Patient Advocate?

[jacobson1972]

I haven't posted in a few weeks, and unfortunately, there isn't much new to report. My mom was admitted again to the hospital becuase of severe back (previous stress fracture) and leg (nerve) pain. After two weeks, her pain level has just within the past two days been reduced to a 5. They are now talking about back surgery to insert a rod.

I'm very unclear on the meds that she's on, or the procedures that they are doing. I do know that they planned on starting Tarveca (sp?) but are holding off until she is 50% mobile. It just seems like my parents have no idea what is going on or what the next plan of action is.

I have heard of patient advocates, but am unclear what they do. Any info provided would be very helpful and greatly appreciated.

Beth

[kimblanchard]

Hi Beth,

My mom found a patient advocate for my dad when we were having difficulty having tests performed the way they should be or having the correct care/understanding for nurses. I know that the advocate was very good at contacting the specific departments that the doctors/nurses worked in and making sure that things got moving in the right direction. I know that it helped her stay away from being the "bad guy" so that she could focus on my dad. I would definitely contact the hospital and at least talk to an advocate and see what they could do for you specifically, sometimes just talking to them could be helpful, maybe they could even point you in another direction if they couldn't help.

Tammy

[Darci]

This is an interesting question, and I am wondering what kind of info others will have. We have the same problem in that my in-laws get information, then lose it, forget half of it, etc. We need to have a better direct link to information too!

[pammie]

Beth, am not sure what to tell you. Information is very important. Some of the people we had to deal with thought we were being pushy and hard to get along with because we wanted to know what and why things were done. How can you make good choices if you don't know what a medicine is for, why a procedure is done, etc. Fortunately the oncologist we finally got to see was very helpful and answered our questions. An advocate is wonderful. I wish we had one in the beginning of all this to tell the staff we were just hunting for information. All hospitals do not have advocate systems. Maybe the one you dad is with has advocates. prayeres for you and your folks. pammie

[Connie B]

They need a TAPE RECORDER for Doctor's appointments, or doctor's instructions. These are VERY helpful.

However, in the case of your mother and her pain and health issues, I am going to go out on a limb here and say, I have a feeling even the doctor's aren't sure what to do next. I'm sure they are all just trying to get her stable. And then they will worry about her cancer treatments. I would think her comfort right now is NUMBER ONE on the list.

Do you know what kind of cancer your mother has? Is it Small Cell or Non Small Cell? Has her cancer spread and if so, where? How is her overall health? You have nothing in your Porfile so, it's hard for us to remember her status.

Best wishes and good luck.

[kamataca]

I'm a bit of a cynic about "patient advocates" after an experience we had a few years ago. The Drs (BC--this was Crohn's related) wanted to boot mom out of the hospital WAY before she was stable, and we were arguing against it. They sent in a "patient advocate" who pushed their agenda. Finally she admitted that she worked for the hospital as well.

I'm sure there are great and moral patient advocates out there. Make sure to check them out.

BTW, Mom did get to stay in a few more days until she was stronger, and we've never been back to tht hospital. I can be a real pain in the a** when someone is messing with my family!

, Kelly