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Lives - The Husband’s Speech - NYTimes.com

When I crossed the threshold into my husband's hospital room, I entered a world that was unfamiliar, with an unfamiliar man lying in it. He suffered a massive stroke only days before, one tailor-made to his own private hell. In the cruelest of twists for a novelist-professor obsessed with words, the stroke ravaged the language areas of his brain.

Although the man looked like Paul, my partner of 35 years, he wore a distorted scowl and seemed to unhinge his whole body in a vain attempt to speak, reeling upright, flexing his shoulders at odd angles and flailing his arms against the bed. Then he switched to just a facial tantrum — cheeks, eyelashes, jowls and nose writhing as he desperately fought to get something across. His mouth slouched to the right, his lip curled and for a moment all I could see was a glint of drool at the corner of his mouth.

"Hi, honey," I said, trying to rally a small smile from somewhere in the coal pits of my belly.

Paul stared at me, his eyes declaring: What on earth are you driving at?

Then he fidgeted about as if trying to muster all the aggregate parts of his being, but finding only a blurred view of what once moved in unison, he spluttered: "Mem." When I didn't respond, he brought down his fist on the bed railing, repeating it in loud italics: "Mem, mem, mem!"

"Easy now, easy, quiet down, it's O.K.," I said in what I hoped was a calming tone. But his flare-up shook me so much that I had trouble steadying my voice.

Paul would tell me later that he felt different from before, newly embedded in himself, as if trapped in statuary. His room seemed to be full of Hopi dancers and dazzling as Mardi Gras. He felt his teeth blink. Something pagan was going on, with a mad ring to it, like a disturbed vibraphone. People were speaking a foreign language. And they didn't seem aware of the pandemonium and cacophony he was enduring. Alice-in-Wonderland sensory warping is common after a stroke, as the damaged brain struggles to make sense of its surroundings.

When I tried to wrap an arm around him, he threw it off. "How are you?" I persisted.

He struggled to respond, then he spat a little sound — whgggggggg — as if he were blowing at a candle, followed by a parade of s's. On he wrestled, and the more words eluded him, the more frustrated he became, until his temper boiled and his jaw opened and closed in silent damnation. At last, he glared at me. Suddenly he clenched his fists and thrashed his arms as he shouted, "MEM-MEM-MEM-MEM-MEM!"

I flinched, and seeing that he'd scared me, he quieted down.

"I wish I could understand you," I said, more to myself than to Paul. And then I repeated, "How are you?" not meaning anything by the question except I'm here, I'm sharing your suffering, I wish I could help you.

Paul looked at me with controlled exasperation. All that came back from him was a croak, a silent cough and "MEM" barked seven times and finally murmured, like the last word from a dying man, as if this syllable alone formed the basis of some life to come.

Paul fell quiet. But the rest of our new habitat was noisy. Remote voices grew louder as they approached our room, striking a distinct sentence or two as they passed — "Wouldn't you think?" "I dunno" — before dwindling to sound scraps again. Low-heeled shoes shuffled past. Unseen trays and trolleys clanked through the hallway. Inside the room, purring machines and syncopated pings broke through that barely audible background stir we perceive as silence.

In time Paul left the hospital for what has been a six-year odyssey of relearning language on his part and caregiving on mine. Thanks to will and hard work, the brain's gift for plasticity and our homemade speech therapy, he's talking and writing again. Not perfectly; his days are still riddled with aphasia. Life is different, but sweet, often devolving into hilarious charades as he tries to pin a word down, like a lepidopterist with a handful of oysters. So there are many frustrations, but once again a shared revelry with words. And Paul seems altogether happier than before, living more in the moment, grateful to be alive.

We often remember with a shiver those early days in the hospital, when life felt small as a noose, and I thought it was the end of our long love story. I discovered instead that it was only the beginning of a new chapter.

Diane Ackerman is the author of "One Hundred Names for Love: A Stroke, a Marriage and the Language of Healing," to be published in April. This essay is adapted from the book.

http://www.nytimes.com/2011/02/13/magazine/13lives-t.html?ref=magazine

Are Doctors Too Quick to Cut? - Room for Debate - NYTimes.com

A new study has found that removing cancerous lymph nodes in about 20 percent of breast cancer patients does not improve survival or prevent cancer recurrence. The surgery was unnecessary because the women in the study, all with early breast cancer, had chemotherapy and radiation, which probably wiped out any disease in the nodes. Yet for many decades the painful procedure, which can cause debilitating complications, has been standard treatment. The new evidence is expected to alter that approach drastically. (By contrast, surgery is becoming more effective in some fields, like prenatal treatment of spina bifida.)

What does the breast cancer news say about the way we look at surgery as routine treatment? Does the American medical culture rely too much on cutting out the problem? Is that changing?

http://www.nytimes.com/roomfordebate/2011/02/09/are-doctors-too-quick-to-cut

Fetal Surgery Improves Spina Bifida Outcomes, Study Says - NYTimes.com

For years, surgeons have been trying to find ways of operating on babies in the womb, reasoning that medical abnormalities might be more easily fixed while a fetus is still developing. But with tremendous risks to babies and mothers, and a mixed record of success, fetal surgery is mostly used when babies are likely to die otherwise.

Now, for the first time, a rigorous clinical trial shows that fetal surgery can help babies with a condition that is not usually life-threatening. Babies with a form of spina bifida, a debilitating spinal abnormality, were more likely to walk and experience fewer neurological problems if operated on before being born rather than afterward.

The $22.5 million study, long awaited by experts and published online Wednesday in The New England Journal of Medicine, is likely to galvanize interest in trying to address problems before birth, including operating on serious heart defects and bladder blockages, and potentially using fetal bone marrow or stem cell transplants for sickle cell anemia and immune disorders.

