Complete article
by Ken Murray
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
....But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Monday, December 12, 2011
Wednesday, October 5, 2011
Association Between Advance Directives and Medicare End-of-Life Expenditures
Medicare patients with advance directives specifying limits in treatment who lived in regions with higher levels of end-of-life spending were less likely to have an in-hospital death, averaged significantly lower end-of-life Medicare spending and had significantly greater odds of hospice use than decedents without advance directives in these regions, according to a study in the October 5 issue of JAMA.
Patients can use advance directives to document their preferences for the use or avoidance of life-sustaining treatments (living wills). "Although advance directives have become more common in the past few decades, evidence is mixed on whether they change the course of treatment provided near the end-of-life," according to background information in the article.
"The wide variation in end-of-life Medicare expenditures across geographic regions suggests that default treatment levels also vary regionally. Advance directives specifying limits at the end-of-life may have their greatest impact in regions where the norms are to provide very high-intensity end-of-life treatment."
Lauren Hersch Nicholas, Ph.D., M.P.P., of the University of Michigan, Ann Arbor, and colleagues conducted a study to analyze the relationship of advance directives for Medicare patients with the cost and aggressiveness of end-of-life treatment in geographic regions across the United States. The researchers collected survey data from the Health and Retirement Study for 3,302 Medicare beneficiaries who died between 1998 and 2007 linked to Medicare claims and the National Death Index. Various models examined associations between advance directives, end-of-life Medicare expenditures, and treatments by level of Medicare spending in the decedent's hospital referral region. The average age of the beneficiaries at death was 83 years; 56 percent were women. Regions were characterized by quartiles of end-of-life spending averaged across a 7-year period. Decedent's region intensity was determined by zip code of residence.
Among the findings of the researchers, decedents residing in low spending regions were more likely to have a treatment-limiting advance directive than decedents in high-spending regions (42 percent vs. 36 percent). In high-spending regions, adjusted spending on patients with a treatment-limiting advance directive was $33,933, whereas adjusted spending for patients without an advance directive was $39,518 (difference, -$5,585). Having a treatment-limiting advance directive was not associated with differences in aggregate end-of-life spending for decedents in low- and medium-spending regions.
In high-spending regions, patients without an advance directive had a 47 percent adjusted probability of in-hospital death, whereas those with an advance directive had a 38 percent probability of in-hospital death. "The equivalent results for in-hospital death for those in medium-spending regions were 42 percent without an advance directive and 37 percent with an advance directive. In high-spending regions, patients without a limiting advance directive had a 24 percent adjusted probability of hospice use, whereas those with a directive had an adjusted probability of hospice use of 41 percent," the authors write.
Advance directives were associated with higher adjusted probabilities of hospice use in high- and medium-spending regions, but not in low-spending regions.
"Advance directives are associated with important differences in treatment during the last 6 months of life for patients who live in areas of high medical expenditures but not in other regions. This suggests that the clinical effect of advance directives is critically dependent on the context in which a patient receives care. Advance directives may be especially important for ensuring treatment consistent with patients' preferences for those who prefer less aggressive treatment at the end of life but are patients in systems characterized by high intensity of treatment," the researchers conclude.
Patients can use advance directives to document their preferences for the use or avoidance of life-sustaining treatments (living wills). "Although advance directives have become more common in the past few decades, evidence is mixed on whether they change the course of treatment provided near the end-of-life," according to background information in the article.
"The wide variation in end-of-life Medicare expenditures across geographic regions suggests that default treatment levels also vary regionally. Advance directives specifying limits at the end-of-life may have their greatest impact in regions where the norms are to provide very high-intensity end-of-life treatment."
Lauren Hersch Nicholas, Ph.D., M.P.P., of the University of Michigan, Ann Arbor, and colleagues conducted a study to analyze the relationship of advance directives for Medicare patients with the cost and aggressiveness of end-of-life treatment in geographic regions across the United States. The researchers collected survey data from the Health and Retirement Study for 3,302 Medicare beneficiaries who died between 1998 and 2007 linked to Medicare claims and the National Death Index. Various models examined associations between advance directives, end-of-life Medicare expenditures, and treatments by level of Medicare spending in the decedent's hospital referral region. The average age of the beneficiaries at death was 83 years; 56 percent were women. Regions were characterized by quartiles of end-of-life spending averaged across a 7-year period. Decedent's region intensity was determined by zip code of residence.
Among the findings of the researchers, decedents residing in low spending regions were more likely to have a treatment-limiting advance directive than decedents in high-spending regions (42 percent vs. 36 percent). In high-spending regions, adjusted spending on patients with a treatment-limiting advance directive was $33,933, whereas adjusted spending for patients without an advance directive was $39,518 (difference, -$5,585). Having a treatment-limiting advance directive was not associated with differences in aggregate end-of-life spending for decedents in low- and medium-spending regions.
In high-spending regions, patients without an advance directive had a 47 percent adjusted probability of in-hospital death, whereas those with an advance directive had a 38 percent probability of in-hospital death. "The equivalent results for in-hospital death for those in medium-spending regions were 42 percent without an advance directive and 37 percent with an advance directive. In high-spending regions, patients without a limiting advance directive had a 24 percent adjusted probability of hospice use, whereas those with a directive had an adjusted probability of hospice use of 41 percent," the authors write.
Advance directives were associated with higher adjusted probabilities of hospice use in high- and medium-spending regions, but not in low-spending regions.
"Advance directives are associated with important differences in treatment during the last 6 months of life for patients who live in areas of high medical expenditures but not in other regions. This suggests that the clinical effect of advance directives is critically dependent on the context in which a patient receives care. Advance directives may be especially important for ensuring treatment consistent with patients' preferences for those who prefer less aggressive treatment at the end of life but are patients in systems characterized by high intensity of treatment," the researchers conclude.
Thursday, September 8, 2011
Agenda proposed to promote compassionate care
National survey shows about half of patients say it's missing in the US health care system
In light of a national survey showing that only about half of patients believe the U.S. health care system is a compassionate one, the Schwartz Center for Compassionate Healthcare today proposed an agenda for improving such care in an article in the September issue of Health Affairs, the nation's leading health policy journal.
"For most clinicians, compassionate care matters because it is fundamental to the practice of medicine, ethically sound, and humane," according to lead author Beth Lown, MD, medical director of the Schwartz Center and an associate professor of medicine at Harvard Medical School. "However, there is also strong evidence that compassionate care improves health outcomes and quality of life, increases patient satisfaction, and lowers health care costs. Particularly as our health care system faces such intense pressure to reduce costs, we must make sure that this critically important element of health care is not lost."
To ensure that all patients receive compassionate care, the Schwartz Center recommends that:
- The federal government include compassionate care measures in national quality standards and create a Compassionate Care Index (CCI) to measure the level of compassionate care being delivered by health care institutions and individual providers;
- The Patient-Centered Outcomes Research Institute created by the Affordable Care Act fund comparative effectiveness research to determine which aspects of compassionate care have the greatest impact on health outcomes, quality of life, and patient satisfaction;
- New health care payment systems, including the Centers for Medicare and Medicaid Services' proposed value-based purchasing system, reward providers for the compassionate care they provide to patients and families; and
- Comprehensive training programs be developed to help health care professionals and trainees develop the necessary skills required for compassionate care.
The Schwartz Center's recommendations are in response to the results of a national survey of 800 patients and 510 doctors that it conducted in the fall of 2010. The survey found that only 53 percent of patients and 58 percent of doctors rate the U.S. health care system as a compassionate one, despite strong agreement among patients and doctors that compassionate care is important to successful medical treatment and can even make a difference in whether a patient lives or dies.
The survey also found that more than two-thirds of patients (67%) and more than half of doctors (55%) are concerned that the changes taking place in the U.S. health care system, including the increased emphasis on controlling costs, will affect the ability of doctors, nurses, and other health care professionals to provide compassionate care. At the time of the survey, more than half of the doctors surveyed (53%) said they were already spending less time with patients than they wanted.
According to the Schwartz Center, compassionate care is defined by the following four essential characteristics:
- Empathy, emotional support, and a desire to relieve a patient's distress and suffering
- Effective communication at all stages of a patient's illness and treatment
- Respecting patients' and families' desires to participate in making health care decisions
- Knowing and relating to the patient as a whole person, not just a disease
"There is a great deal of emphasis in health care these days on providing 'patient-centered' care, but care without compassion cannot truly be patient centered," said Dr. Lown, who also works as a general internist at Mount Auburn Hospital in Cambridge, Massachusetts.
"Health care providers need time to listen to their patients, education in the skills of compassionate care, feedback based on measures of their performance, and leaders and systems that support healing relationships with patients and families," she and her co-authors write.
"Compassion is as important in helping patients manage chronic and acute conditions as it is at the end of life," Dr. Lown added. "To improve quality and reduce costs, compassion should be present in all aspects of our health care system."
Friday, July 29, 2011
Hospice improves care for dementia patients and their families
Hospice services substantially improved the provision of care and support for nursing home patients dying of dementia and their families, according to an analysis of survey responses from hundreds of bereaved family members. The research comes as hospice funding has received particular scrutiny in the debate over Medicare spending.
"People whose loved ones received hospice care reported an improved quality of care, and had a perception that the quality of dying was improved as well," said Dr. Joan Teno, a Brown University gerontologist and the lead author of the study published online in the Journal of the American Geriatrics Society. "This is one of just a few studies out there that has examined dying with dementia where the predominant site of care is a nursing home and can report the benefits of hospice services. As just one example, for nursing home patients not in hospice, one in five family members reported an unmet need for shortness of breath while that was only 6.1 percent for people in hospice."
Hospice care was a great comfort to Bartley Block, of Providence, when he lost his wife, Janet, to dementia in October 2010. He and Janet received service from Home and Hospice Care of Rhode Island on and off for about a year as her condition wavered, and then ultimately declined. Block said that even after his wife began struggling to eat, she still would get up and walk. Hospice workers would help the couple take walks at the nearby Tockwotton Nursing Home and patiently feed her food that they'd puree.
"It meant a great deal to her and to me," Block said. "It not only was able to calm her, but it was calming to me. There were spiritual sessions for me. They did so much for her to make her life easier."
That kind of experience is reflected in the responses of hundreds of families in the survey. In all, Teno's team asked 538 family members of nursing home patients who died of dementia to reflect on the care and support they experienced and observed at their loved one's end of life. Of that group, 260 received hospice care and 278 did not. Among the report's key findings:
Family members of hospice recipients were 51 percent less likely to report unmet needs and concerns with quality of care. They were 49 percent less likely to report an unmet need for management of pain. They were 50 percent less likely to have wanted more emotional support before their loved one's death. They rated the peacefulness of dying and the quality of dying more positively than families whose loved ones did not receive hospice care.
The survey also found that people who felt their loved one received hospice care "too late" had stronger concerns about care and support in almost every one of the survey's many measures. They felt worse off than people who had no hospice care at all.
"These are people who get slammed around the healthcare system in the last days of life," Teno said. "These are people with transitions who go from an acute care hospital to a nursing home in the last 24 hours. They are reacting to a set of circumstances that shouldn't have occurred."
Dementia is a particularly important area to study, Teno said, because the untreatable condition has only recently gained recognition as being terminal illness. The unpredictability of its progress, however, has led to a large number of dementia patients staying in hospice for longer than people with other conditions. That has made dementia a focus for scrutiny in discussions of cost.
But the study provides new evidence that hospice provides a meaningful benefit to nursing home patients with dementia and their families, such as the Blocks, Teno said. Policymakers should therefore factor in that evidence as they discuss the future of Medicare funding.
"It is a terminal illness," Teno said. "As we do payment reform we should preserve access and quality of care for those persons dying of dementia."
"People whose loved ones received hospice care reported an improved quality of care, and had a perception that the quality of dying was improved as well," said Dr. Joan Teno, a Brown University gerontologist and the lead author of the study published online in the Journal of the American Geriatrics Society. "This is one of just a few studies out there that has examined dying with dementia where the predominant site of care is a nursing home and can report the benefits of hospice services. As just one example, for nursing home patients not in hospice, one in five family members reported an unmet need for shortness of breath while that was only 6.1 percent for people in hospice."
Hospice care was a great comfort to Bartley Block, of Providence, when he lost his wife, Janet, to dementia in October 2010. He and Janet received service from Home and Hospice Care of Rhode Island on and off for about a year as her condition wavered, and then ultimately declined. Block said that even after his wife began struggling to eat, she still would get up and walk. Hospice workers would help the couple take walks at the nearby Tockwotton Nursing Home and patiently feed her food that they'd puree.
"It meant a great deal to her and to me," Block said. "It not only was able to calm her, but it was calming to me. There were spiritual sessions for me. They did so much for her to make her life easier."
That kind of experience is reflected in the responses of hundreds of families in the survey. In all, Teno's team asked 538 family members of nursing home patients who died of dementia to reflect on the care and support they experienced and observed at their loved one's end of life. Of that group, 260 received hospice care and 278 did not. Among the report's key findings:
Family members of hospice recipients were 51 percent less likely to report unmet needs and concerns with quality of care. They were 49 percent less likely to report an unmet need for management of pain. They were 50 percent less likely to have wanted more emotional support before their loved one's death. They rated the peacefulness of dying and the quality of dying more positively than families whose loved ones did not receive hospice care.
The survey also found that people who felt their loved one received hospice care "too late" had stronger concerns about care and support in almost every one of the survey's many measures. They felt worse off than people who had no hospice care at all.
"These are people who get slammed around the healthcare system in the last days of life," Teno said. "These are people with transitions who go from an acute care hospital to a nursing home in the last 24 hours. They are reacting to a set of circumstances that shouldn't have occurred."
Dementia is a particularly important area to study, Teno said, because the untreatable condition has only recently gained recognition as being terminal illness. The unpredictability of its progress, however, has led to a large number of dementia patients staying in hospice for longer than people with other conditions. That has made dementia a focus for scrutiny in discussions of cost.
But the study provides new evidence that hospice provides a meaningful benefit to nursing home patients with dementia and their families, such as the Blocks, Teno said. Policymakers should therefore factor in that evidence as they discuss the future of Medicare funding.
"It is a terminal illness," Teno said. "As we do payment reform we should preserve access and quality of care for those persons dying of dementia."
Wednesday, July 27, 2011
From Healing to Hospice: The Shift Toward a Good and Compassionate Death
University at Buffalo School of Social Work Professor Deborah P. Waldrop has seen people die. Too often, their lives have ended in pain and despair, spending their final days in an alienating institutional environment, just another patient in an impersonal progression that leads to what she calls “reciprocal suffering” for families who also watch their loved ones die.
There is another way. In the decades and multiple settings Waldrop has worked with terminal patients, she has seen a growing emphasis on factors that contribute to a “good death.” People can make that life transition in a home that has sustained them for many years, surrounded by the people who have given their lives meaning. “Comfort” can be the defining goal of a death without pain and suffering.
