Monday, December 10, 2012
Palliative care improves outcomes for seniors
Fewer emergency room visits, less depression
Seniors in long-term care experienced a significant reduction in emergency room visits and depression when receiving palliative care services, according to a recent collaborative study by researchers at Hebrew SeniorLife's Hebrew Rehabilitation Center (HRC) and Institute for Aging Research, both affiliated with Harvard Medical School (HMS).
The results of the study, published today in The Gerontologist, demonstrate the potential for improved end-of-life quality of care when palliative services are implemented in a long-term care setting.
The researchers analyzed the composite outcomes of utilization patterns, depression, pain and other clinical indicators of 250 long-term care patients at Hebrew Rehabilitation Center, half of whom received palliative care services, over a two-year period. Those who received palliative care had about half as many emergency room visits and significantly less depression.
"The national health care crisis has created a mandate to cut costs while improving care for millions of aging Americans who would otherwise experience frequent hospitalizations and futile aggressive care in their last months," says Jody Comart, Ph.D., palliative care director at Hebrew SeniorLife and the study's lead author.
"Many patients and families fear a painful, undignified death. The palliative care team is an elegant model that can improve care for long-term care residents and, at the same time bring down costs. This study showed a decrease in emergency room visits for palliative care patients, avoiding an often frightening event for patients and families, while decreasing the high cost of this expensive service for our health care system.
The Palliative Care Program at HRC combines medical, emotional and spiritual support services provided by an interdisciplinary team — a palliative care physician, clinical nurse specialist, chaplain, social worker and psychologist — providing the expertise and structure for improved symptom management and earlier identification of residents' goals for care.
According to Comart, providing palliative care services in a long-term care setting can offer significant benefits to patients and their loved ones:
- Patients and families often face very intense, emotionally laden and ethically burdensome decisions about treatment options.
- Palliative care provides them with medical and technical information that fosters informed conversations about end-of-life care — often for the first time.
- By treating pain and other symptoms, decreasing unnecessary hospitalizations and helping patients find closure during their final days, palliative care can reduce patient suffering and ease the burden on families.
"Some patients prefer less aggressive treatment and improved quality of life, while others want intensive interventions that may involve hospitalization and procedures," Comart explains. "Whatever the choice, patient-centered care is the primary goal, focusing on treatment that is consistent with the resident's wishes or, in the case of patients who are unable to comprehend the decisions at hand, with prior stated wishes."
Tuesday, December 4, 2012
Prohibitive reimbursement may restrict hospice enrollment in patients requiring high-cost care
In the first national survey of enrollment policies at hospices, researchers from Mount Sinai School of Medicine and Yale University have found that the vast majority of hospices in the United States have at least one enrollment policy that could restrict access for terminally ill Medicare patients with high-cost medical needs. The study, which is published in the December issue of Health Affairs (http://content.healthaffairs.org/content/31/12/2690.abstract), calls for reform of Medicare reimbursement rates and hospice eligibility requirements.
Led by Melissa Aldridge Carlson, PhD, MBA Assistant Professor of Geriatrics and Palliative Medicine at Mount Sinai School of Medicine, the research team conducted a survey of a random sample of hospice medical directors around the U.S. Of 591 hospices in the sample, 78 percent had at least one enrollment restriction for terminally ill Medicare patients receiving high-cost care such as chemotherapy, transfusions, or palliative radiation.
"Hospice care is an ideal model of health care reform in that it provides a patient-centered, multidisciplinary approach to treating patients at the end of their lives," said Dr. Aldridge Carlson. "It also reduces hospitalizations and saves health care dollars. However, Medicare hospice reimbursement is not adjusted for cost or labor intensity, which may cause hospices to be more restrictive about whom they enroll."
Medicare provides an average reimbursement rate of $140 per day per patient for hospice care. Many patients with terminal illnesses benefit from palliative chemotherapy, radiation, or blood transfusion—treatments that can cost up to $10,000 per month. Some hospices may simply be unable to afford to enroll patients wishing to receive these treatments. Also, an increasing number of treatments such as chemotherapy for cancer are considered both life-prolonging and palliative and the extent to which such treatments may be continued under the Medicare benefit once hospice is elected is unclear.
Some patients may also need labor-intensive care such as feeding tubes, intravenous nutrition, and more frequent and intensive home visits if they do not have a caregiver, all of which add to the cost of care for hospices. Because Medicare reimbursement is not adjusted for the intensity of care, hospices may be less likely to enroll patients with these needs as well.
In the survey, hospice providers reported an average of 2.3 restrictive enrollment policies. Only one-third of hospices will enroll patients who are receiving chemotherapy; one-half will enroll patients receiving total parenteral, or intravenous, nutrition; and only two-thirds will enroll patients who want to receive palliative radiation. Larger hospices had less restrictive enrollment policies, likely because higher patient volume allows them to spread financial risk of high-cost patients across a larger patient base. Small hospices have the most restrictive enrollment policies.
"Our results indicate that addressing the financial risk to hospices of caring for patients with high-cost complex palliative care needs is likely a key factor to improving access to hospice care," said Dr. Aldridge Carlson.
Dr. Aldridge Carlson and her team suggest that the Medicare per diem rate be increased for patients with high-cost medical needs and propose relaxing eligibility criteria for the Medicare Hospice Benefit to allow for concurrent life-extending and palliative care treatments. They also suggest that physicians who refer to hospice understand that eligibility criteria may vary widely across hospices and that larger hospices may have more expanded enrollment.
In contrast to restrictive enrollment policies, Dr. Aldridge Carlson and her team found that more than a quarter of hospices had open access policies, meaning they offered palliative care services to non-hospice patients and nonprofit hospices were more than twice as likely to have such policies compared with for-profit hospices.
"This emerging trend in open access hospices may promote the use of hospice earlier in the course of a patient's disease," said Dr. Aldridge Carlson. "However, it is unclear if this innovative care model will spread given the rapid growth in the for-profit hospice sector."
Led by Melissa Aldridge Carlson, PhD, MBA Assistant Professor of Geriatrics and Palliative Medicine at Mount Sinai School of Medicine, the research team conducted a survey of a random sample of hospice medical directors around the U.S. Of 591 hospices in the sample, 78 percent had at least one enrollment restriction for terminally ill Medicare patients receiving high-cost care such as chemotherapy, transfusions, or palliative radiation.
"Hospice care is an ideal model of health care reform in that it provides a patient-centered, multidisciplinary approach to treating patients at the end of their lives," said Dr. Aldridge Carlson. "It also reduces hospitalizations and saves health care dollars. However, Medicare hospice reimbursement is not adjusted for cost or labor intensity, which may cause hospices to be more restrictive about whom they enroll."