"It's a good start, a step in the right direction," said Dr. Joe Leigh Simpson, an obstetrician and geneticist at Florida International University, who wrote an editorial that accompanied the research. "It showed improvement and that there's reason to continue looking for a better mousetrap."

Still, he said, "the improvement that was hoped for, the home run or the holy grail" of eliminating all major problems "obviously did not occur."

And as technology increasingly allows doctors to diagnose problems in a developing fetus, the study underscores remaining risks and hurdles, including developing less-invasive techniques to avoid creating other problems for babies or mothers.

The spina bifida procedure was considered beneficial enough that an independent safety monitoring board stopped the study early so babies scheduled to receive surgery after birth could have access to prenatal surgery.

But there were medical downsides for the women and infants: greater likelihood of being born several weeks earlier than the postnatal group, related breathing problems, and thinning or tearing at women's surgical incisions, requiring Caesarean sections for later births.

"While this is a very promising and quite exciting result," said a study author, Dr. Diana Farmer, surgeon in chief at the Benioff Children's Hospital at the University of California, San Francisco, "not all the patients were helped here, and there are significant risks. This procedure is not for everyone."

Conducting the study was itself challenging. Prenatal spina bifida surgery gained attention in the late 1990s when some medical centers, like Vanderbilt University, began performing it. A photograph in which a fetus's hand appeared to be gripping the finger of a surgeon who had lifted the hand out of the womb was circulated by opponents of abortion rights, further raising the profile.

Leading experts suggested a clinical trial to determine if prenatal surgery was better than postnatal. They insisted on an unusual agreement: that all but three hospitals, in Philadelphia, San Francisco and Nashville, stop doing the procedure.

"There were lots of places that wanted to do it" amid pressure from eager patients, said Dr. Michael Harrison, who pioneered fetal surgery at the University of California, San Francisco, and was a principal investigator for the spina bifida trial before retiring. "But we wanted to make sure it wouldn't become a freak show. And if you offer treatment outside the trial, you'll never have a trial because no mother would agree to flip a coin."

Ultimately the other hospitals acceded.

One reason spina bifida researchers wanted a trial was the experience with prenatal surgery for a condition in which the diaphragm has life-threatening abnormalities.

After early efforts to repair the condition prenatally, "we thought we were heroes," Dr. Harrison said, but realized it worked only for milder cases. Another prenatal approach, forcing the lungs to grow, worked, but caused significantly premature births, making it no better than postnatal treatment, he said. He added that prenatal techniques had improved, becoming less harmful.

The spina bifida study involved the most severe form, myelomeningocele (MY-ell-oh-men-NING-guh-seal), in which the spine does not close properly and the spinal cord protrudes. Children may experience lower-body paralysis, fluid on the brain, bladder problems and learning disabilities. About one in 3,000 children have that form, said Dr. Alan Guttmacher, director of the National Institute of Child Health and Human Development, which financed and helped conduct the study.

Many babies now receive surgery to close the spinal opening after birth, but nerve damage from the spinal cord exposure to amniotic fluid remains. Also, the brainstem may be pulled into the spinal column. Excess fluid in the brain may require draining with implanted shunts, which can lead to infection or need repeated surgical replacement.

In the study, about 80 babies were randomly selected for surgery after birth; another 80 had the spinal opening surgically closed in utero, between 19 and 26 weeks of pregnancy. Two in each group died.

Before surgery, babies in the prenatal group had more severe spinal lesions than the postnatal group, but more in the prenatal group had better results, said a co-author, Dr. Scott Adzick, chief of pediatric surgery at Children's Hospital of Philadelphia.

Those who received prenatal surgery were half as likely to have a shunt, and eight times as likely to have a normally positioned brainstem. There was "much better motor function of the legs," Dr. Adzick said, and at 30 months old, nearly twice as many walked without crutches or orthotics.

Although they were born at 34 weeks of pregnancy on average, compared with 37 weeks for the postnatal group, there was no difference in cognitive development, said Dr. Catherine Spong, chief of pregnancy and perinatology at the child health institute.

Dr. Adzick said prenatal surgery may "stop exposure of the developing spinal cord and perhaps avert further neurological damage" or stop the leak of spinal fluid that causes brainstem problems.

More ...

http://www.nytimes.com/2011/02/10/health/10fetal.html?_r=1&nl=todaysheadlines&emc=tha2

American Medical Device Makers Look Overseas for Quicker Approval - NYTimes.com

Late last year, Biosensors International, a medical device company, shut down its operation in Southern California, which had once housed 90 people, including the company's top executives and researchers.

The reason, executives say, was that it would take too long to get its new cardiac stent approved by the Food and Drug Administration.

"It's available all over the world, including Mexico and Canada, but not in the United States," said the chief executive, Jeffrey B. Jump, an American who runs the company from Switzerland. "We decided, let's spend our money in China, Brazil, India, Europe."

Medical device industry executives and investors are complaining vociferously these days that the industry's competitive edge in the United States and overseas is being jeopardized by a heightened regulatory scrutiny.

The F.D.A., they and others say, appears to be reacting to criticism that its approvals for some products had been lax, leading to a spate of recalls of some unsafe medical devices, like implanted defibrillators and hip replacements.

Now, executives of device companies say the F.D.A. has gone too far in flexing its regulatory muscle, and they worry that a slower, tougher approval process in a weakened economy could chill investments and cripple innovation.

In addition, they say that American patients are being deprived of the latest technology because companies routinely seek approval for new devices in Europe first. For instance, heart valves that can be installed through a catheter instead of open-heart surgery have been available in Europe since 2007 but will not be available in the United States until late this year at the earliest.

"Ten years from now, we'll all get on planes and fly somewhere to get treated," said Jonathan MacQuitty, a Silicon Valley venture capitalist with Abingworth Management.

