Alzheimer’s patients face an uphill battle to obtain hospice care

Caregivers digging deeper’ to solve problems

Few manifestations of human frailty are more terrifying than Alzheimer’s disease, with its progressive decline of all aspects of the patient’s cognitive function and personality. The needs of Alzheimer’s patients for care and symptom management, and the needs of their family caregivers for education and support, are immense. And the magnitude of the suffering is growing. An estimated four million Americans are currently afflicted by the disease, with that number expected to more than double in the next four decades, according to the Alzheimer’s Association in Chicago.

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 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.

Recent issues of Hospice Management Advisor have highlighted the industry’s struggles with the six-months-or-less requirement, and the desire by some in the industry to see it changed. However, published guidelines and new research can help sharpen providers’ ability to 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. (See article on making six-month determinations for Alzheimer’s patients, p. 132.)

Alzheimer’s is terminal

Alzheimer’s is a terminal disease. There is no way to cure or reverse the progression of its destruction of the brain, called dementia. There are two drugs approved by the U.S. Food and Drug Administration for treating it, tacrine and donepezil hydrochloride, but these only postpone the inevitable. Alzheimer’s patients become bedbound in an average of eight years, 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.

Different databases indicate 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 Organization (NHO) in Arlington, VA. Hospices, by contrast, have been somewhat more reluctant partners, he observes.

Katie Maslow, MSW, Washington, DC-based director of the Alzheimer’s Association’s Initiative on Alzheimer’s and Managed Care, 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 recent Alzheimer’s national education conference in Indianapolis directly addressed hospice’s role, while others explored quality-of-life issues such as music therapy, healing touch, aromatherapy, spiritual concerns, and even reminiscing as a therapeutic intervention. 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.

"Alzheimer’s patients, more than most other disease categories, are seriously underserved, with very few resources. Families commonly go nuts — and bankrupt," observes Brad Stuart, MD, hospice medical director for Home Hospice, a program of VNA and Hospice of Northern California in Emeryville. "But hospices need to be careful because lots of resources are necessary, and the hospice team may need to be augmented with other resources," such as grant funding for supplemental attendant care.

"Hospice is not the full answer to Alzheimer’s; it can’t be. But there is a role for hospice, particularly in institutions such as skilled nursing or board-and-care facilities, where pain is severely undertreated," Stuart says. "When you hear patients howling day and night, for a certain proportion it’s from pain. You need to sort that out and treat the pain. Pain assessment is something hospice has a lot of experience in."

When pain is treated properly, the aggressive behavior common to many Alzheimer’s patients often declines, adds June Dahl, PhD, professor of pharmacology at the University of Wisconsin-Madison.

End-stage Alzheimer’s actually presents a whole complex of symptom management challenges, notes Mary Labyak, MSW, LCSW, CEO of Hospice of the Florida Suncoast, Largo. "Those symptoms are coming to resemble the illness of advanced aging in general. Three percent of our patients have Alzheimer’s as their primary admitting diagnosis, but we speculate that probably a quarter of our patients have Alzheimer’s or other dementias of advanced aging."

What is hospice’s value for Alzheimer’s?

While many in hospice 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. End-stage Alzheimer’s patients lack the mental capacity to consent to hospice care and generally even the ability to say when they are in pain. Thus, hospice’s customary goal for a self-determined life closure is not possible.

"One thing people need to think about: Is hospice a real choice for families, or just a way of tapping into a reimbursement stream?" suggests Joanne Lynn, MD, director of the Center to Improve Care of the Dying in Washington, DC, and founder of the MediCaring demonstration project. "If it is a real choice, how do you articulate that choice?" she wonders. "My advice is that if you are in a hospice setting that could possibly maintain a major service array for Alzheimer’s disease, then go after those categories of patients that look like you could admit them, and learn how to take care of them," Lynn says.

"Become more data-driven," she urges. "Get to know your local PACE [Program of All-Inclusive Care to the Elderly] provider and the nursing homes in your community. See yourself as part of an overall array of Alzheimer’s services, and be thoughtful about how families are encouraged to use that array. Hospices could convene these conversations in their communities and encourage thoughtful decisions about which patients are appropriate for hospice," Lynn says. "It’s unlikely that hospice would take over the Alzheimer’s continuum, but you need to be a regular player in the service array."

