Saturday, August 3, 2013
Mr. Shopenn, 67, an architectural photographer and avid snowboarder, had been in such pain from arthritis that he could not stand long enough to make coffee, let alone work. He had health insurance, but it would not cover a joint replacement because his degenerative disease was related to an old sports injury, thus considered a pre-existing condition.
Desperate to find an affordable solution, he reached out to a sailing buddy with friends at a medical device manufacturer, which arranged to provide his local hospital with an implant at what was described as the "list price" of $13,000, with no markup. But when the hospital's finance office estimated that the hospital charges would run another $65,000, not including the surgeon's fee, he knew he had to think outside the box, and outside the country.
"That was a third of my savings at the time," Mr. Shopenn said recently from the living room of his condo in Boulder, Colo. "It wasn't happening."
"Very leery" of going to a developing country like India or Thailand, which both draw so-called medical tourists, he ultimately chose to have his hip replaced in 2007 at a private hospital outside Brussels for $13,660. That price included not only a hip joint, made by Warsaw-based Zimmer Holdings, but also all doctors' fees, operating room charges, crutches, medicine, a hospital room for five days, a week in rehab and a round-trip ticket from America.
"We have the most expensive health care in the world, but it doesn't necessarily mean it's the best," Mr. Shopenn said. "I'm kind of the poster child for that."
As the United States struggles to rein in its growing $2.7 trillion health care bill, the cost of medical devices like joint implants, pacemakers and artificial urinary valves offers a cautionary tale. Like many medical products or procedures, they cost far more in the United States than in many other developed countries.
Makers of artificial implants — the biggest single cost of most joint replacement surgeries — have proved particularly adept at commanding inflated prices, according to health economists. Multiple intermediaries then mark up the charges. While Mr. Shopenn was offered an implant in the United States for $13,000, many privately insured patients are billed two to nearly three times that amount.
An artificial hip, however, costs only about $350 to manufacture in the United States, according to Dr. Blair Rhode, an orthopedist and entrepreneur whose company is developing generic implants. In Asia, it costs about $150, though some quality control issues could arise there, he said.
So why are implant list prices so high, and rising by more than 5 percent a year? In the United States, nearly all hip and knee implants — sterilized pieces of tooled metal, plastic or ceramics — are made by five companies, which some economists describe as a cartel. Manufacturers tweak old models and patent the changes as new products, with ever-bigger price tags.
Generic or foreign-made joint implants have been kept out of the United States by trade policy, patents and an expensive Food and Drug Administration approval process that deters start-ups from entering the market. The "companies defend this turf ferociously," said Dr. Peter M. Cram, a physician at the University of Iowa medical school who studies the costs of health care.
Though the five companies make similar models, each cultivates intense brand loyalty through financial ties to surgeons and the use of a different tool kit and operating system for the installation of its products; orthopedists typically stay with the system they learned on. The thousands of hospitals and clinics that purchase implants try to bargain for deep discounts from manufacturers, but they have limited leverage since each buys a relatively small quantity from any one company.
In addition, device makers typically require doctors' groups and hospitals to sign nondisclosure agreements about prices, which means institutions do not know what their competitors are paying. This secrecy erodes bargaining power and has allowed a small industry of profit-taking middlemen to flourish: joint implant purchasing consultants, implant billing companies, joint brokers. There are as many as 13 layers of vendors between the physician and the patient for a hip replacement, according to Kate Willhite, a former executive director of the Manitowoc Surgery Center in Wisconsin.
Hospitals and orthopedic clinics typically pay $4,500 to $7,500 for an artificial hip, according to MD Buyline andOrthopedic Network News, which track device pricing. But those numbers balloon with the cost of installation equipment and all the intermediaries' fees, including an often hefty hospital markup.
That is why the hip implant for Joe Catugno, a patient at the Hospital for Joint Diseases in New York, accounted for nearly $37,000 of his approximately $100,000 hospital bill; Cigna, his insurer, paid close to $70,000 of the charges. At Mills-Peninsula Health Services in San Mateo, Calif., Susan Foley's artificial knee, which costs about the same as a hip joint, was billed at $26,000 in a total hospital tally of $112,317. The components of Sonja Nelson's hip at Sacred Heart Hospital in Pensacola, Fla., accounted for $30,581 of her $50,935 hospital bill. Insurers negotiate discounts on those charges, and patients have limited responsibility for the differences.
The basic design of artificial joints has not changed for decades. But increased volume — about one million knee and hip replacements are performed in the United States annually — and competition have not lowered prices, as would typically happen with products like clothes or cars. "There are a bunch of implants that are reasonably similar," said James C. Robinson, a health economist at the University of California, Berkeley. "That should be great for the consumer, but it isn't."
