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I agree that the relationship with my rheumatologist has been one of the most important aspects of my treatment. He and I have been partners in my healthcare for 23 years!
This is excellent!!! I am blessed to have a doctor much like David’s rheumatologist. Actually 2 doctors, although one I have not seen in a few yrs because of that pesky stint in the nursing home. Both my rheumy and my pain doc are professional, caring, concerned, treat me with respect, value that I am an informed patient, and in general are my partners in treating me. We work together to keep me as active and comfortable as is possible. They both listen to what is bothering me. They present the options and we decide TOGETHER the course we are taking. I love that they do not just shove a certain med at me. We discuss which options are best in their opinion. I never have to make an on the spot decision if I don’t want to. But, since I go in armed with the knowledge I have, I usually can immediately make a decision. And because my doctors know how I am, they don’t waste time giving me side effects, and info on what trials say about a medication or things like that. They don’t do so because they know I will look things up on my own and then if I have questions I will ask. They don’t have time to hold my hand and walk me through every bit of info about a treatment. I can research that on my own.
I think mutual respect is a major part of having a good relationship with a doctor. If I don’t respect a doctor, why do I trust him with my health? And if they don’t respect me as a patient, then we won’t have a good working relationship.
What a wonderful story. Thanks for sharing with us.
My Rheumatologist is good…but I have a much closer relationship with my GP. He’s an Intergrated MD (uses alternative methods as well as traditional). He too feels so ‘sorry’ that he’s not able to help me. Always gives me hug & kiss before I leave. So nice to know he cares.
I feel bad for those that struggle to find a doctor like mine or David Biundo’s. I’ve read some pretty horrible stories. I think it’s worth switching till you find one you feel good about
Kelly…..
Am I allowed to use this and other articles like this on MY blog as long as I give proper credit and don’t change anything? Or no?
I agree that a partnership with my rheumatolgist is key to effective treatment of RA. I have had RA for 32 years. My rheumatologist of 31 years retired last year. He and I had a great trusting relationship. When I began seeing one of his associates one of my chief concerns was my credibility with him. It has taken a year to get to know each other and at my appointment last week I realized we had finally established our partnership. He said to me, “I am so sorry this horrible disease struck you in the prime of your life and took so much from you. Treatment was very different back then. I have many patients who are less disabled than you are who aren’t trying and have given up. We are going to continue to work together to keep you going and allow you to have a full life.” I feel so fortunate to have found another caring rheumy.
when i saw the title of your post i didn’t even want to read it after the day i’ve had… i knew it was going to make me cry (which it did)
today i went to my PCP who (since i have had to leave my job because of medical conditions..thus losing my “good” health care…) is the latest in a round of residents at the local community clinic. i don’t mean to sound ungrateful but it is very difficult to try to deal with these clinics in my experience when you have complex issues like mine.
so since i have been in the GRIPS of trigiminal nerve attacks to my face the last two months …in addition to having RA, the infamous fibromyalgia, my eye sockets flared up from autoimmune something (strange and painful experience has led to three eye specialists and LOADS of steriods since last October), Dysphonia (which is my larynx flared up and has led to months of therapy hours away from my home), oh and i’ve developed some major vit.D deficiency so my teeth which i FINALLY had completely fixed and in good shape just two years ago are falling out of my head…. Oh yeah an I go the flu which is now an experience that sends me just this side of death… which sent me to the hospital for treatment and they happened to come across two hernias so now i need to go ahead and throw in a surgery for that next month..can i get a referral to my heart Dr..i don’t know some new law they need another referral..did you know i have a heart condition?? ..it’s just that i’m going to have to have all my teeth removed and get dentures somehow….. oh and is it possible to get a referral to a pain dr around here because i am severely under treated an am only human and could REALLY use some help people…..maybe someone around here could google some of my conditions and they would believe i’m in pain??
Are You guys sick of listening to this list yet?? because my Dr sure was.. can i just pick one thing and we’ll make other appointments to talk about the others
he added yet another pill from the trigiminal neuralgia pile ..(the one that made me hallucinate last time)….wouldn’t ..actually refused ..to give me any rescue pain medicine to cope with the attacks.. and sent me on my way… after i asked him to his face “are you REALLY leaving me on my own to deal with this?? no help?”
my next appt is in three weeks..the next one he had available….. sigh
I’m so sorry this has been so aggressive in so many ways at once. And that the dr is not even helping you to be comfortable – what is the reason he gives for no pain medication? What would he do in 3 weeks that he cannot do now?