Marti Conger, a business consultant in Benicia, Calif., already has. She went to England in October 2009 to get an implant of a new artificial disk for her spine developed by Spinal Kinetics of Sunnyvale, Calif.

"Sunnyvale is 40 miles south of my house," said Ms. Conger, who has become an advocate for faster device approvals in the United States. "I had to go to England to get my surgery."

Stenum Spine Hospital in Germany has performed disk surgery on 1,000 Americans over the last eight years, said Jim Rider, the hospital's American marketing agent.

Acknowledging industry concerns, the F.D.A. on Tuesday proposed creating an "innovation pathway" aimed at speeding regulatory reviews of a small number of groundbreaking devices. And last month the agency announced measures it said would make the regulatory process more predictable for the vast majority of devices.

"A consistent and predictable review process will stimulate investment here at home and keep jobs from going overseas," Dr. Jeffery Shuren, the director of the agency's medical device division, told reporters.

But Dr. Shuren said the F.D.A. would not relax its standards, arguing that Europe's system might be too lax. He said that a breast implant, a lung sealant and an implant for elbow fractures were approved in Europe but not in the United States, and then had to be taken off the market in Europe for safety reasons.

"We don't use our people as guinea pigs in the U.S.," he said

Medical device executives said they welcomed the steps, but continued to express concerns. Consumer advocates, like Dr. Sidney Wolfe of Public Citizen, however, said that device regulation was already much less stringent than for drugs and that the F.D.A. was caving in to industry demands rather than ensuring consumer safety.

Dr. Charles Rosen, a spine surgeon who is also president of the Association for Medical Ethics, said that the newest devices were not always best. He said he had at least 50 patients who had suffered serious problems from an older artificial disk. Many of those patients, he said, had gone to Europe to get them before they were available in the United States.

Just since November, three reports — two sponsored by device industry trade groups and one conducted by the consulting firm PricewaterhouseCoopers — have raised concerns about the F.D.A. approval process. One report found that the rate of recalls in Europe was similar to that in the United States, suggesting faster approvals overseas were not hurting patients.

The complaints are driven in part by financial pressures. Venture capitalists, because of the financial crisis and their own poor returns, have less money and need quicker returns on their investments from the companies they back.

Bigger device companies also complain about the F.D.A., but not as much as struggling start-ups. "The F.D.A. is asking for larger trials, more thoughtful trials, all in the interest of the American public," said Dr. Stephen N. Oesterle, senior vice president for medicine and technology at Medtronic.

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http://www.nytimes.com/2011/02/10/business/10device.html?nl=todaysheadlines&emc=tha25&pagewanted=all

Parents Turn to iPad for Speech Therapy - WSJ.com

The rise of mainstream tablet computers is proving to have unforeseen benefits for children with speech and communication problems—and such use has the potential to disrupt a business where specialized devices can cost thousands of dollars.

Before she got an iPad at age two, Caleigh Gray couldn't respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on Apple Inc.'s device.

"We're not having to fight to prove to people that she is a smart little girl anymore, because it's there once they see her using the iPad," said Caleigh's mother, Holly Gray, who said her daughter can use the tablet to identify colors or ask to go outside.

The software, called Proloquo2Go by a company called AssistiveWare BV, is one of a growing number of apps aimed at people with speech difficulties developed for Apple's gadgets. Some of the apps offer images that users can press to make the sound of a word; others lead students through stories to teach them basic speech patterns.

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http://online.wsj.com/article/SB10001424052748703440004575547971877769154.html

Sharecare - Expert answers for your healthstyle

Sharecare is designed to greatly simplify the search for quality healthcare information and provide consumers with the necessary tools to make smart health choices and live healthier lives. Our mission is to answer the worldís questions of health and achieve a collective wisdom by developing a comprehensive database of all of the questions of health and wellness and actively recruiting industry experts to answer them. Leading physicians, nurses, hospitals, clinics, authors, healthcare companies and non-profits connect, interact and share their collective expertise encouraging consumers to ask, learn and act upon questions of health.

http://www.sharecare.com/

Online Medical Advice Can Be a Prescription for Fear - NYTimes.com

If you're looking for the name of a new pill to "ask your doctor about," as the ads say, the Mayo Clinic Health Information site is not the place for you. If you're shopping for a newly branded disorder that might account for your general feeling of unease, Mayo is not for you either. But if you want workaday, can-do health information in a nonprofit environment, plug your symptoms into Mayo's Symptom Checker. What you'll get is: No hysteria. No drug peddling. Good medicine. Good ideas.

This is very, very rare on the medical Web, which is dominated by an enormous and powerful site whose name — oh, what the hay, it'sWebMD — has become a panicky byword among laysurfers for "hypochondria time suck." In more whistle-blowing quarters, WebMD is synonymous with Big Pharma Shilling. A February 2010 investigation into WebMD's relationship with drug maker Eli Lilly by Senator Chuck Grassley of Iowa confirmed the suspicions of longtime WebMD users. With the site's (admitted) connections to pharmaceutical and other companies, WebMD has become permeated with pseudomedicine and subtle misinformation.

Because of the way WebMD frames health information commercially, using the meretricious voice of a pharmaceutical rep, I now recommend that anyone except advertising executives whose job entails monitoring product placement actually blockWebMD. It's not only a waste of time, but it's also a disorder in and of itself — one that preys on the fear and vulnerability of its users to sell them half-truths and, eventually, pills.

But if careering around the Web doing symptom searches is your bag (and, come on, we've all been there), there's still MayoClinic.com. Where WebMD is a corporation that started as an ad-supported health-alarmism site with revenues of $504 million in 2010, the Mayo Clinic is a nonprofit medical-practice-and-research group that started as a clinic. Mayo's storied past as the country's premier research hospital, in Rochester, Minn., and its storied present as one of Fortune's "100 Best Companies to Work For" surface in the integrity of the site itself, which — though not ad-free — is spare and neatly organized, with the measured, learned voice of the best doctors. The byline for most entries is "Mayo Clinic staff." The integrity of the whole institution is on the line with this site, and the Mayo Clinic has every motivation to keep its information authoritative and up to date.

