The Doctor Will See You Now

We live in a city that has many very good hospitals. One of those hospitals is a teaching hospital, and many of the doctors that my children visit were graduated from there. It’s an inner city hospital which means should you have to visit the emergency room, you may find yourself sitting next to someone who has been shot or stabbed, and you will most assuredly hear very colorful language floating through the waiting room. One statement I have heard many times is that if someone is hurt very badly or is really ill, this particular hospital is the place to go. I agree with that assessment. But being in this hospital does present at least one challenging decision making opportunity.

The very nature of a teaching hospital is that you have a lot of medical students that want to experience and learn from the patients. If you happen to be a patient that has an unusual or rare condition, one that doctors, let alone medical students, may have few chances to view, you will be swamped with visitors in white jackets during your hospital stay. Such has been my experience with Ashley’s visits.

Besides being deafblind, which in itself is a very low incidence disability, Ashley is diagnosed with juvenile xanthogranulomas. This condition presents with multiple tumors, and very, very few people in the world have been diagnosed with this. For Ashley, it meant she had tumors on her skin, under her skin, on her brain, ears, and eyes, and on other vital organs. She has had two brain tumors removed in the past, and currently has three more. She has also had her gallbladder removed due to tumors. The normal (seems an odd word to use) course of the condition is that tumors stop forming around age 3. Ashley, at age 12, still has tumors forming. She is the oldest documented person with this condition. You can imagine the number of visitors she gets when she goes to this particular hospital.

The challenge for me is weighing the value of the ‘teaching’ with the issue of privacy and Ashley’s need for recuperation. My experience has been that the doctors doing the teaching get a little miffed if I request visits be limited. During one particularly long stay at the hospital, I finally had to ask that the student visits be limited to once in the morning for 10 minutes and once in the afternoon for 10 minutes. The senior doctors did not appreciate that at all, and I think my actions ultimately had a slightly negative effect on the care that Ashley received during that hospital stay.

I wonder if there are any classes for the medical students on sensitivity training and respecting a patient’s right to privacy?