A new study in Health Affairs finds that hospice saves Medicare money and reduces hospital and ICU stays near the end of life. The researchers looked at several lengths of stay (days and weeks) as well as patients who stayed about two to three months (53 to 105 days.) It didn’t look at the very long stays that had been in the spotlight as potentially inappropriate, particularly in for-profit settings. But the authors note that efforts to curtail hospice spending and length of stay “may be misguided.” Instead of working to reduce Medicare hospice spending and creating a regulatory environment that discourages continued growth in hospice enrollment, the Centers for Medicare and Medicaid Services should focus on ensuring that patients’ preferences are elicited earlier in the course of their diseases and that those who want hospice care receive timely referral.
By ABBY GOODNOUGH
The New York Times
SOUTH HADLEY, Mass. — It was early November when Martha Keochareon called the nursing school at Holyoke Community College, her alma mater. She had a proposal, which she laid out in a voice mail message.
“I have cancer,” she said after introducing herself, “and I’m wondering if you’ll need somebody to do a case study on, a hospice patient.”
Perhaps some nursing students “just want to feel what a tumor feels like,” she went on. Or they could learn something about hospice care, which aims to help terminally ill people die comfortably at home.
“Maybe you’ll have some ambitious student that wants to do a project,” Ms. Keochareon (pronounced CATCH-uron) said after leaving her phone number. “Thank you. Bye.”
Kelly Keane, a counselor at the college who received the message, was instantly intrigued. Holyoke’s nursing students, like most, learn about cancer from textbooks. They get some experience with acutely ill patients during a rotation on the medical-surgical floor of a hospital. They practice their skills in the college’s simulation lab on sophisticated mannequins that can “die” of cancer, heart attacks and other ailments. But Ms. Keochareon, 59, a 1993 graduate of Holyoke’s nursing program, was offering students something rare: an opportunity not only to examine her, but also to ask anything they wanted about her experience with cancer and dying.
“She is allowing us into something we wouldn’t ever be privy to,” Ms. Keane said.
So it was that a few weeks later, two first-year nursing students, Cindy Santiago, 26, and Michelle Elliot, 52, arrived at Ms. Keochareon’s tiny house, a few miles from the college. She was bedbound, cared for by a loyal band of relatives, hospice nurses and aides. Both students were anxious.
“Sit on my bed and talk to me,” Ms. Keochareon said. The students hesitated, saying they had been taught not to do that, to prevent transmission of germs. What they knew of nursing in hospitals — “I’m here to take your vitals, give you your medicine, O.K., bye,” as Ms. Santiago put it — was different, after all.
They had come with a list of questions. Ms. Keochareon was suffering from pancreatic cancer, and they had researched the disease ahead of time. They were particularly curious about why she had survived for so long. She had lived with her illness for more than six years — an extraordinary span for pancreatic cancer, which often kills within months after diagnosis.
Why, the students asked, had she managed to keep eating and keep on weight? What was she taking for the pain? How long had it taken for doctors to give her a diagnosis?
“They ask good questions,” Ms. Keochareon said one morning, her lips stained red from the liquid oxycodone she was sipping frequently between doses of other drugs. “I forget half the stuff I learned as a nurse, but I remember everything about pancreatic cancer. Because I’m living it.”
For Ms. Keochareon, this was a chance to teach something about the profession she had found late and embraced — she became a nurse at 40, after raising her daughter and working for years on a factory floor.
“When I was a nurse, it seemed like most of the other nurses were never too happy having a student to teach,” she said, lying in her bedroom lined with pictures of relatives, friends, and herself in healthier times. “I loved it.”
A Last Project
Now, her disease had left her passing the days watching Animal Planet, reading a book about heaven and calling friends — so much that her cordless phone never left her side. She also was planning meticulously for her death, down to the green wool cardigan and embroidered shirt she would be buried in. But Ms. Keochareon wanted more as she prepared to die. The project she envisioned would be not just for students, but also for her — a way to squeeze one more chapter out of life.
