Another medical blog is gone. So long, Barbados Butterfly.
Written by an Australian surgical registrar (by my estimation, the Australian equivalent of a senior resident or fellow in the States), Barbados Butterfly was one of the best of the medical weblogs. When Barb pulled out her pen, you never knew what you were going to get. One day it was spleen, the next a quiet medical lesson, the next a window into the life of a surgeon or the life of an Aussie, the next a nugget in the woman-in-medicine mode, the next a carefully aimed and controversial medical opinion, the next spleen again. And she wrote well, which is everything. She probably works twice as many hours a week as I do, and writes more, which made her all the more remarkable.
Bloggers come and go. One day I imagine I’ll go, too. We get tired of writing; the real world intervenes. Sometimes we run out of ideas. Luckily, a blogger gone is not always a blog gone forever — some people and come back after a break. The Blog that Ate Manhattan, another of my favorites, rewarded me in this way. But Barb won’t be back, at least not in the same form. Because she didn’t leave. She was suppressed.
Barbados Butterfly was shut down by Barb’s employer. Sadly enough, Barb’s employer is a research hospital. One would think that a teaching institution, dependent as it is on free thought, would think better than to resort to censorship. One would think. But Barb’s bosses discovered her anonymous blog, and found its content threatening enough to drive them to discipline her and order her to shut it down. The reason they gave, as nearly as I can understand it, is that they were concerned about patient confidentiality. Since Barb blogged anonymously and never named her hospital, much less an individual patient, it is not clear exactly how and when she crossed that boundary.
Certainly there are some things doctors should not write about. A doctor’s first job is patient care, and patients have every right to feel confident that their deepest secrets will not be posted for all to see on the world wide web. On the other hand, doctors have the freedom of speech like everyone else. Freedom of speech means freedom from censorship, not only government censorship, but also that of public and private institutions. Free speech is not simply an individual right, it is a sign of an institution's good health. Barb has said in her blog that writing is enormously helpful for maintaining her sanity. Reading her writing has also helped us readers maintain our sanity. Which is one reason among many why suppressing it does real harm.
Perhaps health institutions would take a suggestion: Instead of banning blogs,they could sponsor them. If a hospital knows what its doctors are writing, it can work with them. This give-and-take processe does a lot more for quality of care than silence. Further, I believe patients like reading what their doctors think. Patients entrust their lives to the care of health care professionals, and half the time know nothing about them. A public medical blog allows raises that curtain between doctor and patient, and can increase the patient’s confidence in medical care.
Blogs have to be honest to be believable. Readers can tell the difference between a doctor who is speaking her mind and one who is spewing promotional schlock. For a medical blog to be of any value, the writer has to make it real, and that means telling stories that have the ring of truth to them. Barb told the truth about her experiences, and that meant that she did not always put medicine, or the people who practiced it, in the best light. But if we medical people do not admit to being less than perfect, what is the point of saying anything? And if we say nothing rather then appear imperfect, does this help medicine, or render it sterile?
The problem with blogging in general, and with medical blogging in particular, is that the writing lacks the usual editorial controls. As an online writer I have to constantly remind myself that I do not have an editor. If I write something stupid, the only thing that stands between me and ignominy is the enter key. Articles in journals and magazines wend through several stages of review before making it into print. The feedback process is crucial, and part of the writing process. All we bloggers have our comment posters to correct us. Posters are not always very kind, and not always very correct. So it can be hard to avoid going overboard.
Barbados Butterfly was very real, and this meant she wrote things that probably applied to real people. Barb sometimes published the CT scans and X-rays of her patients. She described cases and patient profiles. And, in what may be her greatest sin, she sometimes documented the foibles of her colleagues. This is the reason I think (and Ex Utero thinks) that Barb was shut down. The underlying issue was image control, not patient confidentiality.