Contrast this with WebMD, which — with every reason to amp up page views, impress advertisers and drive traffic to commercial sites — has the junky, attic-y look of your standard ad-chocked Web site. Amid so-called information about cancer and depression are banner ads for brands like Crest, L'Oreal, Bounce and Clorox.

Health sites are hugely influential in how Americans think about their health and may even play a part in public debates over health care, as they aggressively shape how would-be patients consume medical information and envision treatment. Consider the humanheadache. If you plug "headache" and "Mayo Clinic" into Google, you get directed to information about the "tension headache." The first page is absent photos and hype. Instead you read: "A tension headache is generally a diffuse, mild to moderate pain. . . . Managing a tension headache is often a balance between fostering healthy habits, finding effective nondrug treatments and using medications appropriately." Sounds right.

By contrast, if you plug "headache" and "WebMD" into Google, the Web opens to the glamorous, photo-dominated "Migraines and Headaches Health Center," a sound-and-light show that seems itself like a headache trigger. There's the requisite picture of a tastefully made-up young woman holding her head in exquisite agony. The headache "news," flush right on the page, comes with more artful photos of lovely people in pain and includes scare headlines like "Headaches: When Is It an Emergency?" The first page contains no hard facts — you have to click and thereby drive up the site's lucrative click-throughs — but instead quickly transforms visitors from Web users with headaches to hard-core migraineurs and drug consumers. According to WebMD: "Migraines and other types of headache — like tension headache and sinus headache — are painful and can rob you of quality of life. Migraine symptoms include a pounding headache, nausea, vomitingand light sensitivity. Headache remedies include various types of pain relievers. Migraine treatments may also include antinausea drugs and medications to prevent or stop headaches."

On the Mayo Clinic's site, no specific drugs are mentioned for garden-variety headaches until Page 8, when over-the-counter analgesics are mentioned. This came well after I read a fantastic how-to called "Preparing for My Appointment" — a guide that Mayo includes with every entry. This edition encouraged me to ask about headache types and about alternative therapies and generic medications. Mostly it just didn't rush me to hysteria, or to drugs. I marveled again at the mellow design of the site and at how Mayo manages to stay reliable in the world of infotainment that is the commercial Web. I admired the site for a minute more, and my headache dissipated.

http://www.nytimes.com/2011/02/06/magazine/06FOB-Medium-t.html?src=me&ref=magazine

More Than 70 Members of Congress Demand Cognitive Treatment for Troops With Traumatic Brain Injuries - ProPublica

A bipartisan group of 74 lawmakers issued aletter Friday demanding that the Pentagon's health plan cover a treatment for brain-injured soldiers known as cognitive rehabilitation therapy.

Rep. Bill Pascrell, D-N.J., and Rep. Todd Platts, R-Pa., the leaders of the Congressional Brain Injury Task Force, cited an investigation by ProPublica and NPR revealing that Tricare, an insurance-style plan covering soldiers and many veterans, had relied on a controversial study to avoid paying for the intensive and often expensive treatment.

"We hope that you share our concern that service members returning from the battlefield cannot wait to receive treatment for their injuries," the letter states. "It is our hope that there exists some contingency plan to provide cognitive rehabilitation for service members who are returning home today."

Official Pentagon figures show that nearly 200,000 troops have suffered traumatic brain injuries since 2001, though our investigation found evidence suggesting the true toll is far higher. Although the majority of soldiers recover from the most common form of head trauma, known as mild traumatic brain injury or concussion, some suffer lifelong mental difficulties, with trouble remembering words or following directions.

Pascrell and Platts first wrote a letter, also signed by scores of lawmakers, demanding that Tricare provide cognitive rehabilitation more than two years ago. In response, Tricare contracted a study that found insufficient evidence to justify providing the treatment.

In confidential reviews obtained by ProPublica and NPR, however, leading brain specialists blasted the study for ignoring evidence that the therapy helped, calling the study "deeply flawed." Top Pentagon health officials have also expressed concern about the high cost of the treatment, our reporting found.

Tricare has said that it will cover many aspects of cognitive rehabilitation, which typically includes physical and speech therapy. But soldiers, families and civilian clinics told us they have had trouble convincing Tricare to pick up the tab.

Tricare's stance stands in contrast to some major private insurance companies and some state Medicaid programs, which cover the treatment. Expert panels convened by the Pentagon and the Institutes of Medicine have also endorsed the therapy, which can cost more than $50,000 per soldier.

Tricare has since commissioned the Institutes of Medicine to carry out another review of cognitive rehabilitation. The reviewkicks off on Monday but is not expected to be complete until the end of this year.

Pascrell urged the Pentagon to react more quickly to Congressional concerns.

More ...

http://www.propublica.org/article/more-than-70-members-of-congress-demand-cognitive-treatment-for-troops-with

Teenagers, Friends and Bad Decisions - NYTimes.com

Why do otherwise good kids seem to make bad decisions when they are with their friends? New research on risk taking and the teenage brain offers some answers.

In studies at Temple University, psychologists used functional magnetic resonance imaging scans on 40 teenagers and adults to determine if there are differences in brain activity when adolescents are alone versus with their friends. The findings suggest that teenage peer pressure has a distinct effect on brain signals involving risk and reward, helping to explain why young people are more likely to misbehave and take risks when their friends are watching.

