TEDMED takes on caregiving
Posted on Sunday, December 2nd, 2012 at 6:41 pm by Life Matters Media
The stress and strife many caregivers face was the topic of TEDMED’s latest Great Challenge series. The streaming video featured health care professionals who pondered what should be done to manage end of life care options and address caregiver needs.
There are 44 million full and part-time caregivers in the U.S. responding to an aging baby boomer population that the health care system isn’t equipped to handle. Costs continue to rise, and in 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives.
“We all know what the issues we’re dealing with are: the aging population, the health care system not being in a position to take care of everyone, people getting busier and living further away from other family members and a real need for better coordination of care in the marketplace.” said Alan Blaustein, the founder of CarePlanners, an organization which provides educational support to members. “The real issue at hand is that there’s nobody in the system who’s in any position to properly care-give or coordinate care for any member of your family,” so the responsibilities rely on family.
Education was a common theme throughout the discussion directed at both medical students and family caregivers. Blaustein insists students learn about caregiving, even though hospital settings don’t allow time for much talk with those managing the care.
Cheri Lattimer, director of the National Transitions of Care Coalition, offered practical wisdom for those just beginning the implementation of educational support programs for those caring for family.
Lattimer proposed that health professionals talk with “health literacy” to those looking for education and just starting to care for those with dementia. “We are talking in the health literacy that patients and consumers can understand. As providers of care we often go into medical terminology which can be difficult to understand.”
She also recommends educational programs with multiple individuals who are dealing with similar struggles- so they can talk to each other.
More and more young people are now taking on caregiving roles. “There are far more children who provide caregiving than we know. It has an impact on them, their schoolwork and their own emotional situations,” said Suzanne Geffen Mintz, the co-founder of the National Family Caregivers Association.
“Other countries have recognized this problem and developed youth-centered programs that allows kids to be kids. There is vast experience elsewhere that could be adapted here,” said Carol Levine, director of the Families and Health Care Project. Young adults, 18 to 25-years-old, are also overlooked and increasingly involved in family caregiving, she said. There is diversity in family caregiving, and varied caregivers have varied needs.
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Childless baby boomers plan for end of life care
Posted on Sunday, November 18th, 2012 at 2:11 pm by Life Matters Media
As the nation’s large baby boomer population continues to age, some childless seniors are wondering who will take care of them at the end of life. The Sacramento Bee’s Anita Creamer highlights such individuals in a new feature focusing on the struggles childless seniors face in planning for their future.
Creamer spoke with Karen Spencer, 60, who didn’t marry until she was in her late forties. Like more than 20 percent of her generation’s women, she’s one of the 15 million boomers who never had children.
“I have nieces and nephews who would show up, but I don’t want them to feel like it’s necessary to take care of me,” said Spencer who lives in Granite Bay, California with her 68 year-old husband Mike Twigg. “Either I go into assisted living, or I stay in my home with somebody taking care of me. That would be my intention with the long-term care insurance.”
Although she has some savings and a long-term care insurance policy, she worries about the non-monetary situations that could arise, such as the need for home repairs, hospital advocacy and family visits.
“These are issues that we’ll have to grapple with as a country,” said Lynn Feinberg, an AARP policy expert on caregiving. “When somebody needs long-term care, they typically turn to their children.”
There is an increasing reliance on fewer family members to take care of older relatives. ”The expectation on a nephew to care for his elderly aunt as well as his own parents and children presents a real challenge,” said Feinberg.
In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.
Creamer describes this issue as a women’s issue, because two-thirds of the 11 million boomers who’ve already lost their spouses are female. Experts aren’t quite sure what will happen to frail seniors without children on whom to rely.
“Even so, both baby boomers and their elders indulge in a rather startling lack of planning for their care needs in old age,” Creamer writes. A recent Centers for Disease Control study shows that only 37 percent of older adults who aren’t in nursing homes or hospice care – and only 15 percent of all adults – have completed legal proxies to specify who can make decisions on their behalf.
Dr. Larry Weiss, founder of Reno’s Center for Healthy Aging, and Feinberg suggest a “Golden Girls” scenario becoming increasingly popular. Small group of seniors are starting to live together, sharing expenses and caring for one another.
Last year, The New York Times’ Paula Span wrote about childless seniors and their quality of life. She interviewed Dr. Merril Silverstein, a gerontologist at the University of Southern California, who found that people at least 75 years old with trouble walking across a room weren’t receiving less care than those who were parents. They also didn’t score lower on measures of psychological well-being.
