Hi Antoinette.
Gawd, I have been in those shoes.
Years ago, I had spinal fusion and lamenectomy (L4-L5-S1). No one bothered to tell me I had to learn to walk again. No one bothered to tell me the pains/leg numbness, etc as potential outcomes. I was 21, young, naive and didn't arm myself well at all with info. I knew my dr was top of the line and just trusted him. In that time, I have learned that Dr's are not Gods, I learned that the nursing staffs are the ones with heart and will share info with you if you ask, but most of all, I learned that I need to take control of my medical situation, to arm myself with as much info as I can, to ask any and all questions (even if they sound stoopid to the dr's) as it's my body, my rights as a patient to have me drive my decisions and outcomes, not them. To them, I am a number, a demographic to the facility in which they work... but, without me, their school or house loans do not get paid. I have learned to take control and never again let any dr dictate to me what to do, when to do, or how to do. It's my body, not their's and I will be the one to live with the outcomes 24/7, not them.
I so feel for what you write here. Malpractice insurance/lawsuits have taken over in this country. Patient protection, unfortunately, is in the hands of the courts, but in my eyes, we can prevent that from happening if people take control of their situation first before believing every word out of a dr's mouth. If there are advocacy groups, I'm not all that aware of them. I'm sure they exist (ah, Google is our best friend) but, for me, I think if given the opportunity (and not being in an emergent situation that split second decision is required), it's up to the patient to take control first and foremost.
Phyllis