Advocate vs Support Person for Medical

[Lecka]

I am following up to a post I made a few months ago.  
 

I went to the doctor with someone and felt conflicted about not asking questions, that I believe are pertinent, but did not think it was my place.  
 

I have been in a similar situation now with two other people…..

 

I have definitely seen, I would say I see myself now as being 95% support, and 5% advocate.  
 

I personally would have a lot more questions, there are things that jump out at me that I would want to ask a question, but if I can see the person I’m with and they are content, it would definitely not be helpful.  
 

I also have more of a role than I thought in expressing confidence in the medical care, saying I think it seems good, etc.  If I ask some of the questions I have in my mind, it would be really counter to that, in practice.  
 

I would still bring things up if I were really concerned, but it’s a much higher bar, than for me to ask a question for myself.  
 

It is still shocking to me, when there are questions that are so obvious to me, and the person I’m with does not notice “hey ask why it’s this way and not that way.”  But if they don’t, it’s definitely just stirring things up, unless I really find it concerning.  

[Harriet Vane]

Ask the questions. They brought you along to the doctor to help them, right? And medical care is too important and too expensive and too time-consuming to have to address things in multiple visits. If you're concerned about "appearances," preface with something like: "Do you mind if I ask a question? I'm confused/concerned/etc."

[Spryte]

Talk to your people in advance, and find out what they want.

I personally would want you to ask questions and get all the info! I think of my support people as extra brains when I might not be on my toes — you are there to help me remember to ask the questions and help recall the info later. DH and I have been doing a lot of this lately, so we’ve actually had these conversations recently. 

[Faith-manor]

My mother in law has to be driven to the doctor since she cannot drive anymore, but usually will not allow me to do more than wait in the car because she doesn't want me to ask questions or know her business. I have to honor that even though I am gobsmacked at the things she doesn't ask or know about her conditions. Mark's brother, whom she listens to more than us, tried to get her to change that policy and let me at least go in and listen. She adamantly refused.

It is maddening. However, legally and morally, you just have to honor the patient's wishes. If they didn't bring you along to ask, then you have to bite your tongue or not go in with them to their appointments.

Edited April 19 by Faith-manor
Typos I hate the kindle

[BusyMom5]

Last year I was that support person and I really felt the need to not push my way in, just be the support, the driver and the coordinator.  I didn't want to over-step, the issue was with a private body area, and I know the person values their privacy.  At the first few visits I stayed in the waiting room.  After 3 or 4 months, with the person still having issues, no testing, various medications that weren't working, I decided to take matters in hand.  I called the Dr office and demanded a referral- sort of like " Person has been having severe pain for 4 months.  These medications are not working and she needs a referral to a specialist. She will be calling to make an appointment for the referral in 10 minutes."  Of course since they had done no official testing, they couldn't refer her anywhere ;)  but that got the ball rolling, ultrasound scheduled by the next week, CAT scan, etc.  She got the referral and within a month surgery, problems solved.  When we finally go to the specialist,  she asked me to go in, ask questions, take charge- and I did.  Turns out her Dr hadn't even done a pelvic exam!!!!  All the pain and symptoms,  she was just Rxing her various meds to try,  without even doing a physical exam.  The cyst was palpable, that side of her stomach visibly swollen.  I had no idea because I wanted to give privacy, but that privacy meant she didn't get proper care.  That exam should have been done on the first visit, a good 6 months before her surgery.  That was 6 months of daily pain! 

All of this to say that sometimes they need us to step in and advocate.  If you think that more should be done- testing, referrals, different therapy- ask the person if it's okay if you ask questions.  

[Lecka]

Thank you, this is helpful.

I definitely can talk more to people about what they want!  Especially my parents and my husband.  
 

I think it’s just chance I have felt like I should bite my tongue, in other situations I would not.  
 

I have had…

 

A parent who had an accident requiring surgery and a long recovery time, and who needed to take things “one day at a time” at the beginning, the full weight hit her when she got home from the hospital and skilled nursing, and she was sad then.  It would not have been kind to grill people about her recovery and how long until she can do such-and-such.  We did need to make realistic plans for her to have round-the-clock care and some changes to their house, but it would not have been kind to force all that on her immediately.  
 

A friend who was very intimidated by talking to a doctor, and also very intimidated about “navigating healthcare,” and she has honestly gotten a lot more confident!  I do ask questions, but I do feel like I can worry her about things she wouldn’t worry about.  I also feel like it’s better for me to be like “you handled that great.”

 

A young adult child, who has been passive, and kind-of “I’ll sit back and not say anything, and then not feel invested.”  I am involved, but it’s been good for him to go to appointments by himself, have his own relationship, make his own choices, etc, just so he is invested and he should be taking on this responsibility.  I am totally unimpressed by their office system, they do not reliably make follow-up appointments as people leave, and then they don’t always call, either.  It’s one of those things where there’s one front desk person for 10 other people.  I think it’s better for him to go in by himself, but if there was some big problem I do think they could say “do you want your mom to come back.”  But the scheduling issue is a lot for an 18yo.  It’s the kind of thing where you could call and be on hold, too, it’s just one of the more difficult offices I have ever dealt with.  But he likes the provider, they take our insurance, and it’s honestly cheaper than it would be if they had a better office.  

