Saturday, September 26, 2009

When Elder Care Problems Escalate, You Can Hire an Expert -

Caring for an elderly parent is emotionally and mentally draining. There are diagnoses to decipher, housing issues to consider, health aides to vet and a raft of legal documents to complete. It can seem overwhelming, even when families are in complete agreement on how to care for an elderly relative. And often they are not.

Last week, my colleague Walecia Konrad offered advice on how to find “respite care” — someone to temporarily help you tend to an elderly parent or loved one so you can have some time for your own life. This week, I am writing about what to do when you feel the situation calls for the equivalent of a case worker.

Happily, such case workers can be found. They are called geriatric care managers.

Yes, you must pay these professionals out of your own pocket. Regular insurance does not cover them, although some long-term care policies do. But a good care manager can buy you time and some peace of mind so you can concentrate on your job, your family and your own health.

A typical case might be Howie Gray and his two brothers. For years, they had cared very well for their widowed mother, Delle Gray. Ms. Gray lived alone in a ground-floor condominium in Brookline, Mass., two streets away from her son Stephen. But after Ms. Gray passed out in the bathroom one night, the sons suspected that their mother, then 90, needed more help.

“We wanted her quality of life to be as good as it could be,” Howie Gray said.

But the men, busy with their own lives, did not have the time or expertise to figure out what was missing. So about five years ago, they hired Audrey Zabin, a care manager in Boston.

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Thursday, September 24, 2009

Alltop - Top Health News

Political Lobbying Drove FDA Process -

The recent approval of a new device to treat knee injuries followed a lobbying campaign that overcame repeated rejections by scientists within the Food and Drug Administration, agency documents show.

The FDA's internal dissent over Menaflex, which targets the most-common knee injury afflicting everyone from high-school athletes to baby boomers, is straining a government agency that oversees a quarter of the U.S. economy. Some senior FDA staff members complained in documents that the handling of Menaflex, made by ReGen Biologics Inc., shows how political and industry pressure can influence scientific conclusions.

At issue isn't just the efficacy of the device -- that remains in dispute -- but the nature of the FDA's own approval process.

In one instance, emails show the FDA's integrity office excising language from a draft letter an FDA lawyer said would "document special treatment for ReGen." (Read the emails.)

Menaflex was approved under fast-track rules that don't require clinical trials needed under a full review. "There's something wrong with how that decision [to go the fast-track route] was made," said Andrew von Eschenbach, who was head of the FDA in December, when Menaflex got the go-ahead. "We fumbled that process."

Dr. von Eschenbach, who stepped down in January with the arrival of the new administration, is calling for an overhaul of the way the $200 billion-a-year medical-devices business is regulated. The fast-track system "has gotten out of control," he said.

President Barack Obama has yet to name his choice to run the FDA. Administration officials say they want someone to shake up what they see as the agency's culture of deference to companies. Industry groups, concerned that red tape could prevent new important medical advances from reaching market quickly, are lobbying for their own candidates.

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Would you donate your kidney to a stranger? - The Globe and Mail

When Lisa Sayer decided to give away one of her organs, she knew some people would think she was crazy. What about the health risks? What if your kid ever needs one? What if the recipient is a jerk? She didn't expect to make Canadian medical history – and help save the lives of four complete strangers.

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The Way We Die Now -

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she'd been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton's army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother's decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

"The whole focus had been centered on her illness and her aging," said Kitzhaber. "But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage."

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Nobody was more frustrated than John Kitzhaber as the health care debate got hijacked over the summer by shouters and misinformation specialists. And no politician is more battle-scarred on this issue. He looks, at 62, still the Western man, with his jeans, his shag of gray hair, the face weathered by days spent trying to lure steelhead to the surface in the Rogue River. It has been his life work to see if at least one part of country could join the family of nations that offers universal coverage.

With his mother's death in 2005, Kitzhaber lived the absurdities of the present system. Medicare would pay hundreds of thousands of dollars for endless hospital procedures and tests but would not pay $18 an hour for a non-hospice care giver to come into Annabel's home and help her through her final days.

