Communicating with doctors...

[Matthew74]

I have been dealing with a lot of "health professionals" lately, mostly doctors and doctor's assistants. I can see their visit notes online as part of my medical record. From their notes and actions, I can see that they're either not listening, or I am failing to communicate.

For example I'm in A LOT of pain. I tell them that I need something for the pain that won't lower my seizure threshold. When I get the stuff it has major warnings about seizures, and then I find out that it's not even one of the better options in its class. They don't discuss this with me. I think they imagine that since its safe for most people it's safe for me. I end up taking Tylenol.

Another example is that I will try to tell them one thing, which they then ignore. Sometimes they confuse my main point with a little side comment, or worse yet write in their notes exactly the opposite of what I said. I can actually see them "switching off" when I'm in the office.

I have tried telling them exactly what I want, or what is wrong with me, but they are guaranteed to ignore that.

 

[Nakamova]

Unfortunately, engaged compassionate listening can feel like a rare commodity in the healthcare business. (And it is definitely a business.) For whatever reason -- lack of time, lack of consideration, lack of education, lack of manners, lack of respect -- many of our doctors seem to have lost the ability to pay attention. So...

1. Don't hesitate to be a squeaky wheel when it comes to your healthcare. A polite squeaky wheel, but squeaky nonetheless. If you are given a medication that is contraindicated or suboptimal let the doctors know immediately with a phone call. Write a letter to the doctor's office and to the next administrative level up (and keep copies of your correspondence.) It's not just a health issue for you, it's a liability issue for the prescriber.

2. Write down your questions and concerns and bring them to your appointment. Then ask the doctor/assistant to go over them with you carefully, and don't leave until you're satisfied that you are both on the same page.

3. If the relationship becomes dysfunctional, move on. If you have the option, seek out another doctor who may be a better fit. As with meds, it can often be a matter of trial and error until you find the doc who causes you the least side effects.

I have tried telling them exactly what I want, or what is wrong with me, but they are guaranteed to ignore that.

4. Sometimes (not always) it helps to imagine the best of people rather than the worst. If you think they are "guaranteed to ignore you," they may do just that. Our expectations of others can often make a difference in how they treat us.

 

[marika853]

It is very difficult to effectively communicate with drs.
Just an example: years ago my husband was on workman's comp. and we were in the drs. office for a checkup. Since my husband was an auto tech the dr was talking to him about cars. When he sent in his report to workman's comp. he said, " I think the patient has gone back to work." WTF! I immediately called the office and told them that that statement needs to be stricken from the record because it was TOTALLY FALSE!
Never would have believed it unless I lived it!
You have to take care of yourself because no one else will!
M

 

[SlimBlue]

Another example is that I will try to tell them one thing, which they then ignore. Sometimes they confuse my main point with a little side comment, or worse yet write in their notes exactly the opposite of what I said.

This has happened to me loads, and is currently hampering my disability claim

 

[Matthew74]

I do have a hard time being a polite squeaky wheel. I can work on that.

It may be time to see another doctor, and I think my physical therapist was trying to tell me as much last thursday. Theoretically I have a back surgeon, but I have been seeingp a physician's assistant, who I like, but they and the office so far have not been very responsive. I think if the doctor were seeing me, I might not be overlooked so easily. I am in the odd position of looking like a healthy young man, and I know this gives them a wrong impression of my actual condition, even though they know the facts. I saw a similar thing happen to my Dad. Even when he was deathly ill (literally), he could maintain his composure and joke with the staff. Maybe next time I'll take the wheelchair when it's offered, instead of forcing myself to walk.

 

[Nakamova]

How frustrating not to have your pain taken seriously. It's no fun to have to switch physicians, but maybe you'll be pleasantly surprised if you do. I recently saw a new neurologist who has already exceeded expectations (and mine were pretty low). I was just looking for someone to write my rx after my former neuro left, but this new one seems to be the best one I've seen yet.

 

[Garbo]

I agree with what Nakamova said. One thing I would say is that each doctor is different and with that they tend to prefer a certain type of patient, which is not correct and can dampen the doctor/patient interpersonal relationship, which is sometimes not a relationship but rather a totalitarian regime. I had a neurologist who I had to be very business like with and it worked, although he still struggled with respecting with me (hence why I study what I study since I feel that powr should lie with the patient, not the doctor); my epileptologist now is fine with me being very honest or being very business-like, depending on how I feel that day, i.e. we have an excellent relationship, which is what I hope for all patients.

It sounds like you should move on though. Best of luck. Just because someone doesn't look disabled, doesn't mean they are not. That irks me.

 

[AlohaBird]

Nakamova said it. Go ahead and be as squeaky as you want. Politely at first and if that doesn't work, be the impolite squeaky wheel.

Never ever forget that your doctor works for you, not the other way around.
Vote with your feet if you are not getting the care you need. Walk out.

 

[Blonde Angel]

You have to understand that you need to be very mindful that Drs do not understand what its like to to cope day in and out with the bad/ugly side of epilepsy.

I am not afraid to ask questions and if they are not doing the best for my Daughter, I am not frightened to tell them. I have met some true Dr morons in the past ...In my situation I have to be my Daughter's voice.

But for you.. you need to not be afraid if you are not happy or agree with what the Dr proposes.

I always write a list of stuff in my notes, anything that you might think is dumb just may be a actually a big deal in problem solving.

 

[Belinda5000]

I will come straight out and ask my doc what I want.I'll pick up my chart and I'll read it also,it's about me I have that right I'm over 18 and my neuro has no problem with that he says there your records.

I will flat out tell a doc I wont take a drug. Most of my docs like the way I am they know I look everything up to find out about things and they like that and I question things. If I don understand something they say I ask them to put it in words I do understand.

 

[Matthew74]

I think part of the problem may be the secretary.

A larger issue seems to be that there is no one to see me. The local clinic is so busy that it's near impossible to get an appointment. And, there are absolutely no doctors in practice here. It's actually easier go me to get in at the Mayo. Unfortunately orthopedics at the Mayo is crazy busy too. I'm going to try to get an appointment with a different doctor today. I'll let you know what happens. In the mean time, I'm in agony and have missed almost two weeks of school. I'm just so frustrated because I'm always waiting, and it's not like I can do anything like go to school or even rest up in bed. It's been going on for a month. It's a miracle I haven't started having seizures on account of lack of sleep.

 

[Fedup]

Matthew74

It is not easy trying to engaged in conversation with your doctor or neurologist, even the epilepsy nurse, there is a lack of education towards epilepsy on there part, a definite lack of manners and a lack of respect towards their patients. I agree with what Nakamova said "Don't hesitate to be a squeaky wheel when it comes to yo" mind you that can be easier said than done. I know my neurologist got a shock and did not like it when I said I would not take one medication she prescribed or when I told her the vimpat was causing me pain. The thing that got her the most is when I asked about the side effects.

Yes it can be hard to get some (probably most) to listen you that is why you need to stand your ground and repeat yourself until they do listen, its more like a conveyer belt with most doctors I think.