Too often, Waldrop says, critically and chronically ill patients lack information about options for care that can lead to that “good death” scenario. Bridging that gap -- identifying what factors or “trigger points” at which important conversations should happen -- is what her latest end-of-life research is all about.
She discusses her research in a video interview:
“People are without information, and providers and families often don’t have the skills to ask difficult question such as: ‘How much longer do you want to keep going back to the hospital?’” says Waldrop.
“There is an avoidance of death in our society that often sidesteps these questions. When asked, the majority of people, say they want to die at home surrounded by their family. Yet, actually 60 percent of chronically ill people die in hospitals and 20 percent die in nursing homes, so these wishes are often unfulfilled. There may be many reasons for this.
“We’re not having these conversations. We’re not addressing what people want. When you don’t really talk about it, things like unwanted aggressive treatment or another emergency room visit happen by default.”
Waldrop is a soft-spoken academic and researcher whose words accelerate and whose tone fills with intensity when she addresses the urgency of her work. If the idea of a good or more compassionate death is starting to enter the American mainstream, it’s an uneven process, with stops and starts. Various professional organizations throughout the country are focused on improving options for care in advanced chronic illness and encouraging conversations about individual wishes at the end of life.
But there’s an abyss that exists between what people say they want and what they end up doing, Waldrop says, a gap that brings physical, emotional, psychological and existential pain. And because more and more people are living longer, it’s more common than ever. The difference between choosing palliative care and continuing along a traditional medical path with a cure as the goal is often profound.
The bulk of Waldrop’s research consists of face-to-face interviews, almost 200, of patients and the people who have taken on the responsibility of caring for these terminal patients.
So far, the factors that affect the decision to ask for hospice care break down into two categories. There are clear physical factors. When does a person lose the ability to manage the activities of daily living?
“The loss of functional abilities is key,” Waldrop says. “That requires more caregiving from families. When someone has pain or symptoms that are out of control, that’s one of the trigger points to families that lead them to say they can’t do this anymore. What is their life going to look like from now on? How am I going to manage?”
There is also a spiritual, existential or psychosocial side. At what point do people realize they are dying? There is a point at which they recognize that death is approaching and they just want to be comfortable and surrounded by their family.
“What is it that brings people to the point at which they can consider different options?” Waldrop asks. _Once she identifies the trigger points that have determined when patients move from curative to palliative care, Waldrop will share these factors with patients facing terminal illnesses, their loved ones and also with professionals whose job it is to talk with families about the end of life.
Waldrop will continue to interview through July, when her grant from the National Institute of Nursing Research ends. Then she will publish her final conclusions._“As soon as possible,” she says when asked when the research will be complete. “This is my life’s work. I spent 25 years as a social worker sitting with people who were making difficult decisions among bad options. Additional and better options such as hospice and palliative care in a variety of settings now exist, but access is uneven. And, it has to start with frank, honest conversations about what people want and what families can do.
“People don’t have to pursue aggressive treatment as though there were no choices. The best approach for people is not always ‘Give me all you got.’ And these options have been slow to make it to the mainstream of medical specialties.
“This may be what people want most of all.”
There is another way. In the decades and multiple settings Waldrop has worked with terminal patients, she has seen a growing emphasis on factors that contribute to a “good death.” People can make that life transition in a home that has sustained them for many years, surrounded by the people who have given their lives meaning. “Comfort” can be the defining goal of a death without pain and suffering.
Too often, Waldrop says, critically and chronically ill patients lack information about options for care that can lead to that “good death” scenario. Bridging that gap -- identifying what factors or “trigger points” at which important conversations should happen -- is what her latest end-of-life research is all about.
She discusses her research in a video interview:
“People are without information, and providers and families often don’t have the skills to ask difficult question such as: ‘How much longer do you want to keep going back to the hospital?’” says Waldrop.
“There is an avoidance of death in our society that often sidesteps these questions. When asked, the majority of people, say they want to die at home surrounded by their family. Yet, actually 60 percent of chronically ill people die in hospitals and 20 percent die in nursing homes, so these wishes are often unfulfilled. There may be many reasons for this.
“We’re not having these conversations. We’re not addressing what people want. When you don’t really talk about it, things like unwanted aggressive treatment or another emergency room visit happen by default.”
Waldrop is a soft-spoken academic and researcher whose words accelerate and whose tone fills with intensity when she addresses the urgency of her work. If the idea of a good or more compassionate death is starting to enter the American mainstream, it’s an uneven process, with stops and starts. Various professional organizations throughout the country are focused on improving options for care in advanced chronic illness and encouraging conversations about individual wishes at the end of life.
But there’s an abyss that exists between what people say they want and what they end up doing, Waldrop says, a gap that brings physical, emotional, psychological and existential pain. And because more and more people are living longer, it’s more common than ever. The difference between choosing palliative care and continuing along a traditional medical path with a cure as the goal is often profound.
The bulk of Waldrop’s research consists of face-to-face interviews, almost 200, of patients and the people who have taken on the responsibility of caring for these terminal patients.
So far, the factors that affect the decision to ask for hospice care break down into two categories. There are clear physical factors. When does a person lose the ability to manage the activities of daily living?
“The loss of functional abilities is key,” Waldrop says. “That requires more caregiving from families. When someone has pain or symptoms that are out of control, that’s one of the trigger points to families that lead them to say they can’t do this anymore. What is their life going to look like from now on? How am I going to manage?”
There is also a spiritual, existential or psychosocial side. At what point do people realize they are dying? There is a point at which they recognize that death is approaching and they just want to be comfortable and surrounded by their family.
“What is it that brings people to the point at which they can consider different options?” Waldrop asks. _Once she identifies the trigger points that have determined when patients move from curative to palliative care, Waldrop will share these factors with patients facing terminal illnesses, their loved ones and also with professionals whose job it is to talk with families about the end of life.
Waldrop will continue to interview through July, when her grant from the National Institute of Nursing Research ends. Then she will publish her final conclusions._“As soon as possible,” she says when asked when the research will be complete. “This is my life’s work. I spent 25 years as a social worker sitting with people who were making difficult decisions among bad options. Additional and better options such as hospice and palliative care in a variety of settings now exist, but access is uneven. And, it has to start with frank, honest conversations about what people want and what families can do.
“People don’t have to pursue aggressive treatment as though there were no choices. The best approach for people is not always ‘Give me all you got.’ And these options have been slow to make it to the mainstream of medical specialties.
“This may be what people want most of all.”
Tuesday, May 31, 2011
Attitudes toward end-of-life care in Korea
Attitudes toward end-of-life care for cancer patients vary, but most patients, family members, oncologists and members of the public are receptive to withdrawing futile life-sustaining treatments in people who are dying, found a Korean study in CMAJ (Canadian Medical Association Journal.
The study, by researchers in Korea, aimed to determine attitudes towards end-of-life care, as most previous studies looked only at euthanasia and physician-assisted suicide. The researchers surveyed 3840 people, including 1242 cancer patients, 1289 family caregivers, 303 oncologists from 17 hospitals from across the country and 1006 members of the general Korean population.
"In this survey of attitudes toward critical interventions at the end of life of terminally ill patients, the most interesting finding was that most of the participants in each of the four study groups — patients, family caregivers, oncologists and members of the general public — showed a positive attitude toward the withdrawal of futile life-sustaining treatment and active pain control," writes Dr. Young Ho Yun, National Cancer Center, Goyang, Korea, with coauthors.
Palliative care in Korea is still fairly rare, and oncologists and family physicians in institutions provide medical care.
The study, by researchers in Korea, aimed to determine attitudes towards end-of-life care, as most previous studies looked only at euthanasia and physician-assisted suicide. The researchers surveyed 3840 people, including 1242 cancer patients, 1289 family caregivers, 303 oncologists from 17 hospitals from across the country and 1006 members of the general Korean population.
"In this survey of attitudes toward critical interventions at the end of life of terminally ill patients, the most interesting finding was that most of the participants in each of the four study groups — patients, family caregivers, oncologists and members of the general public — showed a positive attitude toward the withdrawal of futile life-sustaining treatment and active pain control," writes Dr. Young Ho Yun, National Cancer Center, Goyang, Korea, with coauthors.
Palliative care in Korea is still fairly rare, and oncologists and family physicians in institutions provide medical care.
Thursday, May 26, 2011
Oncologists hold key to curbing cancer costs
VCU Massey Cancer Center researchers propose evidence-based changes in oncologists' practice to cut cancer costs, ensure quality care for all and save money for future medical advances
The cost of cancer care is threatening to bankrupt our healthcare system. New drugs are prolonging life, but at staggering costs. This coupled with aging baby boomers and an increasing population mean the U.S. will spend $173 billion annually on cancer care by the year 2020. This trend is not sustainable; however, there are evidence-based ways to maintain or improve the quality of care while saving money for the new therapies being discovered every day.
So argue VCU Massey Cancer Center researchers Thomas Smith, M.D., and Bruce E. Hillner, M.D., in an article in The New England Journal of Medicine, Bending the Cost Curve in Cancer Care, in which they present 10 changes medical oncologists can do to flatten costs, maintain or improve care and save money for future medical advances. Smith is a nationally recognized oncologist and Endowed Chair of Palliative Care Research at VCU Massey Cancer Center, and Hillner is a professor and eminent scholar in the Department of Internal Medicine at the VCU School of Medicine and member scientist at VCU Massey Cancer Center.
In a challenge to their colleagues one week before the annual meeting of the American Society of Clinical Oncologists (ASCO), the authors suggest changes in the behaviors and attitudes of medical oncologists that could save the nation billions of dollars.
"First, we take curative care and clinical trials off the table. They are vital to advances and save lives," says Smith. "However, we must critically examine our current practices for ways to reduce costs in order to maintain quality cancer care for all of our patients while continuing to advance medicine. This raises difficult issues that impact physician income and requires a new level of open and honest communication between doctors and patients. But the longer we wait to address these issues, the worse it will be for future patients."
The authors focus on the treatment of patients with incurable solid tumors, and many of their recommendations reinforce current ASCO and National Comprehensive Cancer Network (NCCN) evidence-based guidelines. Some of their proposals call for more frank discussions about end-of-life care between physicians and patients, and others urge increased scrutiny when using expensive treatments and surveillance tests. They argue that by establishing these guidelines, oncologists would be less likely to continue treatments in situations where the treatments no longer beneficial for the patient.
"It is important that we are compassionate and honest with our patients about when continuing chemotherapy causes more harm than good," says Hillner. "Two simple but critically important points: we should stop routinely giving chemotherapy to patients who are so weakened by the disease that they cannot walk unaided into the clinic. And when the cancer has grown through three successive regimens, it is time to switch teams and use hospice. Research has shown that for patients in these situations it is highly unlikely that continued chemotherapy will prolong life."
The authors suggest the following changes in oncologists' behavior:
* Limit surveillance testing or imaging to situations in which a benefit has been shown.
* Limit second-line and third-line treatment for metastatic cancer to sequential single-agent chemotherapy for most solid tumors.
* Limit chemotherapy to patients with good outcomes, with an exception for highly responsive disease.
* In metastatic solid cancers, replace the routine use of white-cell-stimulating factors with a reduction in the chemotherapy dose.
* For patients who are not responding to three consecutive regimens, limit further chemotherapy to clinical trials.
The authors suggest the following changes in oncologists' attitudes and practice:
* Recognize that the costs of care are driven by what we do and do not do.
* Set more realistic expectations both for doctors and patients.
* Realign compensation to value cognitive services, rather than chemotherapy, more highly.
* Better integrate palliative care into usual oncology care (concurrent care).
* Accept the need for cost-effective analysis and for some limits on care.
"Our recommendations redefine current oncology practices, and we recognize that these raise tough questions," says Hillner. "But now is the time to talk about how we can preserve money to ensure all patients receive the best available care while setting aside funds for new and advanced therapies. We have outlined the starting points for discussion and hope a much-needed national dialogue will follow."
Wednesday, May 18, 2011
End of life care for cancer patients differs in US and Canada
In the United States, older patients with advanced lung cancer make much less use of hospital and emergency room services at the end of life than their counterparts in Ontario but use far more chemotherapy, according to a study published May 18th online in the Journal of the National Cancer Institute.
Government-financed health care covers elderly patients in both Canada and the U.S., but coverage at the end of life differs. In the U.S., Medicare covers hospice care for qualified patients. Ontario, the most populous Canadian province, has no hospice program comparable to what exists in the U.S. but provides palliative care through inpatient acute care units, outpatient services and home health care.
To compare end-of-life care between the two systems, Joan L. Warren, Ph.D., of the National Cancer Institute and colleagues used U. S. Surveillance, Epidemiology, and End Results (SEER)-Medicare data and data from the Ontario Cancer Registry. They identified patients age 65 and older who died with non-small cell lung cancer (NSCLC) during 1999-2003 and reviewed health claims from their last 5 months of life to collect data on chemotherapy, emergency room use, hospitalizations, and supportive care in both short-term (less than 6 months) and longer-term (6 months or more) survivors.
Patients in both countries used health-care services extensively, particularly in the last month of life. Ontario patients had hospital admissions and used emergency room services at rates that were statistically significantly greater than those of U.S. patients. More than twice as many Ontario patients died in hospital (e.g., 48.5% of short-term survivors compared to 20.4% in the U.S.) even though a majority of Ontario patients have reported that they would prefer to die at home. In each of the last 5 months, chemotherapy rates were statistically significantly higher among SEER-Medicare patients than among the Ontario patients.
The authors note that these findings partly support the commonly held view that U.S. physicians have a more aggressive attitude toward treatment and that patients in the U.S. tend to receive more intensive health-care services. However, U.S. patients can enroll in hospice services, an option not readily available in Ontario. The authors conclude that the lack of hospice services contributes to higher rates of hospital and emergency room visits and in-hospital deaths among Ontario patients.
The findings, they write, "will inform health planners and policy makers in each country regarding current patterns of end-of-life care and where there may be opportunities for changing practice patterns or programs."
In an editorial, David Goodman, M.D., of the Dartmouth Institute for Health Policy and Clinical Practice, notes that end-of-life care varies not only between the U.S. and Ontario, but also from region to region within the U.S. and Canada. Even more important, he writes, patient preferences varies from one individual to another and these preferences are often unheard: "Quality in end-of-life care will continue to elude us if we assume that societal average preferences indicate the care individual patients want and need," he writes.
Goodman argues that the best care at the end of life is care in which the patient participates in the decision-making. "The solution…is not to blindly drive systems towards greater use of hospice and palliative care services. It is to improve decision quality so that patients can make an informed choice with an understanding of the patient experiences associated with active curative care, with supportive care, or with concurrent [palliative and curative] care."
