Thursday, April 18, 2013

Why Boston's Hospitals Were Ready- Atul Gawande - The New Yorker

The bombs at the Boston Marathon were designed to maim and kill, and they did. Three people died within the first moments of the blast. More than a hundred and seventy people were injured. They had their limbs blown off, vital arteries severed, bones fractured, flesh torn open by shrapnel or scorched by the blasts' heat. Yet it now appears that every one of the wounded alive when rescuers reached them will survive.

Medically speaking, this is no small accomplishment. We've seen bombs like this in the battlefields of the Middle East, but rarely in cities like Boston. In the past century of wartime conflict, explosive devices have escalated to become the predominant cause of military casualties. Among American personnel wounded in our wars in Iraq and Afghanistan, they have accounted for three-quarters of injuries; gunshot wounds for just twenty per cent. It has been an historic accomplishment for military medical units to bring case-fatality rates from such injuries down from twenty-five per cent in previous conflicts to ten per cent today. And according to data from the Israeli National Trauma Registry, explosives used in terror attacks have tended to be three times deadlier than those used in war—because civilians don't have armor, because victims span a wider range of age and health, and because preparedness tends to be less systematic. Nonetheless, in Boston, they survived.

How did this happen? Something more significant occurred than professionals merely adhering to smart policies and procedures. What we saw unfold was the cultural legacy of the September 11th attacks and all that has followed in the decade-plus since. We are not innocents anymore.

The explosions took place at 2:50 P.M., twelve seconds apart. Medical personnel manning the runners' first-aid tent swiftly converted it into a mass-casualty triage unit. Emergency medical teams mobilized en masse from around the city, resuscitated the injured, and somehow dispersed them to eight different hospitals in minutes, despite chaos and snarled traffic.

My hospital, the Brigham and Women's Hospital, received thirty-one victims, twenty-eight of them with significant injuries. Seven arrived nearly at once, starting at 3:08 P.M. All required emergency surgery. The first to go to surgery—a patient in shock, hemorrhaging profusely, with inadequate breathing and a near-completely severed leg—was resuscitated and on an operating table by 3:25 P.M., just thirty-five minutes after the blast. The rest followed, one after the other, spaced by just minutes. Twelve patients in all would undergo surgery—mostly vascular and orthopedic procedures—before the evening was done.

This kind of orchestration happened all across the city. Massachusetts General Hospital also received thirty-one victims—at least four of whom required amputations. Boston Medical Center received twenty-three victims. Beth Israel Deaconess Medical Center handled twenty-one. Boston Children's Hospital took in seven children, ages two to twelve. One emergency physician told me he'd never heard so many ambulance sirens before in his life.

There's a way such events are supposed to work. Each hospital has an incident commander who coördinates the clearing of emergency bays and hospital beds to open capacity, the mobilization of clinical staff and medical equipment for treatment, and communication with the city's emergency command center. At my hospital, Stanley Ashley, a general surgeon and our chief medical officer, was that person. I talked to him after the event—I had been out of the city at the time of the explosions—and he told me that no sooner had he set up his command post and begun making phone calls then the first wave of victims arrived. Everything happened too fast for any ritualized plan to accommodate.

So what did you do, I asked him.

"I mostly let people do their jobs," he said. He never needed to call anyone. Around a hundred nurses, doctors, X-ray staff, transport staff, you name it showed up as soon as they heard the news. They wanted to help, and they knew how. As one colleague put it, they did on a large scale what they knew how to do on a small scale. They broke up into teams of six or so people, one trauma team for each patient. A senior nurse and physician stood at the door to the ambulance bay triaging the patients going to the teams. The operating-room director handled triage to, and communication with, the operating rooms. Another staff member saw the need for a traffic cop and began shooing extra clinicians into the waiting room, where they could stand by to be called upon.

Richard Wolfe, the chief of the emergency department at Beth Israel Deaconess Medical Center, told me he had much the same experience there. Of twenty-one casualties, seventeen were serious and seven required emergency surgery. One patient came in with both legs almost completely amputated already. Another's leg was too mangled to save. Numerous victims had open, bleeding wounds, with shrapnel and shards of fractured bone. One had a lung injury from the blast. Another was burned on over thirty per cent of the body. One had to have an eye removed. Wolfe arrived in the emergency department expecting to take charge of assigning everyone responsibilities.

"But everybody spontaneously knew the dance moves," he said. He didn't have to tell people much of what to do at all.

I spoke to Deb Mulloy, the nurse in charge of our operating rooms that afternoon, and a few of the other nursing leaders to find out how they knew the dance moves. Mulloy began mobilizing as soon as she saw the news flash onto a television screen. Others learned through Twitter, text messages, smartphone news apps. They all began to act before the alarm had been sounded.

"We just knew this was real," Mulloy said, "and a lot of people could be hurt."

Change of nursing shift is at three o'clock. So she immediately notified the day shift to stay on. No one wanted to leave, anyway. This doubled the available staff.

The nurses put all scheduled surgery on hold and began readying eight rooms. They ordered equipment trays for vascular and orthopedic procedures to be brought up from stock supply. They called an orthopedics-manufacturer representative for extra hardware to be mobilized. They got in touch with the blood bank, which was already securing blood from other states. They communicated with other operating rooms around the city to make sure they had enough supplies of equipment, too.