[fairfarmhand]

15 minutes ago, Lecka said:

Thank you, this is helpful.

I definitely can talk more to people about what they want!  Especially my parents and my husband.  
 

I think it’s just chance I have felt like I should bite my tongue, in other situations I would not.  
 

I have had…

 

A parent who had an accident requiring surgery and a long recovery time, and who needed to take things “one day at a time” at the beginning, the full weight hit her when she got home from the hospital and skilled nursing, and she was sad then.  It would not have been kind to grill people about her recovery and how long until she can do such-and-such.  We did need to make realistic plans for her to have round-the-clock care and some changes to their house, but it would not have been kind to force all that on her immediately.  
 

A friend who was very intimidated by talking to a doctor, and also very intimidated about “navigating healthcare,” and she has honestly gotten a lot more confident!  I do ask questions, but I do feel like I can worry her about things she wouldn’t worry about.  I also feel like it’s better for me to be like “you handled that great.”

 

A young adult child, who has been passive, and kind-of “I’ll sit back and not say anything, and then not feel invested.”  I am involved, but it’s been good for him to go to appointments by himself, have his own relationship, make his own choices, etc, just so he is invested and he should be taking on this responsibility.  I am totally unimpressed by their office system, they do not reliably make follow-up appointments as people leave, and then they don’t always call, either.  It’s one of those things where there’s one front desk person for 10 other people.  I think it’s better for him to go in by himself, but if there was some big problem I do think they could say “do you want your mom to come back.”  But the scheduling issue is a lot for an 18yo.  It’s the kind of thing where you could call and be on hold, too, it’s just one of the more difficult offices I have ever dealt with.  But he likes the provider, they take our insurance, and it’s honestly cheaper than it would be if they had a better office.  

For the parent...

I'd probably seek the doctor privately "I know there are limited things you can talk to be about mom's care, but since me and my family are her primary support, we need to plan for how long she'll be under the weather. Can you give me an estimate about the time frame before she can...." This is respectful of the parent's mental state as well as your need to be able to make plans to be a caregiver.

For the friend, I'd just ask. "Do you want me to ask questions or just cheer you on. " Id also say, " If at any point I'm getting to be 'too much' during this appointment, just lay your hand on my knee and I'll shut up."

For young adults, I've advised them on good doctor questions and have them written down. I'd say "People often write down questions before appointments so nobody's going to think you're weird. They see it all the time." My two standard doctor questions are "Do I need to make a follow up appointment before I leave?" and "If I'm not seeing improvement, how long do I wait before calling back?" Also with scheduling, I do ask my adult kids "Do you want me to make the appointment? If so, what times are good for you? And do you want/need me to come with you??" My adult daughters do not have time to wait on hold, nor are they always in a position to answer a call back.

Edited April 19 by fairfarmhand

[Arcadia]

1 hour ago, Lecka said:

A friend who was very intimidated by talking to a doctor, and also very intimidated about “navigating healthcare,” and she has honestly gotten a lot more confident!  I do ask questions, but I do feel like I can worry her about things she wouldn’t worry about.  I also feel like it’s better for me to be like “you handled that great.”

My brother is similar. He would sent me his medical stuff since we are in different countries. I’ll just point out the important stuff and leave out the not so critical ones so as not to overwhelm him.

My late mom was a nurse. However, she felt I have more experience being a patient because I was sickly all my life. When I went with her and I feel a lack of info, I would let my mom know and she would decide whether to ask or we would go home and dig out the info e.g. drug allergies and drug interactions. 

When my husband accompanies me to my appointments, he will advocate. Main reason being I am a night person and while my listening brain is still sharp enough in the day time, my asking brain is in passive mode. 

[KSera]

5 hours ago, Spryte said:

Talk to your people in advance, and find out what they want.

I personally would want you to ask questions and get all the info! I think of my support people as extra brains when I might not be on my toes — you are there to help me remember to ask the questions and help recall the info later. 

This is the approach I take. When I ask, almost always they say they really want me to ask questions because they don’t tend to think of them, and that’s why they want me there. If they said otherwise, then I would sit quietly and be support.

[Lecka]

Thank you, this is all good for me to think about!

 

[Bambam]

I struggle with this with my MIL. She basically cannot hear the doctor accurately, nor process what he says, and come up with any sort of reasonable response.  I am basically her advocate/questioner/almost decider of medical matters/etc. It is uncomfortable. 

It basically sorta scares me for when I get old. Hearing loss stinks. But the slow processing time was a big shock to me. 

If I take someone with me, I want them to ask questions and help me out. Sometimes I'm just in a froze mode when talking with the doctor depending upon the news, and thinking up questions/etc is not working real well right then. 

[-----]

nm

 

Edited August 30 by kathyl