Reel life
by Matthew Cyr
The camcorder clicks on, showing us a young man lying casually on his bed, baseball hat pushed back on his forehead.
"People always ask me if it's hard to make plans because of my cystic fibrosis," Jay Bernardini says to the camera.
There's no one else in the room; Jay's answering the questions he wants to ask.
"I tell them that in the short term, the answer is no. But if they mean making plans for five to 10 years from now, the answer is yes."
Jay's got a bag of marshmallows at his side and his hand moves absentmindedly from the bag to his mouth; he continues talking around his snack. "My friends don't have to think about this kind of thing. Things like, if I get married and we have kids, am I going to be alive to be their dad?"
He ponders this for a moment, then finishes his thought. "If we can't cure cystic fibrosis, people with the disease shouldn't be able to have kids."
It's a shocking statement, although not one Jay actually believes. He thinks the work of doctors and researchers to solve the cystic fibrosis riddle is important because scientific study "helps us grow as a race." But it gets to the heart of the turmoil Jay is feeling. At 25, like many people his age, Jay is contemplating marriage and fatherhood. But at the same time, he thinks that no one else should have to go through the pain, confusion and uncertainty of living with the chronic, fatal illness that affects his ability to breathe.
It's very rare for clinicians to hear patients talk about these kinds of things. Clinic visits usually cover symptoms and medications, while home visits by social workers often focus on whether the home environment is suitable for someone with a chronic illness. But to truly understand what diseases mean to the people facing them, you have to hear from them when they're at their least guarded: when they're talking to family and friends about how the illness impacts their lives, or when they're alone with their thoughts.
So Michael Rich, MD, MPH, who directs the Center on Media and Child Health at Children's Hospital Boston, began searching for a new way to find out in peoples' own words what it's really like to live with a chronic illness—to know from an early age that your life will not be like other lives.
It was a search to which he brought a unique perspective.
The first 10 years of Rich's professional career were very different than those of most of his physician colleagues. Rather than learning the intricacies of the human body, he was directing plays and films and working as a "script doctor" in Hollywood.
In 1987, though, he decided to remove the word "script" from his title and entered Harvard Medical School. He was surprised by what he found.
"It seemed that as technology improved, we were better able to care for the physical side of patients' diseases, but we were getting more distant from each other on a personal level," says Rich. "I was looking for a way to break out of that mode. A robot can look at numbers on a machine and make adjustments, but it can't bring the human connection into medicine."
Ironically, in trying to bridge the widening gap between patients and clinicians, he turned to a technology from his previous career, the videocamera. Today he uses it as the primary tool of Video Intervention/Prevention Assessment (VIA), which deftly combines Rich's passions for medicine and filmmaking. "I really wanted to bring the unique power of the audio-visual medium to medicine so patients could come to the table as equal partners in their own health care," he says.
The idea behind VIA is simple enough: put video cameras in the hands of chronically ill Children's patients, teach them the rudiments of videotaping and ask them to teach their clinicians about the realities of their illness experience. The instructions to the patients are deceptively simple, too: tape only what you want, when you want, but show us your everyday life and how you manage your illness.
What Rich and his colleagues have found is that sometimes the simplest instructions yield the most intriguing and useful information.
VIA's first study, which took place from 1995 to 1997 and followed 20 children, adolescents and young adults with asthma, found that a staggering 95 percent were regularly exposed to asthma triggers that they hadn't reported to their clinicians. Videos showed one girl with severe asthma cuddling a kitten, a young woman doing a job that required her to work in a smoke-filled room, and a patient who was telling Rich in clinic that she was taking the medications he gave her, but telling the camcorder she had stopped taking them because of how they made her feel. "She didn't want to hurt my feelings by saying anything to me," says Rich. "But she knew very well that I would find out by watching the video."
These kinds of findings show Rich that patients' decisions are sometimes governed by feelings and motivations that only they can understand and describe—and only in an environment where they feel safe and in control. One such decision is non-adherence to medical plans.
"For years we said, 'Patients who don't adhere to plans don't know their disease well enough, so let's educate them better,'" says Rich. "Well, we taught them more and they could answer questions about their condition better, but their behavior didn't change because it's driven by more complex motivations than just knowledge. There are trade-offs in a patient's life that we don't necessarily take into account. So for the girl with asthma who has a kitten, the trade-off is, 'This cat may make my asthma worse, but it loves me, it's a companion.'
"It's very easy for doctors to get trapped in the textbook answer for how to manage disease," says Rich, "but it's not responsive to the lives our patients really live."
Rich's VIA staff, who watch every minute of every hour of tape the participants record, get to see the lives patients live more closely than just about anyone, and think they know why putting video cameras in patients' hands gets them to share more than they would during the average doctor appointment.