How did they know to get eight rooms ready, I asked. And how did they know to get them ready for vascular and orthopedic procedures? "Did someone tell you?"

"No," said Brenda McKonly, one of the senior nurse leaders. She just saw the descriptions of the explosion like everyone else, made a surmise about the injuries, and recognized that they needed to get as many rooms ready as they could. To be on the safe side, the staff also got equipment for one room to be ready for a neurosurgical injury and another for a thoracic injury. But as word filtered down from the emergency department, it became clear that their original surmise was correct. All eight rooms would be required, and nearly all the cases involved vascular and orthopedic injuries.

Talking to people about that day, I was struck by how ready and almost rehearsed they were for this event. A decade earlier, nothing approaching their level of collaboration and efficiency would have occurred. We have, as one colleague put it to me, replaced our pre-9/11 naïveté with post-9/11 sobriety. Where before we'd have been struck dumb with shock about such events, now we are almost calculating about them. When ball bearings and nails were found in the wounds of the victims, everyone understood the bombs had been packed with them as projectiles. At every hospital, clinicians considered the possibility of chemical or radiation contamination, a second wave of attacks, or a direct attack on a hospital. Even nonmedical friends e-mailed and texted me to warn people about secondary and tertiary explosive devices aimed at responders. Everyone's imaginations have come to encompass these once unimaginable events.

Hence the grim efficiency with which the city responded. Organizers halted the race. Runners who'd trained for weeks for the event turned away from the finish line in bewildered but stoic acceptance. The press, for the most part, rightly hesitated to amplify unsubstantiated claims about the identity of the perpetrators.

Risks of further attack required assessment. Panic had to be averted. Criminal evidence had to be secured. And above all, victims needed to be saved.

What prepared us? Ten years of war have brought details of attacks like these to our towns through news, images, and the soldiers who saw and encountered them. Almost every hospital has a surgeon or nurse or medic with battlefield experience, sometimes several. Many also had trauma personnel who deployed to Haiti after the earthquake, Banda Aceh after the tsunami, and elsewhere. Disaster response has become an area of wide interest and study. Cities and towns have conducted disaster drills, including one in Boston I was involved in that played out the scenario of a dirty-bomb explosion at Logan Airport on an airliner from France. The Massachusetts General Hospital brought in Israeli physicians to help revamp their disaster-response planning. Richard Wolfe at the Beth Israel Deaconess recalled an emergency physician's presentation of the medical response required after the Aurora, Colorado, movie-theatre shooting of seventy people last summer. From 9/11 to Newtown, we've all watched with not only horror but also grave attention the myriad ways in which the sociopathy of killers has combined with the technology of inflicting mass casualty.

We've learned, and we've absorbed. This is not cause for either celebration or satisfaction. That we have come to this state of existence is a great sadness. But it is our great fortune.

Last year, after the Aurora shooting, Ron Walls, the chief of emergency medicine at my hospital, gave a lecture titled "Are We Ready?"

In Boston, it turns out we all were.

Wednesday, April 17, 2013

Surgeon’s suit over criticism posted online by patient’s husband is part of wave of such claims - Metro - The Boston Globe

During Lyn Votour's struggle against bone cancer and a cascade of complications, her husband slept with her in the intensive care unit for nine weeks. Back home in Central Massachusetts, he changed her bandages, replaced her feeding tube, and shielded her from debt collectors.

And as she lay dying on the hospital bed in their living room, he snuggled beside her, holding her hand.

They had been married 26 years, and his wife's death at age 46 overpowered Gary Votour with doubt and rage. He was furious at himself for allowing her to have surgery, during which she had a stroke, at friends who didn't visit, and at his wife's neurosurgeon.

Believing that airing his concerns would help him heal, Votour requested a meeting with the surgeon at Brigham and Women's Hospital. When the surgeon turned him down, Votour's psychiatrist urged him to write her an "open letter'' online, detailing his concerns about his wife's medical care.

He got a response, just not the one he had hoped for.

Last month, the surgeon, Dr. Sagun Tuli, sued Votour and the owner of the website for defamation in Middlesex Superior Court, demanding $100,000 for the damage she said the blog post had done to her career. Her lawyer, David Rich of Boston, said Votour's blog popped up on the first page of Google search results for Tuli, who now works at MetroWest Medical Center in Framingham. Votour has since removed the blog post.

"It's difficult to believe we have a legal system that allows people to be sued for expressing their grief,'' Votour said in an interview.

Lyn Votour was diagnosed with a rare bone cancer after an accident in 2005.

Tuli's lawsuit is part of a gathering wave of claims brought by doctors against former patients, and sometimes their relatives, over negative ratings and reviews they have posted on the Internet, lawyers say.

Not only have personal blogs proliferated, but consumer sites such as Yelp and Angie's List allow patients to rate and comment on their physicians. These sites are viewed by thousands of people who increasingly rely on them to choose doctors.

