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In an ideal world all doctors would take the path of mercy, but we know they don’t. This has been a hard thing to learn. I didn’t so much learn it because of my health but because of my daughter’s who stayed in pain for 18 months because doctor after doctor wrote her pain off. Finally, we got a diagnosis and she is just fine.
One thing I thought of while reading this — it isn’t our fault that doctors don’t choose the mercy path. When we come into contact with a dismissive one, it isn’t personal. It isn’t us even though we could easily take it as such. If the doctor is like that with us, he or she is probably like that with all his or her patients. If only we could help this doctors see the light! I don’t know if we can. They have to want to change. Until they see their wrong ways they will continue down a path of pride and cause negative junk in so many lives and their own too. I guess we just pray for them when we have to deal with them.
You are correct in so many ways. It was EYE-OPENING to have opportunities to observe drs with other patients – as we can in the infusion center. We observe whole “appointments” which are only 5-10 minutes but amazing to see them treat others the same way we feel we’ve been treated. Also, to have the unique opportunity to hear from thousands of patients who share similar experiences – showing the same kind of categories that are being revealed by the Care Coach project I linked to in the post (with recordings of conversations). It is clear what the problems are, but like you said, change is difficult. So, newer drs are also a hope for the future – if we can impact their training.
So true!! My first Rheum Doc was so condescending, it made it even worse that he wasn’t that knowledgeable about RA. If I asked questions, he would get a smirk on his face, even said once that I must be reading stuff online. My new dr seems to at least care, I’ll be going next week for my second appt. with him.
My NP that is my primary told me that I probably know more than the dr about my own RA. Keep reading, keep researching and asking questions. Because this disease affects everyone so differently, we need to know different things to try to help ourselves. And she said the fact that I ask before I change anything is good enough for her because of the many different drugs I am on.
Like now, I am back on MTX and yesterday I was miserable with nausea, couldn’t eat without battles to keep it down. Have to eat to take meds. Yuck! Since I didn’t have nausea at first, up to 20 mg, then he added plaquinel and sulfasalazine, the first Dr thought it was the sulfasalazine. I think it is the plaquinel as well, that I may be having a sensitivity to the sulfa in both. Or could be that it is the combo of either of those with MTX. Since I think MTX is more important than either of the other drugs, I am going to ask to only take MTX again after asking how long for my body to get rid of both. No more sitting passively and doing what I am told. It’s me that has to deal with all of the fallout from these meds.
I am getting good relief from the new meds on my light days and some on my bad days. She started me on Gabapentin and Tramadol(I read on here somewhere that Tramadol works better for RA). Many of you know the roller coaster RA that a lot of us have, a few good days, than the bad ones come back. Well on the good days, I feel close to normal. I could even fool myself that it was all a bad dream. My brother was amazed, saying that I was even smiling and laughing. I’ll take it! I know it may not last, so just going to enjoy it while it does.
Good to hear you are getting some relief Becky. It sounds like you have good ideas about your treatment to discuss w/ the dr!
I am a nurse and I see this so much. I suffer from UCTD and Fibromyalgia and I have experienced doctors who insisted it was depression. I finally found one that believed me but it took so long to get there. In nursing we are taught to treat the whole patient. A huge part of what we do as healthcare providers is listen. It is essential so that we may get the correct information and provide the right treatment. I have often gone in to patient’s rooms after the doctor was in and have found out new information on the patient because I took the time to listen. I had to leave my job as a floor nurse because I could not physically do it anymore. It was such a sad day in my life. Now I teach nurses and I hope that I can instill in them the importance to listen to patients and address their needs holistically and completely. It makes such a difference.
Thanks for your good input Heather. I usually leave a dr knowing that there is important information that has been mis-interpreted or ignored. Whenever I’ve read the notes, I find errors – some more agregious than others. We’ve had amazing comments and letters on this topic! http://www.rawarrior.com/medical-records-tip-for-your-rheumatoid-arthritis-history-read-the-doctors-notes/
Going over recent comments. Seeing several about dismissiveness. Here’s one.
http://www.rawarrior.com/nuclear-bone-scans-for-rheumatoid-arthritis-or-scintigraphy/?show=comments#comment-93762
By the way, you can go through recent comments too with the gadget in the sidebar. Click “older” under Join the Conversation.
omg!! That is it totally! My last rhuemie was dismissive. So moving on to find a good one. I had a primary care that was dismissive and you know what?? I have the proof that what I said didn’t matter. There are mistakes in my medical record. For instance I told her I had my adenoids out. She wrote down tonsils! I told her something over the counter helped me and she wrote down it didn’t. Who knows how many other things she didn’t take serious. I didn’t read my whole record. It seemed to me it was worthless since after 30 seconds of reading I found mistakes. I am sure there are more and who knows how different my care would have been if she actually listened to what I had to say. I don’t like being dismissed. It doesn’t go over well with my personality. I may not come across as it bothering me but I leave dismissive doctors. My health is too important.
Kelly, this is so very very true. How lucky I am that my GP is a friend [after 20 years!!]. But have just had a disagreement with my gynae, and hope I won’t need to see him ever again!
My husband was hospitalized in the early 90’s when a massive infection first hit his liver, then the pericardium surrounding his heart and then other organs. After he was released a week later, we were glad to know from his records that a pregnancy test was run before the drugs were given to treat him! If there had been a miraculous pregnancy, the first ever in a male, we wouldn’t have wanted that child harmed! Not so funny was a report that he had been resting and breathing easily on a night he actually spent sitting up, resting on his forearms laid across the tray table because that was the only way he could breath. The next day they discovered his lungs were partially collapsed, but those reports showed that he had been checked many times and was resting well.
Linda, that example about your husband is classic. Who wrote that? The stayed at their desk? Or was it added later for legal reasons? The post about reading the doctor’s notes has brought very intriguing – sometimes funny information – like the pregnancy test of your husband.
I’ve seen some of my charts and they are full of the same kind of errors, saying the exact opposite of what happened. The pediatrician chart of my baby son from years ago was “empty” when I asked for records after his surgery. It’s a broken system the way it its, unless the humans do a perfect job – which some don’t. Patients need to be able to “ammend” a chart the way we can a credit record.
I have had MANY dismissive doctors in my 15 yrs with RAD. Ones who treat you like it must all be in your head, won’t listen to your concerns about medications or side effects, etc. I am beyond thankful when I find someone who listens with care and compassion. I used to be an MA and I always tried to treat my patients how I wanted to be treated as a patient. Sadly I had to find other work because physically I wasn’t able to stay on my feet all day but I miss it EVERY DAY, being where I feel like I matter and make a difference. I wish more health care providers were sick themselves, maybe then they would care more.