Medicare provides an average reimbursement rate of $140 per day per patient for hospice care. Many patients with terminal illnesses benefit from palliative chemotherapy, radiation, or blood transfusion—treatments that can cost up to $10,000 per month. Some hospices may simply be unable to afford to enroll patients wishing to receive these treatments. Also, an increasing number of treatments such as chemotherapy for cancer are considered both life-prolonging and palliative and the extent to which such treatments may be continued under the Medicare benefit once hospice is elected is unclear.
Some patients may also need labor-intensive care such as feeding tubes, intravenous nutrition, and more frequent and intensive home visits if they do not have a caregiver, all of which add to the cost of care for hospices. Because Medicare reimbursement is not adjusted for the intensity of care, hospices may be less likely to enroll patients with these needs as well.
In the survey, hospice providers reported an average of 2.3 restrictive enrollment policies. Only one-third of hospices will enroll patients who are receiving chemotherapy; one-half will enroll patients receiving total parenteral, or intravenous, nutrition; and only two-thirds will enroll patients who want to receive palliative radiation. Larger hospices had less restrictive enrollment policies, likely because higher patient volume allows them to spread financial risk of high-cost patients across a larger patient base. Small hospices have the most restrictive enrollment policies.
"Our results indicate that addressing the financial risk to hospices of caring for patients with high-cost complex palliative care needs is likely a key factor to improving access to hospice care," said Dr. Aldridge Carlson.
Dr. Aldridge Carlson and her team suggest that the Medicare per diem rate be increased for patients with high-cost medical needs and propose relaxing eligibility criteria for the Medicare Hospice Benefit to allow for concurrent life-extending and palliative care treatments. They also suggest that physicians who refer to hospice understand that eligibility criteria may vary widely across hospices and that larger hospices may have more expanded enrollment.
In contrast to restrictive enrollment policies, Dr. Aldridge Carlson and her team found that more than a quarter of hospices had open access policies, meaning they offered palliative care services to non-hospice patients and nonprofit hospices were more than twice as likely to have such policies compared with for-profit hospices.
"This emerging trend in open access hospices may promote the use of hospice earlier in the course of a patient's disease," said Dr. Aldridge Carlson. "However, it is unclear if this innovative care model will spread given the rapid growth in the for-profit hospice sector."
Wednesday, November 28, 2012
Resolving conflicts over end-of-life care: Mayo experts offer tips
It's one of the toughest questions patients and their loved ones can discuss with physicians: When is further medical treatment futile? The conversation can become even more difficult if patients or their families disagree with health care providers' recommendations on end-of-life care. Early, clear communication between patients and their care teams, choosing objective surrogates to represent patients and involving third parties such as ethics committees can help avoid or resolve conflicts, Mayo Clinic experts Christopher Burkle, M.D., J.D., and Jeffre Benson, M.D., write in the November issue of Mayo Clinic Proceedings.
"Health care professionals in the United States have struggled with the importance of maintaining patient autonomy while attempting to practice under the guidance of treatments based on beneficial care," Dr. Burkle, the study's lead author, says.
Tips from Drs. Burkle and Benson to effectively discuss end-of-life care include:
-Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.
-Choose objective surrogates if patients cannot represent themselves: The surrogate's role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient's own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.
-Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.
"End-of-life care will continue to be an ongoing discussion within the medical community; however, it is important that medical care providers and patients/medical surrogates continue to dialogue," Dr. Burkle says. "Only then can experts continue to offer insight into the effectiveness of systems used in countries that have moved to a more patient-centrist approach to end-of-life care treatment choices."
"Health care professionals in the United States have struggled with the importance of maintaining patient autonomy while attempting to practice under the guidance of treatments based on beneficial care," Dr. Burkle, the study's lead author, says.
Tips from Drs. Burkle and Benson to effectively discuss end-of-life care include:
-Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.
-Choose objective surrogates if patients cannot represent themselves: The surrogate's role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient's own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.
-Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.
"End-of-life care will continue to be an ongoing discussion within the medical community; however, it is important that medical care providers and patients/medical surrogates continue to dialogue," Dr. Burkle says. "Only then can experts continue to offer insight into the effectiveness of systems used in countries that have moved to a more patient-centrist approach to end-of-life care treatment choices."
Thursday, November 15, 2012
Mayo Clinic Expert Describes Evolving Roles of Hospice and Palliative Care
Many people think hospice and palliative care come at the end of life, and while both often play a key role then, palliative care also can provide pain relief, symptom control, emotional comfort and spiritual support as patients recover from serious illnesses. National Hospice Palliative Care Month is held in November to educate physicians and patients and their families about hospice care, palliative care and their similarities and differences. Donna Kamann, a palliative care nurse practitioner at Mayo Clinic Health System in La Crosse, explains these growing and evolving medical specialties and how they can help patients and their loved ones.
At Mayo, for example, palliative care teams include physicians, advanced-practice nurses, chaplains, licensed clinical social workers, pharmacists and physical and occupational therapists. Starting with their individual expertise, the members build a care plan that carefully considers each patient’s unique needs. Palliative care can segue into hospice care if the illness becomes terminal.
“Respecting the desires of patients -- as well as their families and their caregivers -- palliative care seeks to improve quality of life in the face of serious illness,” Kamann says. “Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure, chronic obstructive pulmonary disease, kidney failure, Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis and many more.”
Palliative care and hospice care can provide:
*Pain management: Most patients and families want every effort be made to relieve pain. It is important for the patient to receive the appropriate medication for his or her condition. Different types of pain require different medications.
*Symptom control: This includes management of the symptoms associated with the illness and side effects of treatment: pain, nausea/vomiting, poor appetite, shortness of breath, loss of energy, sleep disturbances, anxiety and depression related to the illness, and delirium, Kamann says.
*Emotional support: It is natural to feel sad, angry, panicked, or helpless when you or someone you love becomes ill. Team members help patients and families develop coping skills and ease anxiety over how illnesses may progress. They also can assist with difficult conversations that patients and families may want to have, but do not know how to start. The simple presence of someone who loves the patient can be extremely soothing and helpful.
*Spiritual care: Spirituality and spiritual life are about religion and anything else through which a person finds meaning, says Michael Brown, a chaplain in spiritual care at Mayo Clinic Health System. “Spirituality is a practice that cultivates the deepest aspects of who we are,” Brown says. He suggests providing an atmosphere that is in harmony with the patient’s wishes. Music therapy, massage therapy, reiki and healing touch are among options available to patients in palliative care.
