Annie,

I understand what you mean, more then you think.

there are some very unfortunate trends in modern medicine.

I think it is up to us (physycians and patients), as well as health care management to do something to change this.

I recently read a small book called-"medical memoirs", written by one of the former editors of JAMA that raised similar concerns.

he said there are no "good guys" or "bad guys" in this story and there a lot of good intentions, and a lot of funding, but the bottom life is with the quest for cure, we forgot care.

this is taken from my chart during my last hospitalization, in an MG center of excellence-

“Having episodes of weakness. Unable to walk or swallow. Patient very scared. Has been on BIPAP once. VC=1.58. Dr. B informed who does not want to see patient. Dr. F early thought weakness may be functional.”

"patient appeared to be sleeping when I went to give her the 23:00 dose of pyridostigmine. patient appeared very weak, not speaking very well and unable to raise her arms above the bed. unable to record VC. Bipap applied and patient observed over night."

I am not going to describe the horrors of that night, and how I felt when my respirator mask was taken off my face to measure my (unrecordable) VC, only for them to document it on the chart.

so, yes I know exactly what you are talking about.

but, not all medicine and not all physicians are like that, and we need to try and work with those that do care, and want to make it different.