The American health care market is plagued by such "sticky pricing," in which prices of products remain high or even increase over time instead of dropping. The list price of a total hip implant increased nearly 300 percent from 1998 to 2011, according to Orthopedic Network News, a newsletter about the industry. That is a result, economists say, of how American medicine generally sets charges: without government regulation or genuine marketplace competition.
"Manufacturers will tell you it's R&D and liability that makes implants so expensive and that they have the only one like it," said Dr. Rory Wright, an orthopedist at the Orthopedic Hospital of Wisconsin, a top specialty clinic. "They price this way because they can."
Zimmer Holdings declined to comment on pricing. But Sheryl Conley, a longtime Zimmer manager who is now the chief executive of OrthoWorx, a local trade group in Warsaw, said that high prices reflected the increasing complexity of the joint implant business, including more advanced materials, new regulatory requirements and the logistics of providing a now huge array of devices. "When I started, there weren't even left and right knee components," she said. "It was one size fits all."
Mr. Shopenn's Zimmer hip has transformed his life, as did the replacement joint for Mr. Catugno, a TV director; Ms. Foley, a lawyer; and Ms. Nelson, a software development executive. Mr. Shopenn, an exuberant man who maintains a busy work schedule, recently hosted his son's wedding and spent 26 days last winter teaching snowboarding to disabled people.
His joint implant and surgery in Belgium were priced according to a different logic. Like many other countries, Belgium oversees major medical purchases, approving dozens of different types of implants from a selection of manufacturers, and determining the allowed wholesale price for each of them, for example. That price, which is published, currently averages about $3,000, depending on the model, and can be marked up by about $180 per implant. (The Belgian hospital paid about $4,000 for Mr. Shopenn's high-end Zimmer implant at a time when American hospitals were paying an average of over $8,000 for the same model.)
"The manufacturers do not have the right to sell an implant at a higher rate," said Philip Boussauw, director of human resources and administration at St. Rembert's, the hospital where Mr. Shopenn had his surgery. Nonetheless, he said, there was "a lot of competition" among American joint manufacturers to work with Belgian hospitals. "I'm sure they are making money," he added.
Dr. Cram, the Iowa health cost expert, points out that joint manufacturers are businesses, operating within the constraints of varying laws and markets.
"Imagine you're the C.E.O. of Zimmer," he said. "Why charge $1,000 for the implant in the U.S. when you can charge $14,000? How would you answer to your shareholders?" Expecting device makers "to do otherwise is like asking, 'Couldn't Apple just charge $50 for an iPhone?' because that's what it costs to make them."
But do Americans want medical devices priced like smartphones? "That," Dr. Cram said, "is a different question."
A Miracle for Many
When joint replacement surgery first became widely used in the 1970s, it was reserved for older patients with crippling pain from arthritis, to offer relief and restore some mobility. But as technology and techniques improved, its use broadened to include younger, less debilitated patients who wanted to maintain an active lifestyle, including vigorous sports or exercise.
In the first few decades, implants were typically cemented into place. But since the 1980s, many surgeons have used implants made of more sophisticated materials that allow the patient's own bone to grow in to hold the device in place. For most patients, implants have proved miraculous in improving quality of life, which is why socialized medical systems tend to cover them. Per capita, more hip replacements are done in Britain, Sweden and the Netherlands, for example, than in the United States.
Motivated in part by science and in part by the need to create new markets, joint makers churn out new designs that are patented, priced higher and introduced with free training courses for surgeons. Some use more durable materials so that a patient requiring a hip implant at age 40 or 50 might rely on it longer than the standard 20 years, while other models are streamlined and require smaller incisions.
Zimmer got a big sales bump a few years ago when it began promoting its new "female knee," a slightly slimmer version of its standard design, in an advertising campaign directed at patients. Hospitals on average pay about $800 more to buy the gender-specific knee implants, according to MD Buyline.
Many doctors say that for most patients, older, standard implants with a successful track record are appropriate. Expensive modifications make no difference for the typical patient, but they drive up prices for all models and have sometimes proved to be deeply flawed, they say.
In the last few years, joint manufacturers have faced lawsuits and have settled claims with patients after new, all-metal implants, which were meant to be more durable than the standard version, had unusually high failure rates. As for those "female knees," a studyfeatured at the meeting of the American College of Orthopedic Surgeons this year concluded, "While we certainly use the female components frequently in surgery, we don't detect any objective improvement in clinical outcomes."
That is why Dr. Scott S. Kelley, an orthopedist affiliated with Duke University Medical Center, generally tries to dissuade patients who request "new, improved" joints. "I tell them: 'That's taking a big risk for the potential of a few percentage points of improvement. You wouldn't invest your retirement account this way.' "
A Town's Lifeblood
The power and profits of the medical device industry are on display here in Warsaw, which has trademarked itself the Orthopedic Capital of the World. Four of the big five joint manufacturers in the world are based in the United States; the other is in Britain. Three of these giants — Zimmer, Biomet and DePuy, a division of Johnson & Johnson — have their headquarters here, a town of 14,000.