Government-financed health care covers elderly patients in both Canada and the U.S., but coverage at the end of life differs. In the U.S., Medicare covers hospice care for qualified patients. Ontario, the most populous Canadian province, has no hospice program comparable to what exists in the U.S. but provides palliative care through inpatient acute care units, outpatient services and home health care.
To compare end-of-life care between the two systems, Joan L. Warren, Ph.D., of the National Cancer Institute and colleagues used U. S. Surveillance, Epidemiology, and End Results (SEER)-Medicare data and data from the Ontario Cancer Registry. They identified patients age 65 and older who died with non-small cell lung cancer (NSCLC) during 1999-2003 and reviewed health claims from their last 5 months of life to collect data on chemotherapy, emergency room use, hospitalizations, and supportive care in both short-term (less than 6 months) and longer-term (6 months or more) survivors.
Patients in both countries used health-care services extensively, particularly in the last month of life. Ontario patients had hospital admissions and used emergency room services at rates that were statistically significantly greater than those of U.S. patients. More than twice as many Ontario patients died in hospital (e.g., 48.5% of short-term survivors compared to 20.4% in the U.S.) even though a majority of Ontario patients have reported that they would prefer to die at home. In each of the last 5 months, chemotherapy rates were statistically significantly higher among SEER-Medicare patients than among the Ontario patients.
The authors note that these findings partly support the commonly held view that U.S. physicians have a more aggressive attitude toward treatment and that patients in the U.S. tend to receive more intensive health-care services. However, U.S. patients can enroll in hospice services, an option not readily available in Ontario. The authors conclude that the lack of hospice services contributes to higher rates of hospital and emergency room visits and in-hospital deaths among Ontario patients.
The findings, they write, "will inform health planners and policy makers in each country regarding current patterns of end-of-life care and where there may be opportunities for changing practice patterns or programs."
In an editorial, David Goodman, M.D., of the Dartmouth Institute for Health Policy and Clinical Practice, notes that end-of-life care varies not only between the U.S. and Ontario, but also from region to region within the U.S. and Canada. Even more important, he writes, patient preferences varies from one individual to another and these preferences are often unheard: "Quality in end-of-life care will continue to elude us if we assume that societal average preferences indicate the care individual patients want and need," he writes.
Goodman argues that the best care at the end of life is care in which the patient participates in the decision-making. "The solution…is not to blindly drive systems towards greater use of hospice and palliative care services. It is to improve decision quality so that patients can make an informed choice with an understanding of the patient experiences associated with active curative care, with supportive care, or with concurrent [palliative and curative] care."
Rise of for-profit hospice industry raises troubling questions, new study says
Ethical and quality concerns grow as end-of-life hospice care, once the province of charitable organizations, is increasingly dominated by investor-owned chains that cherry-pick patients and cut labor costs in order to maximize profits
A new survey of hospice care in the United States says that the rapidly growing role of for-profit companies in providing end-of-life care for terminally ill patients raises serious concerns about whose interests are being served under such a commercial arrangement: those of shareholders or those of dying patients and their loved ones.
"Under a corporate model of hospice care, there's an inherent conflict of interest between a company's drive to maximize profits and a patient's need for the kind of holistic, multidisciplinary and compassionate care originally envisioned by the founders of the modern hospice movement," said Dr. Robert Stone, an emergency medicine physician in Bloomington, Ind.
Stone, who serves as assistant medical director at a hospital hospice program at Indiana University, is co-author of "In the Business of Dying: Questioning the Commercialization of Hospice," a newly published article in the Journal of Law, Medicine and Ethics. Joshua Perry, a professor of business law and ethics at Indiana University, is the lead author of the article.
Stone and Perry point out that the for-profit hospice industry grew by 128 percent from 2001 to 2008, while the nonprofit sector grew by only 1 percent and government-sponsored hospices increased by 25 percent. The for-profit sector now accounts for 52 percent of hospices.
"Research shows that for-profit hospices, and especially publicly traded chain providers, generate higher revenues than their nonprofit counterparts," Stone said. "They do this in part, studies show, by selectively recruiting longer-term patients, most of whom do not have cancer, thereby gaming the Medicare payment system." Medicare currently pays hospice providers a fixed per diem payment throughout a patient's stay, regardless of whether services are provided on any given day, he said.
"Hospice patients' use of services are greatest on the first day of hospice care, when services are being set up, and in the last few days of life, when round-the-clock nursing care may be required," Stone said. "Hospices that recruit longer-term patients will be overpaid and will drain funds from the hospice program that should be going to patient care."
Stone continued: "Typically, the for-profit companies also pay lower salaries and benefits to a less-skilled staff, and employ fewer registered nurses. This raises quality concerns."
Such practices not only undermine the Samaritan traditions of the hospice movement, he said, but also put nonprofit hospices at a competitive disadvantage, threatening their financial survival. Nonprofits have been shown to provide a greater range of services than their for-profit counterparts, including continuous home care and bereavement services, he said.
Stone and Perry point to research documenting ethically questionable marketing practices used by for-profit hospice companies, including instances of company representatives going into nursing homes and offering free pens and coffee cups to staff and subsequently paying a commission to staff members who refer patients to them.
While more research on hospice quality needs to be done, Stone said, comparative studies of U.S. hospitals, dialysis centers and nursing homes have shown that nonprofit institutions, on average, provide a higher quality of care than do for-profits.
###
"In the Business of Dying: Questioning the Commercialization of Hospice," Joshua E. Perry, J.D., M.T.S., and Robert C. Stone, M.D., Journal of Law, Medicine and Ethics, Summer 2011.
Saturday, May 14, 2011
Music Therapy in Hospice Care
Add guitars and other musical instruments to the tools caregivers can use to help patients in hospice care. That’s what University of Alabama senior Sarah Pitts found when she brought her music therapy skills to patients in Hospice of West Alabama.
“We’ve gotten a lot of encouraging comments from families,” says Pitts, a music therapy major from Memphis, Tenn. “Sometimes families who hear us say, ‘Can you come and play a song or two?’ Even one session with a music therapist can reduce pain and anxiety in this setting.”
Pitts’ experiences in hospice care inspired her to research how students doing clinical practice in hospices react to the experience. She won the E. Thayer Gaston Award for outstanding student paper, and she continues her survey research with her mentor, Dr. Andrea Cevasco, assistant professor of music at UA. The resulting article is titled “A Survey of Music Therapy Students’ Practical Experiences in Hospice and Palliative Care.” Part of Pitts’ motivation for pursuing this research was the lack of resources she could draw on when working with hospice patients.
“In this particular area, there’s not a lot of research to go to as a student,” Pitts says. “The emotional component and goals are a little bit different from other clinical settings. You’re improving the quality of life or helping with the changing needs of the patient, and you’re also helping to provide closure and support for families. For students, it’s a very difficult thing to handle.”
Music therapy, taught in a four-year program with a six-month internship following coursework, combines work in music, psychology and other disciplines. It has many applications in a wide variety of environments and a broad range of clients, from premature babies to people needing physical or psychological therapy. The key is to get a patient moving or involved with the music, perhaps singing along or playing an instrument as the therapist plays on the guitar.
It might be that we have kids playing drums,” Cevasco says. “They reach and extend their arms out, which might help a child who has cerebral palsy whose muscles may be tense. Reaching out and playing the drum is fun and enjoyable, but the therapy also is important, because the child is using specific muscles that might normally be painful to use during physical therapy and daily exercises.”
The music therapy program has had a relationship with Hospice of West Alabama since 2007. Cevasco says one of her students came to her asking if she could work in hospice for her clinical experience, so Cevasco set it up. She notes that it takes a student with a particular interest in working with patients at the end of life to follow this path.
“I don’t force the students, but if they’re interested in it, we move in that direction,” Cevasco says. “As an undergrad myself, I never pictured myself doing any kind of hospice work. Personally, I wasn’t ready to deal with death and dying as an 18 to 22-year-old.”
Pitts chose to work with hospice patients because of a personal experience that brought her face to face with mortality.
“I’ve also faced death in someone my own age,” she says. “Last year, my brother dealt with a potentially fatal health condition. I understand you need someone to support you at that time. As a therapist, I can be there for people when they face very difficult times in their lives.”
Her work with the hospice patients varied; two clients became well enough that they could leave hospice. In one case, Pitts, at the request of a family who had heard her play did perform music while a patient died.
“The family requested a few songs, and I played straight through,” Pitts says. “I added a couple of songs of my own that I felt were appropriate. I felt like what she (the patient) needed was slowing-down music as her breathing slowed. I got to be there as she was dying, and we all got a chance to be a part of that.”
Patients in hospice care, depending on their illnesses, may or may not be able to participate in the playing of music for therapy, Pitts says. But music still matters. In her clinical experience, Pitts says she found a wide range of music to be helpful in working with hospice patients and families. Hymns, including “Amazing Grace,” are often requested, but patients frequently want to hear other styles of music as well.
“Typically, when we go in, I have a list of songs I know,” she says. “I prepare songs from different genres – hymns, show tunes, or sometimes songs from the ’30s, ’40s and ’50s, which may be from the patients’ young adult years. If the patient isn’t responsive and awake, I find out what the family wants me to play. If I’m in a situation where the patient is actively dying, I just play a few songs, and I’ll be a very passive member of the room. The family is just there saying goodbye, and I’m providing an atmosphere for that.”
The working with hospice patients – that element of saying goodbye – troubles young music therapists, Cevasco says.
“For all the students, they’re wondering how they’re going to deal with this relationship and this attachment that has developed with this patient and having the patient pass away -- how they’re going to cope with this aspect of the job,” Cevasco says.
In the survey Pitts and Cevasco collaborated on, they note that students feared how they would cope when working with dying patients, particularly in how they handled “emotional attachments or relationships with clients, talking about the death and dying process and how previous experiences would affect current clinical work.”
The survey also asked students some open-ended questions about their own beliefs about the end of life. Finding out what those fears and beliefs are, Pitts says, may help instructors better train the students who plan to work with hospice patients.
“The students said it was a very difficult and emotional thing to do,” Pitts says. “Some people had done palliative care with children, but others didn’t realize that was what it was – that the patients died. They didn’t realize what the unit did.”
For Pitts, this kind of therapy represents a way she can use her deep background in music to help people. She ended up choosing to pursue music therapy in college, particularly once she became involved in the clinical part of the degree program.
“I grew up in a very musical family,” she says. “I had piano lessons, and I started singing in middle school and high school choir. . . . I found music therapy to be a nice mix of psychology and music.”
Cevasco says she admires the work Pitts has done, both with the research article and the therapy she provided the hospice clients.
“I was really surprised when she chose hospice,” Cevasco says. “I realized, and she realized, how great she was working with patients with mental-health needs in the previous semesters of her clinical work. I was very surprised, and I was so pleased with her and her work that she did with those hospice patients. It was beautiful the way she was able to work with the hospice families. And the beauty of her being able to play the guitar and sing and provide these families with what they needed and the patients what they needed at this critical moment of their life.”
“We’ve gotten a lot of encouraging comments from families,” says Pitts, a music therapy major from Memphis, Tenn. “Sometimes families who hear us say, ‘Can you come and play a song or two?’ Even one session with a music therapist can reduce pain and anxiety in this setting.”
Pitts’ experiences in hospice care inspired her to research how students doing clinical practice in hospices react to the experience. She won the E. Thayer Gaston Award for outstanding student paper, and she continues her survey research with her mentor, Dr. Andrea Cevasco, assistant professor of music at UA. The resulting article is titled “A Survey of Music Therapy Students’ Practical Experiences in Hospice and Palliative Care.” Part of Pitts’ motivation for pursuing this research was the lack of resources she could draw on when working with hospice patients.
“In this particular area, there’s not a lot of research to go to as a student,” Pitts says. “The emotional component and goals are a little bit different from other clinical settings. You’re improving the quality of life or helping with the changing needs of the patient, and you’re also helping to provide closure and support for families. For students, it’s a very difficult thing to handle.”
Music therapy, taught in a four-year program with a six-month internship following coursework, combines work in music, psychology and other disciplines. It has many applications in a wide variety of environments and a broad range of clients, from premature babies to people needing physical or psychological therapy. The key is to get a patient moving or involved with the music, perhaps singing along or playing an instrument as the therapist plays on the guitar.
It might be that we have kids playing drums,” Cevasco says. “They reach and extend their arms out, which might help a child who has cerebral palsy whose muscles may be tense. Reaching out and playing the drum is fun and enjoyable, but the therapy also is important, because the child is using specific muscles that might normally be painful to use during physical therapy and daily exercises.”
The music therapy program has had a relationship with Hospice of West Alabama since 2007. Cevasco says one of her students came to her asking if she could work in hospice for her clinical experience, so Cevasco set it up. She notes that it takes a student with a particular interest in working with patients at the end of life to follow this path.
“I don’t force the students, but if they’re interested in it, we move in that direction,” Cevasco says. “As an undergrad myself, I never pictured myself doing any kind of hospice work. Personally, I wasn’t ready to deal with death and dying as an 18 to 22-year-old.”
Pitts chose to work with hospice patients because of a personal experience that brought her face to face with mortality.
“I’ve also faced death in someone my own age,” she says. “Last year, my brother dealt with a potentially fatal health condition. I understand you need someone to support you at that time. As a therapist, I can be there for people when they face very difficult times in their lives.”
Her work with the hospice patients varied; two clients became well enough that they could leave hospice. In one case, Pitts, at the request of a family who had heard her play did perform music while a patient died.
“The family requested a few songs, and I played straight through,” Pitts says. “I added a couple of songs of my own that I felt were appropriate. I felt like what she (the patient) needed was slowing-down music as her breathing slowed. I got to be there as she was dying, and we all got a chance to be a part of that.”
Patients in hospice care, depending on their illnesses, may or may not be able to participate in the playing of music for therapy, Pitts says. But music still matters. In her clinical experience, Pitts says she found a wide range of music to be helpful in working with hospice patients and families. Hymns, including “Amazing Grace,” are often requested, but patients frequently want to hear other styles of music as well.
“Typically, when we go in, I have a list of songs I know,” she says. “I prepare songs from different genres – hymns, show tunes, or sometimes songs from the ’30s, ’40s and ’50s, which may be from the patients’ young adult years. If the patient isn’t responsive and awake, I find out what the family wants me to play. If I’m in a situation where the patient is actively dying, I just play a few songs, and I’ll be a very passive member of the room. The family is just there saying goodbye, and I’m providing an atmosphere for that.”
The working with hospice patients – that element of saying goodbye – troubles young music therapists, Cevasco says.
“For all the students, they’re wondering how they’re going to deal with this relationship and this attachment that has developed with this patient and having the patient pass away -- how they’re going to cope with this aspect of the job,” Cevasco says.
