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1. Matthew:
   First of all, thank you so much for your wonderful blog. This is the second time I am writing to comment. (I also commented on your September 14th entry, “PHYSICIANS: Venting about the AMA, just a bit.”)
   I must admit that I was not at all surprised to learn that “public opinion polls show that 80 percent of online Americans would like to communicate with their doctors via e-mail.”
   I was even less surprised to learn that, according to the American Health Information Community (AHIC), doctors do not seem to have equal enthusiasm for this kind of communication with their patients.
   And — I sincerely wish I didn’t have to admit this — while I was reading the article, I predicted early on that the main obstacle for doctors would be lack of reimbursement for e-mail consultations.
   My husband died this past November, fifteen years after first being operated on for a cancerous brain tumor. From the time when he was initially diagnosed in 1990, until he died in 2005, I was to find that his doctors were very short on communication skills – even during the times when he was hospitalized for the many complications and side effects from the original surgery, radiation and chemotherapy.
   As we proceeded on our journey, my husband and I both began to realize how communication with his doctors was becoming more and more important to us. Unfortunately it did not seem to us that it was important to his doctors – even though, by the end, they had known us a full 15 years! Communication with patients just doesn’t seem to be high on too many doctors’ lists.
   This is a shame, not only because patients and family members are so frightened and needy. But also, because in my opinion, communication would be helpful to the doctors, as well.
   I would like to share one example of a time when I believe better doctor-patient communication would have positively affected my husband’s outcome:
   Although my husband had had many surgeries over the years for complications from the original treatments, it wasn’t until 2001 that he had a brain tumor recurrence. By this time, because of the radiation to his head in 1990, and the several surgeries after that, his skin was extremely fragile.
   For a total of 8 months following this 2001 craniotomy, his skin kept opening up and getting infected; he was constantly leaking cranial fluid. The doctors performed operation after operation to try to find two pieces of skin that would finally heal. But each time, his skin became even more frayed, and it opened up and leaked yet again.
   Over the years, I had become a pretty proficient medical researcher. I tried to communicate with his doctors; I begged them to look into solutions for healing the wound, other than re-operations. I don’t know if they just weren’t used to family members suggesting medical approaches or not, but they simply didn’t seem interested. All they knew – or all they wanted to know – was surgery.
   As the time went on, and my husband endured even more surgeries, he was becoming more and more brain injured.
   I begged the doctors to look at the information I had found. I printed it out and put it in a neat folder with appropriate headings and sub-dividers. I even included a disk with the articles (and citations). They never read it.
   All I can figure out is that they really didn’t feel that communicating with a patient’s wife – even one who had kept her husband alive and happy for 12 years beyond his original prognosis – was important.
   Through my research and my professional contacts, I finally found the treatment that healed my husband’s skin. But by this time, although the treatment saved his life, he had become severely brain injured. He spent his last 3+ years at home with me, bed-bound, paralyzed and unable to remember much at all.
   I sincerely believe that, if my husband’s doctors had been open to a more collaborative relationship with us, the problem could have been solved much earlier, and my poor husband wouldn’t have spent his last several years so severely compromised and miserable.
   So, am I surprised that doctors don’t rush to communicate with their patients by email? Unfortunately, I am not. And further, I don’t think this situation will change for many years. I sincerely hope I am wrong.
   I wrote an article about our experience that was published in the National Brain Tumor Foundation’s newsletter. You can read about it at
   http://www.braintumor.org/pservices/pdfarchive/
   03searchw.pdf#search=%22%2Bschopick%20%2Bsilverlon%22
   (If the above link doesn’t work, you can read the article by going to Google, and typing in: +silverlon +schopick, and the article will come up!)
   Julia Schopick
   http://www.honestmedicine.com