David Ardia, codirector of the Center for Media Law and Policy at the University of North Carolina, said the Internet "has realigned the power structure that existed between doctors and patients,'' giving patients far more influence than they have ever had. "The Web is just chock-full of people commenting on their experiences. Doctors have reacted with a great deal of hostility toward this.''

A quick perusal of Yelp reveals the kind of comments that are riling doctors. "Fast, Central, Misguided," said one comment about a Copley Square practice. "Decent for your quickfixmedtricks but leaves a bit to be desired in taking the time to truly understand the ailment."

Wrote another commenter about a Fenway office: "I feel much more like a number than a human being there."

The Digital Media Project at Harvard University tracks lawsuits filed against patients and others for online comments. Its website includes seven such cases filed over the past five years or so, though it's not a comprehensive list. In some, patients took down their negative comments. In others, judges dismissed the suit, ruling that patients' comments were protected under the First Amendment guarantee of free speech.

In one 2011 case, Dr. Aaron Filler, a neurosurgeon, sued a former patient in a Los Angeles court for posting negative comments about him on rating sites such as, including that he posed an unusually high risk of death to patients. A judge dismissed Filler's suit, deciding that the patient was exercising free speech on a public issue, and ordered the doctor to pay $50,000 in legal fees.

Doctors feel they are at a disadvantage in responding to negative reviews because medical privacy laws forbid them from discussing a patient's care in public — a limitation that hotels, restaurants, and other often-rated businesses and professionals don't face. They also worry that their explanations could be used against them in a malpractice suit — although a new Massachusetts law protects doctors' apologies.

Dr. Richard Aghababian, president of the Massachusetts Medical Society, believes rating websites present a skewed picture of doctors because patients are more likely to post about negative experiences — even though they may be rare. "For surgeons, their reputation is very important," he said. "We don't want to discourage them from taking on really tough cases because they don't want to ruin their ratings.''

Companies have cropped up to help doctors fight back. specializes in disputing negative online ratings. gathers reviews from a doctor's patients and posts them on the Internet.

Ultimately, some doctors file lawsuits to try to protect their names, despite what Ardia calls "the reputational cost'' of going to court, a step that often brings even more attention to the negative review.

While the rating sites are generally immune from libel claims, said Sandra Baron, executive director of the Media Law Resource Center in New York, individuals who post comments are not. In general for a doctor to win such a suit, she said, the statements made by the patient have to be shown to be false and to have hurt the doctor's reputation.

Most lawsuits filed by doctors against patients or their families arise from a soured relationship, and that certainly seems true for the Votours and Tuli.

In March 2005, Lyn Votour was driving to her job counseling troubled youth when her car skidded on black ice and crashed. An ambulance rushed her to a local hospital, and tests on her neck eventually discovered a rare bone cancer unrelated to the accident.

An oncologist at Brigham referred her to Tuli to have some of her vertebrae removed, a complicated and rare operation. During a second surgery, Votour suffered a stroke that paralyzed the left side of her body.

The Votours and Tuli seemed to work well together at first. Tuli, for example, supported allowing Gary Votour to sleep in the ICU for an extended period, an unusual practice.

But after Lyn Votour was discharged to Spaulding Rehabilitation Hospital, the couple's relationship with Tuli deteriorated, according to Gary Votour. His wife was eventually discharged to the couple's home in Barre in July 2006 with a feeding tube and a breathing tube.

More than two years later, depressed and in pain, she asked her husband to remove her feeding tube, he said. Soon she stopped talking, he wrote on the blog, except for "one brief lucid moment when she thanked me for letting her go and made me promise to move on with my life and try to find happiness again.'' She died days later, in October 2008.

"I was not doing well with grief,'' he said in an interview. "I wanted to go back and talk to Dr. Tuli about some questions that were bothering me. I really wanted to ask her why don't doctors follow up after discharge. I wanted to understand why doctors just wash their hands after discharge.''

Votour contacted a patient advocate at the Brigham, who said she would arrange a meeting. But the advocate called back and said Tuli had declined to meet, Votour said.

Rich, her attorney, said a Brigham lawyer told Tuli not to meet with Votour.

A hospital spokeswoman, Erin McDonough, said in a written statement that a log kept by the patient advocate "documents that Dr. Tuli indicated that she was not comfortable meeting with Mr. Votour. . . . The hospital's records clearly indicate it was her decision.'' The hospital lawyer said she never spoke to Tuli about Votour's request, McDonough said.

Frustrated, Votour put up his blog in March 2010 and e-mailed a link to Tuli and other Brigham staff who had cared for his wife.

In his post, Votour criticized Tuli for not visiting his wife at Spaulding, according to a copy of the blog included in the lawsuit. He wrote that the surgeon called their home once after her discharge but did not offer to help coordinate her care, and that Spaulding doctors and others urged him to file a lawsuit against Tuli. At another point, he said he lost his wife "not to cancer but to indifference and egotism.''

In the lawsuit, Tuli said these statements are false and defamatory. In written comments, Rich said that patient privacy laws prevent Tuli from discussing the reasons for the stroke, but according to the blog, she told the Votours it was caused by a preexisting tear in the heart.

