Saturday, January 26, 2013

Victoria Azarenka’s Timeout Jeered Round the World - NYTimes.com

MELBOURNE, Australia — When the world's top-ranked female tennis player was examined on the court and then granted a medical timeout Thursday during her semifinal match at the Australian Open, the howling commenced immediately. Skeptical fans at Rod Laver Arena and those watching on television worldwide were convinced that the player, Victoria Azarenka of Belarus, was suffering from nothing more than an attack of nerves and perhaps faked an injury to collect herself after losing several crucial points.

After her 10-minute reprieve — six minutes of it off the court — Azarenka closed out a 6-1, 6-4 victory. A sport that in recent years has dealt with loudly grunting players and accusations of match fixing is now facing another vexation: determining what constitutes a real injury.

Azarenka's opponent, Sloane Stephens of the United States, called injury timeouts — legitimate or not — "the in thing," noting that Azarenka was one of many recent opponents to use a medical timeout. "It's trendy," Stephens said.

Others were more critical. "I thought it was a little unfair play," said David Nainkin, Stephens's coach. "I thought she bent the rules. I don't think she broke the rules, but she bent them, and I think those rules need to be looked at because I think there's a gray area there."

The TV analyst Patrick McEnroe called the timeout an "absolute travesty" in a post on his Twitter page. (McEnroe also heads the United States Tennis Association's player development program, which has supported Stephens.) "I mean, everybody's appalled by it," said Pam Shriver, an analyst and a former player.

The controversy arose when Azarenka, serving for the match against the 29th-seeded Stephens at 5-3 in the second set, failed to convert on five match points and was eventually broken. When she took her seat during the changeover, she wrapped a towel stuffed with ice around her neck and was examined by the primary health care provider for the women's tour, Victoria Simpson, and by a tournament doctor, Tim Wood. She then left the court for further treatment, leaving Stephens, in her first Grand Slam semifinal, waiting nearly 10 minutes for the next game.

Stephens, who had upset the tournament favorite, Serena Williams, in the quarterfinals, proceeded to lose her serve and the match. She did not blame Azarenka's timeout for her loss.

Azarenka did not mention an injury during her on-court interview after the match, but she did refer to a feeling of crisis at the 5-4 changeover. "I almost did the choke of the year," she said. "I just felt a little bit overwhelmed. I realized I'm one step away from the final, and nerves got into me, for sure." Azarenka added: "I love to play here and I just couldn't lose. That's why I was so upset."

Later, in a news conference, she said that she left the court for treatment of a rib injury and that she had not mentioned the injury in her on-court interview because she had misunderstood the question.

Shriver, who noted that Azarenka had also not mentioned the injury in an ESPN interview while coming off the court, was skeptical. "I think her response at the time was very honest and truthful, that she was stretching the rules," Shriver said. "That was my reaction coming off the interview, and so that's why I think all of us, many of us, jumped on it. Because we've seen the rule abused for years. I abused the rule when I played."

If Azarenka was not legitimately injured, was calling a medical timeout cheating? Playing at the edge of the rules? Good old win-at-any-cost strategy?

To Michael F. Bergeron, executive director of the National Youth Sports Health & Safety Institute, it is part of a disturbing trend extending to youth sports: emphasizing winning over sportsmanship and developing character.

"I'm not saying everyone does that, and I'd like to think there are still players who would never do it," Bergeron said. "It shows a lack of character, a lack of respect for her opponent and the game. You'd like to think sports would be developing those traits. But in the bigger picture, this emphasis on winning and losing over everything else is doing athletes a disservice. It's not making them better people. It's not making them better athletes."

Bergeron, a clinical and scientific consultant to the Women's Tennis Association, acknowledged that tennis was harder on athletes' bodies than ever before. But he suspected that Azarenka had used the timeout as a strategy to stop Stephens's momentum.

Other sports have had similar issues. In football, there have been debates over timeouts taken just before field goals. During a college game between Cincinnati and Duke this season, Cincinnati took a too-many-men-on-the-field penalty to negate a 53-yard field goal, leaving Duke Coach David Cutcliffe irate. And after an N.F.L. game last season in which the Giants appeared to fake injuries to slow the Rams' offense, Seahawks Coach Pete Carroll said the phenomenon was nothing new or alarming.

In tennis, though, the injury timeout is tricky because medical personnel have to treat all calls for treatment seriously, no matter when they happen. The Grand Slam rule book does include some restrictions: all medical timeouts must take place during a changeover or a set break except in the case of an "acute medical condition."

The Grand Slam supervisor Donna Kelso confirmed that Azarenka had been given two consecutive medical timeouts of three minutes each to be treated for two separate injuries: one to a rib and one to her left knee. Azarenka explained that she was having trouble breathing on court because of a rib problem that was causing her back to seize up.

