Monthly Archives: October 2013

When Medical Care Is Futile, Other Patients Pay The Hidden Price

(U.S. Navy via Wikimedia Commons)

(U.S. Navy via Wikimedia Commons)

By Richard Knox

Every day in intensive care units across the country, patients get aggressive, expensive treatment their caregivers know is not going to save their lives or make them better.

California researchers now report this so-called “futile” care has a hidden price: It’s crowding out other patients who could otherwise survive, recover and get back to living their lives.

Their study, in Critical Care Medicine, shows that patients who could benefit from intensive care in UCLA’s teaching hospital are having to wait hours and even days in the emergency room and in nearby community hospitals because ICU beds are occupied by patients receiving futile care. Some patients die waiting.

On one day out of every six, the researchers found, UCLA’s intensive care units contain at least one patient receiving useless care while other patients are unable to get into the ICU.

More than half the time, over a three-month period the researchers examined, the hospital’s intensive care units had a least one patient receiving futile care. The study shows the ripple effects of that futile care within the UCLA hospital and in surrounding hospitals where patients were waiting to be transferred.

“It is unjust when a patient is unable to access intensive care because ICU beds are occupied by patients who cannot benefit,” the authors write.

“The ethic of ‘first come, first served,’” they say, “is not only inefficient and wasteful, but it is contrary to medicine’s responsibility to apply health care resources to best serve society.”

But the concept of “futile” care raises touchy questions. Who decides when care is futile? What if the patient’s family disagrees? What can doctors and hospitals do to avoid futility? Might efforts to avoid futile care slide toward the big R – rationing?

I talked about the study’s implications with its senior author, Dr. Neil Wenger, a UCLA professor of primary care medicine and head of the university’s ethics center. Here’s a lightly edited transcript of our conversation.

Why did you decide to study futile care? Continue reading

Pediatricians: Middle And High School Should Start No Earlier Than 8:30 AM

(eltpics/Flickr via Compfight)

(eltpics/Flickr via Compfight)

It’s one of the great joys of early parenthood: Finally being able to sleep until a reasonable hour — say, 6 a.m. Then, before you know it, you’re facing the opposite problem: Homeroom is just half an hour away, and your tween or teen remains an immovable lump beneath the covers.

As any parent who’s observed it would suspect, this is deep biology at work. Today, the American Academy of Pediatrics issues both an up-to-date explanation of research on adolescent sleep and a ringing call to the country’s schools to heed it and begin school later for “pathologically sleepy” older students. Sleep deprivation in youth is a common — “and easily fixable” — public health issue, the academy says in a policy statement.

From the press release, whose headline begins “Let Them Sleep:”

“The research is clear that adolescents who get enough sleep have a reduced risk of being overweight or suffering depression, are less likely to be involved in automobile accidents, and have better grades, higher standardized test scores and an overall better quality of life,” [statement lead author Dr. Judith] Owens said. “Studies have shown that delaying early school start times is one key factor that can help adolescents get the sleep they need to grow and learn.”

Many studies have documented that the average adolescent in the U.S. is chronically sleep-deprived and pathologically sleepy. A National Sleep Foundation poll found 59 percent of 6th through 8th graders and 87 percent of high school students in the U.S. were getting less than the recommended 8.5 to 9.5 hours of sleep on school nights.

This medical stance on sleep deprivation is not new; the research has been accumulating for many years. But the academy reports that about 40 percent of American high schools still start before 8 a.m., and only 15 percent launch the school-day at or after 8:30. Among middle schools, it says, more than one-fifth begin at 7:45 or earlier.

If schools are not shifting later as fast as pediatricians might like, that could be because, like virtually everything in education, it’s not as simple as it might seem.

‘Life is going on right now in hyperspeed for most of our young people.’

“Once you go deeper into the lives of kids today, things become more complex,” says Dr. Bob Weintraub, who was the headmaster of Brookline High School from 1992 to 2011 and is now a professor of educational leadership at Boston University. Based on the research, Brookline High shifted start times for most students to 8:30 during his tenure, he said, but such shifts do raise issues.

“One of the practical problems has always been for high school athletics and school activities,” he said; if school ends later, sports and other activities must start later, and outdoor sports are hindered when darkness descends. Continue reading

How To Spend All That Ice-Bucket Money? Multiple ALS Research Leads Heat Up

In this image from video posted on Facebook, courtesy of the George W. Bush Presidential Center, former President George W. Bush participates in the ice bucket challenge with the help of his wife, Laura Bush, in Kennebunkport, Maine. (AP)

In this image from video posted on Facebook, courtesy of the George W. Bush Presidential Center, former President George W. Bush participates in the ice bucket challenge with the help of his wife, Laura Bush, in Kennebunkport, Maine. (AP)

I sighed this week when I heard, “Hey, Mom, do we have a clean bucket and some ice?”