Palliative care is available at any time during a serious or life-threatening illness, while hospice care is available only during the final months of life -- when curative or life-prolonging treatments have been stopped. Hospice care can be provided at home or on an in-patient basis. Roughly 1.6 million people with life-limiting illness receive care from U.S. hospice or palliative care providers, according to the National Hospice and Palliative Care Organization.
At Mayo, for example, palliative care teams include physicians, advanced-practice nurses, chaplains, licensed clinical social workers, pharmacists and physical and occupational therapists. Starting with their individual expertise, the members build a care plan that carefully considers each patient’s unique needs. Palliative care can segue into hospice care if the illness becomes terminal.
“Respecting the desires of patients -- as well as their families and their caregivers -- palliative care seeks to improve quality of life in the face of serious illness,” Kamann says. “Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure, chronic obstructive pulmonary disease, kidney failure, Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis and many more.”
Palliative care and hospice care can provide:
*Pain management: Most patients and families want every effort be made to relieve pain. It is important for the patient to receive the appropriate medication for his or her condition. Different types of pain require different medications.
*Symptom control: This includes management of the symptoms associated with the illness and side effects of treatment: pain, nausea/vomiting, poor appetite, shortness of breath, loss of energy, sleep disturbances, anxiety and depression related to the illness, and delirium, Kamann says.
*Emotional support: It is natural to feel sad, angry, panicked, or helpless when you or someone you love becomes ill. Team members help patients and families develop coping skills and ease anxiety over how illnesses may progress. They also can assist with difficult conversations that patients and families may want to have, but do not know how to start. The simple presence of someone who loves the patient can be extremely soothing and helpful.
*Spiritual care: Spirituality and spiritual life are about religion and anything else through which a person finds meaning, says Michael Brown, a chaplain in spiritual care at Mayo Clinic Health System. “Spirituality is a practice that cultivates the deepest aspects of who we are,” Brown says. He suggests providing an atmosphere that is in harmony with the patient’s wishes. Music therapy, massage therapy, reiki and healing touch are among options available to patients in palliative care.
Palliative care is available at any time during a serious or life-threatening illness, while hospice care is available only during the final months of life -- when curative or life-prolonging treatments have been stopped. Hospice care can be provided at home or on an in-patient basis. Roughly 1.6 million people with life-limiting illness receive care from U.S. hospice or palliative care providers, according to the National Hospice and Palliative Care Organization.
Tuesday, November 13, 2012
Earlier End of Life Care Discussions are Linked to Less Aggressive Care in Final Days of Life
A large population- and health systems-based prospective study reports earlier discussions about end of life (EOL) care preferences are strongly associated with less aggressive care in the last days of life and increased use of hospice care for patients with advanced cancer. The study, published November 13 in the Journal of Clinical Oncology, provides the first-of-its –kind scientific evidence that timing of EOL care discussions affects decisions about EOL care.
The findings suggest that initiating EOL care discussions before the last month of life provides the patients opportunity to make decisions regarding their EOL care preferences in a way that late discussions don’t seem to do. Patients need time to process the information with their family and make good plans based on that information.
National guidelines recommend that oncologists initiate discussions about EOL care soon after a diagnosis of advanced cancer in order to ensure care aligns with patient goals and wishes. Current guidelines state that conversations should happen “during periods of relative medical stability rather than acute deterioration, and with physicians that know the patient well.” In addition, ASCO’s own recommendations for patients with advanced cancer include prioritizing discussions related to advanced cancer care preference upon diagnosis. This year ASCO also offered guidance on when oncologists should prioritize palliative and supportive care for patients with advanced cancer who have certain disease characteristics.
“Research has shown that choosing less aggressive care at the end of life offers important benefits for both patients and their caregivers. Patients have a better quality of life in their final days because there is a greater focus on symptom management, and they are more often able to receive care in their homes,” said lead author Jennifer W. Mack, MD, MPH, a pediatric hematologist/oncologist at Dana-Farber/Children' Hospital Cancer Center. “This is also important because studies have shown that aggressive care is associated with a higher risk of depression among bereaved caregivers of cancer patients.”
In the study, investigators identified discussions about hospice and resuscitation from with 1,231 patients (or surrogates of patients who were deceased or too ill to participate) with end-stage lung or colorectal cancer and via review of their medical records. They found that, on average, EOL discussions were initiated 33 days before death and 39 percent of those discussions occurred within the last 30 days.
Nearly half of all the study participants received at least one form of aggressive care, including chemotherapy in the last 14 days of life, intensive care unit (ICU) care in the last 30 days of life, and acute, hospital-based care in the last 30 days of life. However, compared with cases where EOL discussions took place within the last 30 days of life, cases with earlier EOL discussions were associated with less frequent use of aggressive care (34-45 percent vs. 65 percent) and increased use of hospice care (68-77 percent vs. 49 percent).
“Most patients who recognize that their cancer is terminal want to receive less aggressive care at the end of life,” said Dr. Mack. However, aggressive care is still common in this setting, in part because discussions about the end of life are often postponed because they are difficult for both physicians and patients. This study also found that 17 percent of patients or surrogates did not recall EOL care discussions even though they were documented in the medical records, suggesting they may not have fully comprehended the content of the discussion. The authors emphasize that more research is needed to explore how content of EOL care discussions affects patients’ comprehension of the information and subsequent decisions made. In addition, the study underscores a need for a national emphasis from ASCO and many other professional and patient groups on advanced cancer care planning in physician education and training programs.
To view the full study click here.
ASCO Perspective
Sandra M. Swain, MD, FACP, ASCO President
“Conversations about treatment options for advanced cancer are extremely difficult for patients, their families and their oncologist. But this study underscores a growing body of evidence that the earlier these conversations take place, the better because they have a real impact on a patient’s quality of life in their final days. We need more education for physicians on topics like this and more training on communication skills for discussing prognosis.”
Helpful Links from Cancer.Net, ASCO’s cancer information website:
Thursday, November 1, 2012
Barrier to hospice increases hospitalization
Because of a Medicare policy that prevents simultaneous reimbursement for skilled nursing and hospice care, many families cannot choose hospice for loved ones who reside in nursing homes. The result, new research shows, is that residents with advanced dementia who have Medicare skilled nursing home care without any hospice care have a far greater likelihood of dying in the hospital and receiving aggressive treatments such as feeding tubes or physical therapy within weeks of death.