Spending time with the dying is not fundamental to nurse training, partly because there are not enough clinical settings to provide the experience. The End-of-Life Nursing Education Consortium, a project of the American Association of Colleges of Nursing, has provided training in palliative care to some 15,000 nurses and nursing instructors around the nation since 2000, focusing not just on pain management but also on how to help terminally ill patients and their families prepare for death.
In addition, some students do rotations with hospice nurses, said Pam Malloy, the project’s director. But Ms. Malloy said that nursing schools still do not focus on end-of-life care nearly as much as they should. “We live in a death-denying society, and that includes nursing,” she said. “People have begun to understand it’s important, but we’re nowhere where we need to be at this point.”
In their conversations with Ms. Keochareon, the students learned that her symptoms had included a burning sensation after eating, for which doctors prescribed an acid blocker. Then came wrenching abdominal pain, which she said doctors dismissed as psychosomatic. She also developed diabetes, another potential sign of pancreatic cancer, and itchiness, possibly from blocked bile ducts.
In 2006, after she had felt sick for several years, a doctor finally ordered a CT scan, and the cancer was diagnosed. Ms. Keochareon was 53 and working at a hospital in Charleston, S.C. She was told that she would probably die within a year or two.
Ms. Santiago and Ms. Elliot were outraged on her behalf. But they were surprised, they said, to learn that instead of anger or shock, the first emotion that Ms. Keochareon felt after her diagnosis was relief because she finally knew what was wrong with her.
The best advice she could give future nurses, Ms. Keochareon said in her reedy voice, was “to just dig a little deeper — you know?”
Ms. Keochareon — who had several unhappy marriages before finding her current husband, Joe — also offered some personal advice. “Don’t yell at each other unless the house is on fire,” she told the students.
Perhaps more than anything, the students were learning about the challenge of managing late-stage cancer pain in a patient who had outlived her prognosis. Ms. Keochareon’s cancer had spread, and there were tumors in her bones and around her throat. By early December, the pain had grown unbearable; Ms. Keochareon was hospitalized for nearly a week while doctors assessed how to control it.
‘Let the Patient Talk’
At her request, the students kept visiting. The sessions provided a brief respite for Ms. Keochareon’s caretakers, including Roy Christensen, a cousin who moved back from Texas last year to help, and Peggy Casey, her favorite aunt. Seeing their exhaustion, the students learned another lesson: “The patient isn’t Martha per se,” Ms. Keane said, “it’s the entire family.”
At Ms. Keane’s urging, the students eventually stopped asking questions and practiced what she called “therapeutic communication” instead.
“The way we’ve learned in school, and haven’t applied enough, is just saying, ‘I’m glad to be with you; you must be frustrated; you look uncomfortable,’” Ms. Keane said. “And let the patient just talk and talk and talk, and see where they’re at.”
On a bright day shortly before Christmas, Ms. Keochareon had less to say than usual as Ms. Santiago perched on her bed.
“You look good,” Ms. Santiago said softly after they had chatted for a bit. Ms. Keochareon was clearly in pain; she mustered a brief smile and closed her eyes.
“I’m ready to go,” Ms. Keochareon told her, opening her eyes again.
Ms. Santiago paused. “Aw,” she said, patting Ms. Keochareon’s hand. “Well…”
“Don’t feel bad,” Ms. Keochareon added.
“I know,” Ms. Santiago said, shaking her look of concern into a smile. “I know.”
She wept after leaving the room. Her father has prostate cancer that has spread, she said; Ms. Keochareon’s declaration had left her thinking about him.
“I kind of wanted to break down,” she said. “I know I’m going to get there with my dad eventually.”
Ms. Santiago said she was afraid of death. Ms. Elliot, having seen it in her job at a local hospital, was less troubled by it. She is a licensed practical nurse who is pursuing a registered nurse degree to advance her career. Still, Ms. Elliot said that when her 81-year-old mother recently asked if she would accompany her to a funeral home to “pick stuff out and get everything ready,” she recoiled.
The new drugs that doctors had prescribed during Ms. Keochareon’s hospital stay failed to keep the pain at bay. She was trying another combination when Ms. Santiago visited again, shortly before Christmas, but with little relief. Ms. Santiago watched, arms tightly crossed, as Ms. Keochareon grimaced and moaned.