In the survey Pitts and Cevasco collaborated on, they note that students feared how they would cope when working with dying patients, particularly in how they handled “emotional attachments or relationships with clients, talking about the death and dying process and how previous experiences would affect current clinical work.”
The survey also asked students some open-ended questions about their own beliefs about the end of life. Finding out what those fears and beliefs are, Pitts says, may help instructors better train the students who plan to work with hospice patients.
“The students said it was a very difficult and emotional thing to do,” Pitts says. “Some people had done palliative care with children, but others didn’t realize that was what it was – that the patients died. They didn’t realize what the unit did.”
For Pitts, this kind of therapy represents a way she can use her deep background in music to help people. She ended up choosing to pursue music therapy in college, particularly once she became involved in the clinical part of the degree program.
“I grew up in a very musical family,” she says. “I had piano lessons, and I started singing in middle school and high school choir. . . . I found music therapy to be a nice mix of psychology and music.”
Cevasco says she admires the work Pitts has done, both with the research article and the therapy she provided the hospice clients.
“I was really surprised when she chose hospice,” Cevasco says. “I realized, and she realized, how great she was working with patients with mental-health needs in the previous semesters of her clinical work. I was very surprised, and I was so pleased with her and her work that she did with those hospice patients. It was beautiful the way she was able to work with the hospice families. And the beauty of her being able to play the guitar and sing and provide these families with what they needed and the patients what they needed at this critical moment of their life.”
Black and Hispanic Patients With Heart Failure Less Likely to Use Hospice
Black and Hispanic Medicare beneficiaries with heart failure appear less likely to receive hospice care than white patients with the same condition, according to a report in the March 8 issue of Archives of Internal Medicine, one of the JAMA/Archives journals.
“Underuse of hospice care is well documented, especially among racial and ethnic minorities,” the authors write as background information in the article. “Racial and ethnic differences in patients who use hospice care have been found across a spectrum of patients with cancer diagnoses and may be more pronounced in patients with non-cancer diagnoses.” Heart failure affects nearly 5 million people in the United States; advanced heart disease is the second most common hospice diagnosis, accounting for about 12 percent of all hospice enrollees.
Jane L. Givens, M.D., M.S.C.E., of the Hebrew SeniorLife Institute for Aging Research, Beth Israel Deaconess Medical Center, Boston, and colleagues studied a national sample of 98,258 Medicare beneficiaries age 66 or older who had a diagnosis of heart failure. None of the participants was enrolled in hospice at the beginning of the study, in 2000.
Over the next year, of the beneficiaries who entered hospice care, 18.2 percent did so because of heart failure. In unadjusted analyses, black and Hispanic patients were less likely than white patients to enter hospice care; the association persisted after adjusting for other factors, including income, urban location, severity of heart failure and co-occurring illnesses. When compared with whites, black patients and Hispanic patients had lower odds of receiving hospice care.
“In addition to sociodemographic, clinical and geographic characteristics, cultural beliefs and values may contribute to differences between blacks and whites in end-of-life care and hospice use,” the authors write. “For example, compared with whites, blacks are less likely to complete advance directives, have less favorable beliefs about hospice care, opt for more aggressive treatments and are more likely to have spiritual beliefs that conflict with the goals of palliative treatment.”
“In addition, lack of trust between patients and physicians may be more pronounced for ethnic minorities and may contribute to ethnic differences in hospice entry,” the authors conclude. “It is not clear how many of these differences reflect access issues as opposed to considered patient preferences.”
(Arch Intern Med. 2010;170[5]427-432.)
“Underuse of hospice care is well documented, especially among racial and ethnic minorities,” the authors write as background information in the article. “Racial and ethnic differences in patients who use hospice care have been found across a spectrum of patients with cancer diagnoses and may be more pronounced in patients with non-cancer diagnoses.” Heart failure affects nearly 5 million people in the United States; advanced heart disease is the second most common hospice diagnosis, accounting for about 12 percent of all hospice enrollees.
Jane L. Givens, M.D., M.S.C.E., of the Hebrew SeniorLife Institute for Aging Research, Beth Israel Deaconess Medical Center, Boston, and colleagues studied a national sample of 98,258 Medicare beneficiaries age 66 or older who had a diagnosis of heart failure. None of the participants was enrolled in hospice at the beginning of the study, in 2000.
Over the next year, of the beneficiaries who entered hospice care, 18.2 percent did so because of heart failure. In unadjusted analyses, black and Hispanic patients were less likely than white patients to enter hospice care; the association persisted after adjusting for other factors, including income, urban location, severity of heart failure and co-occurring illnesses. When compared with whites, black patients and Hispanic patients had lower odds of receiving hospice care.
“In addition to sociodemographic, clinical and geographic characteristics, cultural beliefs and values may contribute to differences between blacks and whites in end-of-life care and hospice use,” the authors write. “For example, compared with whites, blacks are less likely to complete advance directives, have less favorable beliefs about hospice care, opt for more aggressive treatments and are more likely to have spiritual beliefs that conflict with the goals of palliative treatment.”
“In addition, lack of trust between patients and physicians may be more pronounced for ethnic minorities and may contribute to ethnic differences in hospice entry,” the authors conclude. “It is not clear how many of these differences reflect access issues as opposed to considered patient preferences.”
(Arch Intern Med. 2010;170[5]427-432.)
Substantial Regional Differences Exist in the Treatment for End-Stage Kidney Disease in Older Adults
“From the lowest to the highest end-of-life expenditure index quintile, the proportion of patients who received hospice care before death ranged from 33.5 percent to 20.7 percent, and the proportion who died in the hospital ranged from 50.3 percent to 67.8 percent.”
There is substantial regional variation in treatment practices for care of older adults with end-stage renal disease (ESRD), including receipt of hospice care and discontinuation of dialysis before death, according to a study in the July 14 issue of JAMA.
“Patients aged 75 years or older currently represent one of the fastest growing groups within the ESRD population. Average Medicare costs for an older patient receiving long-term dialysis exceed $100,000 during the first year after initiation of therapy,” the authors write. They add that little is known about treatment practices for older adults with ESRD and the extent to which these practices vary regionally.
Ann M. O'Hare, M.D., M.A., of the University of Washington and VA Puget Sound Healthcare System, Seattle, and colleagues examined the incidence of ESRD and end-of-life care practices among older adults with ESRD across regions with differing intensities of care. The researchers used data from a national ESRD registry to identify a group of 41,420 adults (of white or black race), ages 65 years or older, who started long-term dialysis or received a kidney transplant between June 1, 2005, and May 31, 2006. Regional end-of-life intensity of care was defined using an index from the Dartmouth Atlas of Healthcare.
The researchers found that among whites, the incidence of ESRD was progressively higher in regions with greater intensity of care and this trend was most pronounced at older ages. “Among blacks, a similar relationship was present only at advanced ages [men 80 years of age or older and women 85 years of age or older]. Patients living in regions in the highest compared with lowest quintile of end-of-life intensity of care were less likely to be under the care of a nephrologist [a physician who sees and treats people with kidney diseases] before the onset of ESRD (62.3 percent vs. 71.1 percent, respectively) and less likely to have a fistula (created by a surgical procedure that involves connecting an artery to a vein, usually in the forearm, and providing access for dialysis) (vs. graft or catheter) at the time of hemodialysis initiation (11.2 percent vs. 16.9 percent),” the authors write.
Overall, 51 percent (n = 21,190) of patients died within 2 years of ESRD onset, ranging from 47.1 percent in regions in the lowest end-of-life expenditure index quintile to 52.6 percent in regions in the highest quintile. “Among decedents, dialysis was discontinued prior to death in 44.3 percent of those living in regions in the lowest end-of-life expenditure index quintile compared with 22.2 percent of those living in regions in the highest quintile,” the researchers write. “From the lowest to the highest end-of-life expenditure index quintile, the proportion of patients who received hospice care before death ranged from 33.5 percent to 20.7 percent, and the proportion who died in the hospital ranged from 50.3 percent to 67.8 percent.”
The authors add that these pronounced regional differences in practice were not explained by differences in patient characteristics measured at the onset of ESRD.
“There is substantial, unexplained regional variation in the care of older adults with ESRD, both prior to ESRD onset and prior to death. This finding underlines the importance of a compre¬hensive informed and ongoing consent process for ESRD treatment based on available evidence and clinical practice guidelines. Such efforts will help to ensure that treatment decisions— including those to initiate and to discontinue dialysis-—are based on patient preferences and values rather than regional practice style. Ultimately, improved decision making for dialysis initiation and discontinuation may serve as a valuable model for the use of other high-cost, intensive treatments in older adults,” the authors conclude.
(JAMA. 2010;304[2]:180-186.)
Death at Home (with hospice services) Less Distressing for Cancer Patients and Families
Study finds caregivers at higher risk for mental illness when patients with advanced cancer die in hospital/ICU
Cancer patients who die in the hospital or an intensive care unit have worse quality of life at the end-of-life, compared to patients who die at home with hospice services, and their caregivers are at higher risk for developing psychiatric illnesses during bereavement, according to a study by researchers at Dana-Farber Cancer Institute.
One striking finding of the study, reported in the September 13th issue of the Journal of Clinical Oncology, was that bereaved caregivers of patients who died in an intensive care unit (ICU) were five times more likely to be diagnosed with Posttraumatic Stress Disorder (PTSD), compared with caregivers of patients who died at home with hospice services.
“This is the first study to show that caregivers of patients who die in ICUs are at a heightened risk for developing PTSD,” wrote the authors, led by Alexi Wright, MD, a medical oncologist and outcomes researcher at Dana-Farber. The American Medical Association Glossary defines PTSD as “feelings of anxiety experienced after a particularly frightening or stressful event, which include recurring dreams, difficulty sleeping, and a feeling of isolation.”
In addition, families and loved ones of patients who died in the hospital, though not in an ICU, were at higher risk of developing Prolonged Grief Disorder (PGD), an intense and disabling form of grief which lasts more than 6 months.
The report comes at a time of growing concern over the appropriateness of aggressive, hospital-based end-of-life care for terminal cancer patients. The authors noted that although most cancer patients would prefer to spend their last days at home, 36 percent die in a hospital and 8 percent in an ICU and may be subjected to invasive and painful procedures at the end of life.
In contrast to home or hospice care that emphasizes alleviating pain and discomfort and providing a peaceful death, ICU care can be traumatic for patients and their family and caregivers, said Wright.
The report, whose senior author is Holly Prigerson, PhD, director of Dana-Farber’s Center for Psycho-oncology & Palliative Care Research, contains findings from a prospective, longitudinal study of advanced cancer patients recruited at seven cancer centers from 2002 to 2008. Patients and caregivers – mainly family members – were interviewed at the beginning of the study. Their medical charts were reviewed at that point and after the patients died, on average 4.5 months later. Within two weeks of the death, researchers interviewed the caregiver most closely involved with the patient’s care during the last week of life; they interviewed the caregiver again six months later.
In the interviews, the researchers asked the caregivers to assess the patients’ quality of life and physical and psychological stress during the last week of life. The researchers also evaluated the caregivers’ own mental health at the beginning of the study – to uncover any pre-existing psychiatric illnesses – and again six months after the patient’s death.
After analyzing the data on 342 patient-caregiver pairs, the investigators found that patients who had died in the hospital or an ICU experienced more physical and emotional distress and worse quality of life than those dying at home. Among the caregivers, they determined that 4 of 19 caregivers (21 percent) of patients dying in an ICU developed PTSD, compared with 6 of 137 (4.4 percent) when death occurred in the home/hospice setting. A similar elevated risk of prolonged grief disorder was found in caregivers when patients died in the hospital, but not in an ICU.
These findings are important for both patients and physicians, said Wright. “If patients are aware that more-aggressive care may affect not only their quality of life, but also their loved ones after their death, they may make different choices.”
In addition to Wright and Prigerson, the paper’s other authors are Tracy Balboni, MD, Ursula Matulonis, MD, and Susan Block, MD, of Dana-Farber, and Nancy L. Keating, MD, of Harvard Medical School.
The research was supported by grants from the National Institute of Mental Health and the National Cancer Institute
Patients With Cancer Who Stop Hospice Care Boost Health Care Costs
Researchers at Mount Sinai School of Medicine have found that the costs of care for patients with cancer who disenrolled from hospice were nearly five times higher than for patients who remained with hospice. Patients who disenroll from hospice are far more likely to use emergency department care and be hospitalized. The results are published in the October 1 issue of the Journal of Clinical Oncology.
Led by Melissa D.A. Carlson, PhD, Assistant Professor of Geriatrics and Palliative Medicine, and Elizabeth H. Bradley, PhD, Professor of Public Health at Yale University, the research team evaluated data from 90,826 patients with cancer served by 1,384 hospices in the Surveillance, Epidemiology and End Results (SEER)-Medicare database between 1998 and 2002. Nearly 11 percent of these patients disenrolled from hospice care and had significantly higher health care use and costs than those who remained in hospice until death.
“Our data suggest that oncologists should be aware of the dramatic financial and physical toll that disenrolling from hospice can have on a patient with cancer,” said Dr. Carlson. According to Dr. Bradley, “We do not really understand why some patients disenroll from hospice, especially as many had conditions that typically fit hospice care. The number was higher than we expected and would be good to investigate further.” The paper recommends that oncologists should connect with palliative care teams where available and try to ensure that the patient and family are supported following hospice disenrollment.”
The researchers found that 33.9 percent of the patients who had disenrolled from hospice care were admitted to an emergency department, while only 3.1 percent of those who remained in hospice care until death were. Additionally, 39.8 percent of disenrolled patients were admitted to the hospital as an inpatient where only 1.6 percent of enrolled patients were. Disenrolled patients also spent an average of 19.3 days in the hospital, whereas enrolled patients spent an average of 6.7 days.
The Medicare expenditures that the researchers evaluated included hospice care, hospitalizations, physician visits, outpatient care, medical equipment and supplies, and home health care services. Patients who stayed with hospice incurred $6,537 in expenses from the time of hospice enrollment to death, while those who did not incurred $30,848 in expenses.
The study did not investigate why patients disenrolled from hospice care and does not include individuals who were enrolled in a Medicare managed care organization before hospice enrollment. The researchers recommend that future studies include patient and caregiver interviews to help understand the hospice disenrollment process.
“Currently, 39 percent of decedents in this country were under the care of a hospice,” continued Dr. Carlson. “Rather than focusing on how to decrease Medicare expenditures by restricting access to the Medicare Hospice Benefit, policy makers should focus on how to decrease the potential barriers to remaining enrolled with hospice until death, with an eye to both decreasing Medicare costs and potentially improving patient and family outcomes.”
Co-authors on the study were Drs. Jeph Herrin, Andrew J. Epstein, Colleen L. Barry, R. Sean Morrison, Anthony L. Back, and Ms. Qingling Du.
