The following is a story that ran in the Hartford Courant, as well as a number of other McClatchy papers. I actually saw it a few weeks ago, intended to save it, and then spaced it off. It re-appeared today in my Google Alerts.
I didn’t post this article to the Hermansky-Pudlak Syndrome group because I really wasn’t sure everyone was up to talking about this issue. I thought part of the group would find it depressing, although personally I find it quite hopeful.
It hit home with me because several of the points made really match up with what I’ve observed of the experiences of HPS friends who have become very ill, or even died, of HPS.
First, life expectancy predictions are often wrong. With good care, lots of support, and things to look forward to in life, lots of people are able to battle their disease process longer than anyone expects. The second thing that really stood out for me was the point made that many people survive hospice because with quality intervention, their health actually improves, even if it’s never perfect again.
Many people with advanced pulmonary fibrosis because of their HPS are faced with a decision – they can either pursue a lung transplant or they can choose not to do that. Unfortunately for many, the resources given to help make their last days better could actually be what they need to fight and live, as opposed to die. This is especially true because many people with HPS have battled chronic illness for years and their resources are generally quite depleted, if they ever existed at all.
But I suppose it’s not news to anyone that poor people don’t always get the best medical care. Anyway, here’s the article.
Life After Hospice Care Thousands Check Out, After Expecting To Die
By FRANK GREVE
McClatchy Newspapers
July 18 2006
Thousands of patients who check into hospices 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, 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. "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. But somewhere between 5,000 and 20,000 hospice survivors a year, by most estimates, live on with evident satisfaction.
Consider:
· 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.
· Judy Murray, 59, of Bethlehem, Pa., a retired occupational therapist, is, to her doctors' awe, surviving stage four ovarian cancer diagnosed in 2004. "If it ever comes back, I know where you are," Murray told Ruth Fillebrown, clinical director of Lehigh Valley Hospice, when they met recently at a concert.
· Gloria Thomas, 57, Franklin, Tenn., who has pulmonary fibrosis, 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, 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."
Hospice survival at its best is hardly easy living, however. Chronic diseases persist, even if they're not life-threatening for the moment. 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 4 out of 5 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. That is, for a patient who actually died in 30 days, 80 percent of doctors predicted 20 days or less or 40 days or more.Specialists and non-specialists proved almost equally inaccurate, the researchers found, and the better doctors knew the patient, the bigger their errors, mostly in the optimistic direction.
"Doctors in general are optimistic," said Christakis.Their inaccuracy was less of a problem in the '70s and '80s, the early days of hospices in the United States, when three-quarters or more of the clients were cancer patients. Their deaths followed a relatively predictable line downward from the date when treatment failed.
When the first hospice program in the country began in Connecticut in 1974, 95 percent of treated patients had cancer, said Louis Gonzalez, administrator for Connecticut Hospice Institute, in Branford. Today, however, 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. "The valleys are deeper and deeper over time, the peaks are lesser, but predicting which valley will end in death is very difficult."
Accurate prognoses matter because 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.Those who survive for more than six months - non-cancer patients in disproportionate numbers - are kept on if doctors agree that they probably won't live for another six. Those whose conditions improve and stabilize to the point that they're deemed likely to survive for at least six months are normally discharged.
Of the estimated 120 patients the Connecticut Hospice hospital admits each month, 15 percent to 20 percent are discharged, Gonzalez said."When it first started back in '74, the idea was, you die. ... It was a way to die with dignity," he said of the typical patient's expectations when entering hospice. "That has changed. You come here to have your acute symptoms treated, so we can put you back home again."
Gonzalez said he thinks the number of hospice survivors will increase. Why there are so many survivors remains something of a mystery.One theory is that many patients only appear to be dying. Actually, they're "suffering from the dwindles," as True Ryndes, head of a coalition called the National Hospice Work Group, put it. "The patient isn't in decline; their caregiving is in decline."With the focused attention of hospice doctors, nurses, social workers and spiritual counselors, patients get their medications adjusted and take them regularly. They get painkillers adequate to assure a night's sleep. They eat regularly, and their loved ones get some help and relief."Often, just taking away the pain and enabling them to sleep through the night gives people a second wind," said Fillebrown, clinical director of the Lehigh Valley Hospice in Allentown, Pa.
Another theory of unexpected survivals is that pending death brings out the curative power of loving family and friends. Hospice personnel are convinced that it works, and so is Sheldon Cohen, a sociologist at Carnegie Mellon University in Pittsburgh who has studied the relationship between emotions and health."There's no question that people who are suffering adversity do better with social support," said Cohen, citing a 1989 study by health psychologists James Kulik and Joni Mayer. They found that male coronary bypass patients who had frequent visitors used less pain medication and recovered more quickly. Married patients also did better.