To test how the presence of peers influences risk taking, the researchers asked 14 young teenagers (ages 14 to 18), 14 college students and 12 young adults to play a six-minute video driving game while in a brain scanner. Participants were given cash prizes for completing the game in a certain time, but players had to make decisions about stopping at yellow lights, and being delayed, or racing through yellow lights, which could result in a faster time and a bigger prize, but also meant a higher risk for crashing and an even longer delay. The children and adults played four rounds of the game while undergoing the brain scan. Half the time they played alone, and half the time they were told that two same-sex friends who had accompanied them to the study were watching the play in the next room.

Among adults and college students, there were no meaningful differences in risk taking, regardless of  whether friends were watching. But the young teenagers ran about 40 percent more yellow lights and had 60 percent more crashes when they knew their friends were watching. And notably, the regions of the brain associated with reward showed greater activity when they were playing in view of their friends. It was as if the presence of friends, even in the next room, prompted the brain's reward system to drown out any warning signals about risk, tipping the balance toward the reward.

"The presence of peers activated the reward circuitry in the brain of adolescents that it didn't do in the case of adults," said Laurence Steinberg, an author of the study, who is a psychology professor at Temple and author of "You and Your Adolescent: The Essential Guide for Ages 10 to 25." "We think we've uncovered one very plausible explanation for why adolescents do a lot of stupid things with their friends that they wouldn't do when they are by themselves."

Dr. Steinberg notes that the findings give a new view of peer pressure, since the peers in this experiment were not even in the same room as the teenager in the scanner.

"The subject was in the scanner, so the friends were not able to directly pressure the person to take chances," Dr. Steinberg said. "I think it's helpful to understand because many parents conceive of peer pressure as kids directly coercing each other into doing things. We've shown that just the knowledge that your friends are watching you can increase risky behavior."

Dr. Steinberg notes that the brain system involved in reward processing is also involved in the processing of social information, explaining why peers can have such a pronounced effect on decision making. The effect is believed to be especially strong in teenagers because brain changes shortly after puberty appear to make young people more attentive and aware of what other people are thinking about them, Dr. Steinberg said.

The study results are borne out in real-world data that show teenagers have a much higher risk of car accidents when other teenagers are in the car. More study is needed to determine if the effect shown in the game study is the same when teenagers are in the presence of an opposite-sex friend or romantic interest. In the study, there were no meaningful differences in risk taking among boys and girls. However, some real-world driving data suggests that teenage boys take more risks behind the wheel when one or more boys are in the car, but drive more carefully if they are with a girlfriend.

For parents, the study data reinforce the notion that groups of teenagers need close supervision.

"All of us who have very good kids know they've done really dumb things when they've been with their friends," Dr. Steinberg said. "The lesson is that if you have a kid whom you think of as very mature and able to exercise good judgment, based on your observations when he or she is alone or with you, that doesn't necessarily generalize to how he or she will behave in a group of friends without adults around. Parents should be aware of that."

http://well.blogs.nytimes.com/2011/02/03/teenagers-friends-and-bad-decisions/?src=me&ref=general

For Tucson Survivors, Cost of Medical Care Is a Concern - NYTimes.com

TUCSON — Seconds after gunfire erupted outside a supermarket here last month, Randy Gardner, one of those struck during the barrage, said another potential crisis immediately entered his mind.

"I wondered, 'How much is this going to cost me?' " he said. "It was a thought that went through my head right away."

Tucson's medical system quickly swung into action after the shootings, with ambulances and medical helicopters rushing victims to hospitals where trauma specialists awaited them. The life-saving treatment the victims received over the ensuing days carried a heavy cost, though, and the bills — the costliest of which may be in the hundreds of thousands of dollars for Representative Gabrielle Giffords — are still being tallied.

But despite the fears of some victims, it does not appear that the shooting will ruin anyone financially. Interviews with victims as well as advocates assisting them suggest that most, if not all, of the 13 people wounded that morning had health insurance, and health care providers say they expect insurance companies to cover the bulk of the medical costs.

On top of that, the fact that federal charges have been filed against Jared L. Loughner in the shootings means that state victim-compensation money will be supplemented by federal help. Private charitable efforts to aid victims have also been created.

Ms. Giffords, who received a bullet wound to the head and was the most gravely injured of those who survived the shooting, also had probably the best insurance, a federal plan known for its comprehensive coverage that was held out as a model during last year's debate over the health care overhaul.

Dr. Peter Rhee, chief trauma surgeon at Tucson's University Medical Center, has repeatedly said that Ms. Giffords received the same care there as any other gunshot victim. "We don't have time or luxury to ask for insurance cards or to know if they are a good guy or how they are going to pay," he said. "We deal with whoever comes in the door. We don't know if they are immigrants, if they are legal, illegal. We just treat them."

Still, some of those who are following Ms. Giffords's treatment, including her speedy transfer from Tucson to a top rehabilitation facility in Houston, can only wish their health plans were as responsive.

Monique Pomerleau, a mother of three from Northern California, suffered a traumatic brain injury in a traffic accident last February but has not yet undergone rehabilitation because her insurer, Health Net of California, said it lacked such services within the network. Her family has hired a lawyer to press the matter and recently received word that a 30-day rehabilitation program had been approved.

"We watched the congresswoman's care and we thought, How marvelous, but there are real people out there like Monique who don't get the same possibilities," said Lisa Kantor, a lawyer who specializes in challenging insurance companies and was hired by Ms. Pomerleau's father, Tom.

A spokesman for the insurer said federal privacy laws prevented it from commenting on individual patients' cases.

After a tragedy like the Tucson shooting, billing is a topic that appears almost unseemly to raise. But with health costs spiraling, it is one that was on the minds of some victims, not to mention their care providers.

"We have to recover our costs so that we can provide the service to others," said Craig Yale, vice president of corporate development for the Colorado-based Air Methods Corporation, which operates LifeNet helicopter service in Tucson, one of three private helicopter operators that were called to the shooting scene.

