Palliative Medicine Helps Patients Live And Die Better, Advocates Say
Posted on Saturday, May 9th, 2015 at 10:17 am by lifemediamatters
End of life care advocates decried the dearth of palliative medicine for terminally ill patients at a conference hosted by one of the Midwest’s largest nonprofit hospice providers this week.
“Gradual dying is treated as some sort of medical crisis, instead of a natural process in the life of human beings,” said Martha Twaddle, a palliative care physician. “We have this obsession with technology and the need to know more, as opposed to asking ourselves that very critical question: I could, but should I? Is it really beneficial to do more, to investigate more? Does it really bring value to this person and their family?”
The spring symposium was hosted by Barrington, Ill.-based JourneyCare, an organization in the process of merging with Horizon Hospice & Palliative Care and Midwest Palliative & Hospice CareCenter. Twaddle recently became the organization’s senior vice-president of Medical Excellence and Innovation.
“Why in heaven’s name do we wait until someone is mottled, no longer urinating, to talk about quality of life and goals of care?” she asked. “Why weren’t we having those conversations all along?”
Palliative medicine is specialized care for seriously ill patients that focuses on providing patients with relief from symptoms and stress of serious illness. Twaddle refers to it as “supportive care,” because the goal is symptom management, not cure.
Twaddle said advance health care planning and serious end of life conversations could help more patients and families avoid unwanted and costly treatments. Although nearly 80 percent of Americans say they believe it is important to plan for their end of life care, less than 25 percent do.
The Institute of Medicine is calling for more public education and engagement strategies to raise awareness about care options. However, palliative care suffers from an identity problem, as 70 percent of Americans describe themselves as “not at all knowledgeable” about it, according to a 2013 editorial published in The New England Journal of Medicine.
Twaddle highlighted a widely circulated 2010 study published in NEJM finding that among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and life expectancy.
“As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.” researchers write. “Given the trends toward aggressive and costly care near the end of life among patients with cancer, timely introduction of palliative care may serve to mitigate unnecessary and burdensome personal and societal costs.”
In its essence, proper palliative medicine harkens back to the values of ancient philosophers and doctors who viewed death as inevitable. Supportive care is vital, Twaddle said, because modern medical interventions are often aimed at eradicating disease and fighting death, which causes dying patients unnecessary suffering.
Twaddle quoted ancient philosopher Plato: If one is to cure the ear, one must first cure the head, and to cure the head, one must cure the body, but to cure the body, one must start by curing the soul— for if the part is to be well, the whole must be well.
“Plato, Aristotle and Hippocrates were part of allopathic medicine, the medicine most of us in the West are trained in. But it’s unusual if we go into the emergency room,” she said. “Most physicians don’t think about the whole being well.”
Duke And University Of Colorado Awarded Millions For Palliative Care Research
Posted on Tuesday, February 11th, 2014 at 12:10 pm by lifemediamatters
Duke University and the University of Colorado schools of medicine have received a $10 million grant from the National Institute for Nursing Research to continue development of the Palliative Care Research Cooperative Group (PCRC) over the next five years. The consortium aims to promote best practices for relieving suffering and improving quality of life for seriously ill patients.
“We intend for the PCRC to set the gold standard for multisite palliative care and end of life research,” said Dr. Amy Abernethy, director of the Center for Learning Health Care at Duke and PCRC Co-Chair. “Progress under the initial grant has catalyzed an outpouring of broad interest, motivation, support and enthusiasm. The award will support efforts to build the cooperative group into a more robust, enduring resource for research support and training.”
The research group was established in 2010 with initial funding from the National Institutes of Health, and it now includes more than 20 member institutions from across the nation.
Abernethy said she is passionate about new research because of the dire need for proper end of life care. “It is an incredible national investment in infrastructure that has been needed for a long time,” she said. “The U.S. population is aging, and many suffer from multiple chronic diseases at the same time. The need for palliative care will increase, and we don’t have enough senior palliative care researchers, people who have the basic palliative care research toolbox.”
Dr. Jean Kutner, professor of medicine at the University of Colorado School of Medicine and PCRC Co-Chair, said the funding will allow them to better inform physicians and patients about the benefits of palliative medicine. “We will develop key resources and infrastructure that nurture, enlist and harness investigator and site interest,” she said. “This will enable us to promote the conduct and translation of high-quality, collaborative, patient-centered palliative care and end of life research.” Medical students, junior researchers and general practitioners could benefit from new findings and guidance.
Palliative medicine is provided to the terminally and seriously ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal of palliative care is not cure, but symptom management.
Abernethy and Kutner oversaw the group’s first multi-site clinical trial designed to determine if discontinuing cholesterol-lowering medications when patients near the end of life alters survival and quality of life. The results are expected to be published in the coming months.
Palliative Medicine Suffers An Identity Problem
Posted on Monday, December 23rd, 2013 at 10:06 am by lifemediamatters
Palliative medicine suffers from an identity problem. That assertion comes from the authors of a new editorial published in The New England Journal of Medicine who determined that 70 percent of Americans describe themselves as “not at all knowledgeable” about palliative care.
Palliative medicine is usually provided to the terminally and seriously ill in order to treat the symptoms and side-effects of disease and aggressive treatments. The goal of palliative care is not cure, but symptom management.
“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment,” according to the Center to Advance Palliative Care and the American Cancer Society.