Led by Melissa D.A. Carlson, PhD, Assistant Professor of Geriatrics and Palliative Medicine, and Elizabeth H. Bradley, PhD, Professor of Public Health at Yale University, the research team evaluated data from 90,826 patients with cancer served by 1,384 hospices in the Surveillance, Epidemiology and End Results (SEER)-Medicare database between 1998 and 2002. Nearly 11 percent of these patients disenrolled from hospice care and had significantly higher health care use and costs than those who remained in hospice until death.
“Our data suggest that oncologists should be aware of the dramatic financial and physical toll that disenrolling from hospice can have on a patient with cancer,” said Dr. Carlson. According to Dr. Bradley, “We do not really understand why some patients disenroll from hospice, especially as many had conditions that typically fit hospice care. The number was higher than we expected and would be good to investigate further.” The paper recommends that oncologists should connect with palliative care teams where available and try to ensure that the patient and family are supported following hospice disenrollment.”
The researchers found that 33.9 percent of the patients who had disenrolled from hospice care were admitted to an emergency department, while only 3.1 percent of those who remained in hospice care until death were. Additionally, 39.8 percent of disenrolled patients were admitted to the hospital as an inpatient where only 1.6 percent of enrolled patients were. Disenrolled patients also spent an average of 19.3 days in the hospital, whereas enrolled patients spent an average of 6.7 days.
The Medicare expenditures that the researchers evaluated included hospice care, hospitalizations, physician visits, outpatient care, medical equipment and supplies, and home health care services. Patients who stayed with hospice incurred $6,537 in expenses from the time of hospice enrollment to death, while those who did not incurred $30,848 in expenses.
The study did not investigate why patients disenrolled from hospice care and does not include individuals who were enrolled in a Medicare managed care organization before hospice enrollment. The researchers recommend that future studies include patient and caregiver interviews to help understand the hospice disenrollment process.
“Currently, 39 percent of decedents in this country were under the care of a hospice,” continued Dr. Carlson. “Rather than focusing on how to decrease Medicare expenditures by restricting access to the Medicare Hospice Benefit, policy makers should focus on how to decrease the potential barriers to remaining enrolled with hospice until death, with an eye to both decreasing Medicare costs and potentially improving patient and family outcomes.”
Co-authors on the study were Drs. Jeph Herrin, Andrew J. Epstein, Colleen L. Barry, R. Sean Morrison, Anthony L. Back, and Ms. Qingling Du.
Men Dying of Prostate Cancer Referred Too Late to Hospice Care
More than half of men dying of prostate cancer use hospice care – a significant increase over the last two decades – but most wait too long to enroll so they can’t take full advantage of the palliative care that could make their deaths easier, a study by researchers at UCLA’s Jonsson Comprehensive Cancer Center found.
The study also found that men with spouses or partners were more likely to take advantage of hospice care, while African American men were 20 percent less likely to enroll.
For hospice care to be most effective, patients should be enrolled for several weeks prior to their deaths. However, the study found most men enrolled just one to two weeks before they died, said Dr. Mark Litwin, a professor of urology and public health, a Jonsson Cancer Center researcher and senior author of the study.
“It’s important that we maximize quality of life when quantity of life cannot be changed,” Litwin said. “Most men are being referred to hospice too late and that timing hasn’t changed in the last 20 years, which is unfortunate. As cancer specialists, we should offer these patients the best quality of life that we can, and that often means offering them the best quality of death that we can give them.”
The study appears Oct. 11, 2010 in the early, online edition of Archives of Internal Medicine.
The primary reason for the delay in referrals to hospice is that oncologists often are loathe to give up the fight, and they aren’t good at predicting how long patients have left to live. Additionally, medical students aren’t taught that preservation of life may not be the sole goal in caring for patients.
“As doctors, we often don’t want to give up. We’ve sworn to help our patients and a death is a failure to us,” Litwin said. “But the optimization of life should be our goal. Sometimes survival is of such poor quality that it should not be our primary goal.”
Programs have been launched at the David Geffen School of Medicine at UCLA to address the importance of quality of life and palliative care, Litwin said. However, it can take a time to make a significant change in the institutional mentality.
Dr. David Wallenstein, a clinical assistant professor of family medicine who works with the UCLA Palliative Care Service and serves as medical director for the Skirball Hospice at the Jewish Home of Los Angeles, agrees that patients are not referred to hospice care early enough. He has seen patients referred to hospice who die the same day they arrive.
“What would be ideal when a patient is referred for hospice care is that we have enough time to control their pain and symptoms and enhance their quality of life,” Wallenstein said.
It’s difficult to pinpoint exactly how much time is enough, but Wallenstein said “it would be nice to have at least a couple of weeks.”
“If you have more time, you can fine tune the medications, try a variety of medications and work to minimize side effects,” he said. “You can control pain pretty easily, but is the patient going to be awake and alert? Most patients prefer to be interactive with their loved ones when the end is near.”
Litwin’s study also found that utilizing hospice care could decrease healthcare costs, as those patients were not prescribed costly, but ultimately futile, therapies.
“In an era when increased attention is being focused on what to do to reign in runaway healthcare costs, there should be a clear focus on limiting therapies that ultimately will fail for these patients - costly chemotherapy treatments, more imaging studies, emergency room visits, lengthy ICU stays,” Litwin said. “We need to eliminate costs that don’t provide benefit, and try to give our patients the most dignified deaths that we can.”
For most prostate cancer patients, the arc from diagnosis to death is a long and often slow one, and men most often die from other causes before their prostate cancer can kill them. But there are about 30,000 men every year who will die from their disease and providing appropriate palliative care to this population is vital, Litwin said.
Hospice care, usually in-home care, includes pain and symptom management, management of appetite, psychosocial and mental health services, family counseling and patient mobility services. It is not meant to prolong life, but to make the patients and their families as comfortable as possible.
“Studies have shown that the quality of the death experience is much greater when everyone has the opportunity to face the issues and say the things they need to say,” Litwin said. “Looking back, family members who use hospice rate the quality of the death experience much higher than those who did not use hospice.”
For the study, Litwin and his team identified 14,521 men aged 66 and older who died of prostate cancer between 1992 and 2005. Searching in-patient and physician claims, the team was able to identify those patients that enrolled in hospice care. Of the 14,521 studied, 7,646 or 53 percent used hospice care for a median of 24 days. About 22 percent of patients in the study enrolled within seven days of their death.
“Hospice stays shorter than seven days are too brief to maximize the benefit of enrollment, and individuals making shorter stays receive fewer services and benefit less from the input of the full interdisciplinary team,” the study states. “Increasing appropriate hospice use may improve the quality of death for men at the end of life while rationalizing health care expenditures during this high-cost period.”
The study was funded by the Urologic Diseases in America Project, which is sponsored by a grant from the National Institute of Diabetes and Digestive and Kidney Diseases, a part of the National Institutes of Health.
The study also found that men with spouses or partners were more likely to take advantage of hospice care, while African American men were 20 percent less likely to enroll.
For hospice care to be most effective, patients should be enrolled for several weeks prior to their deaths. However, the study found most men enrolled just one to two weeks before they died, said Dr. Mark Litwin, a professor of urology and public health, a Jonsson Cancer Center researcher and senior author of the study.
“It’s important that we maximize quality of life when quantity of life cannot be changed,” Litwin said. “Most men are being referred to hospice too late and that timing hasn’t changed in the last 20 years, which is unfortunate. As cancer specialists, we should offer these patients the best quality of life that we can, and that often means offering them the best quality of death that we can give them.”
The study appears Oct. 11, 2010 in the early, online edition of Archives of Internal Medicine.
The primary reason for the delay in referrals to hospice is that oncologists often are loathe to give up the fight, and they aren’t good at predicting how long patients have left to live. Additionally, medical students aren’t taught that preservation of life may not be the sole goal in caring for patients.
“As doctors, we often don’t want to give up. We’ve sworn to help our patients and a death is a failure to us,” Litwin said. “But the optimization of life should be our goal. Sometimes survival is of such poor quality that it should not be our primary goal.”
Programs have been launched at the David Geffen School of Medicine at UCLA to address the importance of quality of life and palliative care, Litwin said. However, it can take a time to make a significant change in the institutional mentality.
Dr. David Wallenstein, a clinical assistant professor of family medicine who works with the UCLA Palliative Care Service and serves as medical director for the Skirball Hospice at the Jewish Home of Los Angeles, agrees that patients are not referred to hospice care early enough. He has seen patients referred to hospice who die the same day they arrive.
“What would be ideal when a patient is referred for hospice care is that we have enough time to control their pain and symptoms and enhance their quality of life,” Wallenstein said.
It’s difficult to pinpoint exactly how much time is enough, but Wallenstein said “it would be nice to have at least a couple of weeks.”
“If you have more time, you can fine tune the medications, try a variety of medications and work to minimize side effects,” he said. “You can control pain pretty easily, but is the patient going to be awake and alert? Most patients prefer to be interactive with their loved ones when the end is near.”
Litwin’s study also found that utilizing hospice care could decrease healthcare costs, as those patients were not prescribed costly, but ultimately futile, therapies.
“In an era when increased attention is being focused on what to do to reign in runaway healthcare costs, there should be a clear focus on limiting therapies that ultimately will fail for these patients - costly chemotherapy treatments, more imaging studies, emergency room visits, lengthy ICU stays,” Litwin said. “We need to eliminate costs that don’t provide benefit, and try to give our patients the most dignified deaths that we can.”
For most prostate cancer patients, the arc from diagnosis to death is a long and often slow one, and men most often die from other causes before their prostate cancer can kill them. But there are about 30,000 men every year who will die from their disease and providing appropriate palliative care to this population is vital, Litwin said.
Hospice care, usually in-home care, includes pain and symptom management, management of appetite, psychosocial and mental health services, family counseling and patient mobility services. It is not meant to prolong life, but to make the patients and their families as comfortable as possible.
“Studies have shown that the quality of the death experience is much greater when everyone has the opportunity to face the issues and say the things they need to say,” Litwin said. “Looking back, family members who use hospice rate the quality of the death experience much higher than those who did not use hospice.”
For the study, Litwin and his team identified 14,521 men aged 66 and older who died of prostate cancer between 1992 and 2005. Searching in-patient and physician claims, the team was able to identify those patients that enrolled in hospice care. Of the 14,521 studied, 7,646 or 53 percent used hospice care for a median of 24 days. About 22 percent of patients in the study enrolled within seven days of their death.
“Hospice stays shorter than seven days are too brief to maximize the benefit of enrollment, and individuals making shorter stays receive fewer services and benefit less from the input of the full interdisciplinary team,” the study states. “Increasing appropriate hospice use may improve the quality of death for men at the end of life while rationalizing health care expenditures during this high-cost period.”
The study was funded by the Urologic Diseases in America Project, which is sponsored by a grant from the National Institute of Diabetes and Digestive and Kidney Diseases, a part of the National Institutes of Health.
Are Physicians and Consumers on the Same Page about Hospice?
Physicians say that hospice is great, but there’s too little service and it’s offered too late. That’s one of the top findings of a new national survey conducted to compare attitudes and perceptions about hospice care among consumers and physicians. Consumers agree with physicians on the quality of hospice and the amount of service that should be provided. But when it comes to the right time to discuss hospice—it’s an individual preference.
Quality of hospice in the U.S. is good to excellent say both groups. Respondents were asked to rate the quality of care received by their loved ones: 64% of consumers and 61% of physicians said the care was excellent.
As for length of service, physicians and consumers agree that patients should be receiving hospice care for at least 90 days, with the majority of the general public (54%) and physicians (52%) identifying six months or longer as the appropriate length of time. But half of hospice patients today receive care for less than three weeks, according to the National Hospice and Palliative Care Organization.
Though nearly everyone says they want more time in hospice, there are key differences between physicians and consumers when it comes to initiating the service. Sixty-two percent of doctors said that hospice in America is offered to patients too late. In contrast, 77 percent of the general public said it was offered at the right time.
When asked about their own loved ones, one out of three consumers and physicians said they would like to start the hospice conversation at the time of diagnosis or the start of treatment. Yet only one out of five physicians actually starts the conversation then.
“Being ready to discuss hospice is clearly a very personal matter,” says Perry Farmer, President of Crossroads Hospice, which commissioned the survey. “Sadly, many physicians and patients wait until all treatment options have been exhausted to even bring up the subject. Hospice care helps the terminally ill live the remainder of their lives with comfort and confidence—it’s a godsend to many families.”
Porter Storey, MD, FAAHPM, executive vice president of the American Academy of Hospice and Palliative Medicine, said he hopes the survey results will encourage doctors to make sure their patients know the benefits of this special type of medical care. “We’ve always known that patients start receiving hospice care late, missing out on months of symptom relief and the many other ways hospice care can improve quality of life for them and their families, but it’s good to see that patients and doctors do appreciate its value and want to talk about it.” he said.
The Hospice Care study is a comprehensive survey of adults and physicians across America. Respondents included 700 consumers age 35 and older and 300 physicians: 200 specialists and 100 primary care physicians. All respondents had some familiarity with hospice.
Quality of hospice in the U.S. is good to excellent say both groups. Respondents were asked to rate the quality of care received by their loved ones: 64% of consumers and 61% of physicians said the care was excellent.
As for length of service, physicians and consumers agree that patients should be receiving hospice care for at least 90 days, with the majority of the general public (54%) and physicians (52%) identifying six months or longer as the appropriate length of time. But half of hospice patients today receive care for less than three weeks, according to the National Hospice and Palliative Care Organization.
Though nearly everyone says they want more time in hospice, there are key differences between physicians and consumers when it comes to initiating the service. Sixty-two percent of doctors said that hospice in America is offered to patients too late. In contrast, 77 percent of the general public said it was offered at the right time.
When asked about their own loved ones, one out of three consumers and physicians said they would like to start the hospice conversation at the time of diagnosis or the start of treatment. Yet only one out of five physicians actually starts the conversation then.
“Being ready to discuss hospice is clearly a very personal matter,” says Perry Farmer, President of Crossroads Hospice, which commissioned the survey. “Sadly, many physicians and patients wait until all treatment options have been exhausted to even bring up the subject. Hospice care helps the terminally ill live the remainder of their lives with comfort and confidence—it’s a godsend to many families.”
Porter Storey, MD, FAAHPM, executive vice president of the American Academy of Hospice and Palliative Medicine, said he hopes the survey results will encourage doctors to make sure their patients know the benefits of this special type of medical care. “We’ve always known that patients start receiving hospice care late, missing out on months of symptom relief and the many other ways hospice care can improve quality of life for them and their families, but it’s good to see that patients and doctors do appreciate its value and want to talk about it.” he said.
The Hospice Care study is a comprehensive survey of adults and physicians across America. Respondents included 700 consumers age 35 and older and 300 physicians: 200 specialists and 100 primary care physicians. All respondents had some familiarity with hospice.