Yes, the viral ALS ice-bucket challenge that has swept the country had reached our household as well. And though my daughter averred that she would never have heard about ALS otherwise, it pushed some of my cynic buttons. (My favorite response so far had come from an acidly hilarious Facebook friend who advised celebrities: “Just write a check to support ALS research. If you still need a gimmick and social media attention, set your hair on fire instead.”)

For me, the trouble was that I had looked into ALS research a few years ago and it had struck me then as extraordinarily frustrating. It was the field that first taught me that it’s all too common for a potential treatment to look good in initial testing and then fail to pan out when tried in a bigger clinical trial. That happened with ALS over and over again. And meanwhile, patients faced inexorable neurological degeneration and far too early deaths. (One of my most admired colleagues, Dudley Clendinen, died of ALS in 2012 after eloquently chronicling his time with it.)

But then I thought: Let’s be positive. Whatever the narcissistic elements of the ice-bucket dousings, the challenge is raising millions of dollars — more than $50 million as of Friday, from more than a million new donors, according to the ALS Association. And maybe ALS research has changed?

Indeed it has, say scientists working in the field. Not that it looks like there’s a cure around the corner, but there has been major progress of late, they say, and we can expect more to come.

“In about the last seven years, the genetics of ALS has just exploded the field, and just come up with so many new ideas for how we can tackle the disease,” said Avi Rodal, an ALS researcher at Brandeis University whose work is funded by the Blazeman Foundation for ALS.

Dr. Lucie Bruijn, chief scientist of the ALS Association that is reaping the ice-bucket windfall, also describes a field that is forging ahead in multiple directions. “The understanding of the disease, the research that has gone into it, has grown exponentially,” she says. “So we’re much closer to understanding the complexity of the disease and how to approach it in a very different way from before, when many of the trials were challenging partly because we didn’t understand the disease as closely.”

The Association, she says, is focusing on six main areas, and the ice-bucket money will likely be divided among them: “We want to invest in many areas,” she says, “to be sure not to dilute it too much but to be very strategic that we don’t put all our eggs in one basket.”

Those areas, in brief and lightly edited, as she described them:

1. Genetics:
About five to 10 percent of ALS runs through families, but 90 percent is sporadic. However, we’ve found that many of the genes we identify in familial disease are potential risk factors, and certainly also seem to be involved in the sporadic form. So there’s an underlying genetics in all ALS, but sometimes it’s more dominant than others. Continue reading

Even In Mass., Hundreds Of Young Central American Refugees Seek Care

"Flor" (Richard Knox for WBUR)

“Flor” (Richard Knox for WBUR)

By Richard Knox

CHELSEA, Mass. — The young Honduran woman appeared at the Chelsea HealthCare Center last February, fearing she was pregnant.

“Flor” — a pseudonym to protect family members back in Honduras — had paid a “coyote” $8,000 to escort her and her 3-year-old daughter to the U.S.-Mexican border. But when they got to the border town of Nuevo Laredo, the coyote sold her to a gang that held her in a tiny room with seven other women.

They raped her, then told her to pay $17,000 or they’d sell her daughter’s organs and force her into sex slavery.

Up in Massachusetts, her mother and father scrambled to borrow the money and wire it to Nuevo Laredo. Her kidnappers released Flor and the little girl; she doesn’t know what happened to the other women.

Flor and her daughter are among hundreds of Central American immigrants who’ve made their way to the blue-collar town of Chelsea, Mass., over the past year.

They represent a quiet influx that began months before the phenomenon hit the headlines and protests began flaring in communities from Cape Cod to California.

They come to Chelsea because many of them have family there. Sixty-two percent of the town’s 35,000 residents are Latino, and many are from Honduras, El Salvador and Guatemala.

As we sit in a conference room at the Chelsea health center, the sun backlights the thick dark hair that frames Flor’s broad face as she tells me how and why she made the 2,300-mile trek from the Honduran capital of Tegucigalpa.