Rich wrote that Votour completely misunderstood how discharge planning works at large hospitals. Tuli, Rich said, did not have privileges to treat his wife at another hospital and they lived too far away for her to provide follow-up care.

Rich said Tuli was surprised by the blog, because Votour had previously written e-mails complimenting her care of his wife. After Lyn Votour's stroke, Tuli "spent 12 hours with Votour and was completely responsive and sympathetic,'' Rich said.

Tuli, who won a $1.6 million jury award against the Brigham and the chief of neurosurgery in 2009 for gender discrimination, left the hospital in 2011.

Rich called the lawsuit a last resort — lawyers for Tuli initially asked Gary Votour to take down his blog in 2010. Votour took down the blog in February. He said his client hopes to "work out some amicable solution.'' But she wants Votour to sign an agreement not to write about her again — something he has refused to do.

People have expressed concern to Tuli about what they read on Votour's blog, Rich said, and some have certainly been dissuaded from seeking her out as a surgeon. "If you are thinking of hiring someone or working with someone, the first thing you do is Google her name,'' he said.

In the end, Ardia said, doctors will not find satisfaction through the courts, but by using the Internet to their advantage — encouraging happy patients to write online reviews and trying to address the concerns of those who are not. "The ultimate solution is engagement and realizing that not every patient is going to be happy.''

Votour, who still owes $25,000 to credit card companies for expenses related to his wife's care, has moved to Columbia, S.C., where he earned a master's degree in hospital administration. He now works as a patient advocacy consultant. He named his company Fierce Advocacy.

Why We're Motivated to Exercise. Or Not. -

If you give a rat a running wheel and it decides not to use it, are genes to blame? And if so, what does that tell us about why many people skip exercise?

To examine those questions, scientists at the University of Missouri in Columbia recently interbred rats to create two very distinct groups of animals, one of which loves to run. Those in the other group turn up their collective little noses at exercise, slouching idly in their cages instead.

Then the scientists closely scrutinized and compared the animals' bodies, brains and DNA.

For some time, exercise scientists have suspected that the motivation to exercise — or not — must have a genetic component. When researchers have compared physical activity patterns among family members, and particularly among twins, they have found that close relations tend to work out similarly, exercising about as much or as little as their parents or siblings do, even if they grew up in different environments.

These findings suggest that the desire to be active or indolent is, to some extent, inherited.

But to what extent someone's motivation to exercise is affected by genes — and what specific genes may be involved — has been hard to determine. There are only so many human twins around for study purposes, after all. And even more daunting, it's difficult to separate the role of upbringing from that of genetics in determining whether and why some people want to exercise and others don't.

So the University of Missouri researchers decided to create their own innately avid runners or couch potatoes, provide them with similar upbringings, and see what happened next.

They began with ordinary adult male and female lab rats. These rats generally embrace the opportunity to run, although individual mileage can differ substantially among rats.

The scientists put running wheels in the animals' cages and, for six days, tracked how much they ran. Afterward, the males and females that had logged the most miles were bred to each other, while those who'd run the least were likewise paired. Then the pups from each group were bred in a similar way, through 10 generations.

At that point, the running rats tended to spontaneously exercise 10 times as much as the physically lazier animals.

Now, the researchers set out to determine why.

In very broad terms, two elements are especially likely to influence whether we, as individuals, habitually exercise or not. One is physique. Animals or people that are overweight or ill, or who have poor muscle quality or tone or other physiological impediments to activity, tend to be sedentary. If moving is difficult, you don't do it.

So, the researchers now compared their two sets of animals' bodies. You might expect that after 10 generations of running frequently or running almost not at all, the animals' builds would be substantially different. But they weren't. The non-runners were slightly heavier, but the two groups' average body compositions, or percentage of muscle versus fat, were very similar. Both groups also had similarly healthy muscles and good appetites.

Differences in physique were not driving differences in exercise behavior.

So the researchers began to examine the other primary determinant of exercise behavior: psychology. How closely rats' emotions echo our own, if at all, is hard to know. But the runners in this experiment did seem to enjoy running, while rats in the other group appeared to want to avoid it.

And it was here that genetics entered. The scientists compared the activity of thousands of genes in a specific portion of the brain that controls reward behavior, or the motivation to do things because they're enjoyable.

They found dozens of genes that differed between the two groups.

The rats' decision to run or not to run, in other words, was being driven, at least in part, by the genetics of motivation.

What this study means for those of us with two legs and many excuses for not making it to the gym is not yet clear. "It does seem likely that there is a genetic element to the motivation to exercise," in people as well as in rats, says Frank Booth, a professor of physiology at the University of Missouri who oversaw the study.

But whether the same genes are involved in people as in lab rats isn't known, although part of the rationale for developing these strains of rats is to isolate genes that can be tested for in people.

At some point, Dr. Booth says, scientists conceivably could develop a test that would reliably inform someone whether he or she is genetically predisposed to being physically lazy, or the reverse.

But genetic profiles will never be destiny, Dr. Booth adds. His study's findings "are not meant to be an excuse not to exercise." Behavior, he says, remains a mix of innate tendencies and personal choice. So, even if it is in your nature to enjoy long hours on the couch, you can choose to get up and move.