Barb was pretty careful about removing identifying facts from her cases. She blogged anonymously, making it hard to identify even the hospital where the events were taking place. There were no names, no dates. (Ironically, Barb’s employers probably did more to expose the identity of the patients involved by publicly making an example of her.) I am certain that Barb changed the names, ages, and sex of patients just as I do. Many of my patients get a sex change before they go to the web. Yes, Barb did post a few X-rays, but somehow I doubt any patient ever logged on to her site and said, “Oh my God, that’s my chest X-ray!”
Agreed, there have to be some boundaries. On the other hand, singling out blogs as a great new threat to patient confidentiality is a kind of chauvinism against the new. Medicine has been publishing case studies for centuries. In almost every issue of every medical journal, there is a case report section with stories about interesting patients. The Journal of the American Medical Association has a weekly column called “Piece of My Mind” which is a very close approximation to the case stories that appear in most medical blogs. No one accuses JAMA of being a threat to patient confidentiality.
The excuse the medical establishment offers is that publications like JAMA are trade journals and thus unlikely to be seen by the general public. Blogs, on the other hand, are for public consumption. This is a weak argument at best. Medical journals are available to the public and hardly under lock and key. Even more important, the contents of many medical journals are available on the internet, often as freely accessible on Google searches as medical blogs are. (Go to Google and type in “JAMA piece of my mind” and see what happens.) If blogs are such a threat to patient confidentiality, medical journals need to reconsider the idea that their own case reports are confidential.
Consider the case of Ashley, the 6 year-old girl in Seattle whose case report appeared in the Archives of Pediatric and Adolescent Medicine last fall. Ashley, bed bound from static encephalopathy, underwent surgery and hormone treatment to keep her body immature so she could be cared for more easily. The report eventually sparked a media sensation, and the ethics of her body-altering surgeries were discussed in print across the nation. In the orginal case report, Ashley's last name was not given, and her first name was probably changed. Her family remains anonymous. Yet anyone who thinks that these steps will protect the family’s privacy is gravely deluded. The journal article identified the hospital where the procedures were carried out, and the names of some of the doctors who were involved were printed in the newspapers. Finding Ashley would not be that hard. The Seattle Post-Intelligencer even published a photo of the girl. If a prestigious, peer-reviewed journal like the Archives can get away with such paper-thin confidentiality with nary a complaint from the medical establishment, it is difficult to see how Barbados Butterfly could be accused of violating medical standards.
Ironically, Barb may have increased rather than decreased the risk to herself when she chose to blog anonymously. Most medical bloggers, especially women, seem to prefer anonmymity, and while I understand the reasons for it, there are also attendant dangers. There is always the risk that an anonymous blogger will be identified, and there is something about an unmasking that provokes the question of legitimacy. Why hide what you are doing, people ask, if you are doing nothing wrong? On the other hand, if a person was public about it all along, there is not much to say. I have been blogging under my real name for 2 years now, and if my employer were to take me to task for my writing, my response would be: “Where were you? I have never made a secret about what I am doing. If you had a problem, you should have said so a long time ago. My website address is on my curriculum vitae on file in your personnel office. So get lost.”
The other advantage to blogging publicly is that it keeps me honest. Knowing that everything I say is easily traceable back to me, I have to be careful. I do not think Barb has ever been careless, but it is fair to say that if she had blogged publicly she might have been called out for any perceived indiscretions, and could have corrected them long ago. Maybe this would have helped.
I am certain we could avoid all of these problems if we simply refrained from talking about patients our websites. However, I think discussing cases is an important part of the teaching process. Doctor comes from a Latin word meaning “teacher.” I think teaching is a very important part of doctoring, both inside and outside the exam room. When medical bloogers reflect on patients, both emotionally and intellectually, they demonstrate the processes they go through in caring for them. Medical professionals are told endlessly during their training that they need to understand their patients. Patients also need to understand their caregivers. When patients come to understand what I go through, what it takes, to care for a patient, they come to a deeper understanding of the therapeutic relationship between patients and caregivers. This is an important part of public health.
