By JANE E. BRODY
Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Tough Decisions
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.
Thursday, August 21, 2008
Monday, May 05, 2008
For the Elderly, Being Heard About Life’s End
May 5, 2008
For the Elderly, Being Heard About Life’s End
By JANE GROSS
HANOVER, N.H. — Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of “slow medicine,” an approach that encourages less aggressive — and less costly — care at the end of life.
Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.
Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.
At the end of her husband’s life, Ms. Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible — even routine — for residents to say “No” to hospitalization, tests, surgery, medication or nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimer’s disease when doctors suspected he also had throat cancer.
A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call “death by intensive care.”
Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal — which offers a continuum of care, from independent living apartments to a nursing home — death and dying is central to the conversation from Day 1.
So it was natural for Ms. Gieg to stay in touch with Joanne Sandberg-Cook, a nurse practitioner there, during her husband’s out-of-town consultation.
“I think that it is imperative that none of this be rushed!” Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.” But the Giegs’ circumstances “demand the time to think about all the what-ifs.”
Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate her husband’s dementia?
“Those are the very questions on my mind, too,” Ms. Gieg replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.
Such decisions are not made lightly, and not without debate, especially in an aging society.
Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.
Most of that money is spent at certain academic medical centers, which offer the most advanced tests, the newest remedies, the most renowned specialists. According to the Dartmouth Health Atlas, which ranks hospitals on the cost and quantity of medical care to elderly patients, New York University Medical Center in Manhattan, for instance, spends $105,000 on an elderly patient with multiple chronic conditions during the last two years of life; U.C.L.A. Medical Center spends $94,000. By contrast, the Mayo Clinic’s main teaching hospital in Rochester, Minn., spends $53, 432.
The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that aggressive treatment for the elderly at acute care hospitals can be “inhumane,” and that once a patient and family were drawn into that system, “it’s really hard to pull back from it.”
“The culture has a built-in bias that everything that can be done will be done,” Dr. Rosenthal said, adding that the pace of a hospital also discourages “real heart-to-heart discussions.”
Beginning that conversation earlier, as they do at Kendal, he said, “sounds like fundamentally the right way to practice.”
That means explaining that elderly people are rarely saved from cardiac arrest by CPR, or advising women with broken hips that they may never walk again, with or without surgery, unless they can stand physical therapy.
“It’s almost an accident when someone gets what they want,” said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. “Personal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.”
The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendal’s founding medical director and author of “My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.”
Among the hard truths, he said, is that 9 of 10 people who live into their 80s will wind up unable to take care of themselves, either because of frailty or dementia. “Everyone thinks they’ll be the lucky one, but we can’t go along with that myth,” Dr. McCullough said.
Ms. Sandberg-Cook agrees. “If you’re never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,” she said. “You need to understand what you face, what you most want to avoid and what you most want to happen.”
Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. “They give me an amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan, Kendal’s second nurse practitioner.
She replies with CPR survival statistics: A 2002 study, published in the journal Heart, found that fewer than 2 percent of people in their 80s and 90s who had been resuscitated for cardiac arrest at home lived for one month. “They about fall out of their chairs when they find out the extent to which we’ll go to let people choose,” Ms. Jordan said.
Kendal, where the average age is 84, is generally not a place where people want heroics. Dr. George Klabaugh, 88, a resident and retired internist, found himself at the center of controversy a few years back when he tried to revive a 93-year-old neighbor who had collapsed from cardiac arrest during a theatrical performance. Dr. Klabaugh, who was unaware that the man had a “Do Not Resuscitate” order, said he regretted his “automatic reaction,” a vestige of a professional training that predisposes most physicians to aggressive care.
Ms. Jordan surveyed Kendal residents and found only one that wanted CPR — Brad Dewey, 92, who dismissed the statistics. “I want them to try anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to say I won’t recover?”
Some of the 400 residents, who pay $120,000 to $400,000 for an entry fee, and monthly rent from $2,000, which includes all health care, pursue no-holds-barred treatment longer than others. One woman, for example, arrived with cardiac and pulmonary disease but was still capable of living in her own apartment. First, she had cataract surgery that left her vision worse. Next, during surgery to replace a worn-out artificial hip, her thigh bone snapped. She spent a year in bed and wound up with blood clots. Then she broke the other leg.
Only then, Ms. Jordan said, did the woman decide to forgo further surgery or hospitalizations. The woman was too ill to be interviewed.
Some of those most in tune with slow medicine are the adult children who watch a parent’s daily decline. Suzanne Brian, for one, was grateful that her father, then 88 and debilitated by congestive heart failure, was able to stop medications to end his life.