Physical Legacy of Bomb Blasts Could Be Cruel for Boston Marathon Victims -

BOSTON — So many patients arrived at once, with variations of the same gruesome leg injuries. Shattered bones, shredded tissue, nails burrowed deep beneath the flesh. The decision had to be made, over and over, with little time to deliberate. Should this leg be amputated? What about this one?

"As an orthopedic surgeon, we see patients like this, with mangled extremities, but we don't see 16 of them at the same time, and we don't see patients from blast injuries," Dr. Peter Burke, the trauma surgery chief at Boston Medical Center, said.

The toll from the bombs Monday at the Boston Marathon, which killed at least three and injured more than 170, will long be felt by anyone involved with the city's iconic sporting event. For the victims, the physical legacy could be an especially cruel one for a group that was involved in the marathon: severe leg trauma and amputations.

"What we like to do is before we take off someone's leg — it's extremely hard to make that decision — is we often get two surgeons to agree," Dr. Tracey Dechert, a trauma surgeon at Boston Medical, said. "Am I right here? This can't be saved. So that way you feel better and know that you didn't take off someone's leg that you didn't have to take. All rooms had multiple surgeons so everyone could feel like we're doing what we need to be doing."

The widespread leg trauma was a result of bombs that seemed to deliver their most vicious blows within two feet off the ground. In an instant, doctors at hospitals throughout the city who had been preparing for ordinary marathon troubles — dehydration or hypothermia — now faced profound, life-changing decisions for runners and spectators of all ages.

Some victims arrived two to an ambulance, some with huge holes in their legs where skin and fat and muscle were ripped away by the bomb and with ball bearings or nails from the bombs embedded in their flesh. Others had severed arteries in their legs or multiple breaks in the bones of their legs and feet. The shock wave from the blast destroyed blood vessels, skin, muscle and fat. And at least nine patients — five at Boston Medical Center, three at Beth Israel Deaconess Hospital and one at Brigham and Women's Hospital — had legs or feet so mangled they would need to be amputated.

Some of the attendant medical professionals, said Julie Dunbar, a chaplain at Beth Israel, were faced with "more trauma than most ever see in a lifetime, more sadness, more loss."

There were only three fatalities, which doctors say was because the blast, low to the ground, mostly injured people's legs and feet instead of their abdomens, chests or heads. And tourniquets stopped what could have been fatal bleeding in many.

Dr. Allan Panter, 57, an emergency-room physician from Gainesville, Ga., was standing 10 yards from the blast near the finish line, waiting for his wife, Theresa, to complete her 16th Boston Marathon. Assisted by others, he said he used gauze wraps to apply tourniquets to several victims, including a man who appeared to be in his late 20s who lost both of his lower legs in the blast. He said he saw another six or seven victims with belts tied around their wounded legs.

Tourniquets, once discouraged because they were thought to cause damage to injuries, have returned to favor and have been used to treat wounds inflicted by explosive devices in the wars in Iraq and Afghanistan, Dr. Panter said.

"With blast injuries to the lower extremities that we're getting in the Middle East, you bleed out," he said. Tourniquets "can help save lives. I don't know if they helped in this situation, but it sure couldn't hurt."

While there was some initial chaos in a medical tent near the finish line, and some screaming and moaning by victims, it was generally an orderly scene, Dr. Panter said. He assisted others in wheeling in a female victim who died, he said. He described 20 to 30 cots in the tent with IV bags that had been intended for dehydrated runners.

At least eight doctors and what seemed to be 20 or more nurses were stationed in the tent. A man with a microphone stood in the center of the tent to coordinate medical care. Arriving victims were assessed and categorized as 1 for critical, 2 for intermediate, 3 for "can wait" and "black tag" for anyone who appeared to be dead, Dr. Panter said. An emergency medical technician outside the tent coordinated ambulance service to hospitals.

"All in all, it was a pretty controlled environment," said Dr. Panter, who has been an emergency-room physician for 30 years. "I've seen a lot worse. They were without question ready — not ready for those type of injuries, but they were prepared."

Once victims were transported to Boston's hospitals, doctors had to carefully coordinate their response. Each has a story of where they were when the bombs went off and how they rushed to help and how, in some cases, they somehow just missed being victims themselves.

Dr. Alok Gupta, who directed the surgical response at Beth Israel, said he often goes to the finish line of the marathon to watch the race. But this year he was so tired that he took a nap. Then he heard ambulance sirens and helicopters outside his home in Back Bay, near the marathon finish. He was just beginning to wonder why the sirens had not dissipated and why the helicopters were hovering when his cellphone rang.

"The call was broken up," he said. "All I heard was 'mass casualty.' " And "we need you," he said.

He was out of the house in less than a minute and at the hospital five minutes later. Then he and his colleagues set to work. They cleared the emergency room, sending home those who could leave and sending others to beds elsewhere in the building. They cleared intensive care, sending patients to other areas of the hospital. Dr. Gupta directed a central command.

"Surgeons were notified, emergency-room physicians were notified, operating-room personnel were notified, everyone was notified," he said. Cellphone service in Boston had been limited to prevent terrorists from using cellphones to detonate any more bombs, so doctors, nurses and other medical professionals were contacted with text messages.