An industry that began as a splint-making shop in 1895 has made Warsaw the center of a global multibillion-dollar business. The companies based here produce about 60 percent of the hip and knee devices used in the United States and one-third of the world's orthopedic sales volume, local officials said. Nearly half the jobs in Kosciusko County, where Warsaw is, are tied to the industry. Residents joke that a mixed marriage is when one spouse works for Zimmer and the other for DePuy.
The industry's benefits are evident. The county has the lowest unemployment rate in Northern Indiana, and the median family income of $50,000 puts it significantly above the state average. The town boasts lush golf courses and streets lined with spacious homes. The lobby of the elegant City Hall, which is in a restored 1912 bank, features plaques about device manufacturers.
"We eat, sleep and breathe orthopedics," said Ms. Conley of OrthoWorx, which she said was set up to "plan for the future of the orthopedic industry here." OrthoWorx's board of directors includes executives from Biomet and DePuy.
With a high-tech industry as its lifeblood, Ms. Conley said, Warsaw needed to attract engineers and doctors from afar and train local youths for "the business." It has upgraded the public schools and helped create programs at local colleges in orthopedic regulation and advanced machinist techniques.
Officials at OrthoWorx say the device makers do not discuss "competitive issues" among themselves, including the prices of implants, even as employees stand together watching their children play baseball. Still, it is in everyone's interest not to undercut the competition. In 2011, all three manufacturers had joint implant sales exceeding $1 billion and spent about only 5 percent of revenues on research and development, compared with 20 percent in the pharmaceutical industry, said Stan Mendenhall, the editor of Orthopedic Network News. They each paid their chief executives over $8 million.
"It's amazing to think there is $5 billion to $6 billion going through this little place in Northern Indiana," said Mr. Mendenhall, adding that the recession has meant only single-digit annual revenue growth rather than the double-digit growth of the past.
Device makers have used some of their profits to lobby Congress and to buy brand loyalty. In 2007, joint makers paid $311 million to settle Justice Department accusations that they were paying kickbacks to surgeons who used their devices; Zimmer paid the biggest fine, $169.5 million. That year, nearly 1,000 orthopedists in the United States received a total of about $200 million in payments from joint manufacturers for consulting, royalties and other activities, according to data released as part of the settlement.
Despite that penalty, payments continued, according to a paper published in The Archives of Internal Medicine in 2011. While some of the orthopedists are doing research for the companies, the roles of others is unclear, said Dr. Cram, one of the study's authors.
Although only a tiny percentage of orthopedists receive payments directly from manufacturers, the web of connections is nonetheless tangled.
Companies "build a personal relationship with the doctor," said Professor Robinson, the Berkeley economist. "The companies hire sales reps who are good at engineering and good at golf. They bring suitcases into the operating room," advising which tools might work best among the hundreds they carry, he said. And some studies have shown that operations attended by a company representative are more likely to use more and costlier medical equipment. While some hospitals have banned manufacturers' representatives from the operating room, or have at least blocked salesmanship there, most have not.
No Gift Shop
There are, of course, a number of factors that explain why Mr. Shopenn's surgery in Belgium would cost many times more in the United States. In America, fees for hospitals, scans, physical therapy and surgeons are generally far higher. And in Belgium, even private hospitals are more spartan.
When Mr. Shopenn arrived at the hospital, he was taken aback by the contrast with NewYork-Presbyterian Hospital, where his father had been a patient a year before. The New York facility had "comfortable waiting rooms, an elegant lobby and newsstands," Mr. Shopenn remembered.
But in Belgium, he said, "I was immediately scared because at first I thought, this is really old. The chairs in the waiting rooms were metal, the walls were painted a pale green, there was no gift shop. But then I realized everything was new. It was just functional. There wasn't much of a nod to comfort because they were there to provide health care."
The pricing system in Belgium does not encourage amenities, though the country has among the lowest surgical infection rates in the world — lower than in the United States — and is known for good doctors. While most Belgian physicians and hospitals are in business for themselves, the government sets pricing and limits profits. Hospitals get a fixed daily rate and surgeons receive a fee for each surgery, which are negotiated each year between national medical groups and the state.
While doctors may charge more than the rate, few do so because most patients would refuse to pay it, said Mr. Boussauw, the hospital administrator. Doctors and hospitals must provide estimates. European orthopedists tend to make about half the income of their American counterparts, whose annual income averaged $442,450 in 2011, according to a survey by the Commonwealth Fund, a foundation that studies health policy.
Belgium pays for health care through a mandatory national insurance plan, which requires contributions from employers and workers and pays for 80 percent of each treatment. Except for the poor, patients are generally responsible for the remaining 20 percent of charges, and many get private insurance to cover that portion.