A Medicare rule that blocks thousands of nursing home residents from receiving simultaneous reimbursement for hospice and skilled nursing facility (SNF) care at the end of life may result in those residents receiving more aggressive treatment and hospitalization, according a new analysis.
“This study is the first, to the knowledge of the authors, to attempt to understand how treatments and outcomes vary for nursing home residents with advanced dementia who use Medicare SNF care near the end of life and who do or do not enroll in Medicare hospice,” wrote researchers, including lead author Susan Miller, research professor of health services policy and practice at Brown University, in the Journal of the American Geriatrics Society.
Miller said the outcomes are often unwanted treatments.
“Unfortunately, given the high use of Medicare skilled care near the end of life and policy that prevents simultaneous Medicare reimbursement for skilled nursing and hospice care, aggressive treatments that may not be the preference of families or their loved ones are common,” she said.
The federal government will investigate this issue under the Medicare Hospice Concurrent Care demonstration project mandated by the Affordable Care Act.
About half of all nursing home residents dying with advanced dementia have Medicare SNF care in the last 90 days of life, but residents with this care are not allowed to receive simultaneous hospice and SNF Medicare reimbursement for the same terminal illness. The two services have different medical goals.
Susan Miller “When the family learns that by choosing hospice and thus giving up (skilled nursing facility care) they’d have to pay for the entire nursing home stay, they will choose SNF over hospice.” Credit: David Orenstein/Brown University Because of the rule, previous research has reported, 46 percent of residents with advanced dementia but no SNF use hospice, while only 30 percent of similar residents who do have SNF use hospice (some residents can still end up with both services simultaneously if, for instance, SNF addresses a different condition than their terminal illness).
What Miller and her colleagues found is that whether and when SNF patients have access to hospice makes an important difference in the care they receive at end of life. That matters to many families, because it is not an easy decision, emotionally or financially, to give up SNF in favor of hospice.
“What I’ve heard from physicians is that families may be advised about hospice, but when the family learns that by choosing hospice and thus giving up SNF they’d have to pay for the entire nursing home stay, they will choose SNF over hospice,” she said. “One physician told me a story about a significant other who wanted hospice for their family member. It was cheaper for that person just to quit their job, stay home and care for the person and get hospice rather than to pay for nursing home care because the nursing home cost more than they were making.”
To conduct her analysis, Miller and her co-authors studied the Medicare records of 4,344 nursing home residents with SNF care and advanced dementia who died in 2006. Of the sample, 1,086 received hospice care either concurrent with SNF or afterward. The other 3,528 patients were demographically and medically similar, but did not receive hospice care.
One of team’s key findings was that residents with hospice either during or after SNF care were far less likely to die in the hospital than people without hospice. Those with concurrent SNF and hospice were 87 percent less likely to die in the hospital. Those with hospice after SNF were 98 percent less likely. In the meantime, the data showed the patients with hospice received less aggressive treatments in many other ways. Fewer received feeding tubes, medications (except hypnotic and antianxiety drugs), IV fluids, and occupational or physical therapy than those with no hospice.
The researchers also measured two key outcomes that were more complicated to interpret: persistent difficulty breathing and persistent pain. Residents with hospice after SNF were 37 percent less likely than those without hospice to experience persistent difficulty breathing, or dyspnea, but residents with concurrent hospice and SNF had no significant difference in their experience of this problem. With persistent pain, those with hospice after SNF were not less likely to experience it than residents with no hospice, but those with concurrent SNF and hospice were 65 percent more likely to experience pain.
Miller said that the pain comparison, in particular, is puzzling because of the subjectivity of measuring pain and the likelihood that people who elect hospice care do so in part because of elevated levels of pain.
Overall, Miller said, the results show that the Medicare rule that reduces access to hospice at end of life significantly affects the treatment nursing home residents receive.
Whether it is worth it, from a cost perspective, to change the policy, is not clear, Miller said. The ACA-mandated demonstration will help answer that. But evidence from prior studies suggests that Medicare does tend to save money when nursing home residents do not have long hospice stays. Miller said she plans future studies to look at costs and alternative ways to bring palliative care to nursing home patients with advanced dementia.
In addition to Miller, the paper’s other authors are Julie Lima of Brown and Dr. Susan Mitchell of the Institute for Aging Research at Hebrew Senior Life and Deaconness Medical Center in Boston.
The Alzheimer’s Association (grant 2008-086) and the National Institute on Aging (grants AG027296 and AG033640) funded the study.
Thursday, October 25, 2012
Palliative Care: Four Points to Improve Discussions About Dying
In an editorial appearing in the October 25 issue of The New England Journal of Medicine, medical oncologists at Johns Hopkins and Brigham and Women’s hospitals provide a four-point plan for integrating palliative care discussions throughout the treatment of patients with terminal illnesses. They write that better planning and communication may improve symptoms, stress, and survival time, as well as lower health care costs at the end of life.
The two physicians suggest that their colleagues should discuss palliative care with patients during initial talks about prognosis at the first physician visit. This should be followed by further discussion about advance directives and hospice information (within the first three visits), and additional discussions of prognosis and coping (during periods when treatments change).
“Physicians are not as forthright as we should be with patients about their prognosis,” says Thomas J. Smith, M.D., The Harry J. Duffey Family Professor of Palliative Medicine, professor of oncology, and director of Palliative Medicine at Johns Hopkins. “We do a fair job of communicating to patients that their terminal illness is incurable, but only one-third of doctors tell patients their prognosis at any time during their care.”
A reason for this, Smith says, could be that doctors are afraid such discussions could take away a patient’s hope. “What they don’t realize is that hope is impossible to extinguish, and palliative care discussions can help patients focus on a better quality of life,” regardless of prognosis, he adds. Palliative care is defined as treatment designed to set medically appropriate goals, comfort, manage symptoms, and ease pain, rather than cure the disease.
Smith’s editorial, written with Dan L. Longo, M.D., of Brigham and Women’s Hospital, accompanies a report of a study by a team of oncologists at Harvard’s Dana Farber Cancer Institute which finds that most patients with metastatic lung or colon cancer and a poor prognosis believe treatments were “likely to cure them.”
“We have to do a better job of helping patients plan their remaining lives,” says Smith, who adds that studies on lung cancer show improved quality of life, quality of care, and survival for patients who received palliative care.
Smith also suggests that patients who receive palliative care may have fewer unmanaged symptoms and access to additional health care staff who provide advice and resources. This additional level of care, Smith says, may reduce hospital readmission rates, and thus, overall health care costs.