“The decision I made, why I came here, was to give a better future to my daughter,” Flor says in Spanish, silent tears trickling down her cheeks. “In Honduras, it is very difficult. The gangs, they’re killing a lot of people. You have to give money month-to-month or they go to your house and they kill you.” Continue reading

Let’s Explore Diabetes With Honeybees (Seriously — It Could Work In Urban Slums)

Three trained bees in a special harness that holds them in place for the diabetes-detecting experiment. (Photo courtesy of Juliet Phillips, Bee Healthy project.)

Three trained bees in a special harness that holds them in place for the diabetes-detecting experiment. (Photo courtesy of Juliet Phillips, Bee Healthy project.)

By Richard Knox

The latest book by humorist David Sedaris is implausibly titled “Let’s Explore Diabetes with Owls.” But as we all know, life is stranger than literature: Now, an imaginative team of social entrepreneurs has devised a way to explore diabetes with bees — that is, to train honeybees to diagnose hidden cases of diabetes.

It’s no crackpot idea. It’s in the running with five other finalists for a million-dollar prize given each year by the Clinton Foundation.

Here’s the concept: Bees are 10,000 times more sensitive to chemicals in the air than humans. The breath of humans with diabetes contains higher levels of a chemical called acetone. Bees are easily trained to stick out their tongues when they detect a certain concentration of acetone.

Put a bunch of these trained bees into tiny harnesses, have a person breathe into a straw aimed at the constrained bees and voila! A diabetes screening system that doesn’t require laboratories, expensive machines, highly trained technicians, dietary fasting, or more than a modicum of money.

It may be a good way to screen large numbers of people for undiagnosed diabetes in developing countries such as India, where the disease is burgeoning even faster than in overfed America.

Juliet Phillips of the Bee Healthy project studies a bee in harness, ready to be bathed in the breath of a volunteer. The bee is trained to stick out its tongue if it scents a certain level of a chemical in the volunteer’s breath, signaling diabetes. (Photo courtesy of Juliet Phillips, Bee Healthy project)

Juliet Phillips of the Bee Healthy project studies a bee in harness, ready to be bathed in the breath of a volunteer. The bee is trained to stick out its tongue if it scents a certain level of a chemical in the volunteer’s breath, signaling diabetes. (Photo courtesy of Juliet Phillips, Bee Healthy project)

“Millions of people aren’t aware they have this disease,” says Juliet Phillips, a leader of the project, called “Bee Healthy.” “They aren’t even aware there is this disease. So there’s a need to screen people for diabetes that’s free for people in slums but also culturally acceptable.”

Phillips and her colleague Tobias Horstmann were in Boston this month to test the idea on a group of people with known diabetes. The experiment, at the Joslin Diabetes Center, found that bees could identify the diabetic patients 70 percent of the time.

“That’s not as high as we want to go, but we believe we can get there,” Horstmann says. “We can get improvement in the training of bees.”

In addition, the Boston patients in the test all had well-controlled diabetes, so the level of acetone in their breath was much lower than undetected diabetics in a developing country whose diabetes is out of control. Continue reading

Pop Awake At Night? Researchers Blame ‘Sleep Switch’ In Your Aging Brain

(eflon via Compflight)

(eflon via Compflight)

If you’re on the older side and find yourself popping hideously awake in the middle of the night or far-too-early morn, here’s your line for the next time it happens: “Oh, that darned ventrolateral preoptic nucleus of mine! How I miss my old galanin!”

Researchers have just reported in the journal Brain that they’ve found a group of neurons — in the aforementioned nucleus – that function as a kind of “sleep switch,” and whose degeneration over the years is looking very much like the cause of age-related sleep loss. It’s also looking pivotal in the insomnia that often causes nocturnal wandering in people with Alzheimer’s disease.

“This is the first time that anyone has ever been able to show in humans that there is a distinct group of nerve cells in the brain that’s critical for allowing you to sleep,” said the paper’s senior author, Dr. Clifford Saper, chair of neurology at Beth Israel Deaconess Medical Center and professor of neurology at Harvard Medical School.

You may well be wondering exhaustedly how soon this insight — based on the post-mortem analysis of 45 human brains — will lead to better sleeping pills for older folks. I asked Dr. Saper that, too. No promises with timeframes at this point, but he does see the prospect for better-targeted sleeping pills for seniors, with fewer side effects like Ambien’s balance-related problems.

Our conversation, lightly edited:

Can this group of neurons actually explain the lion’s share of sleep problems that older people and people with Alzheimer’s disease have?

It really can. Let me give you a little background. We discovered this cell group in the brains of rats in 1996. We found that there’s a group of of nerve cells in a part of the brain called the hypothalamus that fire when animals are asleep. And we later found that if you eliminate those nerve cells, that animals lose up to 50 percent of all their sleep time, and the remaining sleep is fragmented. They can’t sleep for long bouts at a time; they keep waking up all the time.

