Facing Up to the Inevitable, in Search of a Good Death

December 30, 2003
By JANE E. BRODY

The year was 1958, I was 16 and my mother was lying in a
hospital bed connected to all sorts of tubes and was dying
of cancer. As her life slipped away, a nurse slapped an
oxygen mask on her face and asked me to hold it. There was
no chance for either of us to say goodbye or "I love you."
I carry this medicalized memory of my mother's death with
me to this day.

I am hardly alone. Cicely Saunders, the founder of the
first modern hospice, said, "How people die remains in the
memories of those who live on."

Experts on end-of-life care say that my mother's death was
handled wrong, all wrong. Chalk it up to ignorance back
then. But 45 years later, despite a greatly enhanced
understanding of what happens to a person near the end of
life, little has changed in the way most people die in hospitals or nursing homes.

All too often, life is prolonged in pain or discomfort,
with medical interventions and instruments precluding an
opportunity for loved ones to say goodbye.

Such was the case for 22-year-old Dave Fulkerson, who was
hit by a car while he was jogging with his girlfriend. In
the intensive care unit, his family was not allowed to see
him for three hours. By then, he was no longer able to
talk. Further, only one person was allowed in for five
minutes every two hours. Eventually, his frustrated
girlfriend went home, and his parents fell asleep in the
waiting room, only to be awakened by a nurse and told their son had died.

Rose Virani, a research specialist at the City of Hope
National Medical Center in Duarte, Calif., and Dalia Sofer,
a writer, recounted this case last May in The American
Journal of Nursing in one of a series of articles on
end-of-life care. They lamented the lack of communication
between the health care team and hospital staff and Mr.
Fulkerson's family, intensifying the pain they suffered
over his death.

"Poor communication is not the only obstacle to a peaceful
death," the article noted. "Some patients are overtreated,
receiving aggressive care until their last breath. Others
are undertreated, so much so that their final moments are
steeped in physical pain. Still others receive conflicting
advice from doctors and nurses on the best course of
action, leaving them confused and unprepared for death."

As deaths from heart attacks decline and life expectancy
rises, death has become a protracted process for more and
more people. Accompanying this trend is a growing need for
medical professionals and families to understand what
happens during the last weeks, days and hours of life and
what kind of action, or inaction, is most likely to bring a
comfortable, peaceful, even beautiful end.

In a 1996 report endorsed by more than 30 health care
groups, the American Geriatrics Society listed nine
important factors for quality care at the end of life:
alleviating physical and emotional symptoms; helping the
patient maintain dignity; using treatments that reflect the
patient's wishes; avoiding "inappropriate aggressive care";
giving the patient and family quality time together; giving
the patient the best possible quality of life; minimizing
the family's financial burdens; informing patients about
insurance coverage; and helping the family with
bereavement.

But six years later, a review of care near the end of life
published by the geriatrics society revealed
"overwhelmingly disappointing results," Ms. Virani and Ms.
Sofer reported. Far too many deaths were still marred by
unwanted treatment and hospitalization, inadequate relief
of pain and other debilitating symptoms, and inept
communications.

The Final Days

When people are near death, physical and mental changes
occur that can confuse and frighten those around them and
result in inappropriate responses.

When someone can no longer take food orally, the temptation
is to use a feeding tube. When a dying person gasps for
air, the tendency is to reach for an oxygen mask. But are
these desirable? Not necessarily, experts say.

In another article in the nursing series, published in
July, Elizabeth Ford Pitorak, director of the Hospice
Institute of Hospice of the Western Reserve in Cleveland,
described what happens when death is imminent and the time
has come to shift from healing to relief of symptoms.

"Active dying, the process of total body system failure,
usually occurs over a period of 10 to 14 days, although it
can take as little as 24 hours," Ms. Pitorak wrote.

Usually, she noted, dying patients become dehydrated;
swallowing becomes hard; and peripheral circulation
decreases, resulting in perspiration and clammy skin that
feels cold to the touch. This should not be a sign to pile
on blankets, however, because "most dying patients can't
tolerate even the slightest weight on the feet or other
extremities," she wrote.