"I had to unlock my rib, which was causing my back problem," she said. "The trainer said, 'We have to go off court to treat that.' I just didn't really want to take off my dress on the court."

Nainkin, Stephens's coach, said he had "never heard of two medical timeouts back to back."

"In all my years, that's a first," he said. "Two different injuries? I think it's unprofessional. Saying that, she did win the match and played a great game at 5-4, but tennis is a game of momentum and Sloane had the momentum, and obviously the little break definitely changed things."

Azarenka agreed that the timing of her timeout was unfortunate. "The timing, yeah, it was my bad," she said. "The game before that, when I lost my service game, it kept getting worse. I thought I would have to play through it and keep calm. But it just got worse. You know, I had to do it."

Several coaches and analysts expressed hope that the incident Thursday would lead to a re-examination of the medical timeout rule at Grand Slam events and on the WTA Tour. "I think if you can continue to play in any way, it's bad luck but you've got to wait until the person is finished serving," Shriver said.

But ultimately, the decision lies with the medical personnel on court. According to the Grand Slam rule book, if they determine that a player needs a medical timeout, their word is final.

http://www.nytimes.com/2013/01/25/sports/tennis/timeout-by-victoria-azarenka-in-match-with-sloane-stephens-at-australian-open-raises-questions.html?src=mv&ref=general&pagewanted=all&pagewanted=print

Successful and Schizophrenic - NYTimes.com

Successful and Schizophrenic

By ELYN R. SAKS
LOS ANGELES

THIRTY years ago, I was given a diagnosis of schizophrenia. My prognosis was "grave": I would never live independently, hold a job, find a loving partner, get married. My home would be a board-and-care facility, my days spent watching TV in a day room with other people debilitated by mental illness. I would work at menial jobs when my symptoms were quiet. Following my last psychiatric hospitalization at the age of 28, I was encouraged by a doctor to work as a cashier making change. If I could handle that, I was told, we would reassess my ability to hold a more demanding position, perhaps even something full-time.

Then I made a decision. I would write the narrative of my life. Today I am a chaired professor at the University of Southern California Gould School of Law. I have an adjunct appointment in the department of psychiatry at the medical school of the University of California, San Diego, and am on the faculty of the New Center for Psychoanalysis. The MacArthur Foundation gave me a genius grant.

Although I fought my diagnosis for many years, I came to accept that I have schizophrenia and will be in treatment the rest of my life. Indeed, excellent psychoanalytic treatment and medication have been critical to my success. What I refused to accept was my prognosis.

Conventional psychiatric thinking and its diagnostic categories say that people like me don't exist. Either I don't have schizophrenia (please tell that to the delusions crowding my mind), or I couldn't have accomplished what I have (please tell that to U.S.C.'s committee on faculty affairs). But I do, and I have. And I have undertaken research with colleagues at U.S.C. and U.C.L.A. to show that I am not alone. There are others with schizophrenia and such active symptoms as delusions and hallucinations who have significant academic and professional achievements.

Over the last few years, my colleagues, including Stephen Marder, Alison Hamilton and Amy Cohen, and I have gathered 20 research subjects with high-functioning schizophrenia in Los Angeles. They suffered from symptoms like mild delusions or hallucinatory behavior. Their average age was 40. Half were male, half female, and more than half were minorities. All had high school diplomas, and a majority either had or were working toward college or graduate degrees. They were graduate students, managers, technicians and professionals, including a doctor, lawyer, psychologist and chief executive of a nonprofit group.

At the same time, most were unmarried and childless, which is consistent with their diagnoses. (My colleagues and I intend to do another study on people with schizophrenia who are high-functioning in terms of their relationships. Marrying in my mid-40s — the best thing that ever happened to me — was against all odds, following almost 18 years of not dating.) More than three-quarters had been hospitalized between two and five times because of their illness, while three had never been admitted.

How had these people with schizophrenia managed to succeed in their studies and at such high-level jobs? We learned that, in addition to medication and therapy, all the participants had developed techniques to keep their schizophrenia at bay. For some, these techniques were cognitive. An educator with a master's degree said he had learned to face his hallucinations and ask, "What's the evidence for that? Or is it just a perception problem?" Another participant said, "I hear derogatory voices all the time. ... You just gotta blow them off."

Part of vigilance about symptoms was "identifying triggers" to "prevent a fuller blown experience of symptoms," said a participant who works as a coordinator at a nonprofit group. For instance, if being with people in close quarters for too long can set off symptoms, build in some alone time when you travel with friends.

