Advocacy for yourself and your child in a medical setting can be very difficult.
Last week, I spent a chunk of time on the phone with a friend whose child, unbeknownst to me, has been experiencing serious medical problems for quite some time now. This friend is beyond frustrated, and listening to her tell me what has been happening, I was frustrated for her.
They are in a situation where the specialist they are seeing isn’t really doing anything for her child. The child is experiencing major medical issues resulting in a greatly diminished quality of life. It’s been going on for a long time, and the doctor is stuck in “wait and see,” “let’s keep an eye on it,” and “wait for another specialist who can’t see you for a year.” It’s honestly unacceptable at this point.
She asked how hard she can push with a doctor.
And I hope that my thoughts on this were helpful to her, and I hope they’ll be helpful to you.
Before I get into the details, the short answer is this: As hard as you need to. But they also can refuse to ever see you again. But that’s not necessarily a bad thing.
The truth of the matter is, it really comes down to how you want to handle this relationship going forward. Is this a relationship you NEED? (How easily replaceable is this doctor?) Is this a relationship you want to preserve? Is this a doctor who’s really gone to bat for your kid, and you’re dealing with an unusual bump in the road, or has this doctor not done anything for your kid and has resisted you at every turn?
How you want this relationship to go is really the determining factor in how hard you can push. If you’re not sure – ask yourself this: If this next appointment doesn’t yield (the specific thing you have been pushing for), do you care if you ever see this doctor again? (To give an example from my own life, we reached this point with a specialist in T’s life. This doctor was literally the only one of his specialty in town, and I’d already met the other doctors of this specialty in the state and they weren’t amazing, so this doctor was my only shot. But he had disappointed us in several areas, and then messed up in kind of a big way. And I had reached a point where he was either going to kick it into gear, or he wasn’t worth the effort.)
If this is a relationship you are strongly motivated to maintain, then you need a gentler approach – but you can still stand up for your child, you can still insist that your questions get answered, etc.
If you’ve reached the point where you’re ready to walk if the doctor doesn’t bring any value, then you can push as hard as you need to. Stay polite. Don’t raise your voice. Stay reasonable. Plan out in advance how you want the conversation to go (at least this helps me) so that you stay on topic. But go after you goal like dog after a bone. You don’t need to be meek. You don’t need to defer to the doctor just because they have a degree. You can stay polite but still be forthright and blunt.
Use declarative statements. Ask questions. Tell them you don’t understand. (By which I mean, for example, “We are not going to pursue x treatment, as I said during our last appointment. We need to discuss alternatives. Can you explain to me why you’re so reluctant to discuss x, y, or z alternatives? I don’t understand why this hospital is unwilling to consider a treatment that is used by (name drop a large hospital that utilizes this treatment). Can you explain to me why, in your opinion, this treatment is inappropriate? I would like a referral to x hospital to discuss this alternative option with their team – can you help us with that, or do we need to pursue it on our own?”) As with any good “debate,” don’t let yourself get sidetracked by other topics. “Can we discuss that after we finish talking about x?”
I’m reading over those questions, and realizing that this is how I talk to doctors all the time anyway, but the difference is phrasing and tone. In every day conversation, I’m casual. The questions are asked with a curious voice. “We’ve talked about switching to x drug a few times, but you don’t seem like that’s a route you really want to take. I know x hospital uses this drug as a standard therapy, can you help me understand why this isn’t something you want to do in this case?”
In THIS case, when you’re at the end of your rope, the questions are less curious and more insistent. Less asking and more insisting.
And at this point, your doctor can get on board, or they can stonewall (in which case, it’s well past time to move on), or they can be polite to your face and send you a letter firing you from their clinic.
But if they’re not offering you any value, you’re better off never seeing them again, anyway, so if you’re 100% comfortable with the possibility that this is the last time you’ll ever see this doctor… go for it.
Our Teddy Bear's Journey 