What Makes the End-of-Life Experience Peaceful?

MONDAY, July 9 (HealthDay News) — Dying patients face their
final days better if they are not in the hospital, not on a feeding tube
or chemotherapy and feel that they have a trusting relationship with their
doctor, a new survey of terminally ill cancer patients reveals.

Other factors that helped them find peace in the end, the survey
showed, were prayer, meditation, a pastor’s visit and freedom from
excessive worry or anxiety.

The survey involved about 400 U.S. patients with advanced cancer who
were told they had less than six months to live, and their closest
caregiver, usually a spouse. The cancer patients, whose average age was
59, were surveyed an average of four months before they died. Their
caregivers were then surveyed about the end-of-life experience.

Several factors determined how the patients and their caregivers rated
their quality of life at the end. Among the most important: not dying in
the intensive care unit or hospital; not having to endure aggressive,
life-prolonging treatments at the end, such as feeding tubes or
chemotherapy; and feeling their doctor saw them as a whole person and
treated them with respect, said lead study author Holly Prigerson,
director of the Center for Psychosocial Epidemiology and Outcomes Research
at Dana-Farber Cancer Institute in Boston.

“What the results suggest is that attention to patients’ psychosocial
needs, their spiritual needs, their comfort, their worries, their need to
not be abandoned by their health care team and to feel valuable and
significant are the things that matter most to the patients and their
families,” Prigerson added.

“It’s not . . . how much chemo or what procedures are performed or
heroics. In fact, it’s the opposite. It’s the human connection that seemed
to be the most important [for] good quality of end-of-life care,” she
said.

The research was published online July 9 in the Archives of Internal
Medicine
.

Oncologists tend to focus on curing patients, but many are less
comfortable dealing with end-of-life issues, the experts said. The
findings show that even when a cure is no longer possible, patients still
want to know their doctors care.

“When patients aren’t curable anymore, a lot of physicians feel there
is very little they have to offer their patients, but what these results
suggest is the opposite,” Prigerson said. “In fact, physicians are one of
the most important influences on the quality of life of their patients —
by being there, being emotional available, being present and not
emotionally abandoning someone because you can’t cure them of their
cancer.”

Alan Zonderman, a senior investigator at the U.S. National Institute on
Aging, said the study is important because it includes actual data, rather
than anecdotes, about what matters to patients and their families at the
end of life.

“It means that we can give physicians some real guidance based on some
genuine evidence from patients and people who are truly close to the
patient,” said Zonderman, who was the co-author of an accompanying
editorial in the journal.

The findings also illustrate how important it is for physicians who
treat cancer patients to be able to “shift gears” and focus on the quality
of a patient’s last days when a cure is no longer possible, said Dr.
Michele Evans, senior scientist and deputy scientific director at the
U.S. National Institute on Aging.

Having that conversation isn’t easy, Evans added. “We’re good at
telling patients: ‘The nausea, the hair loss, the vomiting, it’s worth it,
because we are going to get you to a cure,'” Evans said. “But in the
course of some diseases, we are not going to get there.”

That’s when it’s important for physicians to have a strong, open
relationship with patients, to be able to tell them the truth, and to be
there going forward, she added.

Another key finding was the importance patients placed on “choosing
where they were going to die and how they would spend the last time
available to them,” Evans said.

“There is no way to make an [intensive care unit] a pleasant
environment,” Evans said. If cancer patients are spending their last days
there, “it often means the care has gotten out of control, and is no
longer based on quality of life. It’s preservation of life at the cost of
quality of life,” she added.

To make sure those end-of-life needs are met, experts say cancer
patients should have documents such as advance directives, living wills
and durable power of attorney for health care, which appoints someone to
make health care decisions should you no longer be able to.

But equally as important, Evans said, is for cancer patients to make
sure they discuss their wishes with their family and their physicians.

“It first has to start with a conversation with your immediate family,
and you have to understand the dynamics of your family, so that when you
may be too ill to make decisions, that they understand how you would like
things to be done,” Evans said.

“So many times, we never had that conversation. Families will say, ‘We
don’t know what to do, just treat him. He’s a fighter.’ This person in
life may be a fighter. But what happens if we are going to lose the fight?
Do you want to go down fighting, or do you want to have time to feel not
so bad and to have us focus on the quality of your life?” Evans continued.
“We as Americans, we don’t have that conversation frequently enough, and
we don’t have it with our physicians.”

More information

The Hospice Foundation of America has more on dying
and quality of life at the end
.

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