Other techniques that our participants cited included controlling sensory inputs. For some, this meant keeping their living space simple (bare walls, no TV, only quiet music), while for others, it meant distracting music. "I'll listen to loud music if I don't want to hear things," said a participant who is a certified nurse's assistant. Still others mentioned exercise, a healthy diet, avoiding alcohol and getting enough sleep. A belief in God and prayer also played a role for some.

One of the most frequently mentioned techniques that helped our research participants manage their symptoms was work. "Work has been an important part of who I am," said an educator in our group. "When you become useful to an organization and feel respected in that organization, there's a certain value in belonging there." This person works on the weekends too because of "the distraction factor." In other words, by engaging in work, the crazy stuff often recedes to the sidelines.

Personally, I reach out to my doctors, friends and family whenever I start slipping, and I get great support from them. I eat comfort food (for me, cereal) and listen to quiet music. I minimize all stimulation. Usually these techniques, combined with more medication and therapy, will make the symptoms pass. But the work piece — using my mind — is my best defense. It keeps me focused, it keeps the demons at bay. My mind, I have come to say, is both my worst enemy and my best friend.

THAT is why it is so distressing when doctors tell their patients not to expect or pursue fulfilling careers. Far too often, the conventional psychiatric approach to mental illness is to see clusters of symptoms that characterize people. Accordingly, many psychiatrists hold the view that treating symptoms with medication is treating mental illness. But this fails to take into account individuals' strengths and capabilities, leading mental health professionals to underestimate what their patients can hope to achieve in the world.

It's not just schizophrenia: earlier this month, The Journal of Child Psychology and Psychiatry posted a study showing that a small group of people who were given diagnoses of autism, a developmental disorder, later stopped exhibiting symptoms. They seemed to have recovered — though after years of behavioral therapy and treatment. A recent New York Times Magazine article described a new company that hires high-functioning adults with autism, taking advantage of their unusual memory skills and attention to detail.

I don't want to sound like a Pollyanna about schizophrenia; mental illness imposes real limitations, and it's important not to romanticize it. We can't all be Nobel laureates like John Nash of the movie "A Beautiful Mind." But the seeds of creative thinking may sometimes be found in mental illness, and people underestimate the power of the human brain to adapt and to create.

An approach that looks for individual strengths, in addition to considering symptoms, could help dispel the pessimism surrounding mental illness. Finding "the wellness within the illness," as one person with schizophrenia said, should be a therapeutic goal. Doctors should urge their patients to develop relationships and engage in meaningful work. They should encourage patients to find their own repertory of techniques to manage their symptoms and aim for a quality of life as they define it. And they should provide patients with the resources — therapy, medication and support — to make these things happen.

"Every person has a unique gift or unique self to bring to the world," said one of our study's participants. She expressed the reality that those of us who have schizophrenia and other mental illnesses want what everyone wants: in the words of Sigmund Freud, to work and to love.

A law professor at the University of Southern California and the author of the memoir "The Center Cannot Hold: My Journey Through Madness."

http://www.nytimes.com/2013/01/27/opinion/sunday/schizophrenic-not-stupid.html?src=me&ref=general&pagewanted=print