About 10 minutes later, patients began to arrive. Each was put in a room and assessed. Doctors described the situation as calm and efficient.

Seven patients at Beth Israel went directly to the operating room for emergency surgery to stabilize them, stopping bleeding for example. Five went to intensive care. At Brigham and Women's Hospital, six patients went to the operating room and nine to intensive care.

"I think a lot of these injuries are so devastating, it was pretty straightforward — they weren't going to be able to salvage these things," said Dr. Burke of Boston Medical Center. "We all would like to salvage whatever extremities we can, but one thing we've learned in trauma is when you get too much damage, you can create too much hassle, so you may get the amputation but it may be a year down the line. Ten operations, failed operations, addictions to narcotics for the chronic pains, all these kinds of things." An early amputation, Dr. Burke added, can mean a quicker return to a normal life.

Borrowing a tactic used by the military in Iraq, doctors at Beth Israel used felt markers to write patients' vital signs and injuries on their chests — safely away from the leg wounds — so that if a patient's chart was misplaced during a transfer to surgery or intensive care, for example, there would be no question about what was found in the emergency room.

Those who needed surgery would often need more than one operation on subsequent days. Those with huge blast wounds that ripped out skin and muscle would need plastic surgery. Those with severed arteries would need surgery, too.

Most of the injured taken to Beth Israel were no older than 50, said Dr. Michael Yaffe, a trauma surgeon at the hospital. A few were runners, but most were spectators who had prime viewing positions near the finish line.

At about 2 a.m. on Tuesday, the Beth Israel medical team left for home, to return again at 6. They examined each patient before they left and again when they returned. Often, in trauma, the doctors said, patients will not notice some of their injuries until the major injury is taken care of.

The Boston Marathon is so special, a day to celebrate athleticism and the thrill of the sport. For those runners who trained for months and now can be facing months or years or rehabilitation, and the end of their running days, the bombs took away "the thing they loved," Dr. Yaffe said.

In the moments after the explosions, some patients recalled that they "thought they would die as they saw the blood spilling out," said Dr. George Velmahos, chief of trauma services at Massachusetts General Hospital. When they awoke Tuesday and realized they were still alive, they said they felt extremely thankful, some even considering themselves lucky, Dr. Velmahos said.

 "It's almost a paradox," he said, "to see these patients without an extremity to wake up and feel lucky."

Tuesday, April 16, 2013

Crowd diagnosis could spot rare diseases doctors miss - New Scientist

Shortly after a backpacking trip in Michigan in 2009, 20-year-old Sarah Sheridan came down with what seemed to be a nasty case of the flu. Unlike the flu, however, her symptoms only got worse with time. Blood tests, MRI scans, spinal taps and other investigations came back normal or inconclusive.

Sheridan spent the next three years in and out of hospital, all to no avail. Her insurance claims swelled to over $100,000. It wasn't until a chance encounter with someone who'd had Lyme disease that she finally found relief.

New web-based tools seek to spare others from a similar ordeal. CrowdMed, launched on 16 April at the TedMed conference in Washington DC, uses crowds to solve tough medical cases.

Anyone can join CrowdMed and analyse cases, regardless of their background or training. Participants are given points that they can then use to bet on the correct diagnosis from lists of suggestions. This creates a prediction market, with diagnoses falling and rising in value based on their popularity, like stocks in a stock market. Algorithms then calculate the probability that each diagnosis will be correct.

In 20 initial test cases, around 700 participants identified each of the mystery diseases as one of their top three suggestions.

Among them was Sheridan's case, which was solved in a week – around 100 users proposed Lyme disease as the top ranking diagnosis. "To get an answer in just a week is exciting, astounding and incredibly frustrating," Sheridan says. "I keep thinking, 'Where were you three years ago?' It really would have changed the course of my life."

The goal is to help people who come down with any of around 7000 "rare diseases" as defined by health agencies in Europe and the US. In Europe alone, 30 million people have a rare disease, 40 per cent of whom either go undiagnosed or are misdiagnosed at some point.

Once the crowd arrives at a consensus, CrowdMed gives patients a list of the top three, which they can then explore with their physician. Those whose diagnosis proves to be correct earn more points, which can be used to bet on future cases.

Frustrated patients and doctors can also turn to FindZebra, a recently launched search engine for rare diseases. It lets users search an index of rare disease databases looked after by a team of researchers. In initial trials, FindZebra returned more helpful results than Google on searches within this same dataset.

"Medical students and doctors can't learn about all of these thousands of diseases with very low prevalence," says Radu Dragusin, one of FindZebra's developers and a computer scientist at the University of Copenhagen in Denmark. "It's very important to give clinicians an aid, be it FindZebra or CrowdMed, to help make these diagnoses." He adds, however, that he thinks CrowdMed would work best if most of its users had some medical expertise or research knowledge.

IBM's Watson artificial intelligence system is already being used to help doctors wade through mountains of fast-changing medical research on cancer. Claudia Perlich, who helped develop Watson, imagines it teaming up with CrowdMed to work on tough diagnoses.