Courant staff writer Jane Porter contributed to this story.
I didn’t post this article to the Hermansky-Pudlak Syndrome group because I really wasn’t sure everyone was up to talking about this issue. I thought part of the group would find it depressing, although personally I find it quite hopeful.
It hit home with me because several of the points made really match up with what I’ve observed of the experiences of HPS friends who have become very ill, or even died, of HPS.
First, life expectancy predictions are often wrong. With good care, lots of support, and things to look forward to in life, lots of people are able to battle their disease process longer than anyone expects. The second thing that really stood out for me was the point made that many people survive hospice because with quality intervention, their health actually improves, even if it’s never perfect again.
Many people with advanced pulmonary fibrosis because of their HPS are faced with a decision – they can either pursue a lung transplant or they can choose not to do that. Unfortunately for many, the resources given to help make their last days better could actually be what they need to fight and live, as opposed to die. This is especially true because many people with HPS have battled chronic illness for years and their resources are generally quite depleted, if they ever existed at all.
But I suppose it’s not news to anyone that poor people don’t always get the best medical care. Anyway, here’s the article.
Life After Hospice Care Thousands Check Out, After Expecting To Die
By FRANK GREVE
McClatchy Newspapers
July 18 2006
Thousands of patients who check into hospices 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, 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. "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. But somewhere between 5,000 and 20,000 hospice survivors a year, by most estimates, live on with evident satisfaction.
Consider:
· 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.
· Judy Murray, 59, of Bethlehem, Pa., a retired occupational therapist, is, to her doctors' awe, surviving stage four ovarian cancer diagnosed in 2004. "If it ever comes back, I know where you are," Murray told Ruth Fillebrown, clinical director of Lehigh Valley Hospice, when they met recently at a concert.
· Gloria Thomas, 57, Franklin, Tenn., who has pulmonary fibrosis, 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, 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."
Hospice survival at its best is hardly easy living, however. Chronic diseases persist, even if they're not life-threatening for the moment. 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 4 out of 5 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. That is, for a patient who actually died in 30 days, 80 percent of doctors predicted 20 days or less or 40 days or more.Specialists and non-specialists proved almost equally inaccurate, the researchers found, and the better doctors knew the patient, the bigger their errors, mostly in the optimistic direction.
"Doctors in general are optimistic," said Christakis.Their inaccuracy was less of a problem in the '70s and '80s, the early days of hospices in the United States, when three-quarters or more of the clients were cancer patients. Their deaths followed a relatively predictable line downward from the date when treatment failed.
When the first hospice program in the country began in Connecticut in 1974, 95 percent of treated patients had cancer, said Louis Gonzalez, administrator for Connecticut Hospice Institute, in Branford. Today, however, 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. "The valleys are deeper and deeper over time, the peaks are lesser, but predicting which valley will end in death is very difficult."
Accurate prognoses matter because 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.Those who survive for more than six months - non-cancer patients in disproportionate numbers - are kept on if doctors agree that they probably won't live for another six. Those whose conditions improve and stabilize to the point that they're deemed likely to survive for at least six months are normally discharged.
Of the estimated 120 patients the Connecticut Hospice hospital admits each month, 15 percent to 20 percent are discharged, Gonzalez said."When it first started back in '74, the idea was, you die. ... It was a way to die with dignity," he said of the typical patient's expectations when entering hospice. "That has changed. You come here to have your acute symptoms treated, so we can put you back home again."
Gonzalez said he thinks the number of hospice survivors will increase. Why there are so many survivors remains something of a mystery.One theory is that many patients only appear to be dying. Actually, they're "suffering from the dwindles," as True Ryndes, head of a coalition called the National Hospice Work Group, put it. "The patient isn't in decline; their caregiving is in decline."With the focused attention of hospice doctors, nurses, social workers and spiritual counselors, patients get their medications adjusted and take them regularly. They get painkillers adequate to assure a night's sleep. They eat regularly, and their loved ones get some help and relief."Often, just taking away the pain and enabling them to sleep through the night gives people a second wind," said Fillebrown, clinical director of the Lehigh Valley Hospice in Allentown, Pa.
Another theory of unexpected survivals is that pending death brings out the curative power of loving family and friends. Hospice personnel are convinced that it works, and so is Sheldon Cohen, a sociologist at Carnegie Mellon University in Pittsburgh who has studied the relationship between emotions and health."There's no question that people who are suffering adversity do better with social support," said Cohen, citing a 1989 study by health psychologists James Kulik and Joni Mayer. They found that male coronary bypass patients who had frequent visitors used less pain medication and recovered more quickly. Married patients also did better.
Courant staff writer Jane Porter contributed to this story.
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