Friday, January 25, 2013

The Drawn Out Process of the Medical Lawsuit - NYTimes.com

She was one of the most highly sought radiologists in her hospital, a doctor with the uncanny ability to divine the source of maladies from the shadows of black and white X-ray films.
But one afternoon my colleague revealed that she had been named in a lawsuit, accused of overlooking an irregularity on a scan several years earlier. The patient suing believed she had missed the first sign of a now rampant cancer.
While other radiologists tried to assure her that the "irregularity" was well within what might be considered normal, my colleague became consumed by the what-if's. What if she had lingered longer on the fateful film? What if she had doubled-checked her reading before signing off on the report?
She began staying late at the hospital to review, and re-review, her work. And she worried about her professional reputation, asking herself if colleagues were avoiding her and wondering if she would have trouble renewing her license or hospital privileges. At home she felt distracted, and her husband complained that she had become easy to anger.
After almost a year of worry, my colleague went to court and was cleared of the charges. But it was, at best, a Pyrrhic victory. "I lost year of my life," she told me. "That lawsuit completely consumed me."
She was not the first colleague to recount such an experience. And far from overstating the issue, doctors may in fact be underestimating the extent to which malpractice not only consumes their time but also undermines their ability to care for patients, according to a new study in Health Affairs.
For more than 150 years, the medical malpractice system has loomed over health care, and doctors, the vast majority of whom will face a lawsuit sometime in their professional lives, remain ever vocal in their criticism of the system. But with few malpractice claims resulting in payments and liability premiums holding steady or even declining, doctors have started to shift their focus from the financial aspects of malpractice to the untold hours spent focused on lawsuits instead of patient care.
Now researchers are putting numbers to those doctors' assertions. For the current study, they combed through the malpractice claims records of more than 40,000 doctors covered by a national liability insurer. They took note of the length of each claim, as well as any payments made, the severity of the injury and the specialty practiced by the physician being sued.
Most claims required almost two years from initiation of the lawsuit, and almost four years from the time of the event in question, to reach a resolution. Cases that resulted in payment or that involved more severe patient injuries almost always took longer.
The researchers then looked at the proportion of a doctor's career spent on an open claim. They discovered that on average, doctors spent more than four years of their career -- more time than they spent in medical school -- working through one or more lawsuits. Certain specialists were more vulnerable than others. Neurosurgeons, for example, averaged well over 10 years, or over a quarter of their professional life, embroiled in lawsuits.
"These findings help to show why doctors care so intensely about malpractice and what they might face over the course of a lifetime," said Seth A. Seabury, lead author and a senior economist at the RAND corporation in Santa Monica, Calif.
The results also underscore what plaintiffs must endure. Previous studies have shown that when medical errors occur, patients prefer to have physicians acknowledge the mistake quickly and apologize as soon as possible. Though less than 5 percent of all errors ever lead to a malpractice claim, lengthy claims drag out the process and, in certain cases, hold up what may be appropriate compensation.
Patients not directly involved can be affected as well. A legitimate malpractice lawsuit sometimes results in doctors or even entire institutions changing how they practice in order to prevent similar events from happening again. Lengthy legal wrangling can slow down these potentially important improvements.
While these findings are only an indirect measure of the extent to which malpractice claims can affect doctors' and patients' lives, the study makes clear the importance of considering time, as well as cost, when looking at malpractice reform.
"If we could get these cases resolved faster, we might be able to improve the efficiency of the system, lower costs and even improve quality of care for patients," Dr. Seabury said.
"Having these things drag on is a problem for doctors and patients."
http://well.blogs.nytimes.com/2013/01/24/the-drawn-out-process-of-the-medical-lawsuit/?pagewanted=print

Living With Cancer: The Good Patient Syndrome - NYTimes.com

I remember when being good seemed strategic.
After the technician took out a pad to draw an inscrutable diagram, I nodded and pretended to recognize a squiggle at the center of what looked like a snail. I discussed my oncologist's research projects, instead of complaining about pain. Generally I answered a nurse's opening query -- "So how are you?"-- with a cheery "Good! How are you?" Grumbles about waiting interminably for a scan in a freezing room never rolled off my tongue. When an interventional radiologist managed to remove two stents from my body, I didn't fault the surgeon who left them there to trigger a massive infection followed by an allergic response to antibiotics: I sent a thank you note to the radiologist.
What was wrong with me? Outside the medical sphere, I am prone to impatience, candor and bouts of argumentative fervor. Had feminine socialization kicked in? As a girl, I was trained to be courteous to people in positions of authority and to revere the saving knowledge of physicians. But men also exhibit symptoms of the good patient syndrome.
Indeed, Anatole Broyard preached its virtues in his book "Intoxicated by My Illness," although his version was less compliant, more ironic than mine. "If a patient expects a doctor to be interested in him, he ought to try to be interesting. When he shows nothing but a greediness for care, nothing but the coarser forms of anxiety, it's only natural for the doctor to feel an aversion." Following this logic, Broyard embarked upon an impersonation: "I never act sick. A puling person is not appealing." He therefore set out to charm his physicians -- to distinguish himself from boring, easily forgotten patients. I did this too, adding a pinch of obedience, a dash of gratitude, and a smidgen of eccentricity to the mix. One doesn't want to be just any old patient; patients are replaceable.
Since illness had never intoxicated me, why was I behaving like Broyard? The short answer is terror: these people could hurt me.
Were I to seem boring or easily forgotten, should I appear crabby or disagreeable, I might get neglected or, in my anxious imagination, harmed. Not consciously neglected or intentionally harmed, of course, because doctors and nurses have dedicated themselves to helping people whose sickness often makes them boring and disagreeable. But neglected or harmed nonetheless. Like most patients, I am keenly aware that the medical staff at most facilities are overloaded. It is easy to get left for hours unattended on a gurney or starved and freaked when surgeries are perpetually postponed or distressed and bruised when the bindings on limbs are roughly or hastily applied.
But of course adopting the role of model patient does not provide a solution. Much of the caretaking in hospitals remains out of the control of our personal physicians and nurses. And in any case, too much ingratiating docility can be dangerous to a patient's health.
If I had persisted in asking my surgeon about the fate of the stents that he had implanted in my body, he might have remembered to remove them. If I had not followed to the letter the dosage he prescribed of a heavy-duty antibiotic, especially as I began to get sick to my stomach and dizzy, I might not have had the full-body breakdown of an allergic reaction. Earlier still, if I had insisted on better bowel preps before my first abdominal surgery, or a postponement, maybe the stents and infection and the allergic reaction to antibiotics would never have happened.
Even before that, if I had challenged my general practitioner who diagnosed indigestion, maybe my cancer would have been found at an earlier stage. If my grandmother had wheels, she'd be an omnibus: that's a family joke.
So much for the magical thinking that good patients receive the best care. Being a submissive or dutiful patient doesn't always pay off. Who exactly was I being good for? Sometimes it's good to be bad.
Was I good for nothing? When I was at my most puling and unappealing and too sick to be good, with pain so overwhelming that I had to be taken to my oncologist's examining room in a wheelchair, she placed her hand on my knee and kept it there while explaining how she would take care of me. Though I could not look her in the eye, though I could not speak for groaning, I took her point. I had foisted the good patient role on myself. She had always seen through the pose to the mortally sick human being. Why else would I be here, I realized.
At that moment I resolved to renounce or rectify my goodness. I don't always succeed.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of "Memoir of a Debulked Woman," which explores her experience with ovarian cancer.
http://well.blogs.nytimes.com/2013/01/24/living-with-cancer-the-good-patient-syndrome/?pagewanted=print