Private Insurers Control Health Care Spending Better than Medicare
One big difference: hospice spending in McAllen was just a quarter of the level in El Paso and the national averages. Medicare enrollees in McAllen were far more likely to be admitted to the hospital and to die in the hospital than they were in El Paso. They were also much more likely to be seen near the end of life by more than 10 physicians.
Private insurers appear to be more effective in controlling health care spending differences between two Texas cities than Medicare, according to researchers from The University of Texas Health Science Center at Houston (UTHealth) School of Public Health. Researchers found that sharp disparities in per-capita Medicare healthcare spending between McAllen and El Paso were significantly diminished when private insurance paid for health care costs in the under-65 population.
“For a number of reasons, insurers generally are reluctant to intrude on medical service decision-making,” said study lead author, Luisa Franzini, Ph.D., associate professor at the UTHealth School of Public Health. “But the fact that utilization management mechanisms exist for private insurers may prompt some physicians, who might otherwise overuse certain services, to exercise more restraint,” said Franzini.
Co-authors of the study were Osama Mikhail, Ph.D., director of the UTHealth Fleming Center for Healthcare Management and Jonathan Skinner of Dartmouth College. The study is published in the December issue of Health Affairs.
Private insurance companies have utilization management mechanisms in place which require preauthorization of elective inpatient admissions and they encourage management of chronic conditions through a variety of condition-specific management programs, according to Franzini. “Catastrophic events or high claims could send a red flag in the system which activates a case management process of reviewing alternative treatment plans,” said Franzini.
According to the authors, the study cannot explain definitively why variations in health care spending drop under private coverage but suggest utilization management mechanisms.
The study is a follow-up to a 2009 New Yorker article by Atul Gawande. The article used data from the Dartmouth Atlas of Health Care on variations in Medicare spending to show that per capita spending in McAllen was 86 percent higher than in El Paso.
In the Health Affairs study, Medicare spending in McAllen was 63 percent higher than in El Paso for inpatient care, 32 percent higher for outpatient care and 65 percent higher for Part B professional services.The largest difference was for home health care:McAllen was nearly five times greater than the average in El Paso and 7.14 times the national average. On the other hand, hospice spending in McAllen was just a quarter of the level in El Paso and the national averages. Medicare enrollees in McAllen were far more likely to be admitted to the hospital and to die in the hospital than they were in El Paso. They were also much more likely to be seen near the end of life by more than 10 physicians.
Researchers sought to determine whether those same health care providers would demonstrate similar patterns of care for people under age 65. Using 2008 claims data from Blue Cross and Blue Shield of Texas, the state’s largest commercial health insurer, they analyzed spending patterns for people under age 65.
For the under-65 population insured by Blue Cross and Blue Shield of Texas, total spending per member per year in McAllen was 7 percent lower than in El Paso. Spending on professional and inpatient services was similar in both cities, and spending for outpatient services in McAllen was 31 percent less. Use of medical services was also similar or slightly lower in McAllen compared to El Paso. Inpatient admissions in McAllen were 84 percent of admissions in El Paso; professional and outpatient services in McAllen were 94 percent and 72 percent, respectively, of those in El Paso.
However, within the under 65 population, for those aged 50-64, inpatient admissions were 89 percent higher in McAllen than El Paso and per-patient inpatient spending was 117 percent higher. But outpatient medical service spending was 22 percent lower, leaving overall spending for this age group 23 percent above those in El Paso, still significantly below the 86 percent Medicare difference.
Researchers explored several potential explanations for their findings. Neither differences in health care prices nor population disease burden between the two cities accounted for these spending variations.
The most probable explanation, they speculate, has to do with which payers are better at controlling costs around what Mikhail calls the “grey zone of treatment” – areas where legitimate medical judgments can be quite variable. According to Mikhail, health care needs and service use generally increase as the population ages, thereby expanding “the grey zone of treatment and opening the door to greater variation,” which could explain greater variability in private insurance spending for the over 50 population (compared to the under-50) in McAllen versus in El Paso. Medicare exercises very little utilization management, whereas private insurers, such as Blue Cross Blue Shield of Texas, can be more active about controlling service use.
For example, Blue Cross and Blue Shield of Texas encourages members with costly “big ticket” conditions to participate in a disease management program. Other mechanisms encourage providers to practice evidence-based, cost-effective care. In addition, all elective inpatient admissions must be preauthorized. Pre-admission and post-discharge counseling are used to establish postoperative goals and identify discharge planning needs.
“We are pleased to participate in a study that sheds some light on the cost of care and how utilization/disease management and other initiatives can help to control costs,” says Darren Rodgers, president of Blue Cross and Blue Shield of Texas.
“We’ve launched a range of initiatives to fight the rise in health care costs, plus we encourage our members to be smart consumers of health care by knowing how their coverage works, providing cost and quality information about their choice of providers, and – above all – by staying healthy,” said Rodgers. “Our wellness programs all promote the fact that exercising, eating right, and managing chronic conditions can significantly reduce the need for hospital care – and lower medical costs.”
“Variation in and of itself isn’t necessarily bad,” Franzini said. “Some variations may be justified on medical grounds but large variations may be a signal that something else is going on as well.” Franzini and her colleagues are currently working with Blue Cross and Blue Shield of Texas to examine spending variations across Texas.
Private insurers appear to be more effective in controlling health care spending differences between two Texas cities than Medicare, according to researchers from The University of Texas Health Science Center at Houston (UTHealth) School of Public Health. Researchers found that sharp disparities in per-capita Medicare healthcare spending between McAllen and El Paso were significantly diminished when private insurance paid for health care costs in the under-65 population.
“For a number of reasons, insurers generally are reluctant to intrude on medical service decision-making,” said study lead author, Luisa Franzini, Ph.D., associate professor at the UTHealth School of Public Health. “But the fact that utilization management mechanisms exist for private insurers may prompt some physicians, who might otherwise overuse certain services, to exercise more restraint,” said Franzini.
Co-authors of the study were Osama Mikhail, Ph.D., director of the UTHealth Fleming Center for Healthcare Management and Jonathan Skinner of Dartmouth College. The study is published in the December issue of Health Affairs.
Private insurance companies have utilization management mechanisms in place which require preauthorization of elective inpatient admissions and they encourage management of chronic conditions through a variety of condition-specific management programs, according to Franzini. “Catastrophic events or high claims could send a red flag in the system which activates a case management process of reviewing alternative treatment plans,” said Franzini.
According to the authors, the study cannot explain definitively why variations in health care spending drop under private coverage but suggest utilization management mechanisms.
The study is a follow-up to a 2009 New Yorker article by Atul Gawande. The article used data from the Dartmouth Atlas of Health Care on variations in Medicare spending to show that per capita spending in McAllen was 86 percent higher than in El Paso.
In the Health Affairs study, Medicare spending in McAllen was 63 percent higher than in El Paso for inpatient care, 32 percent higher for outpatient care and 65 percent higher for Part B professional services.The largest difference was for home health care:McAllen was nearly five times greater than the average in El Paso and 7.14 times the national average. On the other hand, hospice spending in McAllen was just a quarter of the level in El Paso and the national averages. Medicare enrollees in McAllen were far more likely to be admitted to the hospital and to die in the hospital than they were in El Paso. They were also much more likely to be seen near the end of life by more than 10 physicians.
Researchers sought to determine whether those same health care providers would demonstrate similar patterns of care for people under age 65. Using 2008 claims data from Blue Cross and Blue Shield of Texas, the state’s largest commercial health insurer, they analyzed spending patterns for people under age 65.
For the under-65 population insured by Blue Cross and Blue Shield of Texas, total spending per member per year in McAllen was 7 percent lower than in El Paso. Spending on professional and inpatient services was similar in both cities, and spending for outpatient services in McAllen was 31 percent less. Use of medical services was also similar or slightly lower in McAllen compared to El Paso. Inpatient admissions in McAllen were 84 percent of admissions in El Paso; professional and outpatient services in McAllen were 94 percent and 72 percent, respectively, of those in El Paso.
However, within the under 65 population, for those aged 50-64, inpatient admissions were 89 percent higher in McAllen than El Paso and per-patient inpatient spending was 117 percent higher. But outpatient medical service spending was 22 percent lower, leaving overall spending for this age group 23 percent above those in El Paso, still significantly below the 86 percent Medicare difference.
Researchers explored several potential explanations for their findings. Neither differences in health care prices nor population disease burden between the two cities accounted for these spending variations.
The most probable explanation, they speculate, has to do with which payers are better at controlling costs around what Mikhail calls the “grey zone of treatment” – areas where legitimate medical judgments can be quite variable. According to Mikhail, health care needs and service use generally increase as the population ages, thereby expanding “the grey zone of treatment and opening the door to greater variation,” which could explain greater variability in private insurance spending for the over 50 population (compared to the under-50) in McAllen versus in El Paso. Medicare exercises very little utilization management, whereas private insurers, such as Blue Cross Blue Shield of Texas, can be more active about controlling service use.
For example, Blue Cross and Blue Shield of Texas encourages members with costly “big ticket” conditions to participate in a disease management program. Other mechanisms encourage providers to practice evidence-based, cost-effective care. In addition, all elective inpatient admissions must be preauthorized. Pre-admission and post-discharge counseling are used to establish postoperative goals and identify discharge planning needs.
“We are pleased to participate in a study that sheds some light on the cost of care and how utilization/disease management and other initiatives can help to control costs,” says Darren Rodgers, president of Blue Cross and Blue Shield of Texas.
“We’ve launched a range of initiatives to fight the rise in health care costs, plus we encourage our members to be smart consumers of health care by knowing how their coverage works, providing cost and quality information about their choice of providers, and – above all – by staying healthy,” said Rodgers. “Our wellness programs all promote the fact that exercising, eating right, and managing chronic conditions can significantly reduce the need for hospital care – and lower medical costs.”
“Variation in and of itself isn’t necessarily bad,” Franzini said. “Some variations may be justified on medical grounds but large variations may be a signal that something else is going on as well.” Franzini and her colleagues are currently working with Blue Cross and Blue Shield of Texas to examine spending variations across Texas.
Tuesday, May 10, 2011
Supply of hospice services strongly associated with local area's median household income
Strategies needed to encourage end-of-life programs in underserved, poorer communities, say U-M researchers
Wealth, population size, race and age associate with the supply of hospice care available in a county, according to a study published in the Journal of Pain and Symptom Management this month.
Local availability is an important predictor of use of hospice programs, which are end-of-life services that have been shown to improve pain control, maintain patients’ independence and even extend life, says lead author Maria Silveira, M.D., M.P.H., of the Veterans Affairs Ann Arbor Healthcare System and assistant professor in the Department of Internal Medicine at the University of Michigan.
This study is the first to examine geographic variation in the supply of hospice services and its association with community wealth.
The researchers found that for every $1,000 increase in median household income in a county, the supply of hospice services increased by 3 percent.
Hospice supply also was larger in counties with larger populations, more African Americans and people over the age of 65.
But hospice supply decreased in larger geographic counties and those with more Hispanic residents.
More research is needed, says Silveira and her co-authors, but these study results indicate the traditional model for structuring and financing hospice needs to be re-designed. The building of community hospices is often funded through charity and this is one possible explanation for the disparities seen in the study.
“Wealthy communities can afford large amounts of charitable giving and thus have the resources to build local hospices; whereas poorer communities may not be able to donate in the amounts necessary to do the same,” says Silveira.
While the amount of hospice use has increased tremendously in the last twenty years, most Americans die without using hospice care. In 2002, only 28.6 percent of Medicare beneficiaries who died had enrolled in hospice.
To improve the feasibility of hospice in poorer communities, Silveira and her co-authors suggest that Medicare provide assistance or incentives for building hospices in poorer communities, in addition to making sure that reimbursement for hospice services match its cost.
“Since most hospice care in the US is paid for with public funds via Medicare- the government has a responsibility to ensure that access to hospice is equitable,” says Silveira.
Silveira and her co-authors stressed that more research is needed to find out how patient preferences Influence access to hospice by underserved communities.
“The relationship between community affluence and supply of hospice services could reflect community values about hospice and indicate that hospice, as a business, merely follows the demand for its services,” Silveira says.
“Given the tremendous, proven benefit of hospice programs, supply of these services needs ongoing study.”
Additional authors: Susan Goold, M.D., M.P.H., M.A. VA Ann Arbor Healthcare System and professor in the U-M departments of Internal Medicine and Health Management and Policy; Lawrence F. McMahon, M.D., M.P.H., chief of the U-M Division of General Medicine and professor in the departments of Internal Medicine and Health Management and Policy; Stephen Connor, Ph.D. of the National Hospice and Palliative Care Organization; and Chris Feudtner, M.D., Ph.D., M.P.H. of the Children’s Hospital of Philadelphia.
Wealth, population size, race and age associate with the supply of hospice care available in a county, according to a study published in the Journal of Pain and Symptom Management this month.
Local availability is an important predictor of use of hospice programs, which are end-of-life services that have been shown to improve pain control, maintain patients’ independence and even extend life, says lead author Maria Silveira, M.D., M.P.H., of the Veterans Affairs Ann Arbor Healthcare System and assistant professor in the Department of Internal Medicine at the University of Michigan.
This study is the first to examine geographic variation in the supply of hospice services and its association with community wealth.
The researchers found that for every $1,000 increase in median household income in a county, the supply of hospice services increased by 3 percent.
Hospice supply also was larger in counties with larger populations, more African Americans and people over the age of 65.
But hospice supply decreased in larger geographic counties and those with more Hispanic residents.
More research is needed, says Silveira and her co-authors, but these study results indicate the traditional model for structuring and financing hospice needs to be re-designed. The building of community hospices is often funded through charity and this is one possible explanation for the disparities seen in the study.
“Wealthy communities can afford large amounts of charitable giving and thus have the resources to build local hospices; whereas poorer communities may not be able to donate in the amounts necessary to do the same,” says Silveira.
While the amount of hospice use has increased tremendously in the last twenty years, most Americans die without using hospice care. In 2002, only 28.6 percent of Medicare beneficiaries who died had enrolled in hospice.
To improve the feasibility of hospice in poorer communities, Silveira and her co-authors suggest that Medicare provide assistance or incentives for building hospices in poorer communities, in addition to making sure that reimbursement for hospice services match its cost.
“Since most hospice care in the US is paid for with public funds via Medicare- the government has a responsibility to ensure that access to hospice is equitable,” says Silveira.
Silveira and her co-authors stressed that more research is needed to find out how patient preferences Influence access to hospice by underserved communities.
“The relationship between community affluence and supply of hospice services could reflect community values about hospice and indicate that hospice, as a business, merely follows the demand for its services,” Silveira says.
“Given the tremendous, proven benefit of hospice programs, supply of these services needs ongoing study.”
