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Private Patient Advocate?
My mother was diagnosed with stage 4 breast cancer 2 years ago. We are all aware that it is highly unlikely that my mother will go into remission. Our goal is to get her as much time as possible at the greatest quality of life.
She is doing well on her chemo regimen but it has become very clear to me that she has utterly shut down when it comes to processing information or asking questions about her disease/treatment. She is in her late 60's and was raised with the mindset that she should do what she is told. She doesn't push the doctors for more information or assert herself in any way. It has taken her almost a year to call a new cardiologist because she doesn't like the one she has.
I live 3000 miles away. When she calls me to tell me about her appointments, things become tense between us because she just can't remember what the doctor told her and gets frustrated with my questions. I could go into detail, but suffice it to say that we need to do something differently. She takes friends with her to take notes, but I never get to see the notes and she rarely takes the same friend, so information is being lost.
I want to hire a private patient advocate (preferably one with experience in oncology) to attend the informational appointments with my mother, to ask questions, to probe on some of the answers and then discuss the results of the meetings with me and my mother. Does such a service exist? How would I find one in California? I have googled, but can't find what I think I am looking for.
Can someone point me in the right direction?
Re: Private Patient Advocate?
Unless your mother is mentally and/or physically unable to make her own medical decsions and a doctor as questioned it you need to leave it alone.
Maybe the reason behind things being tense is because she just doesnt want to tell you for various reasons.
I know when my grandmother was sick she didnt tell anyone and no one knew until she wanted us to know.
this one:
http://www.advoconnection.com/index.asp
I think the two of you need to talk at some point about what she wants to get out of treatment. The only person who can evaluate the trade off in terms of pain v. time is her and hard as it is, you need to be able to respect whatever decision she makes.
The info you get is overwhelming so I don't fault her for being too tired or intimidated to keep up with it. I don't think hiring a patient advocate is a bad move IF she wants one. I wouldn't force this on her.
I don't mean to make you feel bad, I lost my Mom to stage 4 breast cancer last year and she was sick for about 10 years before that. But your Mom needs to be empowered to make her own treatment decisions and to feel like you will respect and support her in those decisions regardless of what they are. IMO one of the worst parts of having cancer is losing ownership and autonomy over your body, I would imagine she's struggling with that. Mostly she just needs your love and support period.
Thanks for the input KellBell.
My mother, my sister and I are all very clear about what we want out of this situation. Short of a miracle, the cancer will eventually kill my mother. Our hope is that we can get as much time as possible at the best quality of life. We have all decided to make spending time together the highest priority. I just took my mom to Rome for Easter and my sister travels to see her every month.
My mother's cancer is currently being managed and we have been looking into clinical trials.
The issue is that my mother says one thing to us, but then either doesn't act on it or acts in a way contrary to what she has told us she wants. Example: She tells my sister that she wants me to conference in on the phone with her oncologist appointments. She will call the doctor's office and tell them she wants to have me in on the appointment. But when she is in the room with the doctor (with a note-taking friend so there are no confidentiality issues) she doesn't insist. The doctor will call me after the appointment with my mother still in the room to give me the update. When I asked why I wasn't conferenced in, the doctor tells me that mom didn't want it. When I talk to Mom a couple of days later, she tells me that she DID want it, but that the doctor didn't want it.
Last night's situation was beyond annoying. We had done a lot of talking while in Rome about what was going on and questions she wanted to ask her oncologist. I asked mom if she wanted me to type up the questions we had so that she could take them with her to the appointment. Later, when I ask my mom about the doctor's answers to the questions, she tell me that the doctor can't answer all of the questions because she doesn't have all the info yet and mom can't remember the other answers so I should call the note-taking friend who can explain everything to me. Literally - my mom wants me to call the friend and ask all of my questions because she didn't understand everything the doctor said. When I asked why she left the doctor's office without understanding what was going on, she said that the doctor was very busy.
My mother is a very 1950's "good little girl". Sometimes I think that she figures that if she just does what the doctors are telling her, everything is going to be ok. I know that she is literally shellshocked by the cancer - she has just stopped processing information. She doesn't ask questions, doesn't push for appointments and won't insist that things be done properly.
I understand what you are saying about respect, KellBel, and that is what I have been trying to do. When I offer to make phone calls and follow up on things (it is hard for my mom to do that during the work day, she readily accepts and says she is very grateful to have that off her plate. She just seems relieved to abdicate responsibility for all of it.
Since she already takes friends with her to appointments, I am hoping she would be open to a patient advocate. I am willing to pay for a medical professional to attend the informational appointments, help Mom ask the questions she wants to ask, relay the information to me and my sister (to alleviate the stress of mom trying to convey the info to me) and help us know if this is really just how long things take or if we should be pushing more.
So I am going to find some options and ask Mom if she wants a patient advocate. Hopefully she will agree and take a source of stress out of both our lives.