cut about the difference between comfort care that hospice gives versus the futile life-prolonging care that most patients with AD receive at the end of their lives. "Much treatment can be given in the name of comfort care, and hospices are very good at helping families sort all that out," she said. "My advice is that physicians and families work very closely with hospices, because together they can sort through admissions criteria...and make decisions about treatments such as nutrition and hydration, how aggressively to treat infections and whether or not to resuscitate. Even if the family isn't quite ready for hospice today, they can start discussing it early on and continue the conversation later if they want to. Most hospices are very patient with helping families make this very difficult decision."
What Is Hospice?
Hospice is a concept rather than a place of care. Its holistic model of services is designed to neither hasten nor postpone death, but rather to make a patient's final days as positive and symptom-free as possible.
With hospice-now a medical benefit covered by most insurance plans-patients can stay home for most, if not all, of their remaining time. They receive care from an integrated hospice team: nurses, medical social workers, physical and occupational therapists, nutritionists, home aid workers, pastoral counselors of all denominations, and trained volunteers. They can continue to be treated by their own physician or by the hospice physician. Smaller hospices may require that a family member or friend be in the patient's home to act as a primary caregiver.
While patients are at home, all necessary symptom-relieving medications are provided, along with any necessary special medical equipment. Assistance is available 24 hours a day, seven days a week. In emergencies, hospice workers take patients to a hospital or hospice inpatient unit designed to be as homelike as possible. Inpatient respite care is also available to provide a break for families. Besides medical support, hospice workers assist patients in every other facet of their lives, from practical support such as pet care and shopping, to emotional support, including life-closure, grief and spiritual counseling. Depending on the hospice's resources, it may also provide other services such as art, touch and music therapy.
Hospice care includes the entire family of a patient and does not end with a patient's death. Follow-up contact and bereavement counseling continue if so desired.
"A common misperception is that late-stage Alzheimer's patients won't benefit from services that hospice provides," said Naierman. "Besides the treatments that depend on cognitive communication, there are lots of ways to reach dying people suffering from Alzheimer's, such as massage and music therapy. The support for their families through and after this devastating illness is invaluable."
She added that hospice workers have expertise in managing specific symptoms of late-stage AD, including problems with skin, mouth, eating, bowel and bladder, safety, restlessness and sleep.
Qualifying for Hospice
Medicare law states that a patient must have "a medical prognosis that his or her life expectancy is six months or less if the illness runs its normal course" to qualify for hospice care.
The six-month eligibility factor came about because the Health Care Financing Administration (HCFA) originally established criteria for hospice coverage based on hospice programs that treated mostly cancer patients. Because cancer has a relatively predictable course compared to diseases such as AD and AIDS, physicians were more likely to certify cancer patients as having no more than six months to live than patients with these other diseases.
"For any disease, it's difficult to predict how much time is left, and this is especially true for Alzheimer's," said Naierman. "And in recent times, physicians have been under fire for both underestimating or overestimating time left. Because of that, they're overly cautious and, therefore, many people never receive the hospice benefits they're entitled to."
In response to concern that patients living longer than six months would risk losing their coverage, Nancy-Ann Min DeParle, former HCFA administrator, sent a letter to 2,200 hospices, assuring them, "Nothing could be further from the truth…In no way are hospice beneficiaries restricted to six months of coverage."
In fact, NHPCO reports that the average stay in a hospice program is only about 51 days; the median is about 25 days. More than 15% of hospice patients don't enter hospice care until their last week of life. That frustrates hospice advocates, including Paul Brenner, executive director of the state-of-the-art Jacob Perlow Hospice of the Beth Israel Medical Center in New York City and chair of the board of the New York State Hospice Association in Albany.
"The majority of Americans today die abandoned, isolated, in pain, and many are dumped in institutions," he told GT. "It doesn't have to be this way for anyone, including those with Alzheimer's disease."
A Hospice Model
Jacob Perlow Hospice received funding from the Robert Wood Johnson Foundation in 1993 to create and evaluate a model program for delivery of a full range of hospice services to patients with end-stage AD and their families. During the three-year project, 124 patients were served for a total of 17,358 days of home care, with an average length of stay of 154 days. Seventy percent of the patients died at home, 17% died in the hospice's homelike inpatient unit, and 13% died in nursing homes.
"These families have lived with this slow, declining, chronic condition for an incredible length of time compared to a disease like cancer, therefore, the long-term burden of it is just overwhelming," said Brenner, adding that families desperately need help for anxiety, exhaustion, grief, and a sense of failure and self-blame. "We give them an enormous amount of psychosocial support and get them through it. Just finally having to not carry the burden alone is a big shift."
A chapter about the project is in Hospice Care for Patients with Advanced Progressive Dementia by Ladislav Volicer, M.D., Ph.D., and Ann Hurley, R.N., DNSc. (Springer Publishing, 1998). Since this project, NHPCO has also published Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases to further help physicians. This guideline can be ordered from NHPCO by calling (800)646-6460.
"The point is, physicians should know we now have clear guidelines for them, and they work reasonably well," Brenner said. "[But] what hospices are wanting to do is eliminate the prognosis requirement for entrance into hospice care and move to a severity-of-illness criteria. And hospice programs are very interested in moving palliative care earlier so that people get appropriate symptom management and psychosocial support while they are still getting active disease treatment."
Stephen Connor, Ph.D., vice president of NHPCO, noted that research funds are sorely needed to develop severity measures that could replace prognosis criteria. "But until we have something to replace the six-month prognosis, that's what we must use," he told GT.
Connor added, "I do think the issue around continuation of disease-modifying therapy is creating barriers to patients getting good palliative care, particularly through hospice, so there's a lot of thought about how we can change the system without losing progress we've already made in the hospice benefit. We just have to be careful about how we do it so we don't end up becoming too expensive or becoming indistinguishable from the rest of the health care system."
Meanwhile, many hospitals are improving palliative care for all patients, whether or not in imminent danger of dying. "We need a health care system in this country [that], at the time of diagnosis of a serious medical condition, provides a comprehensive, longitudinal way of providing care from the beginning to the end, and includes the family all along the way," said Brenner, noting that Jacob Perlow Hospice is within Beth Israel's Department of Pain Medicine and Palliative Care, the first such department in a major U.S. teaching hospital.
Added Brenner, "Ninety percent of us will die from declining medical conditions. We need to get ready for that."
Reference
Hoyert DL, Rosenberg HM (1999), Mortality from Alzheimer's disease: an update. National Vital Statistics 47(20): June 30.