At that time, we weren’t sure whether this would be the same in other species. So we looked at the brains of half a dozen other species — of mice and cats and monkeys — and we found that all of them have this cell group and that the cells were active during sleep in all of them. In every species we looked at, this same cell group had a particular neurotransmitter in it, called galanin.

I’ve never heard of that neurotransmitter before… Continue reading

Leading Pediatrician: Sick Time Is Health Issue; Will Doctors Step Up?

(Mary MacTavish/Compfight)

(Mary MacTavish/Compfight)

Call me Sherlock Holmes, but when a ballot measure has “sick” in its title, I get a sneaking suspicion that it may involve an issue of health.

As in Question 4 on the Massachusetts ballots this November, which the secretary of state titles “Earned Sick Time For Employees” and summarizes as a proposed law that “would entitle employees in Massachusetts to earn and use sick time according to certain conditions.”

It would guarantee up to 40 hours of paid sick time if you work for a large employer and up to 40 hours unpaid if you work for a small employer. (More details here.)

This referendum — and measures like it in other states and at the federal level — tend to be portrayed as labor issues, pitting employers against employees. But Dr. Mark Schuster, Chief of General Pediatrics at Boston Children’s Hospital and Professor of Pediatrics at Harvard Medical School, argues that sick days are a health issue — and no one knows that better than doctors.

In the New England Journal of Medicine, he and Dr. Paul Chung of UCLA discuss the risks inherent in an economy where about 40 percent of employees get no paid sick leave, and many cannot even take unpaid sick days without risking their jobs.

They begin with the big-picture public health problem of the 2009 H1N1 flu pandemic, when health authorities were begging sick people to stay home and some workers were responding that they simply couldn’t.

And then there are the human difficulties that play out every day:

Consider a mother who knows both how to assess her son’s asthma symptoms and when he needs to see a clinician. If his medicine doesn’t seem to be working on a weekend or at night, they go straight to the clinic, he receives treatment, and they avoid a hospital admission. But when the boy has an asthma attack on a weekday morning, his mother sends him to school, fearing that missing work will mean losing her job. Three times in 18 months, when she waits until after work to bring him to the clinic, his asthma worsens, and he ends up hospitalized. Each time, what should have been three hours in the clinic becomes three days in the hospital.

Or consider a young girl with a fever and flulike symptoms who is given Tylenol and sent to school by her father because he can’t miss work. Two days later, the girl develops the rash characteristic of fifth disease on her cheeks. Her whole class has been exposed, and because the teacher is pregnant, her fetus is at risk.

About half of American workers get no paid sick days that they can use to care for family members, they note. And they end with a call to action directed at other health care professionals: “At the intersection between health and work, the health care community needs to provide a voice for patients and their families.”

Will it, though? Continue reading

Want To Become An Organ Donor? It’s Super-Easy In Mass. Now Do You?

misscherryorchards via Compfight/Flickr

(misscherryorchards via Compfight/Flickr)

Veronica Thomas
CommonHealth Intern

Pestering someone with the same question over and over again doesn’t usually get you what you want. But with organ donation, asking repetitively might just be the key to increasing the number of much-needed organ donors.

According to a new working paper from the National Bureau of Economic Research, providing more information and opportunities for people to become organ donors could boost registrations dramatically.

This increase in donors is needed more than ever. Each day, 18 people die while waiting for a transplant organ to become available. The waiting list is over 123,000 people deep but there were only about 29,000 organ transplants last year.

The new findings are based on a survey of Massachusetts drivers, which The Washington Post’s Jason Millman describes in One Way To Boost Organ Donations: Just Keep Asking. From the article:

Researchers surveyed 368 people with a Massachusetts driver’s license or ID card, including 156 people (42.4 percent) who were already registered organ donors. Of those who weren’t registered donors, 61 people in the study decided to sign up after researchers presented them with the chance to update their status. Just two people who had been registered donors asked to remove themselves from the registry.

“Put simply, asking again for organ donation generates more donors,” wrote Judd Kessler of the University of Pennsylvania’s Wharton School and Stanford University’s Alvin Roth. They said this suggests that policymakers should look for more opportunities to keep asking this question, like on income tax forms, as the researchers said some states are considering.

