Most cancer doctors avoid saying it's the end
CHICAGO (AP) - 06/15/08
He began gently. The chemotherapy is not helping. The cancer is
advanced. There are no good options left to try. It would be good
to look into hospice care.
"At first I was really shocked. But after, I thought it was a
really good way of handling a situation like that," said Mulligan,
who now is making a "bucket list" - things to do before she dies.
Top priority: getting her busy sons to come for a weekend at her
Washington, D.C., home.
Many people do not get such straight talk from doctors, who
often think they are doing patients a favor by keeping hope alive.
New research shows they are wrong.
Only one-third of terminally ill cancer patients in a new,
federally funded study said their doctors had discussed end-of-life
care.
Surprisingly, patients who had these talks were no more likely
to become depressed than those who did not, the study found. They
were less likely to spend their final days in hospitals, tethered
to machines. They avoided costly, futile care. And their loved ones
were more at peace after they died.
Convinced of such benefits and that patients have a right to
know, the California Assembly just passed a bill to require that
health care providers give complete answers to dying patients who
ask about their options. The bill now goes to the state Senate.
Some doctors' groups are fighting the bill, saying it interferes
with medical practice. But at an American Society of Clinical
Oncology conference in Chicago earlier this month, where the
federally funded study was presented, the society's president said
she was upset at its finding that most doctors were not having
honest talks.
"That is distressing if it's true. It says we have a lot of
homework to do," said Dr. Nancy Davidson, a cancer specialist at
Johns Hopkins University in Baltimore.
Doctors mistakenly fear that frank conversations will harm
patients, said Barbara Coombs Lee, president of the advocacy group
Compassionate Choices.
"Boiled down, it's 'Talking about dying will kill you,"' she
said. In reality, "people crave these conversations, because
without a full and candid discussion of what they're up against and
what their options are, they feel abandoned and forlorn, as though
they have to face this alone. No one is willing to talk about it."
The new study is the first to look at what happens to patients
if they are or are not asked what kind of care they'd like to
receive if they were dying, said lead researcher Dr. Alexi Wright
of the Dana-Farber Cancer Institute in Boston.
It involved 603 people in Massachusetts, New Hampshire,
Connecticut and Texas. All had failed chemotherapy for advanced
cancer and had life expectancies of less than a year. They were
interviewed at the start of the study and are being followed until
their deaths. Records were used to document their care.
Of the 323 who have died so far, those who had end-of-life talks
were three times less likely to spend their final week in intensive
care, four times less likely to be on breathing machines, and six
times less likely to be resuscitated.
About 7 percent of all patients in the study developed
depression. Feeling nervous or worried was no more common among
those who had end-of-life talks than those who did not.
That rings true, said Marshall, who is Mulligan's doctor at
Georgetown University's Lombardi Comprehensive Cancer Center.
Patients often are relieved, and can plan for a "good death" and
make decisions, such as do-not-resuscitate orders.
"It's sad, and it's not good news, but you can see the tension
begin to fall" as soon as the patient and the family come to grips
with a situation they may have suspected but were afraid to bring
up, he said.
From an ethics point of view, "it's easy - patients ought to
know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer
Center in Seattle. "Talking about prognosis is where the rubber
meets the road. It's a make-or-break moment - you earn that trust
or you blow it," he told doctors at a training session at the
cancer conference on how to break bad news.
People react differently, though, said Dr. James Vredenburgh, a
brain tumor specialist at Duke University.
"There are patients who want to talk about death and dying when
I first meet them, before I ever treat them. There's other people
who never will talk about it," he said.
"Most patients know in their heart" that the situation is
grim, "but people have an amazing capacity to deny or just keep
fighting. For a majority of patients it's a relief to know and to
just be able to talk about it," he said.
Sometimes it's doctors who have trouble accepting that the end
is near, or think they've failed the patient unless they keep
trying to beat the disease, said Dr. Otis Brawley, chief medical
officer at the American Cancer Society.
"I had seven patients die in one week once," Brawley said. "I
actually had some personal regrets in some patients where I did not
stop treatment and in retrospect, I think I should have."
James Rogers, 67 of Durham, N.C., wants no such regrets.
Diagnosed with advanced lung cancer last October, he had only one
question for the doctor who recommended treatment.
"I said 'Can you get rid of it?' She said 'no,"' and he
decided to simply enjoy his final days with the help of the hospice
staff at Duke.
"I like being told what my health condition is. I don't like
beating around the bush," he said. "We all have to die. I've had
a very good life. Death is not something that was fearful to me."
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On the Net:
Institutes of Health, hospice information:
http://tinyurl.com/3ngrvg
Cancer Society, hospice care: http://tinyurl.com/4gvf2g