Mr. Shopenn's surgery, which was uneventful, took place on a Tuesday. On Friday he was transferred for a week to the hospital's rehabilitation unit, where he was taught exercises to perform once he got home.
Twelve days after his arrival, he paid the hospital's standard price for hip replacements for foreign patients. Six weeks later he saw an orthopedist in Seattle, where he was living at the time, to remove stitches and take a postoperative X-ray. "He said there was no need for further visits, that the hip looked great, to go out and enjoy myself," Mr. Shopenn said.
With baby boomers determined to continue skiing, biking and running into their 60s and beyond, economists predict a surge in joint replacement surgeries, and more procedures for younger patients. The number of hip and knee replacements is expected to roughly double between 2010 and 2020, according to Exponent, a scientific consulting firm, and perhaps quadruple by 2030. If insurers paid $36,000 for each surgery, a fairly typical price in the commercial sector, the total cost would be $144 billion, about a sixth of the nation's military budget last year.
So far, attempts to bring down the price of medical devices have been undercut by the industry.
When Dr. Daniel S. Elliott of the Mayo Clinic decided to continue using an older, cheaper valve to cure incontinence because studies showed that it was just as good as a newer, more expensive model, the manufacturer raised its price.
"If there was a generic, I'd be there tomorrow," he said.
With artificial joints, cost-trimming efforts have been similarly ineffective. Medicare does not negotiate directly with manufacturers, but offers all-inclusive payments for surgery to hospitals to prompt them to bargain harder for better implant prices. Instead, hospitals complain that acquiring the implant consumes 50 percent to 70 percent of Medicare's reimbursement, which now averages $12,099, up 25 percent from $9,645 in 1993. Meanwhile, surgeons' fees have dropped by nearly half.
With the federal government unwilling to intervene directly, some doctors and insurance plans are themselves trying to reduce the costs by mandating preset prices or forcing more competition and transparency.
After concluding that hip replacements billed at $100,000 yielded no better results than less expensive ones, the California Public Employees' Retirement System, or Calpers, told members that it would pay hospitals $30,000 for a hip or knee replacement, and dozens of hospitals have met that number.
Dr. Wright's orthopedic hospital near Milwaukee has driven down payments for joints by more than 30 percent by resolving to use only two types of hip implants and requiring blind bids directly from the manufacturers; part of the savings is passed on to patients.
The Affordable Care Act tries to recoup some of the medical device manufacturers' profits by imposing a 2.3 percent tax on their revenues, effective this year. But Brad Bishop, the executive director of OrthoWorx and a former Zimmer executive, said that the approach would harm an innovative American industry, and that the cost would ultimately be borne by joint replacement patients "whose average age is 67." He argued that the best way to reduce the cost of joint replacement surgery was to rescind the tax and decrease government interference.
The medical device industry spent nearly $30 million last year on lobbying, according to the Center for Responsive Politics. The Senate moved to repeal the tax, and the House is expected to take it up this fall. The bill's supporters included both senators from Indiana.
Mr. Shopenn's new hip worked so well that a few months after returning from Belgium he needed a hernia operation — a result of too much working out at the gym. He was home by 4 p.m. the day of the outpatient surgery, but the bill came to $16,500. Though his insurance company covered the procedure, he called the hospital's finance department for an explanation.
He remembers in particular a "surreal" discussion with a "very nice" administrator about a $750 bill for a surgical drain, which he called "a piece of plastic in a sealed bag."
"It was mind-boggling to me that the surgery could possibly cost this much," he said, "after what I'd just done in Belgium."
Friday, August 2, 2013
The other residents and I sat in our blue scrubs with our attending physician in the windowless family meeting room just outside the intensive care unit. We had gathered around one end of the ovoid table with the family of the patient, two daughters and a son, at the other.
The patient was an elderly woman, admitted to our unit just a few hours before, with a breathing machine keeping her alive. We proceeded with the meeting as we were trained to do. We kept our elbows off the table, maintained eye contact (but not too much eye contact) and gave the family an update of where we stood.
A healthy family meeting, we'd been told, involved us speaking for about half the time, with the family speaking for the rest – venting, questioning, grieving and hoping, in no particular order. This meeting, though, was dominated by long periods of silence that unearthed the dull, low-pitched drone in the background.
The son, quiet for most of the meeting, broke the silence and, with a hint of anger and a big dollop of frustration, asked the one question I had dreaded being asked the most: "Doc, give it to me straight. If this were your mother, what would you do?"
While the patient-doctor interaction varies widely across cultures and continents, this question seems to be a universal constant. As a medical student in Pakistan, I had heard it often, and even after hours of preparation, never felt prepared to answer. As a wobbly newcomer to clinical medicine, it left me feeling vulnerable and violated.
