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.
What Is A Life Worth?
Posted on Thursday, May 30th, 2013 at 2:38 pm by Life Matters Media
Geriatrician argues against bias against the aged and ill
Physicians caring for the elderly and for those nearing the end of life cannot be effective patient advocates until they confront their own deep and widespread prejudices, said geriatrician James Wright at the University of Chicago’s Conference on Medicine and Religion Wednesday.
Wright’s presentation, “The Courage to be a Geriatrician,” examined the bias held by many towards those lacking in independence, particularly those residents of nursing homes. “Most of us share the same prejudice, that life is of less value when lived in dependency,” Wright explained. “We are in a tradition that cultivates freedom, independence and productivity, and that is what we give value.”
“We live in an era of meaningless- now that we no longer fear the sword, plague, even hell, we fear meaningless,” Wright said.
This prejudice thus serves as a blockade to administering comprehensive care to some of society’s most vulnerable- the oldest and most infirm. Medical professionals, those in geriatrics especially, must experience a shift in mindset from valuing life based on independence and instead towards seeing innate human value. The oldest and sickest are long divorced by age and ability from past functions, Wright said, but their lives remain valuable. That value does not stem from any thing they once did.
Prejudices manifest, Wright said, when doctors make quality of life assessments. His research demonstrates that when simultaneous assessments of life quality are made by both physician and patient, the patient almost always scores his or her quality far higher than the physician. “These devaluations matter,” he said.
The discrepancy, Wright argued, arises out of the drive of younger, working people towards self-affirmation. We often think, he said ‘‘I am not only alive, but my existence has meaning.’’ This quest for meaning is why the able-bodied join larger movements- political, civic or social. These movements give us worth.
“We live in an era of meaningless- now that we no longer fear the sword, plague, even hell, we fear meaningless,” he said, and this fear inhibits proper care of those we judge to have none.
Wright pointed towards the leaders of the Protestant Reformation as ones who can teach medical providers intrinsic human value. “All beings have equal value not because they earned it, but they were made that way by God, the source of all value,” Wright said. Both Martin Luther and John Calvin agreed that all of us, as humans, are not good enough, and fall short of our own expectations. However, God who loves without condition.
“We are enough as is,” Wright said, “and that gives us courage to be not as something greater.” The most successful providers see all life as equally acceptable and valuable, simply because that life is human.
“All people are created equal and remain equal throughout the course of their lives,” Wright concluded. “Only with this conviction, can we truly be trusted to value and care for the elderly in a way we all deserve.”
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