The virtual house call
A doctor at Children's Hospital is sending his patients home with video
cameras. His idea could redefine the doctor-patient relationship. It could also
be a tool for Big Brother.
by Ellen Barry
In the Enders Auditorium, where Children's Hospital holds its grand rounds, the
visuals tend toward the diagram and the cross-section. But today, after a bit
of adjustment on the part of tech support, the white-coated crowd is watching a
little girl with asthma sobbing straight into a video camera.
She is sitting on her mother's lap, and her mother is gently questioning her
about why she can't play outside.
"Is it because you're too cute?"
"No."
"Is it because you're too blond?"
"No."
"Why is it?"
"I don't know," she wails.
It's a moving picture in every sense of the term. Doctors in the crowd are
conscious that this is the part of their patients' lives they miss in the age
of managed care. The clips they are watching are drawn from almost 500 hours'
worth of "virtual house calls," in which young patients made films of their
environment with the goal of learning more -- and teaching their doctors more
-- about why they have asthma.
The question is urgent, because asthma is pandemic in our cities: the death
toll has doubled to 5000 a year since the early '80s, and incidence jumped 52
percent between 1982 and 1993. Doctors know that environmental factors -- such
as cigarette smoke, mold, and droppings from cockroaches and dust mites -- are
part of what's making children sick, so the children were given video cameras
and instructed to film the story of their asthma. One kid came back with 78
hours of film.
The home movies, when they came in, contained a wealth of visual information
-- rooms full of plants, which are grade-A mold producers; dusty construction
sites outside kids' windows -- the kind of things you'd have to visit to see.
There's also information that might not come out in an old-style house call:
footage of a smoke-filled kitchen; of medication overused or wrongly used; of
hostility to doctors and isolation from peers; of a teenage filmmaker
announcing to the camera that she has decided to stop taking her medicine,
despite telling her doctor otherwise. In one shot, an adult hand holding a
cigarette reaches across the lens to turn the camera off. From the podium,
watching the doctors watch the tapes, is Dr. Michael Rich.
Rich's project, the Video Intervention/ Prevention Assessment program, or VIA,
may change the way doctors treat asthma. But by teaching doctors about the
environments and private concerns of sick children, it also has the potential
to go much further. "We used this methodology with a relatively tame subject,
but we want to apply it to much more controversial issues," Rich says. Video
intervention could be used not only to monitor the lives of kids with chronic
illnesses such as sickle-cell disease, diabetes, and HIV, but also to achieve
"complex medical interventions" in cases that involve substance abuse, teen
pregnancy, and violence in the home. It could bring the child's experience to
center stage.
But the program also sets off civil-liberties alarm bells, because what makes
VIA work so well -- the intimate child's-eye view of domestic life -- is also
what makes it dangerous. It's easy to distribute cameras to children, but hard
to know what to do with the information that results. What if a tape did show a
parent abusing a child or abusing drugs? Doctors are required to report
evidence of abuse or neglect to the Department of Social Services (DSS).
Videotapes can be subpoenaed. And even when it yields low-octane information,
like smoking in the home, intervention could easily raise accusations of
surveillance. Videotape, as the world learned from the case of Rodney King,
has a power that cannot be entirely predicted.
"I have people who want to run with it in certain directions. They want to
perfect this methodology and apply it to their subjects, including sticky
social and political [subjects] such as substance abuse and violence," Rich
says. "This is one of those projects that can spin off in a lot of ways."
Michael Rich, 44, is a doctor with abundant incidental talents. He studied
creative writing in college, then worked for 12 years as an uncredited script
doctor -- fine-tuning screenplays for motion pictures he cannot identify in
public, but which (trust me) you have seen -- and as a documentary filmmaker.
One film he worked on won a prize at Cannes. Then, after what he describes as a
"midlife crisis," he enrolled at Harvard Medical School at the age of 31. And
he kept his mouth shut.
"When I applied to medical school, I didn't tell anyone about my prior
life," Rich says. "I didn't want to seem like a dilettante. I wanted to sink or
swim on my own merits."