Clarify goals of treatment

"The goals of treatment for these patients are frequently hazy," Stuart observes. "Too often, nobody sits down and thinks: Is the goal to keep them alive as long as possible, or comfortable as much as possible? If we were clear on the goals of treatment, we could keep many more Alzheimer’s patients in the skilled nursing facility and not have to transfer them to the hospital at the end. They wouldn’t have to be intubated or treated with antibiotics, but instead would be given appropriate end-of-life care," he explains.

Highlights of such an approach include "excellent symptom control — with confusion and agitation controlled with psychosocial support and medications — and, of course, their pain managed," Stuart says. "The patient needs physical touch and contact, and emotional contact from family members. Insomnia and crying out at night can be controlled with medications. This kind of care also means excellent goal setting — trying to keep the patient as comfortable as possible and responding to problems as they come up — as well as educating and supporting the family so they understand that excellent end-of-life care is the right approach to take."

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

Lee Paton, RN, MS, a doctoral candidate in gerontological nursing at Oregon Health Sciences University in Portland has developed a program for the Alzheimer’s Association Portland chapter, aimed at educating family caregivers about the physical manifestations of end-stage Alzheimer’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 conferences where the focus is on the physician or nurse trying to change their minds about care. I find families usually have completely different questions," Paton 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.

"Even the most confused people respond to human touch, human presence," adds Labyak. "We can’t discount our ability to have a therapeutic effect" through interventions aimed at creating a more comforting milieu or environment, she says. Music, color, and aromatherapies are examples of the kinds of things that can 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."

Even in the nursing home setting, hospice can be an important addition to the Alzheimer’s resident’s quality of life, says J. Donald Schumacher, PsyD, CEO of Hospice Association of Western New York in Cheektowaga. "Generally, you can identify physical care that may be appropriate. Even though these patients are not cognizant, they can express real pain when they feel it and real unhappiness when unhappy," Schumacher says. "As a clinical psychologist, I would recommend erring in favor of helping them rather than not helping."

Alzheimer’s care can be a challenge for hospice professionals, observes Paul Brenner, MDiv, coordinator of Jacob Perlow Hospice in New York City. "The usual ways of getting rewards from their work involve in-depth emotional exchanges with their patients. With Alzheimer’s, that isn’t going to happen. So it means digging deeper into our own characters to find where the human connection might be," he explains.

"Regardless of what they cannot do or say for themselves, they aren’t vegetables; they are still people," Brenner says. "Getting families to tell stories of what the person was like pre-Alzheimer’s is one way for hospice workers to start to make that connection. Anything hospice can do, such as music therapy, that can bring back some glimpse of who that person was, absolutely alters how the family views this time. Because the patient can’t communicate it in words, the only way to do this is to look for changes in affect or body language," he relates.

"It’s not uncommon for the patient to have crawled into a fetal position, moaning and groaning, crying out when touched. If these things lessen through hospice’s intervention, that is an indication that quality of life improvement has taken place. But it falls to hospice to find ways to define who this person is, rather than have him or her be thinged’ into something less than human." Such an approach should have a deep resonance with hospice’s philosophy of care and vision of itself, Brenner says.

"I have heard some senior hospice executives say that there isn’t a place for these patients in hospice because they can’t be counseled or say whether they are in pain," Labyak says. "I’d say we need to do a self-check: Are we responding from our own fears?"

Hospice professionals are perfectly capable of doing Alzheimer’s care, Stuart adds. And for those who find the work unfulfilling or feel frustrated in trying to provide quality of life for non-responsive patients, Stuart says the answer lies in soul-searching — literally. "When I used to make nursing home rounds every month, I would frequently see patients that I couldn’t speak with. I needed to search for their souls," he relates. "Put your hands on their shoulders, stand behind them and feel how they’re doing." Or put one hand on top of their head and one on their heart and try to find their souls, he says. "Who knows what you’re actually feeling? What you’re really doing is connecting with another person the best way you can," Stuart explains.

"I have no patience for people in hospice who have no willingness to do that. If you can’t get fulfillment from the patient responding in your language of choice, then use the patient’s language," he says. "It’s no different than holding a crying baby or a sick pet. It boils down to love, and it’s about healing — for them and for us. It heals the feeling of separation that might lead some hospice professionals to say: I don’t get fulfillment from patients I can’t communicate with.’"