Another reason why 'living wills' may not always be the best idea...NO one knows when life will end.
God bless!
This STLtoday.com article -- "Hospice and beyond"-- has been sent (by STLtoday)
Hospice and beyond
By Sandra G. Boodman
THE WASHINGTON POST
link to the story.
Here is the story.
For many people, the word "hospice" conjures up the mythical Hotel
California in the hit song of the same name: "You can check out any time
you like, but you can never leave."
But as the experience of humorist Art Buchwald demonstrates, entering a
hospice doesn't invariably mean leaving in a hearse.
When Buchwald refused dialysis for his failing kidneys and checked into the
Washington Home hospice in February 2006, his doctor told him he would
probably live only a few weeks. Yet Buchwald left the hospice five months
later — still very much alive. He spent the summer seeing family and
friends at his summer home on Martha's Vineyard, resumed his column,
celebrated his 81st birthday and wrote a book called "Too Soon to Say
Goodbye."
Although the circumstances of his case are unusual, his departure from
hospice is not.
Every year an estimated 13 percent of the approximately 900,000 Americans
who enter outpatient and inpatient hospice programs around the country are
discharged alive, experts say.
Although predicting how long seriously ill people have to live is
inherently uncertain, some hospice experts say that a dearth of reliable
predictive information can wreak emotional havoc.
Like Buchwald, many discharged hospice patients have exceeded their
doctors' predictions that they were likely to live less than six months, a
requirement for participation in federally funded hospice programs. (Those
who outlive the initial six months can be extended for another six months
with a physician's certification that they are likely to die in the next
half-year; if they outlive that, they are usually discharged as "extended
prognosis" cases.)
Unlike hospitals, whose purpose is typically aggressive treatment using the
latest technology, hospices emphasize pain control and comfort, and they
require that patients forgo therapies to extend life, such as chemotherapy
and dialysis.
Patients are free to leave hospice programs at any time. Some do so to seek
more aggressive treatment, others because they don't like the program or
staff, or to move out of the area. But outliving the initial six-month
projection is becoming more common as elderly patients with chronic,
noncancerous ailments such as congestive heart failure, dementia or lung
disease are increasingly enrolling in hospices.
"It happens all the time," says geriatrician Joanne Lynn, one of the
nation's best-known experts in palliative care and a senior scientist at
the Rand Corp. "The idea is as you get older, you're skating on thin ice —
and no one can tell you how thin it is or when it will crack."
After hospice ...
What happens to many people after they leave hospice is not well known,
experts say, but all agree that Buchwald's experience is scarcely typical.
"It's pretty rare for someone to go on vacation and write a book," says
Christine Turner, clinical services manager for hospice services at the
Washington Home, where the median length of stay in the 13-bed hospice unit
is 16 days.
"Very often, discharged patients and their caregivers still have a chronic,
debilitating disease to deal with," Turner adds. "There are many people who
live another six months or a year, and somebody still has to feed them or
change their diaper."
In his five months in residence, Buchwald was extraordinarily open about
entering a hospice, where he was visited by numerous friends, many of them
famous. He gave interviews in which he joked about having a terminal
illness and openly discussed the prospect of his death.
Buchwald is an anomaly for medical reasons as well. Patients with kidney
failure who don't undergo dialysis rarely last longer than a few weeks.
Some die within hours. Shortly before he checked into the hospice, doctors
had amputated Buchwald's right leg to prevent gangrene, which is often a
complication of long-standing diabetes or high blood pressure.
"His case is unusual — but someone has to win the lottery," says Nicholas
Christakis, an internist and sociologist at Harvard Medical School who has
written extensively about the impact on patients of doctors' end-of-life
prognoses.
"His kidneys were obviously in better shape" than anyone realized,
Christakis said.
How long?
To Christakis, Buchwald's experience illuminates one of medicine's more
glaring unmet needs — an accurate answer to the question asked by many
patients and their families that doctors give reluctantly, if at all: How
long do I have?
Christakis says the subject is neither taught in medical school nor
discussed in textbooks and is rarely studied by researchers.
"Right now they predict by the seat of their pants," he says, because some
physicians fear causing patients greater pain or because they are
personally uncomfortable with the sense of failure a dying patient can
inspire.
"The answer matters horribly," adds Christakis, author of a 1999 book on
the subject, "Death Foretold." He also has published several studies about
prognosis, among them a report in the British Medical Journal in 2000. That
study, which involved 468 terminally ill patients and their physicians,
found that only 20 percent of prognostic estimates were even approximately
accurate while 63 percent were overly optimistic: Patients were told they
had weeks or months to live, but the median length of survival was 24 days.
Seven percent of patients died just hours after arriving at a hospice.
Without reasonably accurate prognostic information, Christakis says,
patients are caught short — unable to put their affairs in order, say
goodbye to loved ones or live their final days as they would wish. Many, he
says, make "terrible decisions" on the basis of erroneous predictions,
undergoing painful treatments such as last-ditch chemotherapy that cause
great suffering for little or no benefit.
Too often, Christakis says, patients "die deaths they deplore in locations
they despise."
"If you have a month to live rather than a year left, you'll make a
different choice," Christakis says. "That's why this is so important.
When out-of-town family members ask him whether they should visit a
terminally ill relative, Christakis says, "I always say 'Yes.' Better a
week too early than a week too late."
His interest in the subject is rooted in painful personal experience. When
he was 6 and living in Washington, Christakis said, his mother, 28, was
diagnosed with Stage IV Hodgkin's disease and told she had three weeks to
live. She died 19 years later.
"I grew up as a boy both detesting and craving diagnostic precision,"
recalls Christakis, who became an oncologist and later a specialist in
palliative medicine.
Asking the right questions
Lynn, president of Americans for Better Care of the Dying, a nonprofit
group based in Alexandria, Va., says the change in the kind of patients
hospices attract also accounts for the growing number of extended-prognosis
discharges.
When the hospice movement was launched in the early 1980s, she notes, most
patients were younger — in their 50s and 60s — and were suffering from
advanced cancer, which is usually more swiftly and predictably lethal.
Today, she notes, many patients are elderly and beset by more chronic
life-ending conditions, such as dementia or heart failure; the date of such
a death is harder to predict accurately.
Patients who want prognostic information, she says, might do better to
reframe the "How long do I have?" question.
"We need to ask our doctors — and our doctors need to answer — questions
like, 'What's the shortest and longest time you think I have?'"?" she says.
The other question patients might want to ask, she says, is, "How is it
likely to happen? Will I have a lot of warning or is it likely to sneak up
on me?"
Dr. Cameron Muir, vice president of medical services at Capital Hospice,
which operates a network of programs in the Washington area, observes that
sometimes patients who have been declining perk up and begin to gain weight
when they enter hospice, buying them another year of life or more.
Sometimes, says Washington Home's Turner, discharged patients inspire mixed
emotions.
"Some people are grateful," she says. "They'll say, 'Oh, great, now we've
got more time to spend with Mom.' Others are exhausted and have gotten
themselves prepared. They'll say, 'What do you mean she's not dying?'"?"
Buchwald alluded to his own psychological adjustment in a column published
Sept. 23.
"There was a tiny part of me that thought I wouldn't die. I ignored that
voice and thought I would soon be gone," he wrote.
"I'm practicing now not being dead."
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Labels: "Living Will", Art Buchwald, Death and Dying, Hospice, Life