"If Watson could get hold of what people submit to CrowdMed, I would love it," she says. "I absolutely agree with the premise that the big problem of the medical system is that we don't have sufficient information sharing."

Diagnoses without borders

Early in Sarah Sheridan's quest to diagnose her mystery illness, her doctors often focused on a trip she took to East Africa, rather than a backpacking excursion, where she likely encountered a tick that gave her Lyme disease (see main story).

Diagnostic tools like CrowdMed, can also attract worldwide input that confuses the issue. When initial CrowdMed tests included users from outside the US, Sheridan's case was flagged as malaria, which is nearly nonexistent in North America, though it has similar symptoms.

To avoid this problem, CrowdMed's founder, Jared Heyman, has limited input on cases to users from North America for now, though he plans to expand to different regions soon.

What It’s Like to Be in a Boston Emergency Room Today - The Daily Beast

As yesterday's statistics in Boston—three dead, more than 100 seriously injured—turn into specific, heartbreaking human stories, the role of the emergency rooms scattered throughout Boston will fade quickly into the background. This is as it should be; emergency health care is the job of the emergency room, after all. But the roles of hundreds of doctors, nurses, and other staff will be forever traumatized by what they witnessed, as described so vividly in December after the Newtown shootings.

I worked as an attending doctor in New York City ERs for four years, but I never had to deal with anything like what Boston's ERs handled yesterday. You just don't see these types of injuries in an urban American hospital. In fact, ERs are usually boring places to work. Yes, there are moments of TV-worthy drama and tension, but in general, serviceable health care is delivered as quickly as possible with a forced smile.

But then comes the momentous tragedy of April 15, and everyone's frame of reference is changed. I cannot imagine the sort of mayhem and fear, as well as nausea and tears, the ER staffs across Boston must have experienced. No one is ready for anything like this—the missing limbs, the bleeding, the shrapnel, the smell of burnt flesh, which once experienced remains forever present. Plus, there was an apparent concern that hospitals themselves might be targets of additional bombs, given the reports of SWAT teams in and around hospitals in the early aftermath.

The ordering of just what to do when so many people who are so sick roll in the front door requires a level of teamwork and triage that civilian hospitals simply cannot prepare for. Thankfully, the Boston blood supply was replenished quickly by volunteers, but victims of this tragedy have, by report, suffered an unusual number of detached limbs. This latter, chilling detail relates to the force of the bombexploded in a dense crowd. Though grizzly to consider, the main trauma of, for example, the Oklahoma City bombing of 1995 was the Murrah building collapsing onto those within. Though limbs might have been lost by the initial explosion from Timothy McVeigh's bomb, the people were subsequently crushed as the building fell apart. On this Boston afternoon, though, it was the incredible force of the bomb, as well as the broken glass, that caused most of the injuries.

As for the reattachment of missing limbs and fingers, unfortunately the chaos that ensued after the explosions makes this just about impossible. In the best situation, a single individual loses an extremity and so a quick search can be made for the limb while the patient is stabilized. The Copley Square descriptions, however, suggest there was flesh everywhere. Even the basic task of matching the correct limb to the patient was not assured. On arrival to the hospital many amputations then had to be done, not to smooth away a traumatically amputated limb but rather to remove a hopelessly mangled and dysfunctional extremity that would only serve as a source for infection and complication. The many people now without legs or arms eventually will be fitted with prostheses and will start the long, painful road of rehabilitation.

At terrible moments like this, ERs call on an unexpected resource: those people who are literal war veterans, people who were medics or physicians in Iraq or Afghanistan or Vietnam, who have learned to survive in the MASH-like unreality of medical crisis. They typically step forward to calm the nerves, ease the panic, and provide rapid decisiveness for those too stunned to react. Their readiness to step into the unimaginable is itself a bitter irony, given that each of them lost so much in the past to be able to help in the present.

By all accounts, the various ERs in Boston did a superlative job doing as much as they could for the many patients delivered to their doors. Hopefully, those critically ill at present will stabilize and the death toll will stay at three. That said, there is almost no silver lining to be found in the brutal event of yesterday except perhaps this: emergency rooms are strange living organisms with a long memory and a vast oral tradition of stories, some true, some less so, of what the staff there has seen and done.

For example, in my medical school an older surgeon would tell each successive group of bright-eyed, 23-year-old kids about his experience in the Parkland Hospital ER in Dallas that day in 1963 when JFK was brought in. He told us what he and his surgical colleagues had done to try to save the president. And I imagine that all of us remember not just the fact that this guy had touched JFK, but the importance, even when it's the president, of trying to establish an airway, trying to give intravenous fluids, of fighting to get a palpable blood pressure, of doing the routine doctor things even when—and especially when—your heart is broken and you can't much think.

Given the way ERs work, I suspect the many 2013 Boston ERs and surgical teams will carry all they saw and did—and all they were unable to do—for the rest of their careers. In the tradition of ERs, which have long stretches without much to do (have a visit at 3 a.m. some time to see what I mean), staff will sit around and talk, exchange their own stories, some horrible, some amusing. And it is likely that somewhere, many years hence, a young doctor will make a rapid smart decision on a patient not because of what he learned in a medical-school lecture, but from the stories he had once heard of the marathon massacre.