Additional authors: Susan Goold, M.D., M.P.H., M.A. VA Ann Arbor Healthcare System and professor in the U-M departments of Internal Medicine and Health Management and Policy; Lawrence F. McMahon, M.D., M.P.H., chief of the U-M Division of General Medicine and professor in the departments of Internal Medicine and Health Management and Policy; Stephen Connor, Ph.D. of the National Hospice and Palliative Care Organization; and Chris Feudtner, M.D., Ph.D., M.P.H. of the Children’s Hospital of Philadelphia.
Monday, May 2, 2011
Home and Hospice Care Rates Highest
Though there have been significant improvements in the treatment of head and neck cancer, there is still a lack of data on the experience of end of life care for head and neck cancer patients, according to a new study published in the May 2011 issue of Otolaryngology-Head and Neck Surgery.
As discussed in this study, the United States Department of Veterans Affairs group has developed the Family Assessment of Treatment at the End of life (FATE) survey, which is administered to families of deceased veterans. The purpose of the survey is to assess the quality of treatment at the end of patients' lives, in an effort to provide better end-of-life care to head and neck cancer patients.
The study accessed patient information from the Head and Neck Cancer Specialized Program of Research Excellence database (SPORE) established by the University of Michigan. The overall response rate was 20%.
The majority of the patient population included those with advanced stage tumors, with T3 or T4 primaries. Of these patients, 55% had laryngeal cancer at the time of death, which included those with disease in the head and neck, and approximately one third died of distance metastases (tumor stage). The study results show that in comparison to the patients who died at home or in hospice, the approximately one third of those who died in the hospital had a significantly lower FATE score, indicating less satisfaction with end of life care.
Since many advanced tumors are given a poor prognosis, palliative care is provided to allow for timely management of pain. It is important to note that, not all patients with head and neck cancer will receive exceptional care at the end of life. Studies show that 22% of patients had family members present at the time of death, with only 33% stating they felt comfortable with their primary care provider, and only a small number stating symptom control was adequate. The data received from patients receiving palliative care resulted in a higher FATE score, suggesting that treatments may improve the quality of patients' lives. It is important to note that when social factors or further circumstances impact care, palliative care may be beneficial even when death is not imminent.
The evidence in the study suggests that changes in care standards may benefit future patients. Author Andrew G. Shuman, MD, writes, "This study, with its utilization of a validated survey instrument, coupled with a large, prospectively collected database of head and neck cancer patients, facilitated a concrete and valid analysis of the end-of-life experience of head and neck cancer patients."
As discussed in this study, the United States Department of Veterans Affairs group has developed the Family Assessment of Treatment at the End of life (FATE) survey, which is administered to families of deceased veterans. The purpose of the survey is to assess the quality of treatment at the end of patients' lives, in an effort to provide better end-of-life care to head and neck cancer patients.
The study accessed patient information from the Head and Neck Cancer Specialized Program of Research Excellence database (SPORE) established by the University of Michigan. The overall response rate was 20%.
The majority of the patient population included those with advanced stage tumors, with T3 or T4 primaries. Of these patients, 55% had laryngeal cancer at the time of death, which included those with disease in the head and neck, and approximately one third died of distance metastases (tumor stage). The study results show that in comparison to the patients who died at home or in hospice, the approximately one third of those who died in the hospital had a significantly lower FATE score, indicating less satisfaction with end of life care.
Since many advanced tumors are given a poor prognosis, palliative care is provided to allow for timely management of pain. It is important to note that, not all patients with head and neck cancer will receive exceptional care at the end of life. Studies show that 22% of patients had family members present at the time of death, with only 33% stating they felt comfortable with their primary care provider, and only a small number stating symptom control was adequate. The data received from patients receiving palliative care resulted in a higher FATE score, suggesting that treatments may improve the quality of patients' lives. It is important to note that when social factors or further circumstances impact care, palliative care may be beneficial even when death is not imminent.
The evidence in the study suggests that changes in care standards may benefit future patients. Author Andrew G. Shuman, MD, writes, "This study, with its utilization of a validated survey instrument, coupled with a large, prospectively collected database of head and neck cancer patients, facilitated a concrete and valid analysis of the end-of-life experience of head and neck cancer patients."
Friday, April 29, 2011
Comparing Hospice and Nonhospice Patient Survival
Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window
Journal of Pain and Symptom Management
Volume 33 | No. 3 | March 2007
Key Points
• There is a growing body of evidence to counter the argument that the use of opioid and sedative medications for symptom relief hastens death.
• Our findings suggest that hospice may indeed have a positive impact on patients’ longevity or at least not hasten death.
• For the five types of cancer and congestive heart failure (CHF) patient populations combined, the mean survival was 29 days longer for hospice patients than for nonhospice patients.
• CHF patients who eventually chose hospice had a mean survival of 402 days compared with 321 days for those who did not.
• The mean survival was also significantly longer for the hospice patients with lung cancer, pancreatic cancer, and marginally significant for colon cancer
• Patients in an already weakened condition avoid the risks of overtreatment when they make the decision to enter hospice.
• Entering hospice may improve monitoring and treatment patient receive.
• Several studies have suggested that psychosocial supports may tend to prolong life.
• Findings are important in helping dispel the myth that hospice care hastens a patient’s death.
Abstract
There is a widespread belief by some health care providers and the wider community that medications used to alleviate symptoms may hasten death in hospice patients. Conversely, there is a clinical impression among hospice providers that hospice might extend some patients’ lives. We studied the difference of survival periods of terminally ill patients between those using hospice and those not using hospices. We performed retrospective statistical analysis on selected cohorts from large paid claim databases of Medicare beneficiaries for five types of cancer and congestive heart failure (CHF) patients. We analyzed the survival of 4493 patients from a sample of 5% of the entire Medicare beneficiary population for 1998-2002 associated with six narrowly defined indicative markers. For the six patient populations combined, the mean survival was 29 days longer for hospice patients than for nonhospice patients. The mean survival was also significantly longer for the hospice patients with CHF, lung cancer, pancreatic cancer, and marginally significant for colon cancer (P = 0.08). Mean survival was not significantly different (statistically) for hospice vs. nonhospice patients with breast or prostrate cancer. Across groups studied, hospice enrollment is not significantly associated with shorter survival, but for certain terminally ill patients, hospice is associated with longer survival times. The claims-based method used death within three years as a surrogate for a clinical judgment to recommend hospice, which means our findings apply to cases where a clinician is very sure the patient will die within three years, and it points to the need to validate these findings.
J Pain Symptom Manage 2007;33:238-246. © 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Journal of Pain and Symptom Management
Volume 33 | No. 3 | March 2007
Key Points
• There is a growing body of evidence to counter the argument that the use of opioid and sedative medications for symptom relief hastens death.
• Our findings suggest that hospice may indeed have a positive impact on patients’ longevity or at least not hasten death.
• For the five types of cancer and congestive heart failure (CHF) patient populations combined, the mean survival was 29 days longer for hospice patients than for nonhospice patients.
• CHF patients who eventually chose hospice had a mean survival of 402 days compared with 321 days for those who did not.
• The mean survival was also significantly longer for the hospice patients with lung cancer, pancreatic cancer, and marginally significant for colon cancer
• Patients in an already weakened condition avoid the risks of overtreatment when they make the decision to enter hospice.
• Entering hospice may improve monitoring and treatment patient receive.
• Several studies have suggested that psychosocial supports may tend to prolong life.
• Findings are important in helping dispel the myth that hospice care hastens a patient’s death.
Abstract
There is a widespread belief by some health care providers and the wider community that medications used to alleviate symptoms may hasten death in hospice patients. Conversely, there is a clinical impression among hospice providers that hospice might extend some patients’ lives. We studied the difference of survival periods of terminally ill patients between those using hospice and those not using hospices. We performed retrospective statistical analysis on selected cohorts from large paid claim databases of Medicare beneficiaries for five types of cancer and congestive heart failure (CHF) patients. We analyzed the survival of 4493 patients from a sample of 5% of the entire Medicare beneficiary population for 1998-2002 associated with six narrowly defined indicative markers. For the six patient populations combined, the mean survival was 29 days longer for hospice patients than for nonhospice patients. The mean survival was also significantly longer for the hospice patients with CHF, lung cancer, pancreatic cancer, and marginally significant for colon cancer (P = 0.08). Mean survival was not significantly different (statistically) for hospice vs. nonhospice patients with breast or prostrate cancer. Across groups studied, hospice enrollment is not significantly associated with shorter survival, but for certain terminally ill patients, hospice is associated with longer survival times. The claims-based method used death within three years as a surrogate for a clinical judgment to recommend hospice, which means our findings apply to cases where a clinician is very sure the patient will die within three years, and it points to the need to validate these findings.
J Pain Symptom Manage 2007;33:238-246. © 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Hospice care seemed to extend survival for some patients
From Atul Gawande, New Yorker:
Read more http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz1Kut1I8fU
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Read more http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz1Kut1I8fU
Thursday, April 21, 2011
Few Studies Delve Into Hospice Care in Nursing Homes
A new evidence review, Hall S, et al. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database of Systematic Reviews 2011, Issue 3. finds that there’s scant high-quality research on the best comprehensive strategies for nursing homes hoping to ease the suffering of older patients through hospice care.
Researchers only found three studies – all from the United States – that met their criteria to be included. While the findings offer “potentially promising results,” the studies aren’t strong enough to justify recommending their individual approaches, said review lead author Dr. Sue Hall, a palliative care specialist at King’s College London.
Still, the studies suggest that elements of the strategies such as teams of specialists and partnerships between nursing homes and hospice care services “are a key aspect” of care, Hall said.
Hospice care, the focus of the review, refers to care for patients who are dying. It focuses on relieving suffering — including physical, emotional and spiritual pain — and has become increasingly popular in the United States in recent decades.
At the same time, a higher percentage of people are dying in nursing homes, said Marianne Matzo, a professor of palliative care nursing at the University of Oklahoma. The problem, she said, is that “they were not built or set up as a place where people are going to end their lives, especially in these numbers.”
The authors of the Cochrane Library review sought to determine whether there is evidence to support specific hospice approaches at nursing homes for seniors.
The review was published by The Cochrane Collaboration, an international organization that evaluates medical research. Systematic reviews like this one draw evidence-based conclusions about medical practice after considering both the content and quality of existing medical trials on a topic.
The review authors found little reliable research into approaches to hospice care in nursing homes. The three studies they analyzed comprised 735 participants, of whom 75 percent to 81 percent were women.
There were some helpful findings. Family members felt better about care for their relatives after the patients took part in a program that aimed to identify those who would benefit from hospice care. Dying patients with dementia seemed to have less discomfort when they were part of a program that included special units for them, education for staff and special individual plans of care. However, the review authors said there are questions about the reliability of both findings.
Two studies found that hospice care strategies improved the delivery of care, but they did not determine if patients actually fared better. None of the studies examined the cost effectiveness of the approaches used.
Cost, of course, is a crucial factor in health care. In the United States, current payment systems can hurt high-quality care at nursing homes, said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at Mt. Sinai School of Medicine.
“If I have a patient in New York who develops an infection in the nursing home, I know that all the data tell me if I treat them in the nursing home, the patient is less likely to develop confusion or delirium, less likely to develop a pressure ulcer, more likely to recover,” Morrison said. “But if I transfer the patient to the hospital, Medicare pays for the ambulance and the entire hospitalization and everything else, and I can keep that bed empty at that nursing home and still be paid by Medicaid for that bed and not have to pay for nursing staff or for it to be cleaned.”
Hall, the review lead author, called for high-quality studies into comprehensive hospice strategies in nursing homes. She acknowledged that there is still a need to agree on how to figure out whether a strategy works. However, she said, funders will need to pay for the research.
Source: Health Behavior News Service, part of the Center for Advancing Health, is required.
Researchers only found three studies – all from the United States – that met their criteria to be included. While the findings offer “potentially promising results,” the studies aren’t strong enough to justify recommending their individual approaches, said review lead author Dr. Sue Hall, a palliative care specialist at King’s College London.
Still, the studies suggest that elements of the strategies such as teams of specialists and partnerships between nursing homes and hospice care services “are a key aspect” of care, Hall said.
Hospice care, the focus of the review, refers to care for patients who are dying. It focuses on relieving suffering — including physical, emotional and spiritual pain — and has become increasingly popular in the United States in recent decades.
At the same time, a higher percentage of people are dying in nursing homes, said Marianne Matzo, a professor of palliative care nursing at the University of Oklahoma. The problem, she said, is that “they were not built or set up as a place where people are going to end their lives, especially in these numbers.”
The authors of the Cochrane Library review sought to determine whether there is evidence to support specific hospice approaches at nursing homes for seniors.
The review was published by The Cochrane Collaboration, an international organization that evaluates medical research. Systematic reviews like this one draw evidence-based conclusions about medical practice after considering both the content and quality of existing medical trials on a topic.
The review authors found little reliable research into approaches to hospice care in nursing homes. The three studies they analyzed comprised 735 participants, of whom 75 percent to 81 percent were women.
There were some helpful findings. Family members felt better about care for their relatives after the patients took part in a program that aimed to identify those who would benefit from hospice care. Dying patients with dementia seemed to have less discomfort when they were part of a program that included special units for them, education for staff and special individual plans of care. However, the review authors said there are questions about the reliability of both findings.
Two studies found that hospice care strategies improved the delivery of care, but they did not determine if patients actually fared better. None of the studies examined the cost effectiveness of the approaches used.
Cost, of course, is a crucial factor in health care. In the United States, current payment systems can hurt high-quality care at nursing homes, said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at Mt. Sinai School of Medicine.
“If I have a patient in New York who develops an infection in the nursing home, I know that all the data tell me if I treat them in the nursing home, the patient is less likely to develop confusion or delirium, less likely to develop a pressure ulcer, more likely to recover,” Morrison said. “But if I transfer the patient to the hospital, Medicare pays for the ambulance and the entire hospitalization and everything else, and I can keep that bed empty at that nursing home and still be paid by Medicaid for that bed and not have to pay for nursing staff or for it to be cleaned.”
Hall, the review lead author, called for high-quality studies into comprehensive hospice strategies in nursing homes. She acknowledged that there is still a need to agree on how to figure out whether a strategy works. However, she said, funders will need to pay for the research.
Source: Health Behavior News Service, part of the Center for Advancing Health, is required.
Cancer Patients who Disenroll from Hospice have Increased Hospitalizations
They are less likely to Die at Home
Disenrollment can have a Physical and Financial Toll
According to a new study, patients with terminal cancer that disenrolled from hospice care had significantly higher rates of hospitalizations – including admission to the emergency department and intensive care unit – than patients who remained under the care of hospice. Furthermore, patients who disenrolled from hospice were more likely to die in the hospital than patients who remained with hospice until their deaths.
