STLtoday article: Hospice and beyond from WICatholic1@gmail.com

Another reason why 'living wills' may not always be the best idea...NO one knows when life will end.

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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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