Human gene patents at the Supreme Court: Slate readers tell their stories. - Slate Magazine

As the Supreme Court hashed out the legality of human gene patenting this morning, Justices Antonin Scalia and Sonia Sotomayor got to the gist of the dispute. "Why would a company undertake massive investment if it cannot patent?" Scalia asked. That's why governments give out patents: to reward and encourage the investment required for new inventions.
Sotomayor, however, pointed to the specifics of today's case. The company in question, Myriad Genetics, secured its patents by locating and isolating the genes BRCA1and 2, which can mutate in ways that carry a high risk of breast and ovarian cancer. In doing so, said Sotomayor, the company had not actually invented anything new. The gene is "just nature sitting there," she said. Chief Justice John Roberts said the company's work on the gene was akin to merely "snipping" a string of molecules out of the body.
With its patents, Myriad controls all the testing for the BRCA genes. No one is allowed to develop an alternative test. The company's monopoly has earned it the enmity of some patient groups—and some of the Slate readers I heard from when I asked for personal stories about gene patenting. One concern about Myriad's monopoly is cost. Helen, who was diagnosed with breast cancer last February in California, says her genetic counselor suggested she should be tested, "to help with my decision making and to inform my sister, who if I tested positive would need to be watched carefully." She says, "I spoke to my insurance company (Blue Cross/ Anthem) and they stated that the test would not be covered and the cost would be between $3,000 and $4,000." Helen says she couldn't afford that. "It is a horrifying feeling to be told you have a deadly disease and yet, a helpful and informative test will not be covered by your insurance company," she writes. "I had to make a major health decision solely on financial reasons. Not a good feeling."
I emailed Ron Rogers of Myriad for a response, and he said that the BRCA tests are reimbursed by more than 95 percent of insurance plans, and that "patients on average pay less than $100 out of pocket." He also said that Myriad has offered more than 5,000 free tests to low-income women without insurance in the last three years. Duke policy researcher Robert Cook-Deegan told me last week that Myriad's offer of free testing applies in just 0.4 percent of cases. Rogers said he didn't know what the percentage was.
Making it into the group of patients whose insurance covers Myriad's tests can be a project. Another reader, Steven, wrote to me about his efforts to get the test covered for his wife, who died of breast cancer related to the BRCA 1 gene in 2009. When she was diagnosed, her doctor recommended testing. As in Helen's case, this was for the benefit of family members as well as for her. To get the insurer to pay the $3,500 bill, Steven ended up on a telephone odyssey, getting passed from insurance reps to testing reps and back again. "From a patient/insured perspective, that process is a black box," he wrote. "The insurance companies will not let you speak directly and the claims people say that they cannot contact them. The claims people can only regurgitate what the payment people write." The calls took six weeks, "a pleasant diversion while one's wife is sick from chemo," Steven dryly remarked. He is a lawyer, and he wound up threatening to sue—and wondering how a patient without a law degree in the family would have fared. Here's his conclusion: "On the patient level, Myriad has monopoly pricing, and they refuse to license it to any other lab. Besides the outrageous price, it is an insurance nightmare for patients."
Mary, who was diagnosed with breast cancer last year at age 32, paid only $300 for her BRCA testing. Her insurance company picked up the rest without a problem. "The thing that was toughest for me about undergoing the test was how long it takes to get results," she wrote. With the version of the test she took, she waited a month. "I needed to know my BRCA status in order to make a decision between bilateral mastectomy or much more minor breast-conserving surgery. And it was a week from my initial cancer diagnosis before I could get an appointment to see a genetic counselor for the test. Those five weeks were some of the longest, most stressful weeks of my life. I don't know if there's a procedural reason why it takes Myriad so long to produce test results, but as long as they're the only lab that performs the test, there's no incentive to get faster." Rogers, of Myriad, said that patients receive their testing results in about a week. Apparently not all of them.
Mary concludes, "I have mixed feelings about the patent. On the one hand, I want companies to have financial incentives to develop these kinds of tests. On the other hand, I want as many scientists as possible to be able to participate in this important research."
Myriad says that plenty of research has been done alongside the patent, and points out that it has spent $500 million developing the BRCA tests. According to the New York Times, the company made $405 million on testing just in its last fiscal year, "accounting for more than 80 percent of its revenue." The patents run for 20 years, and in fact have almost run their course—they expire in the next two years.
That makes the case seem slow-moving. And as the NYT article discusses, some scientists say human gene patenting is generally waning in importance. As several Slate readers pointed out to me over email, it will soon be cheaper to sequence someone's entire genome than to go for BRCA testing. One cancer researcher who emailed me, though, said the patents are still a stumbling block, because researchers are afraid of treading on patents when they work on therapeutic interventions. Maybe the court will block sweeping patents of human genes like Myriad's with a ruling that is clear but narrow, so it doesn't unsettle the biotechnology field all that much. As another reader suggested, the big question then will be this: Which kinds of inventions that are based on human genes—as opposed to the genes themselves—can you patent? That seems like the harder line to draw.