From a patient or family member's perspective, though, this question helps them make sense of the confusion, desolation and powerlessness that so often defines the hospital experience, which usually involves a full-on assault of numbers, jargon and 'expert' opinion. They are confronted with difficult choices, like whether they want to go ahead with a particular high-risk procedure or wait for the tincture of time to kick in.
Overwhelmed and confused, it makes sense they would defer the choice to someone who appears to know what they are doing. And by invoking the physician's parent, they hope to humanize the physician and have a conversation with real stakes.
Yet I still find this question hard to answer. See, my mother is the sort of person who spends two hours each day on the treadmill, even during vacations, so that she can eat to her heart's content. Often described as a "fighter," any additional moment she could spend with her children or future grandchildren would be worth the extra mile. My father, on the other hand, is someone who avoids getting his blood sugar level tested to evade medications, dreaming of spending his last days in the quiet serenity of the village he grew up in. Thus my answer to the question would be very different, as it would be for anyone, depending on which parent you asked me about.
So I have come to believe that the right answer to the question, "If this were your mother, doctor…" is: "Tell me more about your mother."
This response gives patients' families the chance to think about their loved ones, about what they would value and what they would consider a good life, what they would think was worth fighting for if they were available to answer the question for themselves.
The burden that family members feel when making medical decisions as proxies, whether a loved one has dementia or is so sick or confused they can't participate meaningfully in decision making, is immense. But this response often helps to diffuse that. It takes them away from a place where they feel solely responsible for the trajectory of their relative's life to one where they simply communicate what the patient would want out of their life. We as physicians can then weigh in on whether it is reasonable to expect that to happen.
So I asked the family who was sitting across the table from me, "Tell me more about your mother."
And then, slowly, the family started sharing stories of the woman we had met only met a few hours before, unconscious and intubated. She loved being independent, would hate for people to open doors for her or hold her hand as she tried to get up, they told us. She loved the sun, the beach. She loved walking, loved being out and about. She would never, ever want to go to a nursing home. Never ever. They pulled out a picture of her lounging on a chair, sipping lemonade.
We then told them that based on a combination of her vital signs and lab values, as well as our clinical judgment, that while we could hope for some progress, it would likely not be enough to allow her any real shot at experiencing life outside a nursing facility again.
The daughters shared another glance with their brother. Their shoulders were now less tense, their eyes less teary. The room seemed to be filled with memories of a woman who had lived life well. They turned to us and asked us to make her comfortable, and to turn off the breathing machine.
Haider Javed Warraich is a resident in internal medicine and Katherine Swan Ginsburg Fellow in Humanism at the Beth Israel Deaconess Medical Center in Boston and author of the novel "Auras of the Jinn."
Tuesday, July 30, 2013
The report, based on public consultations at six "town halls" in cities across the country last winter and spring, said factors such as poor housing, lack of access to healthy food and early childhood programs all affect health.
"We heard that the biggest barrier to good health is poverty," says CMA president Dr. Anna Reid, a Yellowknife emergency room physician who says federal, provincial and territorial governments must give top priority to developing an action plan to eliminate poverty.
"It really hit me in a visceral way when we did those town halls," said Reid.
Malnourished people become ill. People who can only afford junk food or don't have access to healthy food because there isn't a supermarket nearby can develop diabetes. People who live in mouldy, substandard housing can get asthma medications, but it won't make the asthma go away. Social isolation has mental health consequences, including increased suicide rates.
"The cost of inaction is higher than acting," said Reid at a press conference Tuesday to launch the report.
About half of all health-care outcomes are linked to "social determinants" such as income, housing, education, disability, gender and race. In comparison, a quarter of health outcomes can be attributed to the health care system, which includes access to health care and wait times. Only 15 per cent of outcomes are linked to biology and genetics and 10 per cent to the environmental factors such as air quality.
Canadians want sincere, legitimate and reaction action, said Reid, who is making tackling poverty the focus of her mandate as CMA president.
"This report does not point fingers," she said. "Canada is a prosperous country and can do better."
Among the report's 12 recommendations was evaluating a guaranteed annual income approach to alleviating poverty through a major pilot project funded by the federal government.
Another recommendation was a national food security program to ensure access to safe and nutritious food to all Canadians, no matter where they live or how much they earn.
The report also drew attention to the issue of child poverty. The Conference Board of Canada gave Canada a rank of "C" when it comes to child poverty and placed it 15th out of 17 peer countries. Only Italy and the U.S. have a lower ranking.
About one in seven Canadian children live in poverty and the rate has been on the increase since the mid-90s. It's not an issue that can be ignored because poverty hinders the ability to sustain economic growth, the OECD has warned.
"If we could eliminate child poverty, we could go a long way to improving health," says Reid.
Fred Phelps, executive director of the Canadian Association of Social Workers, said addressing the social determinants of health will tackle health care costs. It will take measures like a long-term commitment to affordable housing, he said.
"The roadmap exists," he said. "It's the political will that's lacking.