“In school they always teach us that pain management is the biggest thing — like, you know, we have to treat the pain,” Ms. Santiago said. “With her it’s like, how do you treat it? Like, you’ve tried everything. What else is there to try?”
She rubbed an anesthetic gel on Ms. Keochareon’s back and, with Ms. Keane’s help, tried to position her hospital bed to be more comfortable. Sunlight streamed through the window into the small, warm room; birds flitted around a feeder just outside. Ms. Keochareon briefly felt better and wanted Ms. Santiago to see her portfolio: a binder that contained her résumé, nursing licenses and letters of recommendation.
Learning from books was good, she said; learning from patients was better.
“When you look back,” Ms. Keochareon said, “you associate a certain person with a certain diagnosis.”
Ms. Santiago planned to return two days later. But Ms. Keochareon seemed to be saying goodbye.
“I’m sorry I went downhill so fast,” she said. “I thought I could teach more.”
Running Out of Time
Later that afternoon, Mr. Christensen, her cousin, called with an update. Ms. Keochareon had asked for an intravenous sedative that would make her sleep, delivering her from the mounting pain. That morning’s visit, it turned out, had been the last.
Ms. Elliot, who had planned to visit Ms. Keochareon after her shift that day, regretted not having asked more about how she felt about death.
“She already seemed to be at that spot where she had that inner peace about it,” Ms. Elliot said that evening. “You want to ask them the questions: So what does it feel like to be dying? Do you know something we don’t know?”
Ms. Keochareon died nine days later, in the evening on Dec. 29. Mr. Christensen had asked her to wait for snow; nearly six inches fell that night, the first of the season. Only her husband was there for her death — a consequence of the weather, but perhaps also part of her plan, Mr. Christensen said.
At the funeral, Ms. Keochareon’s sister Ruth Woodard spoke in her eulogy about “just what prompted Martha to offer her situation up as a teaching tool.” Ms. Keochareon deeply wanted nurses to understand her illness from the patient’s perspective, she said. But that was not all.
“I notice that every time that Martha gave of herself she received far more,” Ms. Woodard said. “In fact, she received a few moments of less pain and I suspect that she received life itself — a few more hours, even days, with purpose.”
When the new semester starts this month, Ms. Santiago and Ms. Elliot will return to more conventional coursework: a pharmacology class, for example, and rotations in maternity and acute care. But they will also present to their classmates what they learned in the little house in South Hadley. Ms. Santiago said she would remember Ms. Keochareon “until the day that I die” — especially her resolve.
“Who in her situation, to be like that, would call up and say, ‘Hey, I want to teach a student about my cancer?’” she said.
By JANE E. BRODY
NYTimes.com 620 Eighth Avenue New York, NY 10018
Copyright 2013 The New York Times Company
When my husband learned he had advanced lung cancer, he didn’t even want to speak to an oncologist about chemotherapy. He saw no point in treatment that could not cure him and might make him feel worse.
Not so, though, for a majority of patients diagnosed with cancers of the lung or colon that have spread well beyond their original site and are currently not curable by any drugs in the medical armamentarium. Most patients with these so-called stage 4 cancers who choose to undergo chemotherapy seem to believe, incorrectly, that the drugs could render them cancer-free.
That is the finding of a recent national study of nearly 1,200 patients with advanced cancers of the lung or colon. Overall, 69 percent of those with stage 4 lung cancer and 81 percent of those with stage 4 colon cancer failed to understand “that chemotherapy was not at all likely to cure their cancer,” Dr. Jane C. Weeks, an oncology researcher at the Dana-Farber Cancer Institute in Boston, and colleagues reported in The New England Journal of Medicine.
When patients do not understand the limitations of such treatment, their consent to undergo it is not truly informed, the authors concluded.
This is not to say that chemotherapy is pointless when cancer is far advanced. Various drugs, some with limited toxicity, can be used as palliatives, perhaps shrinking tumors temporarily to relieve symptoms, slowing the cancer’s growth and prolonging the lives of some patients.
But aggressive chemotherapy when death is but weeks or months in the offing can seriously compromise the quality of patients’ remaining time and may delay their preparations for the end of life, to the detriment of both patients and their families.
