[Paleopsych] NYT: When Alzheimer's Steals the Mind, How Aggressively to Treat the Body?

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When Alzheimer's Steals the Mind, How Aggressively to Treat the Body?
NYT May 18, 2004

Macie Mull was 82 and had suffered from Alzheimer's disease
for more than a decade when she developed pneumonia. Her
nursing home rushed her to the hospital where she spent the
night, receiving intravenous antibiotics. The next day she
was back at the nursing home, more confused than ever.

Now she was choking on her puréed food; eating was becoming
impossible. And so, one Sunday afternoon, the
administrators of her nursing home in Hickory, N.C., asked
Mrs. Mull's daughter what to do: Did she want a feeding
tube inserted? At that point, Mrs. Mull muttered only a few
random words and could no longer recognize her daughter.
The feeding tube would almost certainly prolong her life,
but was it worth it?

The question of how aggressive to be in treating late-stage
Alzheimer's patients is one of the most wrenching and
contentious issues in medicine. For every patient who, like
Mrs. Mull, reaches the final stage of the disease, there
typically are about five or six family members faced with
decisions about whether to authorize medical treatments for
patients whose bodies live on though their minds are gone.

New research has found that Alzheimer's patients at the
end of their lives often receive everything that medicine
has to offer.

For example, a recent study of nursing home patients, by
Dr. Susan Mitchell of Harvard and the Hebrew Rehabilitation
Home for the Aged, found that those with end-stage
Alzheimer's received more aggressive medical treatment -
including feeding tubes, intravenous fluids and antibiotics
and hospitalizations - than cancer patients at the end of
their lives.

But Alzheimer's patients rarely receive the palliative care
intended to relieve suffering but not to prolong life that
is normal in cancer cases; they make up only 7 percent of
people who receive hospice care.

The comparison with cancer patients is imperfect because
cancer patients often die more quickly, and , unlike
Alzheimer's patients, they can speak for themselves about
their care. But some experts and family members argue that
intensive treatment in cases of late-stage Alzheimer's
patients is inappropriate, even cruel, and that its costs
are excessively high.

For family members, costs of treatment are rarely an issue
because they are mostly borne by taxpayers; most medical
and nursing home care is paid for by Medicare and Medicaid.
So some end-stage Alzheimer's patients get dialysis when
their kidneys fail. Infections are treated with intravenous
antibiotics. Patients are rushed to hospitals and intensive
care units when they fall ill.

Putting in a feeding tube can cost about two thousand
dollars, said Dr. Douglas Nelson, a geriatrician in
Hickory, whose practice mostly consists of nursing home
patients. Inserting a tube requires a consultation with a
speech therapist to verify that food is entering the lungs
and an X-ray by a radiologist that requires swallowing
barium. The procedure itself is done in a hospital, with an
anesthesiologist, and a gastroenterologist or a general

A feeding tube can prolong life in a nursing home, which
quickly dwarfs the cost of inserting a tube. In North
Carolina, Dr. Nelson said, it costs $150 a day on average,
not counting medication, to care for a patient in a nursing

"The economics are horrific," said Dr. Steven DeKosky,
director of the Alzheimer's Disease Research Center at the
University of Pittsburgh.

Dr. Diane E. Meier, a professor of geriatrics and ethics at
Mount Sinai School of Medicine in Manhattan, agreed. "We
are spending a huge amount of money keeping people with
irreversible brain failure alive," she said. "If the
technology exists, we feel we must use it. Our colleagues
in Europe consider what we do bizarre to the point of

But others contend that to withhold treatment is to hasten
death, in effect, playing God.

"There are people in my field who have legitimate concerns
that we might be too eager to pull the plug," said Dr.
Christine Cassel, an expert in geriatrics, ethics, and
end-of-life care and president and chief executive of the
American Board of Internal Medicine. "Just because someone
has Alzheimer's disease doesn't mean their life has no

With tube feeding and medical treatment for each crisis,
end-stage Alzheimer's patients can live on, sometimes for
years. Many no longer recognize family members, speak only
a word or two, cannot walk or eat, and are prone to
pneumonia and repeated urinary tract infections.

"We have this sense that you can only be dying for a decent
interval, a few months or so," said Dr. Joanne Lynn,
director of the Washington Home Center for Palliative Care
Studies. "You can't be dying for years."

But that is what many demented patients do, Dr. Lynn said,
adding, "They just sort of hang on for remarkable lengths
of time."

