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."
Wednesday, November 28, 2012
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.
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