Pulmonary congestion can prompt patients to gasp for
breath. But, Ms. Pitorak said, supplying oxygen is not the
way to relieve this "air hunger" because a dying person
usually cannot benefit from it.

Rather, opening windows, using a fan, allowing space around
the patient's bed and administering morphine or some other
opioid are the best ways to relieve a patient's feelings of
breathlessness and anxiety.

When difficulty swallowing makes eating or drinking
impossible, the question of tube-feeding arises. But dying
patients are usually not hungry, Ms. Pitorak explained, and
"the absence of hydration and nutrition may even induce an
analgesic euphoria" as ketone bodies build up in the blood.
Even a little sugar administered intravenously can
counteract this euphoria, she noted.

Furthermore, efforts to feed a dying patient orally can
result in vomiting, aspiration and a violent, rather than a
peaceful, demise.

Ms. Pitorak observed that while IV fluids can help
terminally ill patients who become delirious from
dehydration, they can also cause swelling, nausea and pain
in patients who are actively dying. But, she added, if
patients on opioids have kidney failure - resulting in
confusion, muscle spasms and seizures from a failure to
clear the blood of the drug - hydration and less medication
may help.

As someone nears the end of life, it is not unusual to turn
inward and become less communicative, even as much as three
months before death. Ms. Pitorak noted that loved ones
should not confuse this withdrawal with rejection. Rather,
she said, it reflects the dying person's need to leave the
outer world behind and focus on inner contemplation.

Experts advise families not to wait until the last hours of
life to communicate with dying patients. In a study of 100
terminally ill cancer patients, 56 were awake one week
before they died, 44 percent were drowsy, but none were
comatose. In the final six hours, however, only 8 percent
were awake, 42 percent were drowsy and half were comatose,
precluding any further communication.

As death approaches, oral muscles relax and secretions that
accumulate in the throat or chest can result in loud,
gurgling breathing sounds - the so-called death rattle -
that can be disturbing. But rather than trying to suction
these secretions, a process that can be discomforting and
is rarely successful, Ms. Pitorak suggests repositioning
the patient to one side, elevating the head and, if
necessary, administering medication to reduce the secretions.

Dying patients may also moan or grunt as they breathe, but
rarely is this a sign of pain, she noted. Appropriate pain
relief should always be provided because a patient in pain
cannot communicate effectively or die peacefully. She added
that there was no evidence that pain-relieving drugs
hastened death.

Patients who ask whether they are dying should be answered
honestly and reassured that those left behind will be well,
which Ms. Pitorak says is more helpful than telling
patients, "You can go now."

But she warned that even when a patient can no longer
respond to sights or sounds, "hearing is the last sense to
leave the body, so one should never say anything near the
patient that one would not want him to hear."

How Doctors Feel

Families often complain about being
abandoned by physicians when nothing more can be done to
reverse a progressive disease and death becomes inevitable.
It may help families to realize that doctors, too,
experience a loss when they can no longer cure a patient.

In The Journal of the American Medical Association two
years ago, Dr. Diane E. Meier and Dr. R. Sean Morrison,
palliative care specialists at Mount Sinai Medical Center
in New York, and Dr. Anthony L. Back of the University of
Washington School of Medicine explained that "a patient's
unimproving health may lead the physician to feel guilty,
insecure, frustrated and inadequate."

"Rather than address these feelings," the article
continued, "physicians may withdraw from patients."

Some doctors may rationalize that their time can be better
spent caring for the living, Dr. Meier said in an
interview.

For example, a friend's husband was being treated for
incurable lung cancer by a leading oncologist. When it
became apparent that the therapy was not helping, the
oncologist, in effect, disappeared, assigning an underling
to the patient. After he died, the oncologist said nothing
to the family, made no call and sent no card, infuriating
my friend and adding to her considerable grief.

When a patient dies, Ms. Pitorak has this advice for the
professionals: Don't abandon the family. Don't leave the
room without expressing your sympathy. And give the family
members as much time as they want with the deceased before
removing the body.

Copyright 2003 The New York Times Company