I read the article about HIV in Cuba (www.nytimes.com/2012/05/08/health/a-regimes-tight-grip-lessons-from-cuba-in-aids-control.html) with great interest. In the 1980s patients who had HIV in Cuba were put into quarantine. Prison, only nicer.
I remember those early days of HIV. In the U.S. there was tremendous stigma associated with having AIDS. At first the disease was a giant riddle, no one knew what caused it or where it came from. And that sense of unknowing made people very afraid. Could you get HIV from touching someone who had it? From breathing their air? From a hug or a toilet seat or a handshake or sitting on the same bus?
Even after the virus was identified and it was clear that there needed to be significant blood-to-blood or body fluid-to-blood contact in order for infection to take place, the fear and stigma surrounding patients with HIV remained. And many patients still face it in their families or communities today.
In Cuba the quarantine situation petered out after several years. Yet its work to protect its people from HIV has remained strong. Cuba’s health care system provides free condoms to everyone, free and frequent HIV testing and thorough sex education to kids and young adults. The sex workers in Cuba are very strongly encouraged and supported to use condoms in their work. There is not very much HIV in Cuba these days (fewer than 15,000 cases) and relatively few new infections each year.
In the U.S. we have more than 50,000 new infections every year. Condoms are not free (they are free in our clinic and in lots of health care facilities and HIV support programs) and sex education is not adequate. We never put people in quarantine but the stigma and prejudice that exist in many parts of the country act as a virtual quarantine for some patients.
I wish our politicians had had the foresight and courage to recognize the danger and the cost of HIV in this country back in the 1980s. We didn’t need quarantine but we needed and continue to need much more education. Not to mention availability of testing and treatment centers, free condoms (and the message to use them) and understanding that HIV can and should be prevented. When not prevented, HIV can and should be treated.
Well, it’s an obvious question, I guess. What is Narrative Medicine? I’m asked this question fairly often when I say I have a masters degree in the topic. And a one-line answer is that Narrative Medicine recognizes and values the importance of stories in the medical encounter. How I explain it is to say that a patient comes to the doctor with his or her story of illness. This illness narrative is part of the larger story of that patient’s life, usually an unanticipated chapter or sometimes a direct consequence of some aspect of that life story. In a similar way as doctor or nurses or medicl students, we bring our own life story to that patient encounter. We may not talk about it but it’s there. That I am a woman, a mother, a sister, I like to ski, I grew up in the country, I speak french, these things will affect what I bring to the encounter. And then there is the story of the patient getting care from the doctor, of Joe Schlebotnowitz seeing Dr. Ball for his pneumonia. Narrative Medicine gives us tools and perspectives to understand that when we listen closely to those stories and reflect on them, when a patient feels that he or she is really being heard and when a doctor or other provider feels that the connection with the patient has truly been made, then there is better care.
I saw a new patient today. He came to the emergency room short of breath. He told the doctors and nurses in the ER that he didn’t have HIV, or that he was unaware that he had it. A review of his chart showed a visit to a doctor at our medical center three years ago where an HIV test was done and came back positive. A note in the chart documents that he was contacted about this and told of the result. A follow-up appointment was made. He didn’t come back. Three years later he is in our emergency room short of breath. This is a bad sign. Where has he been? What has he been doing? Why, when he started feeling short of breath and began losing weight over two months ago, why didn’t he come in then??
In a session with a small group of medical students we talked about patient relationships and social media. We read a piece that appeared in the NY Times Magazine in 2010 in which a resident “friended” one of her patients on Facebook. The patient invited her to his site to look at pictures from a trip he’d taken. Seeing the photos, the resident saw the patient as a “hot” guy, and not just the desperately ill young man in the ICU. But later, when he tried to communicate with her on the Facebook site, she didn’t answer him. Was she right? Was she wrong? What kind of commitment did “friending” him entail?