He adds that an important part of integrating palliative care is teaching health care providers ways to communicate issues surrounding end-of-life care. “Discussions with patients about how they are coping with their prognosis are not simple or easy,” Smith says. “But we can begin by asking patients and their families what they want to know about their prognosis and doing this at each transition point in their care.”
Many Terminal Cancer Patients Put False Hope in Chemo
Many people with incurable cancer mistakenly believe chemotherapy may save them, a new study finds.
Researchers at Dana-Farber Cancer Institute in Boston found that more than 80 percent of people with advanced colon cancer and nearly 70 percent with advanced lung cancer thought chemo could cure their disease. In reality, chemo might give them several more months of life or ease troubling symptoms, but it rarely offers a cure for these diseases once they've spread to distant sites in the body.
"It's really easy for people to have expectations that aren't well aligned with reality," said the study's senior author, Dr. Deborah Schrag, an attending physician in adult oncology at Dana-Farber. "They want to be the one to beat the cancer. And, doctors want to be helpful. We want to be positive.
"What's clear," she added, "is that whatever we're doing right now, we need to change."
These misunderstandings may keep patients from making informed treatment decisions and preparing for death, say the study authors.
The study, published Oct. 25 in the New England Journal of Medicine, included almost 1,200 people who were part of the larger Cancer Care Outcomes Research and Surveillance study. The study volunteers were surveyed about four months after their diagnosis with advanced lung or colon cancer -- cancer that had spread to other areas of their body (metastasized). Almost all were receiving chemotherapy.
Overall, 69 percent of the lung cancer patients and 81 percent with colon cancer reported unrealistic expectations about the likelihood that their chemotherapy might cure them.
People with colon cancer were more likely to believe that chemo might provide a cure, and blacks and Hispanics were significantly more likely to think that.
Patients who reported having favorable communication with their doctor were also more likely than others to expect a cure, the investigators found.
"You've been dealt a bad hand and, as your doctors, we want to help you cope," said Schrag. "But we may be robbing people of the opportunity to prioritize and make plans for what's important to them. We need to walk a fine line and have our patients hope for what's possible, but plan for what's probable."
Doctors also have to expect their popularity may drop in the face of truthful conversations, the study authors noted.
The co-author of an accompanying editorial, Dr. Thomas J. Smith, said what really matters is what people understand about their disease. "As long as these people are still planning for the worst, it's wonderful if they can be hoping for the best," he said.
Smith, director of palliative medicine at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, said that oncologists often need to change the way they deliver information to help people better understand what they can expect to happen.
"Oncologists like me are pretty good at saying to someone with lung cancer, 'This is something we can't cure.' But, that's very different than saying, 'What do you want to know about your disease?' or 'What do you understand about your disease?'" he said.
Smith said it's also important to have these types of discussions several times during the illness, and when someone has between three and six months left to live, it's important to discuss hospice care.
Misguided expectations also burden taxpayers. One-quarter of Medicare funds -- the U.S. insurance program for the elderly -- are spent in the year before death, in part because of late-stage chemotherapy, the editorialists noted.
"Chemotherapy can help ease symptoms, and some chemotherapy may extend life, but at some point chemotherapy can do you more harm than good," Smith said.
Schrage added, "It's important to know that chemotherapy is helpful and valuable. It's not worthless by any means. But, hopefully patients will feel empowered to ask, 'How will this help me?' and 'What is realistic for me to expect?'"
She said it's also very helpful to bring someone to your doctor's appointment, because it's often hard to focus on what the doctor is saying after you've been given difficult, life-altering news.
Monday, July 9, 2012
Better quality of life at the end of life for patients with advanced cancer was associated with avoiding hospitalizations and the intensive care unit
Better quality of life at the end of life for patients with advanced cancer was associated with avoiding hospitalizations and the intensive care unit, worrying less, praying or meditating, being visited by a pastor in a hospital or clinic, and having a therapeutic alliance with their physician, according to a report published Online First by Archives of Internal Medicine, a JAMA Network publication.
When treatments to cure a patient's cancer are no longer an option, the focus of care often shifts from prolonging life to promoting the quality of life (QOL) at the end of life (EOL). But researchers note in their study background that there has been a gap in data on the strongest predictors of higher QOL at the EOL.
"The aim of this study was to identify the best set of predictors of QOL of patients in their final week of life. By doing so, we identify promising targets for health care interventions to improve QOL of dying patients," the authors note.
The study by Baohui Zhang, M.S., formerly of the Dana-Farber Cancer Institute, Boston, and colleagues included 396 patients with advanced cancer and their caregivers as part of the Coping with Cancer study. The average age of patients was almost 59 years.
A set of nine factors explained the most variance in patients' QOL at the EOL: intensive care stays in the final week, hospital deaths, patient worry at baseline, religious prayer or meditation at baseline, site of cancer care, feeding tube use in the final week, pastoral care within the hospital or clinic, chemotherapy in the final week, and a patient-physician therapeutic alliance where the patient felt they were treated as a "whole person," according to the study.
"Two of the most important determinants of poor patient quality QOL at the EOL were dying in a hospital and ICU stays in the last week of life. Therefore, attempts to avoid costly hospitalizations and to encourage transfer of hospitalized patients to home or hospice might improve patient QOL at the EOL," the authors comment.
Patient worry at baseline also was "one of the most influential predictors of worse QOL at the EOL," the authors note.
"By reducing patient worry, encouraging contemplation, integrating pastoral care within medical care, fostering a therapeutic alliance between patient and physician that enables patients to feel dignified, and preventing unnecessary hospitalizations and receipt of life-prolonging care, physicians can enable their patients to live their last days with the highest possible level of comfort and care," the authors conclude.
Invited Commentary: Improving Patients' Quality of Life at End of Life
In an invited commentary, Alan B. Zonderman, Ph.D., and Michele K. Evans, M.D., of the Intramural Research Program, National Institute on Aging, National Institutes of Health, Baltimore, Md., write: "The concept of quality of the EOL [end of life] in cancer patients has been under examined in cancer medicine in the quest to develop newer, more advanced, and effective modalities of interventional cytotoxic therapies. This study highlights the scarcity of research in an area that can give us important tools in further refining coherent treatment strategies for patients throughout the timeline of cancer treatment and disease trajectory."
"It is surprising at this stage in the development and implementation of complex multimodal cancer treatment strategies that the factors most critical in influencing the quality of the EOL are not clearly defined and considered along the entire timeline beginning with cancer diagnosis," they continue.
"This work, as well as the American Society of Clinical Oncology statement, support early introduction of palliative care for advanced cancer patients," the authors conclude.