Thursday, January 24, 2013

Pandemics books, authors, and tweets: The best stories about the worst diseases. - Slate Magazine

The germs have been busy. In the United States this year alone, we've lost people both to old enemies such as whooping cough and to relatively new spillovers from other animals, such ashantavirus and West Nile virus, which killed more than 240 Americans this year, a record. Diseases we've come to think of as utterly foreign, such as dengue fever, are spreading through the United States. Meanwhile, further afield but far too near, we've seen two separateEbola outbreaks; one of Marburg; alarming blips of Q fever; an unsettling and unsettled game of whack-a-mole in the Mideast with a new SARS-like coronavirus; and the news that because gonorrhea has now developed resistance to yet another antibiotic, we possess just one that still gives pause to this old intimate. If that drug stops working before we develop a better one, expect a steady drip of ugly cases.
More bad-bug news pops up almost weekly, and it stands to get worse for a while, maybe for decades. More bacterial strains will develop antibiotic resistance, and our continuing disruption of virus-rich and fungus-rich ecosystems worldwide will invite yet more pathogens to make us part of their life cycles. We will live increasingly in a world where you might die because a bat happened to sleep in a certain tree in Tanzania or a particular robin landed in your backyard.
Pandemic diseases hold an irresistible allure for both writers and readers, as they involve threats both universal and personal, deep scientific mysteries from cellular to ecosystem levels, and urgent scientific sleuthing with high stakes. If the subject sometimes lends itself to oversimplified and sensationalistic journalism, it has also inspired a bounty of writing that is riveting while being thoughtful, nuanced, and deeply informed. And this work comes in every form and length, from 140-character tweets to 600-page global tours.
Here I offer a guide to the best of this work. I've drawn from my own reading and from the suggestions of top infectious-disease writers (more on them shortly). We'll start long, with books, and end, as we should, with tweeted expirations of germ-inflected wisdom.
Best Books
We face an embarrassment of riches here, and if it's hard to know where to start, it's easy to name a fivesome that will immerse you in the drama of pandemics both past and future while giving a fine understanding of the science. 
Leading the way almost 20 years ago, and still absolutely trenchant today, is Laurie Garrett'sThe Coming Plague: Newly Emerging Diseases in a World Out of Balance, which vividly and judiciously reports the global forces creating a new infectious age. It remains essential reading, with astounding prescience.
Warm from the presses, meanwhile, comes David Quammen's Spillover: Animal Infections and the Next Human Pandemic—one of the year's best books of any kind. This rich, engrossing work entrances as much with its darting literary elegance and deep humanity as with its exquisitely measured, layered reveal of the global strands binding us to a world of beauty and death.
Equally riveting is Maryn McKenna's way-too-close-to-home SuperBug: The Fatal Menace of MRSA. This bacterium (methicillin-resistant Staphylococcus aureus) is everywhere these days, including, perhaps, on your keyboard and almost certainly on your nose. As McKenna makes vivid, its spread and its increasing resistance to antibiotics can turn a routine cut or hospital visit into a deadly saga.
Finally, there are the classics Microbe Hunters, Paul de Kruif's 1934 account of how the bug-hunters got started, and John Barry's The Great Influenza: The Story of the Deadliest Pandemic in History, which makes scary reading anytime near flu season.
Longreads
"The First Alert," from Maryn McKenna's SuperBug, tells of a 13-year-old boy's battle with MRSA. "Where Will the Next Pandemic Come From? And How Can We Stop It?," in Popular Science, opens the puzzle box that David Quammen explores at more length in Spillover. In "The Hunt for the Origin of AIDS," in the Atlantic, Jon Cohen sifts through AIDS-origin theories both well-founded and weird.