"We tell them to turn on the camera when they feel comfortable," says Julie Szymczak, one of two field coordinators who work closely with patients during their filming cycles. "VIA gives them control over what they want to say and when they want to say it."
This comfort often leads to what the staff refer to as "VIA moments," when patients reveal something unexpected on tape.
Jay Bernardini talking about why he thinks patients with cystic fibrosis (CF) shouldn't have children is a VIA moment. So is a sequence where he says that if people ask him why he coughs all the time, he'll tell them he has CF. And if they don't know what CF is, he'll tell them it's asthma, which is not even close to the truth. But when you're living with a chronic illness, sometimes it's just easier to call it something people have heard of.
While these VIA moments are illuminating, they also accomplish Rich's goal of bringing patients more fully into the clinical relationship as active partners.
In looking at data from the asthma study, the VIA team found that there was a significant improvement in asthma-related quality of life after the taping occurred, but before the tapes were evaluated or shared with the patients. Rich chalks this phenomenon up, in part, to the fact that the patients are more actively aware of their disease and how they should be caring for it while they're recording. But the taping also appeared to increase participants' confidence in managing their conditions. As one participant said, "When I realized I could take control of my life story, I began to think I could take control of my life."
Now the VIA team hopes to discover similar useful clinical information in their ongoing Transitions study. The study asks patients with CF, sickle cell disease (an inherited blood disorder that causes painful "crises" often requiring hospitalization), spina bifida (a birth defect that can cause paralysis) and HIV to tape themselves during three separate time periods.
VIA chose these diseases because, until relatively recently, they were often fatal in childhood. But technological advances and better medical management from an early age are helping patients survive into adulthood. Living longer means they have to start getting their care at an adult hospital, and face the daunting task of leaving behind everyone and everything they know at Children's.
"Many patients in Transitions know Children's better than we do," says Jen Patashnick, VIA's analysis coordinator. "They feel comfortable with their doctors and the system here, so it's hard for them to step out of that and go into a complete unknown."
Marc Banks was one of these patients. Born with sickle cell disease, Marc had been coming to Children's his whole life, but needed to begin receiving care at an adult hospital that could better treat his pain. In 2001 he was asked if he would like to chronicle this change as part of the Transitions study, but he was hesitant at first. "I had to push myself to join VIA," says Marc. "At first I didn't want people to know my personal life, but now I feel good about sharing parts of me."
He came to like it so much that over three filming cycles he recorded 40 hours of tape, including this VIA moment, an account of the pain he faces during a sickle cell crisis: "The pain is like studying for a big test," Marc says. "You need quiet, uninterrupted time with your books, but your little brother or sister keeps bothering you. You can't concentrate. You can't focus. The pain is the same way. It lets you know it's there. It won't be ignored. If anyone watching this has sickle cell and your doctor tells you that you need to focus and not concentrate on the pain, tell them you can't."
The transition to an adult hospital wasn't easy for Marc, who is now 27, but he found that taking part in VIA helped him adjust to the change while giving him the confidence to start playing a role in his own care. "As a little kid, my parents dealt with my illness; they protected me," says Marc. "But now I'm older and have a better understanding that this is my body and I can control what goes into my system. A doctor can suggest something, but I can say no. It's my choice and they have to accept it."
The videocameras that Rich and his forward-looking VIA crew have given out to 73 patients in the last 10 years have helped create moments like this, of confidence, self-understanding, insight and surprise—in short, VIA moments.
And while much of the research done in the Center on Media and Child Health (CMCH) investigates the detrimental effects of TV, videogames, music and other media on the physical and mental health of children and adolescents, VIA has shown that media can also be a powerful, positive force.
"VIA is a great teaching tool because it shows clinicians what it's really like to live with chronic illness," says Rich. "And the methodology is so rigorous and reproducible that it can be used anywhere for just about any illness or topic."
Its ultimate value, though, is as a forum for patients to speak and advocate for themselves and their health.
"These kids are so courageous to share their lives with us," says Rich. "Clinicians don't know it all and we need to accept that, learn from our patients and figure out how we can apply our knowledge and experience to the needs they have. Then the whole issue of compliance is out the window because it's not the doctor's plan that the patient isn't complying with, it's the patient's plan. If it doesn't work, it's not, 'I can't tell the doctor I didn't take the medicine.' It's, 'Okay, let's go back to the drawing board and work it out together because we're in this together.' "
For more information on VIA, visit www.viaproject.org
For more information on CMCH, visit www.cmch.tv.
To learn more about supporting Michael Rich, MD, MPH, VIA or the Center on Media and Child Health at Children's Hospital Boston, contact Lynn Susman in the Children's Hospital Trust at (617) 355-5344 or lynn.susman@chtrust.org.
