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Many Hospice Patients Are Beating The Odds


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Many hospice patients are beating the odds

Thousands who check into hospices for end-of-life care live months beyond when they're expected to die.

Frank Greve and Lora Pabst, McClatchy News Service and Star Tribune

Last update: July 22, 2006 – 8:03 PM

Tom Starkovich's family held three vigils for him when they thought he would die in hospice care.

But Starkovich, 91, has outlived doctors' expectations each time. Now living in a nursing home in Minneapolis, he has come to represent an increasingly common breed of hospice patient: Thousands of patients who check into hospices or are assigned hospice care expecting to die are winning reprieves instead.

Sometimes attention from loved ones and quality care from hospice staff turn things around. Or doctors guess wrong when they predict that death is near. And sometimes long-odds medical miracles happen.

Whatever the reason, roughly 100,000 U.S. hospice patients will win new leases on life this year. That number, which is based on Centers for Disease Control and Prevention figures, is expected to increase as baby boomers age. It's a trend that poses exotic challenges -- some wrenching, some magnificent -- for hospices and for hospice patients and their families.

"We're trained to help patients close out things," explained Betty Waters, a social worker at Alive Hospice in Nashville, Tenn. "So when they say, 'I'm going to fight this,' I'm used to thinking that that means they're in denial. It's a very awkward situation."

What happens to hospice survivors is largely a matter of conjecture. About a third die within six months of their release, according to one study. Large numbers of the rest go to nursing homes because, while not at death's door, they continue to suffer from chronic diseases, often Alzheimer's or other forms of dementia.

Living proof

But somewhere between 5,000 and 20,000 hospice survivors a year, by most estimates, live on with evident satisfaction:

• Brian Dickinson, an editorial writer for the Providence Journal in Rhode Island, quit hospice and, when totally paralyzed by Lou Gehrig's disease except for his eyes, kept writing commentaries by blinking into a TV camera linked to his computer keyboard. "Brian knew his disease was fatal, but he always believed it'd be fatal later," said his widow, Barbara. He died at 64, five years longer than he'd been expected to live.

• Gloria Thomas, 57, of Franklin, Tenn., a pulmonary fibrosis sufferer, had given away her beloved cat, Clyde, conferred with her minister, and checked into hospice. But when her visiting husband told her that her time was running out, Thomas ejected him from her room and later divorced him. "Whenever you have anything negative around you, you have to get rid of it," she explained six years later.

• Art Buchwald, 81, the humor columnist, is enjoying another summer on Martha's Vineyard, the resort island offshore of Cape Cod, after his kidneys proved too robust to fail. Buchwald ditched plans to have singer Carly Simon, a Vineyard crony, perform at his funeral. Instead she's to serenade him with the sweet old ditty that begins, "I'll be seeing you in all the old familiar places."

Starkovich first received hospice care in Florida a year ago after he was in a car accident and then broke his hip. Doctors thought complications from the hip surgery would end his life, but he recovered. He moved to Minneapolis, living in the nursing home unit of Walker Methodist Health Center, where his daughter, Lynn, is the chief executive officer.

In October, he came down with pneumonia and was assigned hospice care in the nursing home. Because he was expected to live only a matter of days, hospice care was mostly aimed at comforting him and preparing him to die.

Again Starkovich recovered, only to repeat the process in March when he again came down with pneumonia and again recovered.

"It isn't that easy sometimes to be comfortable in a hospital," said Starkovich, who is mostly bed-ridden. He thinks hospice services such as massage have extended his life. "I could never live any other way," he said.

Among other things, hospice care has given Starkovich more time to visit with his three grandchildren and three great-grandchildren.

Caren Gaytko, manager of North Memorial Hospice and Home Care, attributed the phenomenon of surviving hospice care partly to a change in patient illnesses, from cancer to diseases such as Alzheimer's, which aren't as predictable.

But hospice survival, even at its best, is not easy living because chronic diseases persist. And surviving costs more, since Medicare covers hospice care without co-pays. Illusions of immortality are shattered.

The clock ticks.

Buchwald likens surviving hospice to booking a seat on a plane, having the flight canceled, and ending up on standby indefinitely.

It was Buchwald's internist's inaccurate prediction that he had just weeks to live that got him into hospice.

Such errors are very common, according to Dr. Nicholas Christakis, a sociologist and internist at Harvard Medical School who has studied doctors' prognoses for hundreds of terminally ill patients. In four out of five cases, Christakis and co-researcher Elizabeth Lamont found, doctors' estimates of how long a patient would live were wide of the mark by at least a third.

Today nearly half of hospice patients are in for heart, lung, kidney or liver failure, or forms of dementia. For all of these, "the line toward death is like a roller coaster," said Mark Cohen, vice president of communications for VITAS Innovative Hospice Care, a Miami-based for-profit system.

Accurate prognoses matter because in order to gain in-home hospice services or admission to a hospice under Medicare and Medicaid rules, both the patient's and the hospice's doctor must agree that the patient won't survive six months. In actuality, about two-thirds of the roughly 1.2 million patients who enter hospices annually die within 30 days, according to the National Center for Health Statistics.

Frank Greve is a correspondent in the McClatchy Washington bureau. He can be reached at fgreve@mcclatchy.com Star Tribune reporter Lora Pabst can be reached at lpabst@startribune.com

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