But the secret came out, and Rich set to work finding applications for film in
medicine. What he came up with, eventually, was VIA. As he shepherded his
project through grant proposals and review boards, he encountered resistance
from doctors who he says were "mostly bench researchers -- they're used to
cutting up DNA and running gels. They were saying, `This is voyeurism, this
isn't science.' " Ellen Goodman, a Children's Hospital social worker who
collaborated with Rich in the early stages of the project, says his concept
challenged doctors' traditional wariness of "soft science."
Rich teamed up with a Temple University anthropologist named Richard Chalfen,
who has been having subjects -- inner-city teens, Native Americans on
reservations -- film their own environments since the mid-'60s. According to
Chalfen, what physicians stand to gain from the tapes is a sense of "disease in
context" -- for instance, a better understanding of whether patients actually
comply with doctors' instructions. According to Rich's data, for example,
83 percent of VIA participants misused medication during the course of the
study. "It's a very upper-middle-class model that patients do what doctors
say," Chalfen says. Watching these habits over the long term could provide
lessons that go beyond individual cases to color treatment everywhere.
Another interesting result, Rich says, is that the kids apparently benefited
simply from the process of filming themselves. Twenty-eight percent said their
symptoms had improved while they participated, and 52 percent said they
knew more about asthma. And in the hours of simply talking to the camera, with
the vague sense that someone would listen eventually ("it worked like a
confessional," Rich says), certain subjects regained control over their lives.
The challenge awaiting VIA is not so much collecting information as knowing how
exactly to act on it. Although Rich sees video documentation as a tool to
"empower the voice of the patient," it could easily turn out otherwise. Will
intervention consist of gentle persuasion of the
we-still-have-concerns-about-smoking variety, or will it dissolve into
finger-pointing? Even if families formally agree to take part in the program,
how do you gain consent from other people who walk into the house while a child
is filming? And -- given what we already know about patients' saying what
doctors want to hear -- how do you keep doctors from pressuring families into
participating?
John Roberts of the Massachusetts ACLU sees the idea of video intervention
looping back to give doctors a dangerous amount of power.
"This does sweep far beyond what would ever be contained in the medical record
-- that is, it's actually surveillance of a family," says Roberts. "If there
was violence, the tape would have to be turned over to police, or to the DSS.
There's all kinds of possibility there for abuse of family privacy."
Rich counters that such violations would undercut his purposes, because "if
[families] felt there was any kind of surveillance going on, they wouldn't give
us as good material as they could." Rich's subjects so far have signed multiple
release forms and reserved the right to turn off the camera at any time; none
dropped out of the study. But Roberts still thinks families could endanger
themselves by allowing filming in their homes.
"I think there's a terrible risk that people might take doing this kind of
thing," he says. "People sort of take doctors' word for things."
And the fact remains that the doctor's job is to tell people how to behave.
When the asthma study's funding runs out in June, Rich hopes to get funding to
work with teen parents, investigating how they got to that point and how they
live. The ultimate test of VIA will come the day the camera picks up something
that the families really don't want their doctor to see. When that issue comes
up, we'll know whether the great benefits of access outweigh the tremendous
risks.
They're risks we wouldn't take if we, as a society, weren't so desperate for
creative means to sustain the relationship between doctors and patients. The
old means have stopped working -- and Rich's argument is that technology, which
so many see as dehumanizing medicine, can also be used to "rehumanize" it.
Because medicine is not likely to rehumanize itself. When Rich presented VIA at
grand rounds, one doctor stood up and asked a question that seemed obvious:
Given the amount of time it takes to transcribe 500 hours of videotape,
wouldn't it make more sense for doctors simply to stop by patients' houses?
Rich agreed heartily, to a spattering of applause, but in an interview
later he doesn't seem so sure. First, he reiterates, the camera sees things
that the doctor wouldn't see. Second, the age of the house call has passed away
forever. Suggesting otherwise, he contends, is nothing but nostalgia.
"No insurance company is going to pay for that," he says. "That's
wishful thinking."
Ellen Barry can be reached at ebarry[a]phx.com.