Jeff Morrison, president of Ottawa's Centretown Community Health Centre, says the centre offers services that address inequalities, including showers for people who live in inadequate housing, phone and email for those who don't have their own access and a door-to-door bus service for seniors and disabled people who have trouble going to a supermarket.
Still, with intensification, housing costs have increased and the population base served by the centre is growing. The health centre's biggest challenge is acquiring space to offer services, said Morrison.
Drawing attention to the role poverty plays in health outcomes is part of the role of the CMA, said Reid. About one in five health-care dollars is spent addressing problems related to poverty, according to the Public Health Agency of Canada.
Doctors can help address poverty by being aware of the effect poverty has on their patients' health, she said. The CMA is developing a tool kit that helps physicians take medical histories that take this into account. They can also get involved in a leadership role.
"We represent over 78,000 physicians. We actually have a fair amount of political leverage," said Reid.
"It behooves us to start looking at these things."
other asks, "Will this go on forever?" She means pain, dread. "No." She says, "But we'll go on forever. You & me." Yes.
These are the words of a son saying goodbye to his mother in the 21st century.
Mother called: "I can't talk. I'm surrounded by handsome men." Emergency surgery. If you can hold a thought for her now...
For Scott Simon's 1.2 million Twitter followers, the end of his mother's story began with that wisecrack sometime around July 16.
Mother cries Help Me at 2;30. Been holding her like a baby since. She's asleep now. All I can do is hold on to her.
Most Americans know Simon by his voice: worn but fun, brightening up NPR's "Weekend Edition Saturday." But on this weekend he was telling his story in 140-character installments on a medium more commonly used for ephemera than for navigating the suffering of an aging parent.
I love holding my mother's hand. Haven't held it like this since I was 9. Why did I stop? I thought it unmanly? What crap.
For several days, in a hospital somewhere in Chicago, the end-of-life struggles of Patricia Lyons Simon Newman Gilband, 84, have been watched the world over. Many readers have been moved to tears, while others have had to look away, taken aback by the intimate view Scott has shared of his mother's suffering, all the way to her last breath.
I don't know how we'll get through these next few days. And, I don't want them to end.
The fact that Simon's tweets have gone viral say as much about life and technology in the 21st century as they do about his ability to transform his mother's pain into poetry.
Death wasn't always considered such a private matter. Before the 20th century, death in the United States "used to be very public," said Deborah Carr, a professor of sociology at Rutgers University who studies death, dying and bereavement. "People weren't so isolated in the hospital; funerals were at home."
Western societies, as the historian Philippe Aries argued in 1974, began to praise quiet mourning to limit the "unbearable emotion caused by the ugliness of dying and by the very presence of death in the midst of a happy life."
"Death, so omnipresent in the past that it was familiar, would be effaced, would disappear," Aries said. "It would become shameful and forbidden."
Yet a different narrative has begun to take hold in the 21st century as death has collided with the age of reality TV, social media and publishing houses hungry for confessionals.
In 2009, British reality TV star Jade Goody's death from cervical cancer became a tabloid sensation with the aid of Goody's publicist. After pastor Rick Warren's son committed suicide in April, he memorably shared his grief over social media.
The ongoing transition hasn't arrived without friction. When the writer Susan Sontag died in 2004, her partner, the photographer Annie Leibovitz, documented the process, creating photographs that Sontag's son later criticized as "carnival images of celebrity death."
Likewise, Simon's tweets about his mother have proven too powerful for some Twitter users who were also confronting loss.
"Too soon for me to read the @nprscottsimon tweets," one user tweeted. "But I'll save for later, for when I'm ready."
My mother in ICU sees Kate & Will holding baby and tears: "Every baby boy is a little king to his parents. " So I tear too.
"We usually only get to see moments like this in fiction, right?" Peter Sagal, the host of NPR's "Wait Wait ... Don't Tell Me," said in a phone interview Monday.
Sagal knows both Simon and Gilband, and has been gripped by Simon's messages. When he tried to explain Simon's tweets to a friend, "it sounds awful, exploitative and weird — but when you look at the feed, it's not."
I just realized: she once had to let me go into the big wide world. Now I have to let her go the same way.
"It's amazing to be able to watch this transpire in real life, this extraordinary weekend he's spending with his mother," Sagal said.
"This is happening right now to people we don't know, who don't have a public radio show, who don't have 1.3 million Twitter followers. … The hospital above and around them are filled by stories like this, and it's amazingly humbling to be able to follow along with one of them."
In middle of nights like this, my knees shake as if there's an earthquake. I hold my mother's arm for strength--still.
Social media is playing its own role in reshaping the handling of death in American life, partially as a medium that functions as a gathering point for public mourners while giving grievers room to express themselves how they like.
Many followers praised Simon's openness for giving them the sense that they were not suffering alone. As one user put it, "comforting to know others are going through the same thing as my fam. May your mom pass peacefully, as I hope my father will."
