Joan writes:

You're both right about what happens as far as doctors - and other 'professionals' talking about patients, writing notes, etc. It's part of how patients wind up getting so intimidated and why it's so hard to change your attitude and approach. Sometimes I think it's a little easier to do it for your child as the protective parent. But it's important to take a step back and remember that, even though we're in a dependent situation, THEY'RE working for US. We hire them and pay them and if they don't do the job right, counsel them, talk to their superiors, and, if necessary, fire them!!

In the hospital, for example, if there is any staff you choose not to have care for you, they are legally NOT allowed to touch you - it's assault and battery. When my father was dying in ICU, there was a nurse who made me so furious the way she handled my mother in a very delicate situation - treated her like a child... I won't go into it. I went straight to the nursing supervisor, reported the whole situation, and told her that that nurse was never to be assigned to my father again - and she wasn't. As a patient, I've had stupid notes written about me. If a nurse can't figure out that a patient is appropriate being a key member of his/her own care team (which is exactly what we teach), you can't control those comments. But so what as long as you get the care you need?

Don't be afraid to sit down with a doctor you think has a problem with your attitude and let him/her know that the two of you need to work out communications and what YOU need from the relationship and what s(he) can expect from you as a patient. In fact, in selecting a doctor, it's a good idea to discuss that at the first meeting. If that can't even happen, is that the doctor you want?

And, when you say "Sometimes even the patient has to be watchful of things..." I'd take that a step further. I'd say the patient ALWAYS has to be watchful of things. When I go into the hospital, I try to make sure I have a friend (for me it's a little easier - I try to make it a nurse but it just has to be a good friend who's an advocate, preferably knowledgeable - a husband is good, XXXX) - someone you know is on my side who'll stand up for me to help keep an eye out for me. I watch everything, I question everything. I won't take a single pill unless I know exactly what everything is - the NAME of each one. What's going into my IV. Something the dr ordered? No way!! I know everything my doctor ordered so I want the name and if it doesn't match I'm not taking it.

When my daughter had major surgery at age 2, the first day the nurse came over with something for her IV. I asked what it was and she said an antibiotic. "Why?" "The doctor ordered it." "Please check the order - I don't think he ordered any antibiotics." "Oh, I just checked it and this was ordered for her." "Well, please check it again because I'm sure he didn't order any antibiotics." She went over, a little miffed, and rechecked the order. She came back and apologized - it was for the little boy in the bed next to her. What if I weren't there, she gave the medication, and my child were allergic to it?

I know that many of you are thinking about your own hospital experiences and I'm sure you have many, many stories that you could write books about. Think about it like the SCD - this is your life and you're taking control of it. You've just got to learn how and what the recipes are and where to find the resources and accept the mistakes and learn from them but you can do it!!

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