(Arch Intern Med. Published online July 9, 2012. doi:10.1001/archinternmed.2012.3169.
publication.
When treatments to cure a patient's cancer are no longer an option, the focus of care often shifts from prolonging life to promoting the quality of life (QOL) at the end of life (EOL). But researchers note in their study background that there has been a gap in data on the strongest predictors of higher QOL at the EOL.
"The aim of this study was to identify the best set of predictors of QOL of patients in their final week of life. By doing so, we identify promising targets for health care interventions to improve QOL of dying patients," the authors note.
The study by Baohui Zhang, M.S., formerly of the Dana-Farber Cancer Institute, Boston, and colleagues included 396 patients with advanced cancer and their caregivers as part of the Coping with Cancer study. The average age of patients was almost 59 years.
A set of nine factors explained the most variance in patients' QOL at the EOL: intensive care stays in the final week, hospital deaths, patient worry at baseline, religious prayer or meditation at baseline, site of cancer care, feeding tube use in the final week, pastoral care within the hospital or clinic, chemotherapy in the final week, and a patient-physician therapeutic alliance where the patient felt they were treated as a "whole person," according to the study.
"Two of the most important determinants of poor patient quality QOL at the EOL were dying in a hospital and ICU stays in the last week of life. Therefore, attempts to avoid costly hospitalizations and to encourage transfer of hospitalized patients to home or hospice might improve patient QOL at the EOL," the authors comment.
Patient worry at baseline also was "one of the most influential predictors of worse QOL at the EOL," the authors note.
"By reducing patient worry, encouraging contemplation, integrating pastoral care within medical care, fostering a therapeutic alliance between patient and physician that enables patients to feel dignified, and preventing unnecessary hospitalizations and receipt of life-prolonging care, physicians can enable their patients to live their last days with the highest possible level of comfort and care," the authors conclude.
Invited Commentary: Improving Patients' Quality of Life at End of Life
In an invited commentary, Alan B. Zonderman, Ph.D., and Michele K. Evans, M.D., of the Intramural Research Program, National Institute on Aging, National Institutes of Health, Baltimore, Md., write: "The concept of quality of the EOL [end of life] in cancer patients has been under examined in cancer medicine in the quest to develop newer, more advanced, and effective modalities of interventional cytotoxic therapies. This study highlights the scarcity of research in an area that can give us important tools in further refining coherent treatment strategies for patients throughout the timeline of cancer treatment and disease trajectory."
"It is surprising at this stage in the development and implementation of complex multimodal cancer treatment strategies that the factors most critical in influencing the quality of the EOL are not clearly defined and considered along the entire timeline beginning with cancer diagnosis," they continue.
"This work, as well as the American Society of Clinical Oncology statement, support early introduction of palliative care for advanced cancer patients," the authors conclude.
(Arch Intern Med. Published online July 9, 2012. doi:10.1001/archinternmed.2012.3169.
Tuesday, June 5, 2012
Ill, Older Patients Who Rely on Emergency Room Often Live Final Days in Hospital, Study Finds
Hospice Care Would Improve Quality of Life and Lower Costs, Say Authors
Half of adults over age 65 made at least one emergency department (ED) visit in the last month of life, in a study led by a physician at the San Francisco VA Medical Center (SFVAMC) and UCSF.
Three quarters of ED visits led to hospital admissions, and more than two-thirds of those admitted to the hospital died there.
In contrast, the 10 percent of study subjects who had enrolled in hospice care at least one month before death were much less likely to have made an ED visit or died in the hospital.
“For too many older Americans, the emergency department is a conduit to hospital admission and death in the hospital,” said lead author Alexander K. Smith, MD, MS, MPH, a palliative medicine doctor at SFVAMC and an assistant professor of medicine in the Division of Geriatrics at UCSF.
The study, published in the June issue of Health Affairs, was based on an analysis of health records of 4,518 people age 65 and older who died while enrolled in the Health and Retirement Study, an ongoing nationally representative longitudinal study of health, retirement and aging sponsored by the National Institute on Aging.
“Unfortunately, the emergency department is not an ideal setting for patients nearing the end of life,” observed Smith. “Aside from the fact that most patients prefer to die at home, ED visits can be incredibly expensive for patients and families, and contribute significantly to the high costs of care at the end of life.”
In addition, he noted, “the traditional focus of the ED is stabilization and triage, not end-of-life care, while hospice provides care specifically for patients with a prognosis of six months of life or less.”
Smith explained that hospice care, which is free to everyone enrolled in Medicare, is centered on the treatment and relief of symptoms that are common near the end of life, such as pain, nausea, shortness of breath and confusion. “These are quite often the symptoms that lead patients who are not in hospice care to visit the ED,” he said.
The majority of hospice care is provided in the patient’s home.
“The interdisciplinary hospice care team is very skilled at providing relief from other forms of suffering as well, such as spiritual and psychological pain,” said Smith. “They also provide bereavement support for families before and after death.”
To encourage timely enrollment in hospice care, the study authors recommended that governments, health care systems and insurers institute policies that encourage physicians to discuss end-of-life care with patients and their families, including reimbursement for advance care planning.
Smith also noted that even if more patients and families make earlier preparations for end-of-life care, “some patients will still end up in the emergency department near the end of life.” To cope with that eventuality, he said, “we need to encourage policies that will make the ED a place where patients can receive the kind of care they need, such as better care of pain, nausea and other symptoms.” He suggested that a “palliative care pathway” could be created to meet the needs of patients who go to the ED seeking relief from suffering.
Co-authors of the study are Ellen P. McCarthy, PhD, MPH, of Harvard Medical School and Beth Israel Deaconess Medical Center (BIDMC), Boston, MA; Ellen Weber, MD, of UCSF; Irena Stijacic Cenzer, MA, and W. John Boscardin, PhD, of SFVAMC and UCSF; Jonathan Fisher, MD, MPH, of Harvard Medical School and BIDMC; and Kenneth E. Covinsky, MD, MPH, of SFVAMC and UCSF.
The study was supported by funds from the National Palliative Care Research Center, the National Center for Research Resources UCSF-Clinical and Translational Science Institute (CTSI) and the National Institute on Aging, some of which were administered by the Northern California Institute for Research and Education.
NCIRE — The Veterans Health Research Institute — is the largest research institute associated with a VA medical center. Its mission is to improve the health and well-being of veterans and the general public by supporting a world-class biomedical research program conducted by the UCSF faculty at SFVAMC.