The need for comfort is a powerful one among readers dealing with death. The publishing industry has enjoyed sales from a series of books about near-death experiences — with such titles as "90 Minutes in Heaven," "Heaven Is for Real" and "To Heaven and Back" — that have promised peeks at life on the other side of mortality. (One such bestseller, "Proof of Heaven" by Eben Alexander, recently fell under criticism after Esquire magazine published an expose questioning several details in Alexander's story.)
For Carr, the Rutgers sociologist, the shifts in technology and the 21st century publicity culture have come hand in hand with ongoing medical shifts that have given Americans longer lives and, in so doing, longer deaths.
"We have many more opportunities to visit the dying person," Carr said, giving family members and friends wider windows of opportunity for seeking closure, or just getting to know one another better. The increased popularity of hospice care has also driven up the number of deaths that happen in the home, closer to family.
"On average, there's much greater acceptance of death today," Carr said, "largely because more and more people have seen death."
As her son tweeted from her bedside, Patricia Lyons Simon Newman Gilband — a train-car name she managed to put together from several marriages — was not completely voiceless. As her health made its final decline Monday night, a 2008 interview she gave with Simon, in which she banters with her son about living in Chicago, had already begun recirculating.
"You've always been a lot of fun. No matter what age, we all got — we were compatible. We got along beautifully," Gilband told her son in that interview.
I know end might be near as this is only day of my adulthood I've seen my mother and she hasn't asked, "Why that shirt?"
As their radio interview came to a close, Gilband told her son, "It's been a beautiful journey knowing you."
When she asked for my help last night, we locked eyes. She calmed down. A look of love that surpasses understanding.
"I love you, sweetheart," she told him in 2008. "And stop crying."
On Monday evening, a brief tweet.
Heart rate dropping. Heart dropping.
And then, finally, a son wrote these words:
The heavens over Chicago have opened and Patricia Lyons Simon Newman has stepped onstage.
She will make the face of heaven shine so fine that all the world will be in love with night.
Physicians are increasingly prescribing expensive scans, narcotic painkillers and other treatments that don't help in most cases, and can make things a lot worse. Since 1 in 10 of all primary care visits are for low back pain, this is no small matter.
What does help? Some ibuprofen or other over-the-counter painkiller, and maybe some physical therapy. That's the evidence-based protocol. With that regimen, most people's back pain goes away within three months.
But when researchers at Beth Israel Deaconess Medical Center in Boston looked at records of 23,918 doctor visits for simple back pain between 1999 and 2010, they found that doctors have actually been getting worse at prescribing scientifically based treatments.
Doctors were recommending NSAID pain relievers and acetaminophen less often. Instead, they were increasingly prescribing prescription opioids like OxyContin, with use rising from 19 percent of cases to 29 percent. Over-the-counter painkiller use declined from 37 percent to 25 percent. Other studies have found that opioids help only slightly with acute back pain and are worthless for treating chronic back pain.
"That's a big public health issue," says Dr. John Mafi, chief medical resident and a fellow at Beth Israel Deaconess. Mafi was the lead author of the study, which was published online inJAMA Internal Medicine. In the 1990s doctors were criticized for ignoring patients' pain, Mafi says. Some of that criticism was valid, but doctors have overreacted. "What magic bullet better than a very powerful pain medication?"
About 43 percent of patients taking opioids for chronic back pain also had other substance abuse disorders, the researchers found. In 2008, almost 15,000 people died from overdoses of prescription opioids, and abuse has surged among women. Opioids may be necessary in some cases, Mafi says, but "they're certainly not first-line."
Doctors were also quick to whip out the prescription pad and call for CT and MRI scans for people with lower back pain, the study found. The number of people getting scans rose from 7 to 11 percent. Though those scans won't hurt the patient, in most cases they don't find anything wrong. And they are expensive, costing $1,000 or more.
Patients are partly to blame for the rush to scan, Mafi says. "Patients are expecting very comprehensive evaluations," he tells Shots. "There's a sentiment perhaps if my doctor ordered an MRI for my back pain they really listened to me. It's almost validating."
And in an era when doctors are rated online by patients, "doctors have an incentive to make patients happy," Mafi says.
Financial incentives for doctors may also be a factor. This study didn't examine why doctors aren't following clinical guidelines for treating back pain, but other studies have found that when doctors own imaging equipment, they are more likely to use it.
Doctors should be cut a little slack, a journal commentary accompanying this study says, because guidelines have been conflicted on back pain treatment until recently, and it takes 17 years, on average, for new treatment standards to be widely adopted. But creating checklist-type guidelines for doctors would help speed that process, the commentary says. So would requiring patients to pay more of the cost of expensive imaging, and providing payment incentives for doctors who do the right thing.