“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It was my father’s choice. He could have changed his mind at any time. They slowly weaned him from the meds and he was comfortable the whole time. All he wanted was honor and dignity, and that’s what he got.”
For the Elderly, Being Heard About Life’s End
By JANE GROSS
HANOVER, N.H. — Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of “slow medicine,” an approach that encourages less aggressive — and less costly — care at the end of life.
Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.
Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.
At the end of her husband’s life, Ms. Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible — even routine — for residents to say “No” to hospitalization, tests, surgery, medication or nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimer’s disease when doctors suspected he also had throat cancer.
A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call “death by intensive care.”
Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal — which offers a continuum of care, from independent living apartments to a nursing home — death and dying is central to the conversation from Day 1.
So it was natural for Ms. Gieg to stay in touch with Joanne Sandberg-Cook, a nurse practitioner there, during her husband’s out-of-town consultation.
“I think that it is imperative that none of this be rushed!” Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.” But the Giegs’ circumstances “demand the time to think about all the what-ifs.”
Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate her husband’s dementia?
“Those are the very questions on my mind, too,” Ms. Gieg replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.
Such decisions are not made lightly, and not without debate, especially in an aging society.
Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.
Most of that money is spent at certain academic medical centers, which offer the most advanced tests, the newest remedies, the most renowned specialists. According to the Dartmouth Health Atlas, which ranks hospitals on the cost and quantity of medical care to elderly patients, New York University Medical Center in Manhattan, for instance, spends $105,000 on an elderly patient with multiple chronic conditions during the last two years of life; U.C.L.A. Medical Center spends $94,000. By contrast, the Mayo Clinic’s main teaching hospital in Rochester, Minn., spends $53, 432.
The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that aggressive treatment for the elderly at acute care hospitals can be “inhumane,” and that once a patient and family were drawn into that system, “it’s really hard to pull back from it.”
“The culture has a built-in bias that everything that can be done will be done,” Dr. Rosenthal said, adding that the pace of a hospital also discourages “real heart-to-heart discussions.”
Beginning that conversation earlier, as they do at Kendal, he said, “sounds like fundamentally the right way to practice.”
That means explaining that elderly people are rarely saved from cardiac arrest by CPR, or advising women with broken hips that they may never walk again, with or without surgery, unless they can stand physical therapy.
“It’s almost an accident when someone gets what they want,” said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. “Personal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.”
The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendal’s founding medical director and author of “My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.”
Among the hard truths, he said, is that 9 of 10 people who live into their 80s will wind up unable to take care of themselves, either because of frailty or dementia. “Everyone thinks they’ll be the lucky one, but we can’t go along with that myth,” Dr. McCullough said.
Ms. Sandberg-Cook agrees. “If you’re never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,” she said. “You need to understand what you face, what you most want to avoid and what you most want to happen.”
Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. “They give me an amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan, Kendal’s second nurse practitioner.
She replies with CPR survival statistics: A 2002 study, published in the journal Heart, found that fewer than 2 percent of people in their 80s and 90s who had been resuscitated for cardiac arrest at home lived for one month. “They about fall out of their chairs when they find out the extent to which we’ll go to let people choose,” Ms. Jordan said.
Kendal, where the average age is 84, is generally not a place where people want heroics. Dr. George Klabaugh, 88, a resident and retired internist, found himself at the center of controversy a few years back when he tried to revive a 93-year-old neighbor who had collapsed from cardiac arrest during a theatrical performance. Dr. Klabaugh, who was unaware that the man had a “Do Not Resuscitate” order, said he regretted his “automatic reaction,” a vestige of a professional training that predisposes most physicians to aggressive care.
Ms. Jordan surveyed Kendal residents and found only one that wanted CPR — Brad Dewey, 92, who dismissed the statistics. “I want them to try anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to say I won’t recover?”
Some of the 400 residents, who pay $120,000 to $400,000 for an entry fee, and monthly rent from $2,000, which includes all health care, pursue no-holds-barred treatment longer than others. One woman, for example, arrived with cardiac and pulmonary disease but was still capable of living in her own apartment. First, she had cataract surgery that left her vision worse. Next, during surgery to replace a worn-out artificial hip, her thigh bone snapped. She spent a year in bed and wound up with blood clots. Then she broke the other leg.
Only then, Ms. Jordan said, did the woman decide to forgo further surgery or hospitalizations. The woman was too ill to be interviewed.
Some of those most in tune with slow medicine are the adult children who watch a parent’s daily decline. Suzanne Brian, for one, was grateful that her father, then 88 and debilitated by congestive heart failure, was able to stop medications to end his life.
“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It was my father’s choice. He could have changed his mind at any time. They slowly weaned him from the meds and he was comfortable the whole time. All he wanted was honor and dignity, and that’s what he got.”
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