SFVAMC has the largest medical research program in the national VA system, with more than 200 research scientists, all of whom are faculty members at UCSF.
UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.
Friday, June 1, 2012
End-of-Life Communication
What is the best way to talk to someone about prognosis and quality of life when serious illness strikes? It turns out that no one had studied that question through direct observation, until the University of Rochester Medical Center audio-recorded 71 palliative care discussions.
The data is published online in the Journal of Pain and Symptom Management.
Lead author Robert E. Gramling, M.D., Sc.D., associate professor of Family Medicine at URMC, and colleagues with a special interest in palliative care, made several key discoveries:
-- In 93 percent of the conversations, prognosis was brought up and discussed by at least one person, with the palliative care team broaching the issue 65 percent of the time. Also, the prognosis information focused more often on quality of life rather than survival, and on the unique individual rather than the population in general. Researchers noted that prior studies support the link between open and honest discussions about prognosis to clinical benefits.
-- Both patients/families and physicians/nurses on the palliative care team tended to frame prognosis with more pessimism than optimism. This was unexpected and different than the usual patterns of communication, where talk of a serious illness tends toward avoidance or unbalanced optimism, researchers said. However, emphasizing accuracy during the palliative care consultation usually leads to treatment decisions that match patient preferences.
-- The substance and tone of the conversations varied, depending on whether the patient was present and actively participating. For example, prognosis conversations with family members alone were more pessimistic and contained more explicit information. It is possible, researchers said, this type of conversation takes place out of respect for the patient, who might be sicker in this scenario, or is someone who prefers to avoid information.
-- The closer to death, the more likely the palliative care physician was to foretell or forecast events. This might seem logical – that doctors would guide patients and families in what to expect as death approached – but in reality this vulnerable and frightening time is when families often report a void in communication. The URMC data suggests that palliative care consultations respond to this need.
“Good communication might be the single most important element of palliative care,” Gramling said, “and through direct observation we have demonstrated how these talks occur and the important dimension they add at the end of life.”
The study took place at Strong Memorial Hospital at URMC, which has an in-patient hospice unit and provides more than 1,000 palliative care consultations annually at the hospital. With prior consent from all study participants, researchers placed high-definition digital recorders in unobtrusive locations in hospital rooms before the prognosis discussions took place.
Afterward, researchers coded the conversations based on whom was speaking, the topic, and how the information was framed, and then analyzed the data.
Examples of statements coded for prognosis: “It is unlikely that you will live for more than a month.”Also -- “I believe that your breathing will continue to worsen, and we need to prepare for that.”
An example of statements coded for length of life: “I expect that you will live for days to weeks, rather than months to years. About 30 percent of people live for a month or more.”
An optimistic framing statement: “The good news is I expect you will live for a few more months. | I believe your chances of surviving up to six months are quite good.”
An example of a statement coded for quality of life: “But you know you never know. Sometimes people perk up for awhile. And it may be with a little extra blood you'll perk up for awhile and we'll all enjoy it if you do.”
Providing a palliative care consultation has become much more complex in recent years. As the demand for these services has risen, so has the breadth of services. No longer is palliative care an either-or proposition – either relieving suffering or treating the illness medically. It has evolved into a combination of the two, along with opening communication with the patient and family so they know what to expect.
“When patients and families clearly understand the road ahead they can make the best decisions, based on their own values, desires, and goals,” Gramling added. “Without correctly framing the facts, however, discussions can become unbalanced or lack the context to be helpful.”
The National Palliative Care Research Center and the Greenwall Foundation funded the study. Rochester co-authors include Sally A. Norton, Ph.D., RN; Maureen Metzger, M.S., R.N., and Jane DeLuca, Ph.D., R.N., all of the UR School of Nursing; Susan Ladwig, M.P.H., and Daniel Schatz, of the UR School of Medicine and Dentistry; Ronald Epstein, M.D., professor of Family Medicine. Psychiatry, Oncology and Nursing at URMC; and Timothy Quill, M.D., professor of Medicine, Psychiatry, and Medical Humanities, and director of the Center for Ethics, Humanities, and Palliative Care at URMC. David Gramling, Ph.D., of the University of Arizona, and Stewart Alexander, Ph.D., of Duke University, also contributed to the study.
Friday, May 18, 2012
A Nurse Practitioner-Driven Palliative Care Intervention Improves Cancer Patients' Quality of Life
Recent studies have shown that palliative care interventions aimed at addressing patients' emotional, spiritual and social needs have a significant impact on cancer patients' quality of life and may even improve cancer patients' overall survival. Despite this, most cancer patients being cared for in their communities do not have access to these services.
Most cancer patients also do not have advance directives addressed and are not aware of the benefits of hospice services. In order to address this issue, researchers at Mayo Clinic in Florida decided to test whether a nurse practitioner-driven consultation that used quality-of-life assessment tools and advance directives tools resulted in improvement in the cancer patients' quality of life.
The researchers, who published their findings online in the Journal of Palliative Medicine, say their study suggests that a consultative visit between a nurse practitioner and a metastatic cancer patient goes a long way to improving that patient's emotional and mental well-being.
The study results were strongly positive despite the fact that only 26 patients were enrolled. A total of 100 had been planned but accrual to the study was halted when other recently completed randomized studies had shown the benefit of similar nurse driven palliative interventions. Patients also frequently refused to enroll if they were randomized to the "control" arm, which did not include a discussion with an oncology advanced registered nurse practitioner about advance directives and how their symptoms could best be managed. The 12 patients who did receive intervention from a nurse had a significant improvement in their emotional health, compared to the 14 patients in the control arm.
"The findings should be extremely helpful to oncologists in both community and academic medical practices concerned about how to incorporate palliative care, including discussions about advance directives in the outpatient management of their cancer patients," says the study's senior investigator, Gerardo Colon-Otero, M.D., an oncologist in the Division of Hematology/Oncology at Mayo Clinic in Florida.
The study also demonstrates that oncology clinics are not doing enough to help improve their patients' quality of life because they are so focused on treating the cancer. As a result, there are missed opportunities to provide additional support and many patients end up enrolling in hospice care much too late and do not have advance directives completed in a timely fashion.
"This study suggests that we shouldn't be afraid of these discussions, and that many of our patients actually welcome having advance directives and hearing about hospice services," Dr. Colon-Otero says. "This relatively simple strategy of having a nurse practitioner trained in palliative care and embedded within the oncology clinic to provide these consultation services is helpful, all the way around."