Family members and doctors must decide what steps to take.
But many find themselves at a loss. "People desperately
need some guidance," Dr. DeKosky said. "Everyone, including
the docs, is saying: `Tell us what's O.K. Tell us what's
appropriate.' "

Often, doctors simply treat the medical conditions as they
arise, putting off conversations about where, and whether,
to draw a line.

"Some physicians and health care providers find it
difficult to talk about these things," Dr. Mitchell said.
"And it takes a lot of time and effort, which for the most
part is not well reimbursed."

But even when the issue of ending aggressive care arises,
family members often disagree about what is going on in the
mind of a patient.

"A family member sees what they see as a light of
recognition, even if other people standing there can't be
sure they saw it," Dr. DeKosky said. "On the other hand, a
flicker of recognition isn't the answer. It isn't saying,
`Yes, he's still in there.' "

In Mrs. Mull's case, her daughter, Patricia Hollar, was
torn. "I walked for a while, and me and the man upstairs
did some talking," she said.

Her heart told her that maybe enough was enough, she said.
But she feared being too hasty and worried that although
she was in charge of deciding her mother's care, her two
brothers and sister might think she was condemning their
mother to death.

She had the tube inserted. Many others make that choice

Randy Bryant of Taylorsville, N.C., chose a feeding tube
for his mother, Hattie Kuykendall, 89, who has advanced
Alzheimer's disease and lives in a nursing home nearby. He
didn't hesitate, he said, when his mother had trouble
swallowing, began aspirating food into her lungs and
developed pneumonia.

"With a lot of people, it's an easy decision to just let
people go ahead and pass away," Mr. Bryant said. "When it's
your mother, you can't do that. Would you let your mom

In other families, there is an unspoken concern that if
they halt to treatment, they will be judged - by their
friends, others in the family or their churches.

"That's a major barrier," said Dr. Meier of Mount Sinai.
"Will people accuse me of having killed my mother or not
being a caring daughter?"

As a result, each illness is often viewed by family members
and doctors as an isolated problem with a potential
solution, said Dr. R. Sean Morrison, a professor of
palliative care at Mount Sinai.

"We forget the dementia," Dr. Morrison said. "What people
see is a potentially curable illness."

Burton Federman, 79, of Brockton, Mass., allows intravenous
antibiotics for the infections of his wife, Diana, 76, but
not a feeding tube. Twelve years after she entered a
nursing home with Alzheimer's, she is still able to eat if
someone spoon feeds her. He and his two daughters visit his
wife nearly every day.

"She sits in a chair," Mr. Federman said. "She hasn't
spoken for several years, and I can't say that when I or
any of the family comes that there is any recognition.
Occasionally, some sort of guttural sound will come out,
but other than that, nothing."

Reflecting on a common question, he said: "People ask us:
`Why do you do this? She doesn't know you. She doesn't
speak.' But we know ourselves. As long as there's any
breath left, we're not writing it off."

In North Carolina, Dr. Nelson reached a crisis of

"The more I started looking at these poor people with
feeding tubes, the more guilty I started becoming," Dr.
Nelson said.

"Am I sinning?" he recalled asking himself, wondering
whether it was right to stand by while patients suffered
with pain and discomfort from tubes and other treatments.

"I went to medical school to alleviate suffering and I am
causing suffering," Dr. Nelson said. "When I die and
hopefully go to heaven, God will ask me, `Did you try
everything possible?' I want to say I did."

Last November, he introduced a position paper to his state
medical society, which it passed unanimously, saying that
tube feeding was not good medicine for end-stage dementia
patients. He also counsels families. When Alzheimer's
patients can no longer eat, Dr. Nelson said, "My advice is
to let the patient die peacefully."

But, he added, few families are receptive, and some become
angry. More often than not, the feeding tube goes in.

Dr. Nelson is an exception, Dr. Meier said. More often, she
said, doctors tell a family that the patient will starve to
death without a feeding tube, and pressure them to have it
put in. Her own view, she said, is that "families should be
counseled that loss of an ability to eat and drink is a
sign that the patient has entered the terminal phase of the
illness" and the focus should be on palliative care.

No one can say for sure whether a feeding tube prolongs
life, Dr. Meier said, but "it's counterintuitive to think
it won't."

Mrs. Mull had her feeding tube for about four years, until
she started to regurgitate food with episodes of choking
and coughing.

Mrs. Hollar spoke to her sister and brother. "I said I
don't want to put her through any more discomfort," she
recalled. "It is time to let her go."

Her sister, she said, agreed, but one of her brothers had
doubts. "He was hoping she would just drift off," Mrs.
Hollar said.

Finally, she had the tube removed. Two weeks later, her
mother died.

"It was not an easy decision," she said. "But I don't look
back, and I don't ever regret it."


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