Alzheimer’s patients EOL care often misdirected

Cancer care model doesn’t address some needs

The patient Jan Daugherty was visiting at an Arizona long-term care facility was very near the end of his life. Barely able to move and unable to speak, he communicated only with his eyes, which brightened when she gave him a drink of water. Later during the visit, she was able to feed him three glasses of juice and two cups of ice cream.

"Hospice personnel had advised the staff that if he had difficulty swallowing, they didn’t have to feed him. And he did have problems swallowing the day before, but he didn’t the next day," says Daugherty, special projects manager with the Phoenix-based Desert Southwest chapter of the Alzheimer’s Association.

The patient was at the end of his life — he died five days after her visit — and did not really need a nutritional meal. Still, he could enjoy the sensation of eating — the coolness of ice cream in his throat and the interaction with another person that sharing a meal can bring.

His case illustrates the problems that many patients with advanced dementia face in getting appropriate care at the end of life, Daugherty says. People in the advanced stages of Alzheimer’s disease may live for years. Unable to speak or walk unassisted, they are completely dependent on others for care. Yet their caregivers — both family members and health care professionals — frequently don’t understand what these patients need and want and what they are still capable of.

Four demonstration projects to explore options

The Desert Southwest chapter recently initiated a study of palliative care for dementia patients — with four demonstration projects to explore different treatment options in long-term care, assisted living, and hospice settings.

"Especially with hospice, what the nurses and other members of the team tend to know is cancer care, which is really great, except that dying from dementia is not anything like dying from cancer," Daugherty says.

For example, many cancer patients lose their appetite and don’t want to eat. But dementia patients often indicate they still feel hunger and thirst right up until the last days of life.

"Clearly, they gain some pleasure from it, or they would not keep doing it," she adds. "That is one of the last enjoyable things that they have."

And cancer patients may not want to move or be in different positions because it is painful for them. But patients with advanced dementia do not have the same physical challenges and may want to get out of bed and sit in a nearby armchair or be turned toward a window.

"You have to really look for and pay attention to nonverbal clues with these patients," Daugherty says. "In some ways, they can be the easiest patients to care for because they don’t make any noise. In other ways, it can be very challenging because we have to anticipate every need that they have."

In educating caregivers, Daugherty advises them to think about the person as if they were a newborn baby, unable to talk or move by himself, yet still needing to be cared for.

"That is kind of where we are, developmentally, with this population," she notes. "They are like an infant in terms of where they are neurologically, their ability to communicate — they are often turning back to primitive resources."

Paying attention to nonverbal clues such as grimaces or moans that indicate discomfort or a brightening of the eyes that shows pleasure can guide caregivers in providing stimulation.

"Music can be extremely important, for example," she says. "We have even had some aphasic patients begin to sing with us when we sing to them. So we know that interaction is still important to them."

Use of technology controversial

Too few skilled nursing facilities are even using the hospice approach of less technology and more patient-caregiver interaction in caring for dementia patients at the end of life, adds Stephen Post, PhD, professor of biomedical ethics and associate director of educational programs at the Center for Biomedical Ethics at Case Western Reserve University in Cleveland. Post is also the author of The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying, published by Johns Hopkins University Press in 2000.

"While hospice teams have made inroads into the culture of long-term care, there is still a good deal of resistance," he says.

For example, most hospices don’t recommend the use of percutaneous endoscopic gastrostomies (PEGs) in patients with advanced dementia. PEGs involve the use of artificial feeding tubes that are placed in the abdomen of patients who are unable to eat or have difficulty swallowing.

"The Alzheimer’s Association, as well as several recent scientific studies over the last four years, have indicated that assisted oral feeding is a better option in all respects to the use of a feeding PEG," Post says.

Feeding PEGs does not require major surgery, but they do require that the patient be transferred out of his or her current setting to the hospital for tube placement, which often upsets and disorients the person.

PEGs are preferred by some nursing homes because of the perception that they require less staff time.

"Feeding tubes are not easy; they do have complications," he explains. "Feeding PEGs create a lot of aspiration pneumonias, they lead to diarrhea, and they create a problem with the use of restraints because the person — not having insight into what the little tube is for — try to pull them out, wind up in restraint, which can lead to increasing bedsores, decubiti, etc."

Assisted oral feeding, which may take longer, is much better for patients and leads to fewer complications.