Medical people learn thorough cases. No textbook can ever convey the full meaning of a disease; a living person is the best teacher. In the same way, no patient can understand what doctoring is all about without context. The wonder of medicine is seeing the real thing: the real disease in the real patient. I doubt I would have anything interesting to say about medicine at all if I could not relate it to flesh and blood. Talking medicine without talking about patients is like filming a porn movie with mannequins instead of actors.
I have made online mistakes. Some time ago I had an interaction with a patient, and then posted about it within the week. I changed the name, the location, the age — all the usual stuff. Strictly speaking there was nothing in the post that could have pointed a casual reader to the real patient. And yet, when I re-read the post a week later, realized that I had made a significant mistake. The patient had just been in the hospital. The nearness of the interaction to the post meant there were too many fresh memories involved. I had no doubt if the patient, a family member, or a nurse involved in the case had read that post, that person would have instantly identified the case, simply because of the short time interval. Luckily no one noticed, and time passed, taking the risk with it.
Some of my colleagues argue that the only way to properly preserve anonymity is to change absolutely everything. Every detail, every symptom, every complaint has to be placed in the blender and scrambled beyond recognition. This is certainly a practical solution, and I use it sometimes, but I am not entirely comfortable with it. Changing everything renders fact into fiction. There are some bloggers (whom I will refrain from identifying) that I think open a medical textbook, pull out an unusual illness, and concoct a story around the symptoms. This is creating medical fiction. Fiction is a fine thing, but it takes the real world element out of the discussion. I can hardly argue that it is tough for a patient to live with complex regional pain syndrome if I am not talking about a real person who is living with complex regional pain syndrome. It was also tough for the little old lady who lived in a shoe, but we can’t draw real world conclusions from her dilemma, can we? She doesn’t exist.
So far, I have not been criticized for writing a patient vignette that was too transparent. I have occasionally been criticized for being too truthful. This may also have been Barb’s problem. I can’t speak for Barb, but I can speak for myself in saying that I do not usually play the hero in my patient stories. I could portray myself as the greatest, most brilliant, insightful, and caring physician in the world, but I know I am not that. Sometimes in my stories I am irritable, indifferent, unobservant, self-centered. Some of my posters don’t take this very well, and take me to task for not being the ideal doctor. But I am not the ideal doctor, and for that matter, I do not have ideal patients. If you want perfect doctors, move on to the fiction section. Here in the real world we mess up.
Sometimes Barb could be a bit sharp in her comments about her patients and the people she worked with. Nor did she withhold the scalpel from herself. This honesty made her larger, not smaller, in my mind. Honesty, however, is not something people in authority like to see, especially if they are not in a position to spin it to their advantage.
Clearly, medical people who post on the web have to be very careful about what they say. For the most part, they are. Patients forget that doctors are entrusted with a lot of things besides patient confidentiality. Precision is very important in our field. Anyone who has to find the words to tell a patient that she has cancer is capable of restraint online. Perhaps — no, definitely — medical schools and medical societies need to draw up guidelines for ethical online behavior. But shutting down doctors’ blogs is plain stupid. Doctors are not enjoined from speaking to the press, from writing books or newspaper columns, or from speaking in public. Blogging is not any different from any of these. It only feels different because it is part of a new technology, the internet.
It is embarrassing to me that medicine, despite its scientific roots, has often been slow to accept change. Blogging is here to stay, and the internet will become more and more important in medical practice. I won’t be so crass as to congratulate myself as a pioneer, but as a doctor on the net I am certain that I am on the leading edge of something, rather than a member of an irritating rebellion that must be suppressed. The bosses of medicine need to learn that.
Perhaps there was content in Barbados Butterfly that Barb’s superiors had a right to be upset about. If so, they could have worked with her on it, perhaps laying out what can and cannot be ethically expressed on the worldwide web. In blotting the site out, they threw out the good with the bad. In trying to shame her, they brought most of the shame upon themselves.
So long Barb, and thank you for what you have done. I understand if conditions prevent you from responding.