Kissing Hospice Goodbye
Tuesday, October 3, 2006
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.
Buchwald, whose doctor told him he would probably live only a few weeks after he checked into the Washington Home hospice last February after refusing dialysis for his failing kidneys, left 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 and even signed a contract for a new book, due out in November. Several weeks ago, Buchwald, who is due to turn 81 later this month, returned to his home in the District, where he is finishing the book, titled "Too Soon To Say Goodbye."
While 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; Washington area hospices cite similar statistics. While 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 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," said 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."
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," said 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," added Turner. "There are many people who live another six months or a year, and somebody still has to feed them or change their diaper."
During 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," said 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.
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?
"Doctors suck at foreseeing and foretelling the future," Christakis said, adding that the subject is not taught in medical school or discussed in textbooks and is rarely studied by researchers.
"Right now they predict by the seat of their pants," he said, 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," added Christakis, author of a 1999 book on the subject, titled "Death Foretold." He also has published several studies about prognosis, among them a report in the British Medical Journal in 2000 of 468 terminally ill patients and their physicians. That study 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; 7 percent of patients died just hours after arriving at a hospice.
Without reasonably accurate prognostic information, Christakis said, 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 said, make "terrible decisions" on the basis of erroneous predictions, undergoing painful treatments like last-ditch chemotherapy that cause great suffering for little or no benefit.
Too often, Christakis said, 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 said. "That's why this is so important.
When out-of-town family members ask him if they should visit a terminally ill relative, Christakis said, "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 growing up in the District, Christakis said, his 28-year-old mother 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," recalled Christakis, who became an oncologist and later a specialist in palliative medicine.
Reframing the Question
Lynn, president of Americans for Better Care of the Dying, a nonprofit group based in Alexandria, said that the evolution 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 noted, most patients were younger -- in their fifties and sixties -- and were suffering from advanced cancer, which is usually more swiftly and predictably lethal.
Today, she noted, many patients are elderly and beset by more chronic life-ending conditions, such as dementia or heart failure; the date of their death is harder to predict accurately.
"The usual course now is to die within a few weeks [of a medical crisis] after having been stable in bad health, often for several years," Lynn said.
Predictions, she added, are easier to make for groups of people with the same illness, rather than for individuals.
Patients who want prognostic information, she said, 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 said. The other question patients might want to ask, she said, is, "How is it likely to happen? Will I have a lot of warning or is it likely to sneak up on me?"
Cameron Muir, an internist who is vice president of medical services at Capital Hospice, which operates a network of programs in the Washington area that serve 4,500 people annually, observed that sometimes patients who have been declining perk up and begin gaining weight when they enter hospice, buying them another year of life or more.
Sometimes, said Washington Home's Turner, discharged patients inspire mixed emotions.
"Some people are grateful," she said. "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." ·