“If you think chemotherapy will cure you, you’re less open to end-of-life discussions,” Dr. Weeks said in an interview.
When patients pursue chemotherapy under the false belief that they still have a chance for a cure, it often delays their transition to the comfort care of hospice. When patients spend only a few days or a week in hospice, caretakers don’t have enough time to get to know them and their families and offer the physical, emotional and practical benefits hospice can provide.
Dr. Weeks said continued chemotherapy involves more trips to the hospital, blood draws and X-rays, whereas hospice attends to patients’ symptoms and concerns, and encourages them to leave meaningful legacies. When my husband entered hospice after two miserable weeks in the hospital undergoing palliative radiation, he experienced such relief that he said cheerfully, though in jest, “What if I decide I want to live?” and then enjoyed a treasured last visit with two of his grandchildren.
Communication is a two-way street; doctors and patients alike contribute to patients’ failure to appreciate medicine’s limited ability to treat advanced cancer.
In an editorial accompanying the journal report, Dr. Thomas J. Smith and Dr. Dan L. Longo pointed out that “people have an optimistic bias.” Despite a grim prognosis, this bias prompts patients to believe treatment can cure them.
“Even with repeated discussions, about one-third of patients are not able to say they have a disease from which they will die in a year or so,” Dr. Smith, an oncologist and director of palliative care at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, said in an interview.
“Our job is not to force them into acceptance but to encourage them to plan for the worst while hoping for the best,” Dr. Smith said. “Such patients have better outcomes — less depression and less distress, and they’re more likely to die comfortably at home.”
Cultural and racial factors, and most likely religious beliefs, influence acceptance of the futility of continued treatment, Dr. Weeks said. In her study, nonwhite and Hispanic patients were more likely than whites to believe that chemotherapy could cure them. But surprisingly, patients’ educational level, degree of disability and participation in decision-making were not associated with inaccurate beliefs about chemotherapy.
What can make a huge difference, Dr. Smith said, is how and how often doctors discuss options with patients and describe the potential of continued treatment. He and Dr. Longo suggested that practitioners master “the conversation known as ‘ask, tell, ask,’ which consists of asking patients what they want to know about their prognosis, telling them what they want to know, and then asking, ‘What do you now understand about your situation?’ ”
Among the questions Dr. Smith said doctors should be asking are, “How much do you want to know about your cancer? What do you know about your cancer? Who would you like to include in discussions about your care? Would you like me to write down the important points? What is important to you? What are you hoping for? Who are your other doctors so that I can communicate with them?”
Finally, he said, rather than asking the patient “do you have any questions?” the doctor should ask, “Now that we have discussed this, what is your understanding of your situation?” And rather than having this conversation only once, Dr. Smith said, “It should be repeated at every transition point.”
He and Dr. Longo also recommend that oncologists state the patient’s prognosis at the first visit, appoint someone in the office to discuss advance directives, schedule a hospice-information visit, and offer to discuss prognosis and coping at each transition.
Using this approach, practitioners in the US Oncology Network, a group of community-based oncology physicians, have doubled the time patients spend in hospice, decreased costs, alleviated patients’ symptoms, reduced stress on caregivers and often lengthened survival, Dr. Smith said. Various studies have shown that cancer patients in hospice live weeks to months longer than comparable patients not in hospice care.
When doctors fail to give direct, clear information, Dr. Smith suggests that patients ask, “What is my prognosis, really? What are my options? Can I meet with the palliative care and hospice teams?”
He noted, “This is the hardest conversation for doctors to have. A lot of doctors wait for someone to bring it up.” If the patient does not, then a family member can initiate the needed discussion.
By PAULA SPAN
NYTimes.com 620 Eighth Avenue New York, NY 10018
Copyright 2013 The New York Times Company
I’ve often wondered why more families don’t call hospice when a loved one has a terminal disease — and why people who do call wait so long, often until death is just days away.
Even though more than 40 percent of American deaths now involve hospice care, many families still are trying to shoulder the burden on their own rather than turning to a proven source of help and knowledge. I’ve surmised that the reason is families’ or patients’ unwillingness to acknowledge the prospect of death, or physicians’ inability to say the h-word and refer dying patients to hospice care.