At University Medical Center, where the most seriously injured victims were treated, Misty Hansen, the hospital's chief financial officer, said she did not anticipate any problems recovering costs. "It is my expectation that the bills will be paid and the hospital will be appropriately compensated," she said.

Declining to discuss the case of individual patients, Ms. Hansen said 5 percent of patients were "self pay," which means they lack insurance and are billed personally.

Even those like Mr. Gardner, who lost a solid health insurance plan when he retired five years ago and now has a deductible in the $10,000 range, will most likely benefit from the plethora of special public and private victim funds to fill gaps in his coverage.

The Federal Bureau of Investigation's victim assistance fund cannot be used directly for medical care. But the money was used after the Tucson shooting to replace the eyeglasses of two injured victims and to fly relatives of victims to Tucson and the remains of one victim to her home state, said Kathryn Turman, director of the F.B.I.'s office for victim assistance.

The Safeway supermarket where Mr. Loughner is accused of spraying the crowd with bullets has begun a fund to aid victims, although company officials have not yet detailed how the money will be spent. A nonprofit victims rights group based in Tucson, Homicide Survivors, is similarly raising money on behalf of victims.

"My fund is too small to cover their medical bills," said Carol Gaxiola, who is director of the survivors' group. "But we'll be able to pitch in to cover other costs."

Besides the ambulance bill ($991.80 and $16.96 a mile for ground transport) and the hospital expenses, victims could face travel costs if they wish to follow the federal court proceedings against Mr. Loughner, especially if the trial is moved out of state.

There are also the costs of funeral expenses for the six people who died, as well as trauma counselors and loss of wages for the injured.

Mary Reed, who was shot three times that morning, said her insurer, through her husband's job at the University of Arizona, had been unusually accommodating since the shooting, approving medicines and services in 24 hours, significantly faster than usual.

One concern she has, though, is whether her 17-year-old daughter, who was at the scene but was not hit — Ms. Reed threw herself on her daughter to protect her — will qualify as a victim. Her husband and son were there as well, and they ran for cover. They are all undergoing counseling, but Ms. Reed is uncertain who will pick up the cost.

Kenneth Dorushka, 63, was struck in the arm by a bullet and is still awaiting word on how much of his costs will be covered by his insurer, United Healthcare. "It's hard to tell because we haven't gotten any bills yet, so you don't know how much they're going to cover or not," said Mr. Dorushka, adding that he had spent about $100 so far on co-payments and other medical costs.

Ron Barber, district director for Ms. Giffords's Congressional office who was hit twice in the shooting, said he expected to emerge from the shooting without any financial cost.

"I was thinking at first about what kind of deductible I'd have to pay, but then I learned that workers' compensation will cover everything," said Mr. Barber, who was working when he was shot.

Even as he recovers at home, Mr. Barber said he was trying to ensure that the shooting does not cause undue financial strain on those affected.

"It's obvious that those of us who were shot are victims, but there are others," he said. "I don't know anyone who didn't have medical coverage, but I'm interested in making sure no one continues to suffer from this."

http://www.nytimes.com/2011/02/04/us/04tucson.html?_r=1&nl=todaysheadlines&emc=tha23&pagewanted=all

Mourning a husband who has not yet passed - Life stories - Salon.com

I had a life, and now it's gone. No, I'm not writing from the grave. I'm alive, and even reasonably well, but I seem to have lost my life -- you know, the one I've been living for the last five or six decades.

Can anyone really prepare us for the future? Does it really make a difference if someone tells a young girl that one day she'll find blood oozing from her body, or a young boy that he'll wake up with his PJs mucky from a wet dream, or a pregnant woman that birthing her child will be an experience of breathtaking agony, or a middle-aged person that one day she'll notice that her pubic hair has thinned to near baldness, or that we'll all get old and, one way or another, lose our life, even while we're still live.

I lost mine six months ago when I could no longer care for my husband's advancing dementia and sent him into care. Well, maybe I really lost it a couple of years before that, but I didn't know it then. He was here, sleeping in the same bed, eating at the same table, sitting at the same desk -- a living, breathing presence, if not a fully present one. His mind wasn't working so well, but the familiar body was fine, and his heart still tried to be what he had been. Until one day, he couldn't and I couldn't, and we both lost our lives -- only he doesn't know it.

We were close, but I wasn't one of those women of my generation who was defined by her marriage, by her husband's life and status. I had an independent life -- friends, work, travel -- and so did he. A couple of decades ago, Christopher Lasch described the family as a "haven in a heartless world." For us, it was such a haven, but our lives in the "heartless world" enriched and enlivened that haven and were a central part of the strength of our marriage and our family.

Now, he's gone -- and so is the haven. And the world does indeed seem more heartless. Yes, I still have my work, which can distract me from whatever pain and anxieties may beset me at the moment. But notice the language: It "can distract me." Not enliven and enrich me, but distract me. Worse yet, I can't always do it, can't summon it up as easily as I used to before Hank's dementia took a core part of my life.

I tell myself that I need to give in to the feelings, but I'm not even sure what they are. A certain emptiness, maybe fear. But fear of what? I can't say truthfully that I didn't feel some relief when Hank was safely settled in his new home, some sense of freedom to reclaim my life when he didn't need my attention so insistently. I was (still am) grateful not to have to rush home, after an hour or two away, wondering anxiously what I'd find when I opened the door.

Nor can I say that living alone is without its compensations. I don't feel that yearning loneliness I hear others speak of; I enjoy the solitude of it much of the time; and when I get tired of it, I have friends and family to lift me out. But I'm aware that there's an empty space -- not outside, not in the bed or at the dining room table, but inside me -- the space that Hank occupied for nearly a half century and whose presence there I'd come to depend upon.

