Hospice eases strain of end-stage Alzheimer’s

Hospice offers financial and spiritual benefits

The needs of Alzheimer’s patients for care and symptom management — and the needs of their family caregivers for education and support — are immense. An estimated 4 million Ameri cans are affected by the disease, with that number expected to more than double in the next four decades, according to the Alzheimer’s Associa tion in Chicago. And for those patients and their families, hospice may bring financial, physical, and spiritual relief at the end of life.

Hospice’s role in addressing this national tragedy can be problematic because of the difficulty in identifying a clear terminal phase of six months or less to live — and the increasing insistence by government regulators that providers must meet this basic requirement of hospice coverage. In addition, some hospices have questioned what they can bring to the care of patients who are no longer able to communicate.

However, published guidelines and new research can help case managers and hospice providers make reasonable six-month determinations for many Alzheimer’s patients. The real question is whether hospices are willing to use the guidelines and fight for hospice access for these patients. (For further discussion of six-month determinations, see p. 189.)

Alzheimer’s is a terminal disease. There is no way to cure or reverse the progression of its destruction of the brain, called dementia. The U.S. Food and Drug Administration has approved two drugs for treating it, tacrine and donepezil hydrochloride, but these only postpone the inevitable. Eventually, on average within eight years, Alzheimer’s patients become bedbound, requiring full-time care and assistance with all activities of daily living. By that point, their family caregivers may be financially devastated, emotionally and physically exhausted, and at risk for serious health problems of their own.

CMs can advocate for end-stage patients

Different databases indicate that the proportion of hospice caseloads devoted to Alzheimer’s patients is somewhere between 1% and 3% — although this figure does not reflect the greater number of patients with other terminal diagnoses who have dementia as a secondary or comorbid condition. "Alzheimer’s societies and advocates have been very vocal about their desire to see appropriate patients in hospice. They see that hospice is of great benefit," says Stephen Connor, PhD, vice president for research and professional development with the National Hospice Organi zation in Arlington, VA. Hospices, by contrast, have been somewhat more reluctant partners, he observes.

Katie Maslow in the Alzheimer’s Association’s Washington, DC, office sees a change in attitude toward hospice’s role over the past year, "from This isn’t going to work’ to Let’s figure out a way to make it work.’" Two workshop sessions at this year’s Alzheimer’s national education conference in Indianapolis directly addressed hospice’s role in Alzheimer’s care. The challenge, Maslow says, lies in identifying best practices in end-of-life care and finding effective models of collaboration between hospice programs and local Alzheimer’s Association chapters.

While many hospice providers view the challenge of identifying a terminal phase of six months or less as the primary barrier to a greater role for hospice, others question what hospice can bring to the care of Alzheimer’s patients — particularly those residing in nursing homes, where their basic care needs are likely to be met by nursing home staff. It’s left to case managers to help families advocate for end-stage Alzheimer’s patients who lack the mental capacity to consent to hospice care and generally even the ability to say when they are in pain.

"Families and physicians often don’t realize the appropriateness of hospice for end-stage Alzheimer’s," says Patricia J. Whitney, MA, MBA, director of hospice for St. Mary’s Hospice in Spring Valley, IL. "These families have gone through so much for so many years. Often Alzheimer’s patients become bedbound at the end. They can’t eat. They become incontinent. Just when families have a need to keep their loved ones at home, their only alternative becomes a nursing home." (For information on how hospice helps nursing home patients, see p. 189.)

Hospice gives families the ability to keep their loved one at home and help ease them into a natural death, notes Whitney. "Under Medicare Part A, we can pay 100% of medical needs related to terminal illness. We can provide res pite care, nurse’s aides, medical social work visits," she notes. "Hospice provides the emotional, spiritual, and psychosocial support for families. Hospice also provides 13 months of follow-up care to ease families through bereavement. This helps families make ethical decisions about end-of-life care and later deal with their grief issues."

Families need to know what’s happening

The goals of treatment for these patients are frequently hazy, notes Lee Paton, RN, MS, a doctoral candidate in gerontological nursing at Oregon Health Sciences University, Portland, who has developed an eight-week program for the Portland Alzheimer’s Association chapter, aimed at educating family caregivers about the physical manifestations of end-stage Alz heimer’s disease.

Threshold issues for families center on decision making around IV antibiotics, tube feeding, and IV hydration. Families have a desperate need for information if they are to make appropriate decisions, but the information they need is more than just physiology, Paton explains.

"Families are often called into medical con ferences where the focus is on the physician or nurse trying to change their minds about care. I find families usually have completely different questions," she says. "How do you find out what are the real gut-wrenching issues for them?"

Families also need someone to explain what’s happening as the patient is actively dying, a responsibility for which hospice is uniquely qualified to help these patients become less agitated or have less pain, she adds. "You also have a population of caregivers who go on to have medical complications of their own and who could really use the support of hospice."

Paton’s course looks at the physiology, psychology, and spirituality issues of end-stage Alzheimer’s. The eight week program is centered around Physician Order for Life Sustaining Treatment (POLST) developed by the Oregon Health Sciences University Center for Ethics in Health Care. "I wanted to help families understand what kind of decisions they would be asked to make using this form. Families must understand that what they are being asked is to make decisions about the manner of their loved one’s death, which is particularly hard when loved ones have dementia because you can’t get that individual’s input," explains Paton. (For additional information on POLST, see story, p. 190.)

Ladislav Volicer, MD, PhD, clinical research -er in the Geriatric Research Education Clinical Cen ter at E.N. Rogers VA Medical Center in Bedford, MA, has studied end-stage Alz heim er’s disease patients extensively and determined that antibiotics for recurrent infections in end-stage Alzheimer’s patients do not extend their survival but can increase their discomfort. However, psychiatric conditions such as depression may require pharmacological management, he says.

"The issue of IV antibiotics for end-stage Alzheimer’s patients is similar to the issue of IV hydration. It’s often more a matter of how the dementia patient will react to new people, new environments, the process of the IV," notes Paton. "Even if the IV is started at home with a home infusion nurse, many families say that the impact would be too strong."

Case managers must help families look at the natural need to die at a certain time, says Paton. "The fact that we may prolong life by a few weeks with the use of IV antibiotics doesn’t mean it’s the right choice in all circumstances."

Whitney agrees. "The hardest issue for families to deal with is the need to let go," she says. "It many cases the family has lost the social aspects of their own lives after years of caregiving. An elderly spouse may have no one else left, which makes letting go even harder."

A way to avoid guilt

Questions Paton recommends that case managers use to help families explore include:

• For whom are we prolonging this life?

• Are we implementing this intervention simply because it’s possible?

• What are the consequences of the intervention?

"One of the biggest benefits of hospice is that we work with families on anticipatory grief," says Whitney.

"If we can do that successfully, we avoid much of the guilt families of Alzheimer’s patients feel when their loved one dies. When we come to end-stage Alzheimer’s, the physical needs of the patient are not as demanding as the emotional needs of the caregiver," she says. n