"The Flu Hunters," a classic piece by Gretchen Reynolds in the New York Times Magazine, follows the hunt, far from over, to figure out how to prevent future flu pandemics on the scale of the one that killed 20 million to 50 million people in 1918. "Undead: The Rabies Virus Remains a Medical Mystery," in Wired, an excerpt from the new book by Monica Murphy and Bill WasikRabid, shows how bizarre this old affliction is; some of the comments are as unsettling as the story. Bruce Barcott's "Death at Yosemite," in Outside, shows how zoonotic diseases such as the much more obscure hantavirus can pop up, suddenly and fatally, even in the most sublime settings.
Finally, "The Rise of Drug-Resistant Gonorrhea," by Jerome Groopman at The New Yorker, has some unsettling news about the human pharynx. And his colleague Michael Specter, in "A Deadly Misdiagnosis," shows how misguided attempts to fight tuberculosis—possibly the disease that most threatens us—may actually strengthen its hand. Don't read this while you have a cough.
Breaking News and Analysis
Health and science sections of the New York TimesNational Public Radio, and Reuters, as well as Science and Nature's news departments, all cover infectious disease pretty well. If you read those, you'll catch most of the big news, though it requires sieving out from other stories. (TheGuardian's infectious-disease news tag does the sieving for you.)
To build your own filters, you can perform specific author/subject-tag searches at those and other publications, then bookmark the self-updating results. I've included such searches in the following links for the New York TimesDenise GradyNature's Declan Butler and Brendan Maher; NBC's Maggie FoxScience's Jon Cohen and Martin Enserink; and the Canadian Press'Helen Branswell. All of these journalists do top-flight work. Branswell's reporting, alas, goes criminally overlooked in the United States (except by other health journalists). She focuses with particular intensity on swine, bird, and seasonal flu, navigating their changes, overlaps, and frightening uncertainties with particular grace and foresight; she is my go-to for flu.
Those folks will get you the main goods. Meanwhile, as with many deep but narrow topics in today's media environment, the infectious-disease beat benefits greatly from a handful of blogs, including some written by journalists, that track back stories, side stories, and follow-ups with a detail and steadiness that mainstream media doesn't allow. Two favorite blogs among bad-bug journalists are Humanosphere Health blog, kept by Tom Paulson, and the GuardianHealth Blog, written by health editor Sarah Boseley.
Finally, freelance journalist and blogger Maryn McKenna is unmatched in reporting and contextualizing infectious-disease news with stories that'll scare the antibodies out of you. (She also possesses a disturbingly cool radio voice.) The easiest way to follow McKenna is at her blog,Superbug. (Disclosure: She and I both blog for Wired.) She repeatedly sees the big in the big stories, from new coronaviruses to the CIA's lethally destructive fake-polio-vaccine boondogglein Pakistan, before almost anyone else does. For a sample, see her Slate piece on dengue fever
Global Disease in 140
Finally, if you've dumped your RSS reader and newspaper home pages for Twitter, you're in luck, for many of the writers named above use Twitter to link to, curate, and discuss both their own and others' breaking coverage. Particularly sharp are Helen BranswellMaryn McKenna,Laurie GarrettMaggie FoxDavid QuammenDeclan ButlerBrendan MaherJon Cohen, andMartin Enserink; and last but not least, Michael Coston, who blogs at Avian Flu Diary and tweets, indefatigably, as Fla_Medic.
http://www.slate.com/articles/health_and_science/pandemics/2012/12/pandemics_books_authors_and_tweets_the_best_stories_about_the_worst_diseases.single.html

Wednesday, January 23, 2013

The dorm from hell - Penn Gazette

As I emerged from yet another restless night, I made a vow to myself. If I didn't get some real sleep soon, I was going to kill someone. Then I turned over on my narrow hospital bed and was startled to see a woman I knew as Jeanstanding over me, smiling benevolently.

I looked back at her, wondering what she could possibly want so early in the morning. A nurse came in and shooed her out. It dawned on me that Jean didn't work at the nursing home. I later learned she was a fellow patient who happened to be a former nurse, and sometimes reverted to caregiver mode.

Ironically, many residents at this Bucks County nursing, convalescent, and rehab facility thought I was a staff member, because, at age 46, I was mobile and relatively young compared to the rest of the population. Some employees assumed I was a visitor, a misconception that served me well the night I escaped.