Over decades as a psychotherapist (never mind living life), I've dealt with people suffering loss, read the literature on mourning, thought about Elisabeth Kübler-Ross's famous treatise on the subject, and wrote a response to it that was both admiring and critical. I remind myself of what I know, tell myself I'm in mourning, to let the feelings flow until they work themselves out and I come to terms with the new reality of my life. But mourning a real death is quite different from mourning a living one. Whatever one believes about death -- it's a passage into a kinder world, it's entry into nothingness, or anything in between -- it's still an undeniable fact. Death is finite; life, as we know it, is over. Yes, I know, people awaken with visions of visitations, but eventually we come to accept death as an end to life. But when the brain dies and leaves the body intact, there is no end.

A few days ago, I talked with a seventy-something man who spoke tearfully about his wife's recent death and his awkward attempts at coping with his new life as a widower and single man. I left our conversation feeling sad for him -- and also envious. At least, I thought, he knows what's ahead; he knows the meaning of the word "widower." But I'm a widow with a husband who's alive; I'm a single woman with the responsibilities of a wife; I have a future, but I have no idea what it will be or how to get there; and if my husband lives much longer, we'll go broke.

There, I've said it, the thought we dare not speak: My life would be easier if Hank had died. My impulse is to take it back, to wipe the words off the page, to retreat from the thought, pretend I never had it, and hope you'll forget I said it. But it would be adding another lie to all those words written these days about the selfless caretakers who think nothing of sacrificing their lives to a loved person who exists but doesn't live.

More ...

http://www.salon.com/life/feature/2011/02/02/living_with_husband_with_dementia/index.html

How Aggressive Is Your Hospital? - NYTimes.com

One morning during my training, I noticed that the belly of a patient in the I.C.U. had grown rounder and tighter overnight. The patient had gone through a difficult liver transplant a day earlier and was bleeding, it seemed, into his abdomen. I was the newest member of the transplant team, but even so, I knew what had to be done right away: We had to take this man back to the operating room.

But I hesitated for a moment. Not because I was unsure of whom to call or how to go about scheduling an emergency operation at the hospital. I paused because I wanted to brace myself for what I imagined would be the reaction of the surgeon in charge.

Wiry and impeccable in his person, the head surgeon of the transplant team was considered one of the finest, and most fearless, in his field. Patients whom others would have considered too far gone or who would have normally just lingered and died made Lazarean recoveries under this doctor's meticulous care. But my guess was that he wouldn't be happy to hear about a complication. Particularly one serious enough to require an urgent return to the operating room.

I was wrong. The doctor barely flinched when I told him the news. Instead of the blast of angry expletives I'd feared, I was greeted with a calm and simple request: "Book him for a take-back to the operating room."

When I later relayed the morning's events to a friend, another surgeon-in-training who was ahead of me in the same program by a year, he laughed. "It's not a lack of complications that makes a great surgeon," he said. "It's being aggressive about taking care of those complications."

Over the last few years, no other aspect of the health care system has lost its luster as much as aggressive care. Once considered a point of pride and a source of strength, aggressive care has now been transformed into the whipping boy for health care reformers of all stripes. Armed with data that shows geographic variations in spending and the outcomes of patients who have recently died, politicians from both sides of the aisle, administration officials and even insurers have transformed the nuanced caveats of the research into a broad "more-is-worse" rallying cry. In this heated environment, restricting payments to hospitals whose total expenditures, total I.C.U. days and total hospital days exceed the norm has become a foregone conclusion so appealing that even usually wary consumer watchdog groups have enthusiastically added their own licks.

The notion that aggressive care leads to worse outcomes has been easy to buy into because it seems to offer an easy remedy for spiraling costs while playing into our worst fears about overzealous health care providers.

But in journals and in newspapers there have been a few brave voices issuing cautions. And most recently one group of researchers has gone so far as to say that at least for one group of patients, hospitals that offer aggressive care are better than those that don't.

Analyzing the insurance claims data of more than four million Medicare patients admitted for vascular, orthopedic or general surgery operations, researchers from the University of Pennsylvania in Philadelphia and the University of Illinois in Chicago found no difference in the rate of complications for aggressive and nonaggressive hospitals. But when they looked at all the patients who had complications and examined their outcomes, the researchers found that regardless of the urgency of their operations, those patients who were cared for at more aggressive hospitals were significantly more likely to survive their complications than those who had their operations at less aggressive hospitals.

"There is something that is going right at those more aggressive hospitals," said Dr. Jeffrey H. Silber, lead author and a professor of pediatrics and health care management at the University of Pennsylvania and the Children's Hospital of Philadelphia. "Aggressive hospitals don't increase your chance of complications, but they decrease your chance of dying if you get a complication because you survive those complications better."

Referred to as "failure to rescue," the inability of a hospital to help its patients survive surgical complications may be a more accurate measure of quality than traditional indicators. Mortality rates, for example, are as dependent on the general health of a hospital's patient population as they are on the quality of care delivered. "The best hospitals are going to attract the sickest and most complicated patients, and that will inevitably taint mortality rates," Dr. Silber noted.

While Dr. Silber and his co-investigators found that a hospital's failure or success in treating surgical complications correlated consistently with factors that also characterized intensity of care — general expenditures, intensive care unit use and the total days of hospitalization — they found that benefits of this more aggressive care extended well beyond the time of the operation. "It's not like these patients were filled up with antibiotics only to die later," Dr. Silber said.

Clearly, lowering health care costs and increasing quality and efficiency will require approaches far more complex than broad penalties for hospitals that offer more aggressive care. "Most people have been saying that the health care system is too aggressive, implying that aggressiveness is bad because people are being operated on unnecessarily or too much stuff is being done on them and can harm them," Dr. Silber said. "But we have to do detailed research that compares the effectiveness of different treatment approaches, because aggressiveness is not necessarily bad and may in fact be sometimes associated with better outcomes."