"The fundamental problem is that one percent of the population accounts for 35 percent of health care spending," he said. "So the big question is not how we pay for health care, but what are we buying."

He is not, he says, in favor of pulling the plug on granny. The culture of life should be paramount, he says, following the oath he took as a doctor. But Oregon, years ahead of the rest of the country, has talked and talked and talked about this taboo topic, and they've voted on it as well, in several forms. They found — in line with national studies — that most people want to die at home.

In addition, Oregon was the first state to allow terminally ill patients to take medications to end their lives. The fear was, Oregon would become a death magnet, drawing suicide tourists and put itself on a slope to euthanasia. But it has not worked out that way. Since the change in the law in 1997, only about 33 people a year with terminal illnesses have ended their lives by their own hand with a doctor's prescription.

In last year's presidential campaign, Kitzhaber tried to make health care the top domestic issue. After the campaign, he was on the short list to become President Obama's secretary of health and Human Services. Now he's running, next year, for a third term for governor.

He was appalled when Sarah Palin and Senator Charles Grassley of Iowa started stoking fears of nonexistent death panels. At last, public officials were talking about death — but only to scare the elderly and win political points.

More sensible voices have since joined the debate, asking how we reform a system that lavishes most of its benefits on a cure for the "disease" of aging. President Obama has talked about squeezing billions of waste, fraud and abuse from Medicare. But he has yet to admit the obvious: those savings can only come from changing the way the system treats dying people.

About $67 billion — nearly a third of the money spent by Medicare — goes to patients in the last two years of life. The need to spend less money at the end of life "is the elephant in the room," Evan Thomas wrote in "The Case for Killing Granny," the cover story in last week's Newsweek. "Everyone sees it but no one wants to talk about it."

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents' generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: "What is our legacy?"

Wednesday, September 23, 2009

Fibromyalgia - Reporter's File - The Long Search for Fibromyalgia Support - NY Times Health

Glenn Robinson was always physically affectionate with his wife,
Judy. But after she underwent abdominal surgery four years ago,
everything changed.

Long after the incision healed, Judy had pain in her hips, her lower
back, her legs, her muscles, her skin. When Glenn tried to tickle or
squeeze her, she would shy away. Hugs would elicit a grimace. "Don't
touch me; it hurts," she would say, backing off. Glenn reacted the
way any husband would. "I got angry," he said.

The couple's social life ground to a halt. Judy, 48, began begging
off picnics, barbecues and trips to the boat races at Belle Isle Park
in Detroit, where they live.

"We would make plans to get together with friends for dinner," said
Glenn, 50. "Come that day, beautiful weather, she wouldn't want to
leave the house."

There were days when Judy didn't even want to talk on the phone. And
though she soldiered through eight-hour workdays in the shipping and
receiving department of a leather company, she would take breaks to
sit in the bathroom and cry.

The Robinsons became desperate to find out what could possibly be
causing Judy's pain. M.R.I.'s turned up nothing more than a herniated
disc or osteoarthritis. Both can be excruciating, but neither could
account for the pains Judy felt all over her body. Her doctor
prescribed narcotics, but even those didn't help. It hurt to wash her
face. It hurt to raise her arm. It hurt to sleep. It still does.

"If you touch my back, it feels like it's all bruised," she said.
"Lately it's felt like electroshocks."

In March 2009, after four years of suffering, Judy finally found a
new doctor who could name her ailment: fibromyalgia.

If there is a circle of purgatory that Dante forgot, it might be the
one reserved for fibromyalgia sufferers. The problem isn't just
pervasive pain. It's the challenge of having a condition that is not
well understood. It doesn't help that there is no objective medical
test to confirm it — no blood test, no cheek swab, no X-ray — just a
patient's subjective reports. Nor does it help that there is no cure.
Many physicians don't want to be bothered with incurable patients.

If doctors don't sympathize, why would friends? How do you explain to
people that you have no broken bones or burns or even infections, yet
your body hurts all over? You look fine, yet beg off work and social
engagements. Are you a malingerer? Are you just trying to claim
disability? Are you simply crazy? And why don't you get better?