“Impact of Hospice Disenrollment on Healthcare Use and Medical Expenditures for Patients with Cancer” is published in the October 1, 2010 issue of Journal of Clinical Oncology.
The study, led by researchers at the Mount Sinai School of Medicine, found that:
• 33.9 percent of the patients who disenrolled from hospice care were admitted to an emergency department, in contrast with only 3.1 percent of hospice patients.
• 39.8 percent of disenrolled patients were admitted to the hospital as an inpatient, in contrast with only 1.6 percent of hospice patients.
• Disenrolled patients spent an average of 19.3 days in the hospital, whereas hospice patients spent an average of 6.7 days.
• 9.6 percent of disenrolled patients died in the hospital, compared to only 0.2 percent of hospice patients.
• Costs of care for patients with cancer who disenrolled from hospice were nearly five times higher than for patients who remained with hospice.
Wrote the study authors, “Policy makers have called for tightening eligibility restrictions for the MHB (Medicare Hospice Benefit) as part of a wider effort to reduce high Medicare expenditures; our results suggest that addressing hospice disenrollment may be an effective means of reducing Medicare expenditures for hospice users without restriction access to the MHB.”
Further recommendations suggest that oncologists explore outpatient palliative care services that offer multidisciplinary care, symptom control, and end-of-life planning expertise in a context that enables a patient and family to maintain contact with the oncology clinic.
Disenrollment can have a Physical and Financial Toll
According to a new study, patients with terminal cancer that disenrolled from hospice care had significantly higher rates of hospitalizations – including admission to the emergency department and intensive care unit – than patients who remained under the care of hospice. Furthermore, patients who disenrolled from hospice were more likely to die in the hospital than patients who remained with hospice until their deaths.
“Impact of Hospice Disenrollment on Healthcare Use and Medical Expenditures for Patients with Cancer” is published in the October 1, 2010 issue of Journal of Clinical Oncology.
The study, led by researchers at the Mount Sinai School of Medicine, found that:
• 33.9 percent of the patients who disenrolled from hospice care were admitted to an emergency department, in contrast with only 3.1 percent of hospice patients.
• 39.8 percent of disenrolled patients were admitted to the hospital as an inpatient, in contrast with only 1.6 percent of hospice patients.
• Disenrolled patients spent an average of 19.3 days in the hospital, whereas hospice patients spent an average of 6.7 days.
• 9.6 percent of disenrolled patients died in the hospital, compared to only 0.2 percent of hospice patients.
• Costs of care for patients with cancer who disenrolled from hospice were nearly five times higher than for patients who remained with hospice.
Wrote the study authors, “Policy makers have called for tightening eligibility restrictions for the MHB (Medicare Hospice Benefit) as part of a wider effort to reduce high Medicare expenditures; our results suggest that addressing hospice disenrollment may be an effective means of reducing Medicare expenditures for hospice users without restriction access to the MHB.”
Further recommendations suggest that oncologists explore outpatient palliative care services that offer multidisciplinary care, symptom control, and end-of-life planning expertise in a context that enables a patient and family to maintain contact with the oncology clinic.
Research Shows Patients May Live Longer with Hospice and Palliative Care
A new study released by the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived, on average, almost two months longer than those who received standard care. Researchers also found that the patients receiving palliative care reported a higher quality of life through the final course of their illness.
The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment. Sharing the same philosophy of hospice care which is usually provided in the final months of life, palliative care may be provided at any stage during a serious or life-limiting illness.
Researchers also found that when patients received palliative care services, they were also more likely to elect hospice services.
"With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released Wednesday in the New England Journal of Medicine.
This new study adds to the body of evidence showing that many patients live longer with hospice and palliative care.
A 2007 study that looked at Medicare beneficiaries with some of the most common diagnoses leading to death, found that patients who received hospice services lived on average, 29 days longer than those who did not receive hospice care. This study, published in the Journal of Pain and Symptom Management (March 2007) looked at 4,493 terminally ill patients with either congestive heart failure or cancer of the breast, colon, lung, pancreas, or prostate.
In an earlier study looking at patients with 16 of the most common terminal diagnoses, researchers found that hospice patients lived longer. On average, this ranged from 20 days for those with a diagnosis of gallbladder cancer to 69 days for the cohort of breast cancer patients (JPSM, September 2004).
“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.”
The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment. Sharing the same philosophy of hospice care which is usually provided in the final months of life, palliative care may be provided at any stage during a serious or life-limiting illness.
Researchers also found that when patients received palliative care services, they were also more likely to elect hospice services.
"With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released Wednesday in the New England Journal of Medicine.
This new study adds to the body of evidence showing that many patients live longer with hospice and palliative care.
A 2007 study that looked at Medicare beneficiaries with some of the most common diagnoses leading to death, found that patients who received hospice services lived on average, 29 days longer than those who did not receive hospice care. This study, published in the Journal of Pain and Symptom Management (March 2007) looked at 4,493 terminally ill patients with either congestive heart failure or cancer of the breast, colon, lung, pancreas, or prostate.
In an earlier study looking at patients with 16 of the most common terminal diagnoses, researchers found that hospice patients lived longer. On average, this ranged from 20 days for those with a diagnosis of gallbladder cancer to 69 days for the cohort of breast cancer patients (JPSM, September 2004).
“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.”
Hospice Care Saves Money for Medicare
Average Savings of $2,309 per Hospice Beneficiary
Findings of a major study of hospice care in America show that hospice services save money for Medicare and bring quality care to patients with life-limiting illness and their families. This provides useful evidence to support the many benefits of hospice, reports the National Hospice and Palliative Care Organization.
Researchers found that hospice reduced Medicare costs by an average of $2,309 per hospice patient. The new study from Duke University appears in the October 2007 issue of the professional journal “Social Science & Medicine.”
Additionally, Medicare costs would be reduced for seven out of 10 hospice recipients if hospice has been used for a longer period of time the study found.
“Given that hospice has been widely demonstrated to improve quality of life of patients and families...the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs,” writes lead author Don H. Taylor, Jr., assistant professor of public policy at Duke’s Sanford Institute of Public Policy.
For cancer patients, hospice use decreased Medicare costs up until 233 days of care. For non-cancer patients there were cost savings seen up until 154 days of care. While hospice use beyond these periods cost Medicare more than conventional care, the report’s authors wrote that “More effort should be put into increasing short stays as opposed to focusing on shortening long ones.”
The National Hospice and Palliative Care Organization reports that 1.3 million patients received care from one of the nation’s 4,500 hospice providers in 2006. This represents a steady increase of more than 100,000 patients than the previous year. Approximately 35 percent of all deaths in the US were under the care of a hospice program.
“The trends for increased usage of hospice are expected to continue as we see an aging generation of baby-boomers face end-of-life situations for themselves and their parents,” remarked J. Donald Schumacher, NHPCO president and CEO. “Hospice helps people live with dignity, comfort, and compassion during life’s final journey – to know definitively that it provides a cost savings to Medicare is an additional benefit.”
Hospice is not a place but a philosophy of care that provides pain management, symptom control, psychosocial support, and spiritual care to patients and their families.
This study is a landmark independent research effort, not only because it shows cost savings for hospice utilization, but because it also addresses research flaws and questionable analyses in previous hospice cost studies. The study used a methodology to match Medicare beneficiaries who used hospice and those who did not in a fashion that could be described as an “apples to apples” approach that yields sound results.
“Given that November is National Hospice Palliative Care Month, it’s most fitting that this valuable study come out now,” added Schumacher.
Patients with Dementia Benefit from Hospice Care
While dementia is one of the leading causes of death in the United States, it accounts for only 11 percent of hospice admissions and little is known about the quality of the care they receive, reports the National Hospice and Palliative Care Organization. Research published in the July issue of the Journal of Pain and Symptom Management, “Hospice Care for Patients with Dementia,” reinforces the value of hospice care for these patients and their family caregivers.
Researchers found that families of patients with dementia evaluated the care received from hospice as highly as patients with other diagnoses. Reports of unmet patient needs for treatment of symptoms were less frequent as well.
“What this tells hospice professionals is that in spite of the challenges of caring for patients with dementia, hospice is indeed beneficial,” said Stephen Connor, NHPCO vice president of research and co-author of the study. “Hospices can effectively help patients struggling with dementia at the end of their lives and providers need to continue reaching out to help those patients and families in need.”
Researchers used data from the Family Evaluation of Hospice Care, an Internet based repository and benchmarking tool that collects data from bereaved families regarding the quality of hospice care. A total of 77,123 surveys submitted by 796 hospices in 2005 were used in this study. Developed by Brown University and NHPCO, the Family Evaluation of Hospice Care lets researchers look at the relationship of length of stay, perceived timing of hospice referral, and quality of end-of-life care.
This research was led by Dr. Susan Mitchell at the Institute for Aging Research at Harvard University, was done in collaboration with the National Hospice and Palliative Care Organization and researchers at Brown University and was funded by the Alzheimer’s Association.
Researchers found that families of patients with dementia evaluated the care received from hospice as highly as patients with other diagnoses. Reports of unmet patient needs for treatment of symptoms were less frequent as well.
“What this tells hospice professionals is that in spite of the challenges of caring for patients with dementia, hospice is indeed beneficial,” said Stephen Connor, NHPCO vice president of research and co-author of the study. “Hospices can effectively help patients struggling with dementia at the end of their lives and providers need to continue reaching out to help those patients and families in need.”
Researchers used data from the Family Evaluation of Hospice Care, an Internet based repository and benchmarking tool that collects data from bereaved families regarding the quality of hospice care. A total of 77,123 surveys submitted by 796 hospices in 2005 were used in this study. Developed by Brown University and NHPCO, the Family Evaluation of Hospice Care lets researchers look at the relationship of length of stay, perceived timing of hospice referral, and quality of end-of-life care.
This research was led by Dr. Susan Mitchell at the Institute for Aging Research at Harvard University, was done in collaboration with the National Hospice and Palliative Care Organization and researchers at Brown University and was funded by the Alzheimer’s Association.
Hospice Patients Lived an Average 29 Days Longer
A study published in the March 2007 issue of the Journal of Pain and Symptom Management reports that hospice care may prolong the lives of some terminally ill patients.
Among the patient populations studied, the mean survival was 29 days longer for hospice patients than for non-hospice patients. In other words, patients who chose hospice care lived an average of one month longer than similar patients who did not choose hospice care.
Sponsored by the National Hospice and Palliative Care Organization, the study was conducted by NHPCO researchers in collaboration with the highly regarded consulting and actuarial firm, Milliman, Inc.
Researchers selected 4,493 terminally ill patients with either congestive heart failure (CHF) or cancer of the breast, colon, lung, pancreas, or prostate. They then analyzed the difference in survival periods between those who received hospice care and those who did not. Data came from the Centers for Medicare and Medicaid Services and represented a statistically valid five percent sampling from 1998-2002.
Longer lengths of survival were found in four of the six disease categories studied. The largest difference in survival between the hospice and non-hospice cohorts was observed in CHF patients where the mean survival period jumped from 321 days to 402 days. The mean survival period also was significantly longer for the hospice patients with lung cancer (39 days) and pancreatic cancer (21 days), while marginally significant for colon cancer (33 days).
“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, NHPCO president and CEO. “Those of us who have worked in the field have seen firsthand how hospice can improve the quality of and indeed prolong the lives of people receiving care. Benefits of hospice have been reinforced by positive stories like that of Art Buchwald who seemed to thrive under the care of hospice.”
Researchers cited several factors that may have contributed to longer life among patients who chose hospice. First, patients who are already in a weakened condition avoid the risks of over-treatment when they make the decision to receive hospice care. Second, hospice care may improve the monitoring and treatment patients receive. Additionally, hospice provides in-home care from an interdisciplinary team focused on the emotional needs, spiritual well-being, and physical health of the patient. Support and training for family caregivers is provided as well. This may increase the patient’s desire to continue living and may make them feel less of a burden to family members.
“There is a perception among some healthcare providers that symptom relief in hospice, especially the use of opioids and sedatives, could cause patients to die sooner than they would otherwise. This study provides important information to suggest that hospice is related to the longer, not shorter length of survival – by days or months – in many patients,” said Dr. Stephen Connor, NHPCO’s vice president of research and international development, and lead author of the study. “This additional time may be valuable to patients and families to give more time for resolution and closure.”
Co-author Bruce Pyenson, an actuary at Milliman in New York, added, “We believe this study helps support the growing quality movement within healthcare. For some patients, hospice care is not a choice about cure, it is a choice for the best care.”
Among the patient populations studied, the mean survival was 29 days longer for hospice patients than for non-hospice patients. In other words, patients who chose hospice care lived an average of one month longer than similar patients who did not choose hospice care.
Sponsored by the National Hospice and Palliative Care Organization, the study was conducted by NHPCO researchers in collaboration with the highly regarded consulting and actuarial firm, Milliman, Inc.
Researchers selected 4,493 terminally ill patients with either congestive heart failure (CHF) or cancer of the breast, colon, lung, pancreas, or prostate. They then analyzed the difference in survival periods between those who received hospice care and those who did not. Data came from the Centers for Medicare and Medicaid Services and represented a statistically valid five percent sampling from 1998-2002.
Longer lengths of survival were found in four of the six disease categories studied. The largest difference in survival between the hospice and non-hospice cohorts was observed in CHF patients where the mean survival period jumped from 321 days to 402 days. The mean survival period also was significantly longer for the hospice patients with lung cancer (39 days) and pancreatic cancer (21 days), while marginally significant for colon cancer (33 days).
“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, NHPCO president and CEO. “Those of us who have worked in the field have seen firsthand how hospice can improve the quality of and indeed prolong the lives of people receiving care. Benefits of hospice have been reinforced by positive stories like that of Art Buchwald who seemed to thrive under the care of hospice.”
Researchers cited several factors that may have contributed to longer life among patients who chose hospice. First, patients who are already in a weakened condition avoid the risks of over-treatment when they make the decision to receive hospice care. Second, hospice care may improve the monitoring and treatment patients receive. Additionally, hospice provides in-home care from an interdisciplinary team focused on the emotional needs, spiritual well-being, and physical health of the patient. Support and training for family caregivers is provided as well. This may increase the patient’s desire to continue living and may make them feel less of a burden to family members.
“There is a perception among some healthcare providers that symptom relief in hospice, especially the use of opioids and sedatives, could cause patients to die sooner than they would otherwise. This study provides important information to suggest that hospice is related to the longer, not shorter length of survival – by days or months – in many patients,” said Dr. Stephen Connor, NHPCO’s vice president of research and international development, and lead author of the study. “This additional time may be valuable to patients and families to give more time for resolution and closure.”
Co-author Bruce Pyenson, an actuary at Milliman in New York, added, “We believe this study helps support the growing quality movement within healthcare. For some patients, hospice care is not a choice about cure, it is a choice for the best care.”
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