It wasn't my proudest moment, but my frustration with the place had peaked early. What would I do if I had to live there the rest of my life, returned to a state of dependency and set adrift in a new social order of octogenarians and their overlords?

It all started with what neurologists call a "thunderclap headache."

I had always been a fairly headache-y person. Stress, hunger, and changes in weather all brought various levels of discomfort. But this new pain struck so suddenly and intensely that I asked the contractor who happened to be doing work on my home that day to drive me to the local emergency room. The diagnosis was a ruptured cerebral aneurysm. I was shipped to Thomas Jefferson University Hospital in Philadelphia for emergency surgery the next day.

As brain traumas go, I was extremely fortunate. I experienced no lasting impairment and recovered rapidly from the operation. But in addition to a rather unfortunate haircut, I was left with holes in my short-term memory that you could drive a truck through.

This memory deficit, while protecting me from whatever unpleasantness I went through pre- and post-surgery, made me question why I was in a nursing home. I'm sure people explained it to me, but the four-lane highway route through my synapses muddled things.

To an outside observer the reason would have been quite clear. In the three weeks or so following aneurysm surgery, anything can happen. Seizures, a stroke, and other scary stuff were real possibilities at any given time. So I was out of the hospital but not out of the woods, not by a long shot. I still required 24-hour supervision, hence my transfer to this nursing/rehab home.

And yet in terms of rehab there wasn't much for me to do. I quickly proved that the odds of my falling down or walking into a wall were pretty low. I also mastered sequencing exercises to show I wasn't going to burn the house down while scrambling an egg once I got home. After that, the rehab was more or less over. I spent a lot of time watching daytime TV and napping.

I also people-watched. There was one fellow resident who had a particular claim on my attention. Monkey Woman, as I came to think of her, had the rather disconcerting habit of throwing back her head and screaming like a chimpanzee. She did this to express displeasure, intimidate people, or just to show that she could. Even when she wasn't screeching, her mood was foul since her family had decreed she had to quit smoking. Watching other residents crowd into the outdoor common area every day to light up had to be maddening for her.

My 80-something roommate Julia was cordial enough, but wary of a new person in her space. I didn't see her that much because the staff whisked her away to activities all day, every day. At night, Julia went to bed early—but not before carrying on like a small child begging the nurses not to hurt her as they transferred her from her wheelchair to the bed.

A cadaverous man was routinely parked at the nurse's station just across from my room for hours on end. I never found out why he was left there, nor did I manage to decode what he kept shouting every 15 minutes or so.
One night Julia had enough of him.

"Joseph, you shut up!" she yelled from her bed. She began muttering loudly about Joseph's shortcomings.

Feeling mischievous, I couldn't help asking: "Julia, are you two dating?"

"No!" Julia snapped. "But he does owe me money!"

It all seemed vaguely familiar. I suddenly flashed back to dorm life. That was it! Except, I was stuck in the Dorm from Hell, forcibly returned by age and circumstance to the days of communal living – with the rules, the craziness, and the bingo, but none of the freedom and fun.

Unlike all but a handful of people there, at least I knew I was going home. But I couldn't get a straight answer about when that might be. So after nearly a week, I decided I couldn't just sit around waiting anymore.

One night, after listening to Julia plead with the staff as they settled her into bed, I slipped out of the room and down the hall to the security door for the main lobby. A code opened the door after business hours, which I obtained by asking a random person passing by. It was ridiculously easy. Looking like a visitor did have its advantages.

Elated, I crossed the lobby and went outside to the parking lot. Freedom! Now, what to do with it?

I looked around, picked a direction, and started walking along the highway in the warm night air until I came to a Shell gas station. Standing in the orange and yellow glow, I realized I had no plan whatsoever. So I called my sister.

She was not thrilled to hear that I had become a fugitive, and informed me that she was not going to abet my attempt at life on the lam. She ordered me to stay put until she came to pick me up.

Some time later she did—and, along with two nurse's aides who had been quietly following me, returned me to the nursing home. I was promptly fitted for an electronic monitoring bracelet that sounded an alarm if I got too near to an exit. Back in my room, my sister promised she would negotiate a few rule changes for me, like being able to take a shower every day.

Partly as a show of good faith and partly to be a smart ass, I demonstrated that I could slide the bracelet off and on.

As I let a nurse secure the bracelet more snugly, it occurred to me that Monkey Woman and I were not so different. Sooner or later, I was going to get my life back, but for now she and I had very little say about what was best for us. Neither of us was happy about it.

I was allowed to go home not too long after my escape attempt. My progress since then has been steady; some say miraculous. My experiences in the nursing home and the people I met there had a profound effect on me, particularly my brushes with Monkey Woman.