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VA's health record system cited as model for a national network - Nextgov

One of the more perplexing problems facing the Obama administration's pursuit of building a nationwide electronic health records system is the fact that hospitals and doctors can't share medical data seamlessly because the medical networks are incompatible.

But many health officials say they might have found the solution at the Veterans Affairs Department. Medical information technology specialists and industry executives told Nextgov that the open-source version of the VA's electronic health record system called the Veterans Health Information System and Technology Architecture (VistA) could serve as a building block for e-health networks nationwide and provide a variety of plug-and-play medical applications that can be easily shared among clinicians.

Open-source systems allow a range of applications that power information sharing to be shared on a large scale, just as users of Apple Computer's iPhone's open interface can download thousands of various applications off the Internet. The same model should be the primary approach the Obama administration uses when spending the $19 billion stimulus investment in health information technology, two doctors wrote in an article in the latest issue of the New England Journal of Medicine, released on March 25.

Dr. Isaac Kohane, director of informatics at Children's Hospital in Boston, and Dr. Kenneth Mandl, a pediatrician at the hospital and a professor at Harvard Medical School, wrote that the if the iPhone model were applied to health IT, it would stimulate a variety of low-cost medical applications that hospitals and doctors could download from the Internet to apply to the management of health records and patient data.

And the open source version of VistA "is definitely worth looking at" as a platform on which to build similar applications, Kohane told Nextgov in an interview.

Some health networks have already used VistA to deploy open-source records systems. Community Health Network of West Virginia, which operates 80 clinics serving 120,000 patients, deployed a version of OpenVistA in 2005, and the state of West Virginia installed the OpenVistA version in eight hospitals in 2006.

OpenVistA costs a tenth of the price of commercial health IT software, said Jack Shaffer, chief information officer of the nonprofit Community Health Network. For example, the West Virginia University Hospital System spent about $90 million to install commercial health software from EPIC Systems Corp. in seven hospitals, while the state's Health and Human Resources Department installed OpenVista in eight hospitals for $9 million.

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Sunday, September 20, 2009

Analysis: You Have No Idea What Health Costs - Washington Post

The most important health-care document released this week was not Sen. Max Baucus's Healthy Future Act. It was the Kaiser Family Foundation's 2009 Employer Benefits Survey.

While the proposal by Baucus, chairman of the Senate Finance Committee, outlines a direction for policy, the survey, which polls employers about health benefits to assemble a detailed look at the actual cost of health care, fits it squarely in our pocketbooks.

The truth is we all pay, and much more than we recognize, for health care.

For many, it's among the largest investments we'll make, on par, even, with the money we spend on a house or tuck away for retirement. But while it's easy to track our stock portfolios as they tank along with the market, our outlay for health care is less obvious. Employers pay some, and so do individuals, and taxpayers. And some even hides behind the deficit. As such, few of us see the full picture. But to make sense of the proposals for reform, getting a grasp of the cost is critical.

The average health-care coverage for the average family now costs $13,375, according to Kaiser. Over the past decade, premiums have increased by 138 percent. And if the trend continues, by 2019 the average family plan will cost $30,083.

Three years of slightly above-average health insurance will cost a solid six figures.

Those are numbers to marvel at. Those are numbers to fear. But they are not the numbers that loom in the minds of most Americans. And therein lies the problem for health-care reform.

About 160 million Americans receive health coverage through their employers. In general, the employer picks up 73 percent of the tab. This seems like a good deal. In reality, that money comes out of wages.

As Ezekiel Emanuel, who advises Office of Management and Budget Director Peter Orszag on health-care policy, has pointed out, health-care premiums have risen by 300 percent over the past 30 years (and that's after adjusting for inflation). Corporate profit per employee has soared by 200 percent. Hourly earnings for workers, adjusted for inflation, have fallen. The wage increases have been consumed by health-care costs.