Asking more than once may work for a number of reasons. Millman explains:

People may have missed the opportunity to register the first time; or, repeat requests may signal the importance of organ donation, Kessler and Roth write. The “guilt factor” may also kick in after repeat requests. And there’s also the chance that people learned something that changed their minds. On that final point, Kessler and Roth found that just informing non-donors about what organs they could donate made them more willing to register.

So, here we go. Let’s test out this strategy and see if it works. Continue reading

How Transgender People Are Changing Their Voices

Lorelei Erisis, a transgender woman, tries out the Eva app in her Ayer home. (Martha Bebinger/WBUR)

Lorelei Erisis, a transgender woman, tries out the Eva app in her Ayer home. (Martha Bebinger/WBUR)

Lorelei Erisis taps the screen of a borrowed iPhone. The key of A, with kazoo-like resonance, fills her living room in Ayer, Mass.

Erisis taps another button labeled “start,” takes a deep breath, and sings the word “he,” trying to match the tone.

A number, 75 percent, pops onto the screen.

“My pitch was too low,” Erisis says. “Oh well. Let me try again.”

Erisis, a transgender woman, is trying out Eva, a mobile phone app that may be the first of its kind. Transgender men and women who want to raise or lower the pitch of their voice can go through a series of breathing and pitch exercises designed to help with what can be the most difficult characteristic to change — their voice.

“What I often hear is, ‘I pass as a woman until I open my mouth,’ ” says Kathe Perez, a speech language pathologist who designed the Eva app. Continue reading

Son, Mom, Psychiatrists Reflect On Finding Your Own Way With ADHD

Peter and Ellen Braaten (courtesy)

Peter and Ellen Braaten (courtesy)

Peter Braaten, now 20, still retains an indelible third-grade memory of being unable — simply unable — to stay seated in a reading circle. “And I just started walking around, because that’s what made me feel okay at the time. And the teacher said, ‘No, sit down, sit down.’ And I basically just couldn’t sit there, because I felt unsettled at the time. And I just couldn’t read, I wasn’t getting into it, so I kept pacing, kept pacing…”

Ellen Braaten, PhD, Peter’s mother and the chief child neuropsychologist at Massachusetts General Hospital, is an expert on Attention Deficit Hyperactivity Disorder, but that doesn’t mean it was easy to cope with it in her son. She recalls the “humbling” experience of going to IEP — Individual Education Program — meetings with school staff as a parent rather than an expert: “Peter has seen me in IEP meetings where I’ve had to yell at them…”

They share their experiences in the podcast above with Dr. Gene Beresin, director of the Clay Center for Young Healthy Minds at Massachusetts General Hospital, and the Center’s associate director, Dr. Steve Schlozman, who treated Peter. One central message from the podcast, Dr. Beresin says: “As with every psychological problem, we all have to find out what works for us. Because what works for one person is not necessarily what works for all. There are no magic bullets. No platitudes. No simplistic answers.” But Peter is now earning all A’s in community college, helped in part by academic coaching and regular exercise. The post below supplements the podcast above.

By Peter Braaten, Ellen Braaten and Gene Beresin
Guest contributors

Peter:

One of the most difficult things for me about being diagnosed with ADHD (especially at such an early age) was understanding this as a helpful push in the right direction. It was very hard for me to appreciate what a “diagnosis” means. Does it just mean a guide for treatment? Well, that might be fine for a doctor, but in my experience it is not good guide for others. In some ways, it significantly influences the ways others view you. Some understand what it means, while others don’t — some adults around me did not even believe it exists or just seemed to disregard it.

‘I have gotten in trouble more times than days I’ve lived on this planet.’

Context is what I find difficult with this diagnosis. It is really something that affects every aspect of your life, which is why it is so hard for other people (teachers, parents, etc.) to understand what it means for an individual to have ADHD. A diagnosis in itself does not inform others around you what tasks are easy or difficult. It does not differentiate effort levels. So for me, some activities have been pretty easy to accomplish, while others are very hard, if not impossible, without some kind of coaching. And the amount of energy that it takes me to do different projects is highly variable. But only I know this, and a teacher, parent, friend might not know what I am going through — they are not living my life.

We live in a world where results are everything. Too often I have been told to just ‘try harder.’ Well, ‘trying hard’ just doesn’t cut it anymore – it is not so simple if you have ADHD, and especially if you have problems with organization in some tasks. I have gotten in trouble more times than days I’ve lived on this planet because I complete 85% of an assignment, task, or any kind of job. And then when I just cannot do the rest, others around get angry, frustrated, or don’t understand. And worse, I get really down on myself! Continue reading