I like to think that if she wasn't confined to a wheelchair, she might have hung out at the Shell station to smoke when she got the chance. I would have gladly given her the door code.
Samantha Drake CGS'06 lives in Lansdowne, Pennsylvania.

http://www.upenn.edu/gazette/0113/voices.html

Facing Cancer, a Stark Choice - NYTimes.com

In the 1970s, women's health advocates were highly suspicious of mastectomies. They argued that surgeons - in those days, pretty much an all-male club - were far too quick to remove a breast after a diagnosis of cancer, with disfiguring results.
But today, the pendulum has swung the other way. A new generation of women want doctors to take a more aggressive approach, and more and more are asking that even healthy breasts be removed to ward off cancer before it can strike.
Researchers estimate that as many as 15 percent of women with breast cancer - 30,000 a year - opt to have both breasts removed, up from less than 3 percent in the late 1990s. Notably, it appears that the vast majority of these women have never received genetic testing or counseling and are basing the decision on exaggerated fears about their risk of recurrence.
In addition, doctors say an increasing number of women who have never had a cancer diagnosis are demanding mastectomies based on genetic risk. (Cancer databases don't track these women, so their numbers are unknown.)
"We are confronting almost an epidemic of prophylactic mastectomy," said Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston. "I think the medical community has taken notice. We don't have data that say oncologically this is a necessity, so why are women making this choice?"
One reason may be the never-ending awareness campaigns that have left many women in perpetual fear of the disease. Improvements in breast reconstruction may also be driving the trend, along with celebrities who go public with their decision to undergo preventive mastectomy.
This month Allyn Rose, a 24-year-old Miss America contestant from Washington, D.C., made headlines when she announced plans to have both her healthy breasts removed after the pageant; both her mother and her grandmother died from breast cancer. The television personality Giuliana Rancic, 37, and the actress Christina Applegate, 41, also talked publicly about having double mastectomies after diagnoses of early-stage breast cancer.
"You're not going to find other organs that people cut out of their bodies because they're worried about disease," said the medical historian Dr. Barron H. Lerner, author of "The Breast Cancer Wars" (2001). "Because breast cancer is a disease that is so emotionally charged and gets so much attention, I think at times women feel almost obligated to be as proactive as possible - that's the culture of breast cancer."
Most of the data on prophylactic mastectomy come from the University of Minnesota, where researchers tracked contralateral mastectomy trends (removing a healthy breast alongside one with cancer) from 1998 to 2006. Dr. Todd M. Tuttle, chief of surgical oncology, said double mastectomy rates more than doubled during that period and the rise showed no signs of slowing.
From those trends as well as anecdotal reports, Dr. Tuttle estimates that at least 15 percent of women who receive a breast cancer diagnosis will have the second, healthy breast removed. "It's younger women who are doing it," he said.
The risk that a woman with breast cancer will develop cancer in the other breast is about 5 percent over 10 years, Dr. Tuttle said. Yet a University of Minnesota study found that women estimated their risk to be more than 30 percent.
"I think there are women who markedly overestimate their risk of getting cancer," he said.
Most experts agree that double mastectomy is a reasonable option for women who have a strong genetic risk and have tested positive for a breast cancer gene. That was the case with Allison Gilbert, 42, a writer in Westchester County who discovered her genetic risk after her grandmother died of breast cancer and her mother died of ovarian cancer.
Even so, she delayed the decision to get prophylactic mastectomy until her aunt died from an aggressive breast cancer. In August, she had a double mastectomy. (She had her ovaries removed earlier.)
"I feel the women in my family didn't have a way to avoid their fate," said Ms. Gilbert, author of the 2011 book "Parentless Parents," about how losing a parent influences one's own style of parenting. "Here I was given an incredible opportunity to know what I have and to do something about it and, God willing, be around for my kids longer."
Even so, she said her decisions were not made lightly. The double mastectomy and reconstruction required an initial 11 1/2-hour surgery and an "intense" recovery. She got genetic counseling, joined support groups and researched her options.
But doctors say many women are not making such informed decisions. Last month, University of Michigan researchers reported on a study of more than 1,446 women who had breast cancer. Four years after their diagnosis, 35 percent were considering removing their healthy breast and 7 percent had already done so.
Notably, most of the women who had a double mastectomy were not at high risk for a cancer recurrence. In fact, studies suggest that most women who have double mastectomies never seek genetic testing or counseling.
"Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day," said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. "Women feel like it's a body part over which they totally have a choice, and they say, 'I want to put this behind me - I don't want to worry about it anymore.' "
http://well.blogs.nytimes.com/2013/01/21/facing-cancer-a-stark-choice/?pagewanted=print