We live in a city that has many very good hospitals. One of those hospitals is a teaching hospital. 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 challenge.
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. 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, 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?
Good grief! A little sensitivity training should be mandatory! She’s not a specimen in a jar for goodness sakes.
Sometimes they must forget that while your daughter is someone they can learn from, she is a person. She is not just science. She is a human being. I think some doctors have a great bedside manner, and they get the whole human being concept. Some doctors don’t, and I think those are the doctors that tend to look at their patients as case numbers, and not as people that need their care.
They oughta teach a class about THAT at the university.
I vote for protecting your child as you did, Deborah.
The ‘teaching hospital’ is another systemic feature that is not easily resolved. Most medical schools do include ‘bedside manner’ courses. Alas, education does not cure this system illness.
We get this all the time with Ivy, especially last year when she had methaemoglobinemia. Every man and his dog came to see her and tell us how rare Ivy was. They even focused an exam around her! They talked over her about slight dysmorphic features. That was the end for me.
It gets exhausting and I get the feeling that you had when Ashley’s care was compromised when you stuck up for her privacy. It’s hard to balance all of that out. Hugs xx
[...] her daughter’s, experience at a teaching hospital this week at 5 Minutes for Special Needs! The Doctor Will See You Now is definitely a must read! As we prepare to celebrate Easter this weekend, there are so many [...]
Ah yes, a difficult thing to navigate. My daughter has Marfan Syndrome and is always subject to such “teachable moments” when an intern happens to be in. Right now it doesn’t bother her to have these doctors check her out (she’s 5) but in the future it may. We’ll play it by ear as we go along. I’m glad you were able to stand up for Ashley and her need to rest and recuperate.
I think that they should respect that she is a child who needs her privacy and rest