Doc Gurley's Ground Rules for Haiti
Dr. R. Jan Gurley, better known as Doc Gurley, wears many hats. She is a physician at the San Francisco Department of Public Health homeless clinic, but also a blogger and columnist.
Gurley arrived in Haiti on Monday morning with an independent group of 12 doctors from Northern California, to meet "container clinics" that have been shipped to the field. Each clinic-in-a-box, created by Randy Roberson of Payson, Arizona, has everything needed to quickly start a small clinic, including supplies and fold-down exam tables, as well as satellite uplink equipment. Once the doctors who volunteer to staff the clinics behind, all the equipment is left behind for local use.
Her medical mission is challenging but clear: help the people of Haiti. Her mission as a storyteller is not so cut-and-dried. The ethical questions surround doctor-journalists in Haiti apply to bloggers and tweeters and any doctor who sends out information. So Doc Gurley wrote a manifesto about her guidelines for being a doctor first and telling the best stories she can while still following some basic principles.
Before takeoff, we talked about her trip, her rules and why humor is so important, even in a disaster. Here is our conversation, edited for length and clarity.
Q: How did you hear about this opportunity and why did you decide to write about it for the San Francisco Chronicle and your blog?
A: I think of myself as a doctor first and when the earthquake hit, I volunteered right away. But anybody who is interested in doing something for Haiti, I think, always worries that they are taking the place of someone else who should be going. In the first wave, they really needed surgeons, anesthesiologists and nurses because it was trauma, trauma, trauma. At this point in the disaster I think it's appropriate for someone who is more of a generalist because the issues are becoming disease, as opposed to trauma.
Q: So you're a generalist?
A: I'm an internist, which means I'm a dying breed, a nearly extinct species. It's a wonder they haven't stuck us in cages and try to make us mate with each other. An internist - most people don't know this, they say "Didn't you finish your residency?" - is somebody who is ultra-cerebral, doctor to the sickest-of-the-sick adults. In general I don't do pregnancy, I don't do children, I don't cut people open, but if you have 25 diagnoses and a pill box so large it takes a forklift to pick it up, and probably a little addiction and some mental health disorders, you're my patient. It's actually incredibly rewarding work.
Q: There is a really heated debate about doctor-journalists in Haiti right now. Do you think the same concerns are true for doctor-bloggers?
A: Oh yeah. Most people look at that situation and feel a little uneasy, and sometimes they can't put their finger on why. I certainly felt that way too. But it crystallized around violations of the doctor role. From a doctor perspective, especially because I work with a vulnerable population, I feel strongly that people should have the right to know what the motivation of their doctor is. Especially when they have almost no choice about what is going on.
We have laws, like HIPAA laws and confidentiality laws, which have thankfully stayed almost ironclad. No matter how much my profession prostitutes itself or ruins its reputation or gets in bed with drug companies, somehow that little kernel of goodness, about what it means to be a doctor, has remained inviolable. What I found upsetting was seeing people who had no choice have their privacy, their confidentiality, and even the knowledge that their doctor was only there to help them, taken away from them. It has to be called into question when there are multiple roles and multiple priorities.
Q: Should Sanjay Gupta and CNN have stopped their cameras?
A: I think they should have stopped them because I don't think someone in that position can consent, even to be on camera. There is emergency consent, where consent is implied. But in our emergency rooms, we don't let cameras roll without consent. The only things you'll see, even on reality shows, are situations where people are capable of giving consent. The situation in Haiti was not one where people could give consent, and some of them were even minors.
Q: You also wrote about the importance of sharing your experience in Haiti and I think it's pretty clear that this is one of your goals. Is there a good way to share your experiences without exploiting people or violating these privacy concerns?
A: HIPAA has raised a lot of important issues and the laws of confidentiality have had some negative unintended consequences. I don't want to imply that it's not a complex area. For example, almost never do you hear, for the last 15 years, any advocacy stories about people who are deeply mentally ill, because no one who works with them can tell their stories. In a weird way, that has been a negative consequence of HIPAA in that it has erased them.
There's a similar issue in Haiti. If you take a hard stance that no should be rolling cameras, no one should be violating confidentiality, then you erase the vast human suffering that's going on there. I think what is tricky is trying to come up with your own set of ground rules and stick with them. It's not like Pirates of the Caribbean where they say, "They're not rules, they're more like guidelines," but you have to have at least something.
You don't tell anyone's story unless you have the right to tell their story. You must have their permission if you have functioned as their doctor. The other way to do it is to fictionalize, to let people know up front that you have stripped someone of anything that could identify them. I think people in Haiti deserve that as much as people in the States. You need to work with what you've got and make it still powerful and compelling if you can.
Q: Is there anything about mass media or bloggers' coverage of medical issues in Haiti that has disturbed you? Or anything that has impressed you?
A: I found the one most disturbing was the little girl with the head wound whom Sanjay Gupta was treating. [See the video from CNN below] I'm not sure what I would do in his position except ask them to turn off the cameras.
In terms of doing it well, it's hard to say because the mass media has done a lot of good stuff, in terms of keeping people aware of what's going on. I actually found that [NBC Chief Medical Correspondent] Nancy Snyderman's coverage was incredibly touching. [See an example of her reporting below.] I'd never seen her so ruffled and so unkempt. It made me really feel for the situation she was in and she had some great answers about what you should do in that situation.
There is a Bay Area group that just came back with Sutter Health and I think they did an excellent job with online photojournalism. You can tell from the way the pictures were taken that they were very tactful and very aware of their role in helping, and not violating anyone's privacy or confidentiality.
Q: Your strength as a writer is combining smart analysis with humor. Why is humor so important to you as a doctor and writer? How do you plan to maintain that kind of style in a disaster like Haiti?
A: You know, I don't know. Doctors are known for really horrible gallows humor and sometimes it's completely inappropriate. One of the problems with humor is that once every 50 times you misfire, and it's really bad when you do. It's something we all hope we have the time and presence of mind to edit out like a bad smell before it gets to the public. Hopefully I won't have any of those happen.
But I think humor is really important for the world. It's how we relieve stress; it's how we frame things that seem too hard to digest. It also makes it much more appealing to learn a subject. Almost anything you can think about is better with a little humor, as long as it's appropriate humor, and I think that's really the challenge. Making it appropriate.
Q: Is there anything else you want ReportingonHealth folks to know?
A: I find it really amazing the crash of extremes that are already becoming obvious in going to Haiti. My entire medical library, including little videos of how to do really invasive procedures, is on my iPhone. I should be able to text, upload photos, even little bits of video, with my iPhone. AT&T has forgiven all data and phone charges from Haiti until the end of February. I cannot get my mind around the fact that I'll be with people who don't have enough water, but looking at Medscape videos on how to repair tendons. I look at my phone and worry that it will break, so I am hauling books. We generalists are always using crib sheets.