He added, "We need to rein in expenditures, but we need to do it very carefully."

http://www.nytimes.com/2011/02/03/health/views/03chen.html

$1 Million Prize to Inventor of a Tracker for A.L.S., Lou Gehrig’s Disease - NYTimes.com

Tracking the inexorable advance of amyotrophic lateral sclerosis, the deadly neuromuscular ailment better known as Lou Gehrig's disease or A.L.S., has long been an inexact science — a matter of monitoring weakness and fatigue, making crude measurements of the strength of various muscles.

This imprecision has hindered the search for drugs that could slow or block the disease's progress. But now a neurologist at Beth Israel Deaconess Medical Center here has won a $1 million prize — reportedly the largest ever for meeting a specific challenge in medical research — for developing a reliable way to quantify the small muscular changes that signal progressive deterioration.

The winner, Dr. Seward Rutkove, showed that his method could cut in half the cost of clinical trials to screen potential drugs for the disease, said Melanie Leitner, chief scientific officer of Prize4Life, the nonprofit group that created the competition.

The method does not provide a target in the body at which to aim drugs, nor will it help doctors better diagnose the disease. But Dr. Merit Cudkowicz, a professor of neurology at Massachusetts General Hospital and a chairwoman of the Northeast A.L.S. Consortium, compared Dr. Rutkove's discovery to the way magnetic resonance imaging expedited the development of drugs for multiple sclerosis.

"You can use this as a tool to screen drugs to see if they will affect survival," she said, but added, "The ultimate prize is finding a drug that works for A.L.S."

Dr. Rutkove, 46, who has been treating patients with neuromuscular disease for 16 years, took advantage of the way our muscle fibers change electrical currents. With a hand-held device hooked up to electrodes on the patient's skin, a doctor can send a painless electrical current into a given muscle, then measure the voltage that results.

As A.L.S. spreads, motor neurons die off, causing muscles to atrophy. The deteriorating muscles behave differently from healthy ones, resisting the current less. In studies of humans as well as rats, Dr. Rutkove showed that these variations were closely correlated with disease progression and length of survival.

"It's not like it's the fanciest technology," he said. "But I truly believe it will help people."

Dr. Rutkove was inspired to become a doctor when, as a child, he watched his grandfather have an epileptic seizure while fixing a bicycle.

Each year, doctors diagnose about 5,000 new cases of A.L.S. in the United States, according to the National Institutes of Health. Despite decades of clinical trials, the diagnosis remains a death sentence. It paralyzes and suffocates patients while their minds remain intact.

A few patients live for decades — the physicist Stephen Hawking is the best known — but most survive only three to five years after they first notice symptoms. And riluzole, the only A.L.S. drug approved by the Food and Drug Administration, costs about $10,000 a year and typically extends life by just a few more months.

The high cost of clinical trials limits drug companies' ability to test potential treatments. Researchers must recruit hundreds of patients and run trials that last as long as two years just to eliminate a drug from the running.

"One executive told us, 'For the cost of one A.L.S. drug I can develop two multiple sclerosis drugs, so obviously I go with M.S.,' " wrote Avi Kremer, the 35-year-old founder of Prize4Life.

Mr. Kremer, who has the disease himself (he was given the diagnosis in 2004, while a student at Harvard Business School), cannot speak or type. He made the remark during a Skype video chat from his apartment in Haifa, Israel, using a sensor that tracks his forehead as he lifts his eyebrows.

Dr. Doug Kerr, associate director of experimental neurology at Biogen Idec, which is working on an A.L.S. drug, said more sensitive testing methods "will allow us to test more drugs, more patients, and get an answer earlier." He called Dr. Rutkove's method "a powerful new part of the armament to study A.L.S."

Researchers say the $1 million prize, to be presented to Dr. Rutkove in June at a ceremony in New York, is the largest ever awarded for solving a prescribed challenge in medical research. (The Nobel and Lasker awards are given retrospectively, rather than in response to a challenge.)

This kind of prize is hardly new. In the 18th century, such a challenge spurred a solution to Newton's famous problem of how to determine longitude at sea. (A clockmaker, John Harrison, won the competition by inventing the marine chronometer.) And Charles Lindbergh's nonstop flight across the Atlantic was prompted by a competition, the $25,000 Orteig Prize.

Now these sorts of challenges are coming back into fashion. In December, Congress passed a law authorizing federal agencies to use prize competitions as a complement to grants and contracts.

Competitions can draw new eyes to old problems; among the Prize4Life contestants was a dermatologist from Buffalo who was driven to look for a skin-based biomarker for A.L.S. after he noticed that patients with the disease did not get bedsores.

The danger of a prize competition, on the other hand, is that "if you make the wrong choices, you might be leading people in the wrong direction, or to an R. & D. cul-de-sac," said Paul A. Wilson, a professor at the Mailman School of Public Health at Columbia University. Dr. Wilson has studied the potential of using a prize to encourage development of a tuberculosis diagnostic tool cheap and simple enough to use in rural Africa.

Dr. Rutkove said his work had been under way, and supported by public financing, before he heard of the prize. But he added that the challenge turned his focus toward reducing the cost of clinical trials and sped up his analysis.

The lure of a prize competition is that it can set off a race to achieve what is just beyond reach.

"It is not unlike President Kennedy succinctly challenging us to put a man on the Moon," said Dwayne Spradlin, chief executive of InnoCentive, a matchmaking company for problem solvers and seekers of solutions that helped promote the Prize4Life contest.

For A.L.S. patients like Mr. Kremer, of course, the biggest challenge remains: to survive.

http://www.nytimes.com/2011/02/08/health/08als.html?hpw