"For the majority of new-onset back pain [cases], it gets better within three months," Mafi says. "Unfortunately, we don't have fancy treatments that cure it." Time, some ibuprofen and gentle exercise aren't sexy. But they most often do the trick.
Monday, July 29, 2013
Sunday, July 28, 2013
LAST week U.S. News and World Report released its annual list of "Best Hospitals." Web sites are being updated to celebrate victories. (Johns Hopkins ranks No. 1!) Magazines will be plump with advertising. (NewYork-Presbyterian is first in New York and tied for seventh nationally!) And, because I am a reporter covering health care, my in-box is accumulating e-mails from the "Honor Roll" of the Top 18 hospitals.
But what does this annual exercise mean for patients? And what does it say about American health care?
After all, Harvard and Princeton, which tied for No. 1 in the magazine's 2013 Top 10 national universities list, didn't take out ads to proclaim their triumph; they will fill their classrooms no matter. And as in the college ratings, there are no big surprises in the top hospital group: they are the big academic medical centers — the Mayo Clinic, Massachusetts General Hospital, the Cleveland Clinic. More to the point, even though you might well fly across the country for four years of schooling, you are far more likely to stay near your home for medical care. No one's flying to Mayo in Minnesota to get inhalers for asthma, even though it ranks No. 1 for pulmonary medicine.
But American hospitals are a bit like restaurants, competing for your business (and donations). As such they go all out to promote their brand, even though hospitals and doctors are not permitted to advertise in many other countries.
For American hospitals large and small, it clearly pays to advertise, particularly in these tough economic times and with the Affordable Care Act poised to throw tens of millions of newly insured patients into the market. But for patients the rankings and, especially, the subsequent promotions generally have limited benefit, experts say.
"Nearly every hospital has a banner out front saying they're a 'top hospital' for something in some rating system," said Dr. Nicholas Osborne, a Robert Wood Johnson Clinical Scholar at the University of Michigan. "Those ratings have become more important for hospital marketing than for actually helping patients find the best care."
What's more, Dr. Osborne compared the outcomes of two ranking programs — one by U.S. News and World Report and the other by Healthgrades — and found a "large discordance" in their results. "The two biggest rating systems come up with completely different lists," he said. "What does that tell you?"
If such advertising often adds little in the way of useful information, it certainly adds to health care costs. Hospitals with more than 400 beds spent an average of $2.18 million on advertising in 2010, surveys have found.
"We're pushing $3 trillion in health expenditures, and one-third of that is waste," said Dr. Eric Topol, chief academic officer at Scripps Health in California. "Those TV commercials saying 'I got mycancer care at X hospital' are a shame, definitely wasteful."
To be fair, U.S. News cautions that its national ratings reflect how hospitals perform in treating "technically challenging" cases and that the list is merely a starting point after which "patients have to do their own research."
But those caveats are lost in the subsequent barrage of advertising. And the magazine encourages hospitals to post its seal of approval. In return, the U.S. News Web site is bursting with hospital advertising.
Some critics decry the glut of hospital self-promotion as not just wasteful and costly, but also potentially dangerous.
"There are general fraud laws, but there is no law specific to hospital advertising, and there should be," said Robert Steinbuch, a professor of law at the University of Arkansas at Little Rock, who studies the topic. "I can't tell you how many hospitals say, 'We have state-of-the-art CAT scanners' — there is no such thing! It's an old technology."
IN a country where numerous organizations — including Yelp — accredit, rate and rank hospital care, some accolades may indicate excellence and some don't mean that much at all, he added. And while teams of academics and scores of for-profit companies are developing "quality" metrics to guide health care reform and to help patients shop for their care, it turns out that rating a hospital accurately is extremely complicated. For one thing, hospitals that take on sicker patients might have more complications after surgery.
Yet even smaller hospitals tend to advertise their profit-making departments, like cardiology, even though they may not offer the full range of heart services.
"If they advertise cardiac care and don't have angioplasty, that's essentially fraud," Mr. Steinbuch said, adding that if a patient dies, "that could be considered criminally negligent homicide."
But health care advertising is probably here to stay. "Hospital advertising sets up an arms war, so that hospitals feel they can't survive without aggressive marketing," said Dr. Topol of Scripps Health.
And even skeptics concede that health care ratings, when properly developed and employed, may help hospitals improve their performance and provide patients with valuable information.
If you have a rare lung condition that has flummoxed local doctors, for example, you may want to fly to Mayo since U.S. News has ranked it No. 1 in pulmonary medicine. And if a dozen hospitals in your area offer hip replacements, a search of regional rankings on the magazine's Web site will yield some useful statistics. But take all those hospital advertisements with a grain of salt.
Indeed, with thousands of good hospitals across the nation, the best selling point for routine medical care may simply be convenience: some studies show that patients prefer nearby hospitals with worse results over ones with better outcomes farther away.