How to be an advocate for patient with the doctor

[ranesess]

How have people figured out how to be an advocate so that the doctor gets accurate information?  I write lists and have the list to ask the doctor or the nurse, depending on who my husband is seeing.  My version of what has been going on from my observations are different than his from appointment to appointment.  I will disagree about sleeping, pain, shortness of breath, etc.

My husband says he feels he has to defend himself against me to his doctor/nurse.  I'm not attacking him, I'm trying to advocate for him.

Has anyone else figured out how to do this?  I'm on his side, believe me!  I also take notes, and I'm glad that I do, because it's easy to forget some piece of information about what to change.  My husband has been both thankful and irritated by my 'help'.

Thanks.

[Miss604]

Hi It's me Cathy. Gyess what? I got a letter from Dr. cecil yesterday and I was SO dam happy to FINALLY hear from him Rene!! I owe it all to YOU and your husband!! He gave me this other doctor (Carrol Levy) address and phone # so I go tomorrow for the results of my liver biopsy and then I am calling this doctor Levy to see if I can schudule a appt. with him!! Never hurts to have more than 1 opinon when dealing with Hep C and cirossis, right?? I saw a phych the other day at the "methodone program" and she wrote me a script for ZOLOFT I haven't had it filled yet! I will, just takes a min for my drugstore to do iit..I just HOPE when I start it that it WORKS and stops my mind of thinking all these negative thoughts. Anyway how is your "other half" doing tonight? " If I was him I would be so dam happy to have you in my corner caring as much as you do Rene, you are so dedicated to him, he must realise what a lucky man he is!! Keep in touch with me...I will let you know what the results were tomorrow!!! Nite

[portann]

I must be missing something here. I do see from one of your other posts that your husband also has an oncologist, so his treatment may be more complicated than most.

Still, I'd have my husband kicked out of the doctor's office so fast if he ever pulled something like that on me. So would my doctor. I'm surprised your husband's doctor doesn't stop you in your tracks. It shows a disrespect for your husband to contradict his account when he is the one living the ups and downs of tx. Is there another element to this that you haven't mentioned, like micromanaging his life so that he has no voice of his own?

I would never contradict him in front of the doctor. It undermines him and yourself. I don't see this as being his advocate but rather as sidelining him and making him an object of your discussion between the doctor and yourself.  Give him heck privately if you're convinced he's lying through his teeth to the doctor.

[eureka254]

I'm doing my best to be my husband's advocate as well, and it's not always easy, nor is it always appreciated (at first).  Sometimes what we think is right for the patient is not always what the patient wants, and that goes for us as spouses as well as for the doctors treating the patient.  For your advocacy and involvement to be effective, you really must have the trust of both your husband and his providers.

I accompany my husband to every doctors appointment and procedure, and I've learned to make it a point to discuss my questions and concerns with my husband the night before each visit.  It can make for some interesting discussions, to say the least, but at least he's not made uncomfortable or caught off guard when I bring up my concerns during the visits.  I've also learned to let him speak first, freely and completely, (unless he asks for my input), and wait until the end of the visit to address any unasked questions or differences in my observations and opinions.  ("Maybe I'm wrong, but I've noticed sometimes..." as a preface, in my experience, has been a good way to soften disagreements that may be perceived as an "attack.")

Regardless of all you might do to make your advocacy a good thing and the right thing, don't be disheartened if there are times when your husband becomes irritated.  This is such a tough disease, I think it's really par for the course that tempers get a little frayed, even in the best 'patient'.  There are so many unknowns and variables when dealing with hep c, it's tough to sort it all out, alone or with help.  I'm sure deep down your husband appreciates you and all you do, even if there are difficult moments.  

Hope this helps.
Best wishes,
~eureka

[Trish77]

I go to all my appointments by myself and I AM the patient, so maybe I'm not the best person to respond to this.....have to ask you though ... have you considered discussing your concerns *together*  BEFORE you go to the doctor's office?  

Before I would go to parent / teacher interviews for my kids, I'd sit with each of them and go over their report cards and ask them questions and also ask them if they had anything they wanted me to bring up to their teachers.  That's my kids though.  This is your husband a grown adult and it's his health issue and I don't hear his voice in there anywhere so far?  You're making the lists and making the observations and doing the advocacy and it sounds like you're deciding on your own what gets listed, observed and advocated for and he doesn't know until you bring it up in the doctor's office.  It sounds a bit like you're taking control over his health issue rather than sharing it with him?

I think I'd feel pretty blindsided if I speak up about my own health to my doctor with what I believe is accurate, only to have my partner speak up and contradict me right in front of my doctor like that with no warning and then have to defend what I just said to not only my doctor but my partner too.  Regardless of how accurate you think your notes and lists are...he's the one experiencing the health issue and sounds like he feels he's pretty accurate also.  So you have a bit of an impasse there, it seems.  

Can this be avoided by sitting down with him and comparing notes BEFORE you get to the doctor's office and talking to him about your concerns before you get there and find how what he plans to bring up and letting him take the lead and only jumping in when you feel he needs the support or he's forgotten something and empowering him to take charge of his own health by supporting him rather than taking over?  Or asking him if he's going to bring up certain things and if he'd rather not, ask him if he's okay with you bringing them up?

Dunno, just tossing things out there.

Trish

[Linea]

Perhaps you could both do the notes together...as a ''united front" so to speak.  And doses and doses of patience is a must--tx is tough duty.  Doing things when you 'don't feel like it' or when he is 'iritated' is beautifully charitable--and will find him thankful as ever.  
I wish you both the very best...hang in there.