When Doctors Don't Listen

[lusciousleaves]

This is a good article in the Wall Street Journal that discusses where this problem comes from and what a patient can do to correct it. It's based on the book When Doctors Don't Listen.

**Moderator note: Link did not work, and is not directly about MS. Please correct link and post in your profile**

[Debby]

I'm really interested in this article, but when I went to your profile did not find the link. It would be great if you could add the link to your profile....this subject is the bane of my existence!!!

[maitrimama]

The authors of the book, When Doctors Don't Listen, are Dr Leana Wen and Dr Joshua Kosowsky. They are both emergency room doctors at Brigham and Womens (Harvard) in Boston. You can google the info and include WSJ. NPR has covered it quite a bit and I found a pretty good podcast that I listened to that way.

[MSer102]

The Wall Street Journal story talks a lot about how problems happen in the emergency room but I think the points are important for regular doctor visits too. The story says that a major problem is that patients don't speak up and tell doctors the important points about what's going on.

From what I've been reading on message boards over the years shows that that's probably true. I read so many posts where people are telling about some terrible problem they have but then say they haven't gone to the doctor or if they did they didn't say anything to doctor about it. (Then they ask "what do you think this is".) So I think some of what people say about their doctors not listening is that they think their doctors should be reading their minds and know what's going on without them having to say anything.

So it sounds like rule #! is to speak up about the problem.

The story talks more about how doctors make some of their diagnosing decisions. I don't know how we as patients can have any affect on how doctors are trained to think but I know we can't be afraid to tell our doctors what's going on with us and ask questions so we can figure out what to do.

But if a doctor just misses the point and won't answer questions and gives up on a problem I don't think we can retrain them. So maybe it doesn't matter why they dont' listen if they just don't. I think we can just go to a different doctor who does listen and will look deeper into the problem and keep looking for answers. I've had to change veterinarians and hair stylists too.

[Debby]

Just downloaded the book to my IPad! My husband Is going to be thrilled (Not!) but in this case, I decided it was easier to beg forgiveness than ask permission!!

I agree that patient's are not as forthcoming with their doctors as they should be. I think there is an intimidation factor, nervousness, panic under pressure of time, etc. We just have to go in prepared with notes so we're not thrown off - which "can" still happen depending on the Doc's personal agenda!

[lusciousleaves]

Thanks, Maitrimama, for passing along the details. Debby, I'm sorry the link wasn't in my profile, but glad you found it anyway.

Maybe I should have posted this in the Limboland forum? I also considered posting the link in the book reading forum, but felt it might be a more useful resource to anyone struggling with this in the main forum.

It seems to be a recurring topic for a lot of people going through the diagnostic and treatment processes, so I felt it could apply to MSrs and limbolanders alike. I'm sorry if I was off base posting this here.

[Debby]

No! I'm GLAD you posted it here...if you didn't I wouldn't have this new, cool book to read!!!

[lusciousleaves]

Well then, if it even helps one person resolve the medical run around dilemma, than it was definitely worth the effort. Best wishes, and if you think of it when you're finished, maybe check back and let me know if it's worth buying?

In the meantime, I'm going to see if I can hunt down those podcasts Maitrimama posted about. Were they NPR podcasts by chance? It's hard to tell by the wording of the post, but I'm assuming they are for now.

[maitrimama]

The interview with the doctors/authors was on NPR Boston, The Diane Rehm Show. I just googled it and they had an audio feed. Easy peasy!

[lusciousleaves]

Thank you. I found it. The comments section was a nice addition to the topic. Insight into how this system is structured and functions not only helps a patient participate more effectively, but also sheds a light on why these problems exist.

[MSer102]

The book was written by emergency room doctors and the Wall Street Journal article talks mostly about why doctors don't listen in the ER so I'm guessing the book is more abourt the ER too.

But there was just a study published about primary care doctors making diagnosis errors in office visits - the kind people with MS go to. The study wasn't about MS but it looked at conditions that people usually start by going to their primary card doctor for. In in about half the cases the researchers wrote about the doctors missed common things like pneumonia, heart failure, kidney problems, urinary tract infections and cancer.

And as for why the doctors made the errors the study showed that some of it was because the patients didn't give good information about themselves or why they were there. But MOST of the errors were caused by doctors just not knowing what they were doing. They didn't know what the symptoms meant, they didn't know what tests to order, they had problems ordering the tests, they didn't know how to interpret the results, they didn't know that the problem was serious and they didn't know what to do about it.

So maybe doctors do listen? Some of them just don't know what it means or what to do about it! In that case I still don't think there's very much we as patients can do about that besides to be sure we speak up and tell the doctor what our problems are. And I think its important to not waste time continuing to go to doctors who aren't really looking for problems or who hit the end of the line with what they do know. We can't be afraid to move on and find other doctors. I know a lot of us have had to change doctors - sometimes more than once.

[lusciousleaves]

MSer, that's how my mom's cancer got missed for five years. The first clue was blood tests that showed an increased blood calcium level. Her doc said no followup was needed and not to worry about it.

A few years later, she started having trouble breathing and said she felt something in her chest and pointed right to the spot. He treated her unsuccessfully for asthma for 2 years, changing from this medicine to that and poo pooed my dad's request for a chest x-ray.

They went to the desert for the winter thinking that might help her asthma. We did everything short of begging her to see a specialist before leaving. She left still walking 3 miles a day and came back unable to breathe well enough to walk a block.

The pulmonologist she scheduled with got her in right away for a CT scan, and after a few more tests she was diagnosed with stage 4 lung cancer.

The reason why her doctor missed it? She had none of the risk factors for lung cancer.

Sometimes, that information is right under their noses, and because they have a bias (this doc's bias was asthma because he has it, and he's misdiagnosed heart problems as asthma causing hospitalizations), they miss it.

[fishead]

Do any doctors truly listen? I am at the point where I do not feel doctors LISTEN to their patients. It is sad and frustrating!

[kebsa]

i do not know the book and will track it down but i know the issue well both as an rn and as a patient. There are many reasons why doctors don't sem to listen, they can be thinking of what they hope to be doing when they finish there shift, or trying to figure something out about another patient so they are not really paying attention to you- but the biggest issue is just simple communication breakdown. if they are from a different age group or different cultural background it can be like a different language but most of the time is\ts because they only spend a relatively small amount of time with the patient in a consult and as i said before they are almost certainly still thinking of another patient (or more than one) that they are concerned about so they may miss something you have said

now i am not saying nurses are perfect either, but a nurse spends much longer with the patient so picks up wether perhaps the patient is a bit embarressed about fully describing what the problem is. basically its like patients and doctors are speaking 2 seperate languages. i don't know if you remember a movie that is probably about 15 yrs or so- i think it was william Hurt and it ws called The Doctor- he is a successful surgeon who gets diagnosed with throat cancer and suddenly finds what life is like on the other side and realizes all the times he had not really listened to the patient or considered there fears and concerns.

in the end after he has had his treatement, when he has a new batch of students- instead of the usual teaching session where they all talk over the top of a patient as if he/she were not there- he makes them all change into backless hospital gowns and sends each of for some form of unpleasant invasive investigaton such as colonoscopies ba enemas etc in the hope they will learn to consider what there paient is feeling at the time they come to see a doctor or present to an ED. I could not help but think it was a bit unfair that he was assuming they were all as inconsiderate as he had been but it was a good point- there will be better communication between the parties if the medical officer just stops to consider how vulnerable and alone the patient may feel, start from there and they will instantly listen and communicate better