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365 Gay: News
Few Americans make end-of-life wishes known
11.12.2009 11:18am EST
(Fort
Lauderdale, Fla.) Lillian Landry always said she wasn’t afraid to die.
So when death came last week, the 99-year-old was lying peacefully in a
hospice with no needles or tubes. Her final days saw her closest friend
at her side and included occasional shots of her favorite whiskey,
Canadian Mist.
Landry
is an exception. Unlike most Americans, she made her end-of-life
decisions years ago: no heroic measures to save her and even
instructions on the bar where mourners should gather.
The health
overhaul bill that narrowly passed the House on Saturday includes a
provision to nudge more people to confront such choices: It would pay
for end-of-life counseling for Medicare patients.
Supporters say
counseling would give patients more control and free families from
tortuous decisions. Critics have warned it could lead to government
“death panels.” What few on either side note is that counseling could
lead more people to choose less intensive care when they’re dying, and
ultimately trim government-funded health bills.
Hospice care has
grown from about 25,000 patients in 1982, when Congress approved
coverage under Medicare, to 1.45 million people in 2008. It’s for
patients who have a prognosis of no more than six months – and it
ranges from in-home care to stand-alone centers to special wings in
hospitals. It does nothing to artificially lengthen or shorten life,
focusing mostly on a patient’s comfort.
People on Medicare
account for the vast majority of U.S. deaths, and care in the last year
of life accounts for roughly a quarter of Medicare’s budget. So
increased use of hospice could mean sizable savings for the government,
particularly if patients enter it sooner.
A 2007 study published
in the journal Social Science and Medicine found that among Medicare
patient deaths, those who used hospice saved taxpayers an average
$2,309 over their last year. In some cases, the savings were as much as
$7,000, depending on the illness and length of hospice stay.
Still,
only about 39 percent of Americans who died last year were in hospice.
The average patient spent a little more than two months under that
care; about a third moved to hospice only in the last week of life.
“It’s
significantly underutilized. People are referred very late,” said Dr.
Richard Payne, a Duke University professor who heads the school’s
Institute on Care at the End of Life.
“Our culture just doesn’t
tolerate talking about death and dying. And the minute you even start
talking about having conversations with a doctor, it’s immediately
pejoratively labeled as ‘You’re trying to kill me.’”
That
perception is precisely what got affixed to the counseling measure in
the House bill. Even though the legislation specifies counseling
wouldn’t force patients to limit efforts to keep them alive, and even
with the support of the American Medical Association, AARP and others,
suspicion has lingered, encouraged by conservative voices including
Sarah Palin.
Dr. Jim Small, a Denver pathologist who belongs to
the Christian Medical and Dental Associations, said he feared the
provision would be twisted into something more intrusive if bureaucrats
lay out the details.
“It’s incredible micromanagement,” Small
said. “End-of-life discussions are part of normal, good patient care,
but there’s no reason for it to be in the bill.”
Even when
patients do opt for less invasive, potentially cheaper care, there are
limitations. Predicting when someone will die is notoriously inexact.
Terminal patients can live for years. So deciding on less intensive
treatment isn’t always an easy choice.
“The concept of the last
year of life is entirely retrospective,” said Donald Taylor, a public
policy professor at Duke who was the lead author of the study looking
at hospice’s cost savings. “It’s just not that clear when people are
dying.”
Among those for whom death is clearly imminent, though, advocates argue hospice offers a more compassionate approach.
Dr.
Joel Policzer is medical director for VITAS Innovative Hospice Care,
which runs the hospice wing at Florida Medical Center where Landry
spent her final days. Many of the patients have been hospitalized
repeatedly, often getting arguably unnecessary tests before finally
succumbing. He characterizes the American medical perspective as “Do
something! Do something! Do something!”
Often, Policzer says, a dying elderly patient may have wanted less invasive care. But it doesn’t happen.
“It
doesn’t happen because people are never asked. If they were, people
would tell you they want to die at home in bed, surrounded by their
family, their friends and their pets,” he said. “People who are dying
do not need to have needles shoved in them two or three times a day.
It’s not going to make a difference.”
On a recent morning,
Policzer stopped to check on 76-year-old Walter Norton, who lay frail
and silent in his hospice bed. He had made numerous trips to the
emergency room before his family turned to hospice. He had dementia and
was suffering from pneumonia and dehydration.
No one’s sure exactly what Norton would have wanted. “He wasn’t asked, ‘What do you want to have done?’” Policzer said.
Five days later, Norton was dead.
Landry, on the other hand, had thought about life’s ending years ago.
Four
days before she died, her closest friend, Joe Takach, was sitting in a
recliner beside her. Her head was tilted, her mouth open and her left
hand lay across her waist atop a crisp white sheet.
End-stage
heart disease brought hospice care to Landry’s home in July; she
entered the inpatient unit in late October. Until then, she had
continued her routine, going to church every week, making coffee in the
morning, sitting for hours in a swivel chair watching birds and
squirrels from her bedroom window. She’d make four-course dinners and
sometimes stay up talking with Takach until 2 a.m.
Landry had
moved in with Takach after Hurricane Wilma destroyed her home four
years ago; the 49-year-old retired police dispatcher said it was like
having a grandmother again.
He called her the Energizer Bunny. She called herself a tough New Englander.
“You
OK?” Takach asked her in one of their final meetings. “I’m OK,” she
said in a soft, garbled voice, her eyes opened just a slit.
“You don’t have any pain?” he asked. “No,” she said.
Had Landry not made her wishes known, she likely would have been subjected to CT scans, blood tests, IVs and a feeding tube.
“She would not want that,” Takach said. “She would say, ‘Enough!’”