Because palliative medicine is specialty care most often provided by expert clinicians only when life-prolonging medicines have failed, other seriously ill patients and doctors tend to overlook it. “Limiting specialty palliative care to those enrolled in hospice or admitted to the hospital ignores the majority of patients facing a serious illness, such as advanced cancer, who have physical and psychological symptoms,” the researchers write. “We believe that palliative care should be initiated alongside standard medical care for patients with serious illnesses.”
Palliative care experts from Harvard Medical School, Massachusetts General Hospital, the American Cancer Society and Johns Hopkins University co-authored the editorial.
It is vital for patients and doctors to understand the differences between palliative medicine and hospice care. The Medicare hospice benefit provides hospice care exclusively to patients willing to forgo curative treatments and who have a physician-estimated life expectancy of 6 months or less. Palliative medicine is not limited by life expectancy. It also is not dependent on a patient’s preference for curative treatment.
“Several clinical trials have shown benefits of early specialty palliative care in patients with advanced cancer,” the researchers explain. “The effect of early specialty palliative care in other patient populations is less well studied, but there are data suggesting a beneficial role in patients with multiple sclerosis and congestive heart failure.”
However, there is concern that political debates over “death panels,” physician-assisted suicide and reimbursement for advance care planning have made policymakers reluctant to devote resources to initiatives associated with death and dying. “National Institutes of Health allocations for research focused on palliative care remain far behind funding for procedure-oriented specialties,” the researchers add.
Their conclusion: palliative care should no longer be reserved exclusively for patients who have exhausted other options for life-prolonging therapies. “Early provision of specialty palliative care improves quality of life, lowers spending, and helps clarify treatment preferences and goals of care for patients with advanced cancer,” the researchers offered.
LGBT Seniors Fear Discrimination From Caregivers
Posted on Monday, July 1st, 2013 at 12:00 pm by Life Matters Media
Dozens of seniors and medical providers crowded into the Unitarian Church of Evanston, Illinois Saturday to watch “Gen Silent,” a critically acclaimed 2011 documentary highlighting the fears many seniors in the LGBT community have about end of life care.
Directed by Stu Maddux, the film chronicles the lives of six seniors living near Boston. They go back-and-forth recounting their experiences growing up during the onset of the gay rights movement and sharing their present struggles– ranging from fears of abuse from long-term care providers to judgmental caregivers and family members.
“When someone’s facing the end of life and feeling alone and isolated it’s incredibly sad,” said palliative care physician Catherine Deamant, a member of Chicago’s End of Life Care Coalition. Many in the LGBT community are afraid to show their “true selves” to caregivers for fear of bullying, she said, and long-term care facilities tend to overlook the individual.
“Many who won the first civil rights victories for generations to come are now dying prematurely because they are reluctant to ask for help and have too few friends or family to care for them,” according to the film’s website. Oppression from the years before the Stonewall riots continues to linger with those in the film.
The audience was clearly moved by the hour-long film, with many wiping their eyes or shaking their head with disapproval at some of the film’s more emotional moments. “I find it very frightening what lies ahead of me,” one man shouted out during the discussion. “Is this another reflection of how we handle the elderly? Why should it be different for any other group?” a woman asked.
The film, similar to the 2012 Oscar-winning drama, “Amour,” did not shrink away from showing the hard truths of aging, including scenes of hospitalization and loss of strength. “I think they saw the full humanness of the people in the film– they weren’t one-dimensional,” Deamant said.
Duty Of Physicians To Inform Patients Of Hospice, Palliative Care
Posted on Saturday, June 1st, 2013 at 1:11 pm by Life Matters Media
Physicians have an ethical duty to inform their patients facing end of life about hospice and palliative care services, said Dr. Frederick Smith, director of clinical ethics at North Shore-LIJ Health System.
Smith’s presentation, part of the University of Chicago’s second annual Conference on Medicine and Religion, criticized the choices of many physicians who urge their patients to continue with more aggressive, painful treatments instead of more comfortable end of life care. Drawing inspiration from Judaism, Christianity and Islam, Smith suggested hospice and palliative care are compatible with religious teachings about death and pain. “A central function of religion is to provide meaning and consolation,” he said.
There are two things a failing patient needs to accomplish the “work of dying”: consciousness and time, Smith said. Dying allows patients time for reflection about life and opportunities for reconciliation. “Jesus wants his followers to seek reconciliation,” Smith said, noting the Lord’s Prayer.
“The Prophet Muhammad placed great value on forgiving the poor man’s debt,” Smith said. “The sacred books of the three great traditions, which originated with God’s call to Abraham, summon their adherence to a righteous life, comprised with loving adherence to God and honorable treatments to family, neighbors and even strangers. They teach that death is not the end.”
Hospice is most often used when curative treatment is no longer effective and a terminal patient is expected to live about six months or less. Palliative care is treatment that enhances comfort and improves the quality of life for patients. When deteriorating persons are not allowed time to begin the “work of dying,” they are more likely to leave feuds and conflicts unresolved, often carried on with the next generation. “Feuds should not be taken to the grave,” Smith said.
One-third of hospice patients are too frail to begin the “work of dying,” because they are too frail, Smith said. They are transferred to hospice too late, only after aggressive treatments fail. Medicare reimburses for hospice care for up to six months, with extensions for failing patients who continue beyond six months.
Findings published in the Journal of the American Medical Association show hospice is often a last resort.
“Clinicians frequently ignore conversations about the likelihood of survival. If patients with life ending conditions truly knew the end was coming, would not it be better to take advantage of hospice?” Smith said.
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