“The popular idea was that without children, you’d be in a whole heap of trouble,” Dr. Silverstein said. “But there’s not a whole lot of empirical evidence showing that.”
Seniors can stay in their homes
Henry Cisneros and Jane Hickie, of the Stanford Center on Longevity, offer some advice on how seniors could stay in their homes if necessary changes happen within them.
American housing design standards have undergone few changes since 1964, Hickie said last month at the Northwestern University Buehler Center on Aging. Home construction then was based on measurements of able-bodied men who were in military service during World War II. “The problem is that these design standards don’t fit a population that is shorter, less flexible, fatter, has less muscle mass and is just not as strong as younger people who were the basis for those standards.”
Contrasting colored lining on steps and furniture, better lighting and guide lights can help seniors continue to live in their own homes.
Spencer likes the idea of staying in her home and being surrounded by friends. Spencer and a life-long friend talk about staying in the same neighborhood and eventually traveling together.
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Rethinking health care with patient advocacy
Posted on Monday, September 3rd, 2012 at 11:31 am by Life Matters Media
New strategies to facilitate patient care and communication with doctors can allow for better treatment options and cut wasteful spending. The Commonwealth Club of California convened a panel of health care experts to share their knowledge and ideas for advancing patient-oriented care and advocacy.
Among those on the panel was Jennifer Brokaw, M.D., the founder of patient advocacy organization Good Medicine. Brokaw serves her clients by being bedside as an “outsider” in hospitals. Advocates, Brokaw says, try to shepherd clients from the hospital to home while evaluating care from an unbiased perspective.
According to Good Medicine, “[Brokaw] advises clients about medical decision making, coordinates care with both primary doctors and specialists and provides support and advisement to families of patients in the hospital.”
Good Medicine, which is based in San Francisco, has already had much success. According to The New York Times, “Dr. Brokaw and her colleagues have thus far helped about two dozen people explain their goals and preferences, at a cost of $1,500 for each person.”
Patients pay out of pocket for services such as hers, but Brokaw finds such a charge actually benefits consumers. “We don’t answer to anyone other than the person that’s paying us,” says Brokaw. This relationship helps patients trust advocates more than doctors and insurance companies.
“Hospitals for example, are not interested at all in making sure patients don’t come back to the hospital, because they get paid every time they come back in.”
The panel also addressed the need for advance care planning. Brokaw says she would like all Americans to ask, “What is the minimum quality of life you would accept for yourself?” A death in the hospital instead of one in the comfort of home may stem from a lack of planning. Many of the calls Brokaw fields are from children of seniors who want to ensure their parents are making the right decisions.
Wayne Pan, M.D., of Health Access Solutions says he believes hospitals actually encourage repeat visits and treatments without much consideration to patients’ wishes. His firm helps coordinate and streamline care. Pan says, “Hospitals for example, are not interested at all in making sure patients don’t come back to the hospital, because they get paid every time they come back in.”
Talk of misinformation and misunderstanding about the costs of care threaded throughout the panel discussion. These costs are a problem both doctors and patients face. According to Brokaw, “It’s really incredible how little we understand about our health care.” She continues, “Even worse, doctors have no idea how much they spend of our total health care dollars when they order tests.”
Brokaw says that record keeping, made easier with technology, can help remedy this problem. Building flags into the health care system will eventually help control spending through the use of electronic health records, says Brokaw. Doctors will be advised to order less expensive medicines when possible and be more timely with tests, similar to the managed care of the 1980s.
Jay Tenenbaum is the founder of Cancer Commons, a scientific non-profit dedicated to continually refining information about cancer subtypes and treatments. Tenenbaum explained how patients can benefit from the undiscovered research of oncologists. “What Cancer Commons is trying to do is build the knowledge base that everyone needs. To be able to take the 100 thousand papers that are published every year in cancer and the results of the 10 thousand clinical trials and reduce that through web-based collective intelligence.” Cancer Commons aims for every patient’s treatment to be recorded and archived for future patients with similar diagnoses.
The panel remained optimistic. Brokaw believes that in 20 years, the system will be much easier for patients to navigate.
Audio of the event is available at the Commonwealth Club of California.
Learn more about patient advocacy at Good Medicine.
Learn more about planning at The New York Times.
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