Patients with advanced dementia are going to suffer intractable weight loss whether they are on assisted oral feeding or on feeding PEGs, though many caregivers erroneously believe that use of feeding tubes helps keep a patient’s weight up, and this indicates that the person is healthier.

"Weight loss is simply part of the progression of the disease and will occur regardless," Post says.

Many administrators erroneously believe that state surveyors will monitor dementia patients for signs of weight loss or gain, but most surveyors now understand that weight loss is normal in that population, he adds.

Many gastrointestinal specialists and surgeons do not favor the use of PEGs in this population, but face pressure to perform the procedures from the referring medical directors and from department chairs concerned about losing revenue by turning such surgeries away, Post says.

"If that one situation [the overuse of feeding PEGs in dementia patients] could be changed it would make a lot of difference," he says.

Another issue is the use of antibiotics, which most hospice programs do not support in the case of patients with advanced dementia.

Patients at the advanced stage of dementia may get several infections, particularly chest infections. Given antibiotics, they frequently will clear the infection only to quickly get another infection that is resistant to the initial drug. Most hospice programs use other methods to treat the symptoms of chest infections.

"If the antibiotics are absolutely palliative, as in the case of someone with a urinary tract infection, they may be used but in general the effectiveness of antibiotics diminishes with use in this population, and they verge on futile, anyway," Post says.

Hospice benefit too limited

Many patients with Alzheimer’s also never get hospice care because the Medicare benefit is limited to six months, another way care is structured to meet the needs of patients with end-stage cancer, but not the needs of those with dementia.

Patients may be in the advanced stage of Alzheimer’s anywhere between one and about three years, says Daugherty. It is difficult for physicians to know when these patients are close to death, particularly within six months.

"There are people who die and you least expect it. They are in the late middle stage, when they are still able to walk around, then they get a fever, take to their bed and die within a few days," she explains. "Then there are patients who can’t talk, are barely eating, and they just keep going and going. They’ll get an infection and get better."

Only 10%-15% of the census at most hospices represent patients with dementia, says Post. About 5%-10% of people with Alzheimer’s are cared for at home by relatives, and most are admitted to long-term care.

"There has been some improvement at the federal level with the hospice benefit," he adds. "Physicians can make the diagnosis of six months or fewer, and, if the patient lives longer, which frequently patients with Alzheimer’s will do, they can recertify them for an additional six months, and sometimes a third time."

The national Alzheimer’s Association has defined the third stage of Alzheimer’s as terminal, which has helped patients get more of the palliative care they need, he says. "You can’t define mild Alzheimer’s as terminal, you can’t even define moderate Alzheimer’s as terminal. People can live in those states for years and years. But the advanced stage is a time of severe decline and decreased function, and relatively imminent death."

There still are some financial disincentives to getting appropriate palliative care for patients with dementia — reimbursement rates that favor use of higher technologies such as feeding tubes as opposed to simpler caregiver activities such as assisted oral feeding, says Post. But these are slowly being resolved.

It’s more important for caregivers to be educated about treatments and options that are appropriate for these patients, adds Daugherty.

The Arizona demonstration projects are beginning to yield some data, with evidence that patient outcomes are improved in patients who have received interventions recommended by the Alzheimer’s Association.

Once there are appropriate protocols for caring for these patients at the end of life, and providers are more knowledgeable about what these patients need, then health care professionals can advocate for changes in reimbursement and coverage policies that reflect appropriate care, she says.

"By and large, this is a group of people that we just warehouse right now," she says. "There are policy implications, but we need to develop models of care that work, and then work on policy."

Suggested reading

  • Finucane TE, et al. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA 1999; 282:1,365-1,370.
  • Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Eng J Med 2000; 342:206-210.
  • Post SG. Tube feeding in advanced progressive dementia. Hastings Center Report 2001; 31:36-42.
  • Gauderer M. Twenty years of percutaneous endoscopic gastrostomy: Origin and evolution of a concept and its expanded applications. Gastrointest Endosc 1999; 50:879-882.


  • Stephen Post, PhD, Center for Biomedical Ethics, Case Western Reserve University School of Medicine, 10900 Euclid Ave., Cleveland, OH 44106-4976.
  • Jan Daugherty, Alzheimer’s Association, Desert Southwest Chapter, 1028 E. McDowell Road, Phoenix, AZ 85005.