Another 80 million Americans are on public plans, mainly Medicare and Medicaid. Those costs are paid by taxpayers. And about 46 million Americans are uninsured. The costs for their care are shifted to the insured: This raises premiums for the average family by $1,100 each year, according to an analysis by Ben Furnas and Peter Harbage of the Center for American Progress.

Imagine if people who touched a hot stove felt only a small fraction of the pain from the burn. That's pretty much what's happening in our health-care system. It hurts enough that we would prefer it to stop, but the urgency is lost.

That's the dilemma for Washington wonks trying to fix this mess: They look at the numbers and see health-care costs crushing our economy, overwhelming our government, swallowing our wages. But the public isn't feeling it. Virtually no one cuts a $13,375 check for health care. Most pay 27 percent of it, or even less. The surest way to cut health-care spending would be to make people shoulder more of the burden directly, as opposed to hiding it in taxes and lost wages. But that's about as popular as a puppy pot roast.

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Is the Mayo Clinic a Model Or a Mirage? Jury Is Still Out.

The Mayo Clinic looms out of the prairie here like the mecca it has become, a world-renowned medical complex that is often cited by President Obama as his model for national heath-care reform.

"Look at what the Mayo Clinic is able to do. It's got the best quality and the lowest cost of just about any system in the country," Obama said in Minneapolis this month. "So what we want to do is we want to help the whole country learn from what Mayo is doing. . . . That will save everybody money."

Few dispute the prowess of Mayo, which brings in $9 billion in revenue a year and hosts 250 surgeries a day. But a battle is underway among health-care experts and lawmakers over whether its success can be so easily replicated. Before embracing a fundamentally new approach to health care, dissenting experts and lawmakers say, Congress should scrutinize the assumption that a Mayo-type model is the answer.

They point out that Mayo's patients are wealthier, healthier and less racially diverse than those elsewhere in the country. It has few poor patients. It limits the number of procedures it performs per patient, but the rates it charges private insurers and self-paying patients is higher than average, allowing it to thrive despite the lower Medicare spending cited by its supporters.

Armed with their new stature, officials from Mayo and a handful of similar facilities have become determined lobbyists in their own right. They are pushing for an overhaul of Medicare that would reward cost-effective hospitals and doctors, while punishing others.

But if the Mayo model is, in fact, difficult for even the most dutiful hospitals elsewhere to mimic, such an overhaul could set up many providers nationwide for failure -- and a big loss of funds.

"It's not [Mayo's] model. It's their patients and money. If you have the money, you can attract good staff, good doctors, good nurses," said Richard A. Cooper, a professor of medicine at the University of Pennsylvania. "You are going to force hospitals to find ways to avoid taking care of poor people just because they are going to be penalized because poor people cost more."

Mayo and other oft-cited model facilities also are lobbying against one of Obama's favored provisions: a government-run insurance plan, or public option, which would work against these hospitals' financial position.

"What they want to do is leverage their high-quality delivery systems to keep as much of a private delivery system as possible," said Gerry Shea, the AFL-CIO's chief health-care negotiator.

Mayo and the other model centers -- which tend to be in the Upper Midwest, Mountain West and Pacific Northwest -- have gained their current stature because of Dartmouth University research showing that they spend less per Medicare patient than their counterparts elsewhere, including in Miami, Los Angeles, New York and much of Texas and the South. Many experts have seized on the data to conclude that the key to reining in health-care spending is to emulate Mayo -- a large group practice in which physicians are on salary and have less incentive to perform unnecessary procedures than physicians paid on a "fee for service" basis.

"These communities are able to control utilization [of health care] without harming patients," said Don Berwick, head of the Institute for Healthcare Improvement.

Mayo officials say their model dates to the clinic's founding in the late 19th century by brothers Charles and William Mayo, still known around the campus simply as "Charlie and Will." As their clinic grew, it became known for its quality and the brothers' insistence that doctors work on salary.

That, Mayo physicians said, has drawn doctors more committed to their professional obligations than to making high salaries by racking up procedures. "I didn't go to medical school to be the hardest-working guy in the room. I went to medical school to take care of patients," said cardiac surgeon Thoralf Sundt.

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