But maybe there’s another reason. A study in the journal Health Affairs recently pointed out that hospices themselves may be turning away patients because of certain restrictive enrollment policies. It’s possible, too, that physicians who know of these policies aren’t referring patients whom the doctors fear wouldn’t qualify.
Surprisingly, this randomized national survey of almost 600 hospice programs represents the first broad inquiry into enrollment practices, though it’s been nearly 30 years since hospice became a Medicare benefit.
Nearly 80 percent of hospice programs, the study found, reported having at least one policy that could restrict access. “It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a geriatrics and palliative care researcher at the Mount Sinai School of Medicine.
What kind of barriers are we talking about? More than 60 percent of hospices won’t accept a patient on chemotherapy, and more than half won’t take someone relying on intravenous nutrition. Many won’t enroll patients receiving palliative radiation or blood transfusions; a few say no to tube feeding.
This made more sense a couple of decades ago, when Medicare developed the regulations requiring patients to forgo curative treatments when they entered hospice. Hospice patients must have a terminal disease, likely to cause death within six months, so such treatments were presumed futile.
But medicine evolves. Now, Dr. Aldridge Carlson pointed out, the distinction between curative and palliative treatments has grown blurry. “It’s increasingly an artificial dichotomy,” she said. “That’s not the reality for most patients today with end-stage disease.”
Chemotherapy, for instance, is often used to shrink tumors that cause pain; radiation can prevent nausea and vomiting for patients with bowel obstructions. Though neither will cure a terminal cancer, as palliative treatments they can improve quality of life. Blood transfusions can help anemic cancer patients feel better, too, at least for a while.
Why, then, would hospices not accept dying people using these treatments? First, these are expensive to provide. The national average Medicare reimbursement for hospice care is just $140 a day, the study notes, and it’s not adjusted to reflect the cost of more complicated regimens. Besides, hospices worry about running afoul of Medicare regulations and being denied even that inadequate reimbursement.
This probably explains why the researchers found that smaller hospices were more likely than large ones to say no to patients receiving such treatments. “If you’re a small hospice caring for someone with many medical issues and the reimbursement doesn’t even cover the care – and then Medicare comes to take it back – that’s a big hit,” Dr. Aldridge Carlson said. Larger organizations with more patients and bigger budgets can better absorb the costs.
One bright note, though, is that almost 30 percent of the hospices studied offer some kind of open access enrollment without insisting on those prohibitions. Much more common in nonprofit hospices (a pity, because the real growth is in for-profit ones), open access usually means enrolling people who don’t yet meet the Medicare criteria, then converting them to Medicare patients as they become eligible.
At Gilchrist Hospice Care in Baltimore, for instance, patients still using chemotherapy, radiation, transfusions and several other treatments can enter what it calls “expanded care,” sometimes also known as “concurrent care.” (At Gilchrist, however, such patients still must meet the six-month hospice eligibility requirement.)
“If you say, ‘You can’t get blood transfusions any more,’ people say, ‘Why would I go with your program?’” said Regina Bodnar, Gilchrist’s clinical director. The hospice’s concurrent program “is not so either/or.”
People who enter hospice care with palliative treatments usually decide to forgo them anyway when they become less effective or more burdensome, Ms. Bodnar said, but “this allows people to make the transition over time.” As the largest hospice program in Maryland, a nonprofit with generous donors, Gilchrist can afford this more flexible, but expensive, approach.Could it be the future of hospice? That would require Medicare to make some changes in eligibility and reimbursement practices — a shift that might bolster Medicare’s solvency, too.
“Hospice saves money because it keeps people out of the hospital,” Dr. Aldridge Carlson said. Even more expensive outpatient treatments, like palliative radiation, are less costly than days spent in intensive care. Adjusting policies to allow more patients into hospice might bring costs down.But as important, it could make the call to hospice a slightly less terrifying prospect and provide more families with the help they need at the end of life. “We need to take down the barriers to hospice care,” Ms. Bodnar said, “and this is one way to do it.