Based on the study findings, Dr. Colon-Otero and his colleagues at the Florida Society of Clinical Oncology received a grant from the American Society of Clinical Oncology (ASCO) to disseminate this program in Florida. As part of this grant, 13 nurse practitioners from both public and private cancer clinics throughout the state were trained at Mayo Clinic in Jacksonville in providing end- of-life counseling and symptom management to metastatic cancer patients. "This could be a model that many oncology practices can follow to bring palliative care and advance directives discussions to their cancer patients," he says.
Monday, April 16, 2012
Study Recommends Ways to Evaluate End of Life Care in Nursing Homes
While nursing homes are the place where an estimated 30 percent of Americans die, there currently exists no way to compare which institutions do a better job at managing end of life care. A new study appearing this week in the Journal of Palliative Medicine is starting a discussion over the need to create end of life quality measures in order to both inform consumers and provide nursing homes with incentive to improve care.
“Nursing homes are increasingly becoming the place where people go to die,” said Helena Temkin-Greener, Ph.D., a professor of Community and Preventive Medicine at the University of Rochester Medical Center (URMC). “By 2020, the percentage of people who die in these institutions will grow to 40 percent. And yet while we have seen an explosion of health care ‘report cards’ none of them can tell us which nursing homes are better at providing end of life care.”
The federal Centers for Medicare and Medicaid Services (CMS) compiles a wide range of information from staffing levels, inspection results, and measures of the quality of care – such a pressure sores, infections, and incontinence – for more than 16,000 nursing homes across the nation. This data is published on the CMS Nursing Home Compare website. While this information allows consumers to compare the performance of nursing homes for a number of aspects of care, it does not indicate how well or poorly a facility provides end of life care.
“The lack of measures of quality of care provided to dying residents not only denies patients and families the ability to make informed choices, but it also means that nursing homes do not have the information and the incentives to improve quality of end of life care,” said Dana B. Mukamel, Ph.D., professor in the Department of Medicine and senior fellow with the Health Policy Research Institute at the University of California, Irvine. “We know that there is a correlation between the publishing of quality measure and subsequent steps taken by providers – be that a nursing home or a hospital – to improve care.”
The study’s authors looked at two quality measures: the number of dying residents who were transferred to a hospital and subsequently died there and the use of hospice care in nursing homes. Their goal was to create prototypes of quality measures for end of life care and to demonstrate that such measures could be calculated from information that is currently available and added to the Nursing Home Compare report card.
Fewer hospital transfers – particularly at the end of life – are considered to indicate a higher level of care in a nursing home. Previous studies have shown that 45 percent of the time such transfers are inappropriate and avoidable. Because transfers increase the risk of illness, heighten stress, and are disruptive, they can accelerate a person’s decline in health and quality of life. The study found that 20 percent of long-term nursing home residents died in a hospital.
The use of hospice care – in which specialists in areas of pain and symptom management and psychological, emotional, and spiritual support and counseling are brought in to treat dying residents – also indicates a higher level of end of life care quality. Currently, an estimated 33 percent of nursing home residents received hospice care at the time of their death.
The authors are also studying two other quality measures that could signal the quality of end of life care – pain management and shortness of breath. The results of this study are expected to be published in another forthcoming paper.
“We believe that these measures, which can be readily calculated from data already being collected, have the potential to measure the quality of end of life care in nursing homes,” said Mukamel. “This is the first attempt to identify such a measure and we hope that this leads to a long overdue discussion in the health care community regarding this important topic.”
Ω
“Nursing homes are increasingly becoming the place where people go to die,” said Helena Temkin-Greener, Ph.D., a professor of Community and Preventive Medicine at the University of Rochester Medical Center (URMC). “By 2020, the percentage of people who die in these institutions will grow to 40 percent. And yet while we have seen an explosion of health care ‘report cards’ none of them can tell us which nursing homes are better at providing end of life care.”
The federal Centers for Medicare and Medicaid Services (CMS) compiles a wide range of information from staffing levels, inspection results, and measures of the quality of care – such a pressure sores, infections, and incontinence – for more than 16,000 nursing homes across the nation. This data is published on the CMS Nursing Home Compare website. While this information allows consumers to compare the performance of nursing homes for a number of aspects of care, it does not indicate how well or poorly a facility provides end of life care.
“The lack of measures of quality of care provided to dying residents not only denies patients and families the ability to make informed choices, but it also means that nursing homes do not have the information and the incentives to improve quality of end of life care,” said Dana B. Mukamel, Ph.D., professor in the Department of Medicine and senior fellow with the Health Policy Research Institute at the University of California, Irvine. “We know that there is a correlation between the publishing of quality measure and subsequent steps taken by providers – be that a nursing home or a hospital – to improve care.”
The study’s authors looked at two quality measures: the number of dying residents who were transferred to a hospital and subsequently died there and the use of hospice care in nursing homes. Their goal was to create prototypes of quality measures for end of life care and to demonstrate that such measures could be calculated from information that is currently available and added to the Nursing Home Compare report card.
Fewer hospital transfers – particularly at the end of life – are considered to indicate a higher level of care in a nursing home. Previous studies have shown that 45 percent of the time such transfers are inappropriate and avoidable. Because transfers increase the risk of illness, heighten stress, and are disruptive, they can accelerate a person’s decline in health and quality of life. The study found that 20 percent of long-term nursing home residents died in a hospital.
The use of hospice care – in which specialists in areas of pain and symptom management and psychological, emotional, and spiritual support and counseling are brought in to treat dying residents – also indicates a higher level of end of life care quality. Currently, an estimated 33 percent of nursing home residents received hospice care at the time of their death.
The authors are also studying two other quality measures that could signal the quality of end of life care – pain management and shortness of breath. The results of this study are expected to be published in another forthcoming paper.
“We believe that these measures, which can be readily calculated from data already being collected, have the potential to measure the quality of end of life care in nursing homes,” said Mukamel. “This is the first attempt to identify such a measure and we hope that this leads to a long overdue discussion in the health care community regarding this important topic.”
Ω
Tuesday, February 28, 2012
Improving the experience of dying
In their February editorial, the PLoS Medicine Editors reflect on recent research by Olav Lindqvist and colleagues which describes nonpharmacological palliative care for cancer patients in the last days of life. The qualitative study found that the approaches used by palliative care staff were multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. The Editors comment: "[Lindqvist and colleagues' findings] reveal the complex and sometimes subtle caregiving approaches that palliative care staff take to improve the experience of dying for both patient and family…Research such as this not only provides hope that it is possible to have a good quality of death but also suggests that through research the experience of dying can be improved."
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