Jen I am so sorry to hear about your struggles. It is stories like yours that make the RPF even more important. There are good docs out there and I write about my experience to give hope and encouragement. Keep fighting and communicating and know that Kelly has created a great place for support and encouragement.
Kelly – thank you for posting this, and David, thank you so much for writing and sharing this with us! I am so sorry that relief is so hard to come by for you, and am praying that it comes quickly and LASTS. What an excellent example of the doctor-patient relationship, though. With that kind of covenant, we can at least be confident that we are part of a team that is fighting this disease the best we can.
You poor thing! That is just plain wrong. I’ve had some interesting experiences myself with docs, and sometimes it feels like, to me, we have to depend on the medical community who sometimes fail us. Then you are mad at them but you have no choice but to continue seeking help. It’s infuriating! If only we had a magic wand and could go on our own. Where do some of these doctors learn such arrogance? They are patients too. They should have more sympathy. I am glad there are good doctors and hope you get blessed with one.
That was supposed to be a reply to Jen. Not thinking tonight.
you guys are so understanding
it really is appreciated:)
I don’t really know why, but around here at the community health clinics there are signs (even in the exam rooms) about how they will not dispense pain medications and honestly they make you feel like a drug addict before you’ve even asked for help with pain relief. I suppose it is apparently an issue for clinics but for me it has led to no help for my very real conditions. I am told to go to the ER if I want any help. ridiculous
obviously, health care is being dictated by some policy not by drs.
it is so true that you are left angry…frustrated…
idk what he can do in three wks …definitely nothing that he couldn’t have done for me the other day…
since I have to pick “one issue” I intend to have mine be “pain” and see if I can get a referral to a pain dr somewhere ..
I find these neuro meds to be hard to think/function on but at least the facial attacks have been at bay all night and I am happy to thank the Lord for that!
oh kelly to answer you directly..his reason was that we were going to try adding the other neuro med …he would literally not answer me about how to deal with the attacks. I don’t know if you know anything about trigeminal neuralgia but it is seriously painful. I compare it to child birth…like having contractions but in your face.. for me the attacks have been lasting a few minutes to ten minutes long and some nights coming at me relentlessly every ten minutes or so. It’s totally out of your control, the nerves just send searing pain down the nerve paths. my old dr would never leave me with no medicine to help me with the pain, but now I’m at the community clinic. he’s not the first dr I’ve had to get my courage up to try to approach and ask for pain meds ..basically if you try to ask for pain meds then they (the drs) act like you are pill seeking ?? I didn’t have the same problem at the “good” drs just at the community clinics where apparently humiliation is how they treat pain? just leaves patients on their own; heartbreaking and wrong in my opinion.
bad enough I have to take all this medication, then to be treated like you guys said, not believed ..ugh
Jen I am so sorry you are dealing with this on top of your RA and Fibro. My mother had trigeminal neuralgia years ago and had the nerve destroyed. Her face is numb on that side by her mouth. But she claimed it was worth it, no more pain. They may have better options now.
It’s a shame the clinics are like that. I am also unemployed and went to the clinic in our area. They were wonderful but this is a little town, could be the difference. They did not have a Rheumatologist so I did start going to the VA hospital for treatment since I am a veteran. Has been a lifesaver. However my first rheum dr sounds like he could have worked at your clinic. I had a really good primary care NP, unfortunately she has moved away. She caught my low VIT D and requested a bone scan resulting in higher doses of calcium and 50,000 units of Vit D weekly. So I was feeling like you do, doesn’t anyone care ?????
I am glad to say that I have a new Rheum Dr with the VA(the old one moved away Yea!!!) He called to check on me last evening( I know,unbelievable!) He wanted to know if I was getting any relief from the MTX(slight) so he added another pill. Then he said my inflammatory marker was lower this last lab, which was good but how did I feel. I said I was still having a lot of pain, swelling, etc. Then he said the most amazing thing… that he didn’t worry about numbers, he goes by what the patient tells him. Sometimes numbers are just not representative of what is really going on. I thanked him. Then he chuckled and said that what he was there for, to listen to the patient. Otherwise a computer could do his job.
So there is hope Jen. Can you get your old Dr to keep refilling your meds as long as you are continuing to see the clinic docs? The clinic I went to was going to refer me to a rheum doc that does that. I just had to pay the first visit. The clinic would handle the labs and send her a copy so she could monitor. If they put you on 50,000 units of Vit D, I wonder if your gums would tighten up to save your teeth?
Sorry to be so long winded!
The teeth removal is standard practice if you are at high risk for endocarditis, which frankly, would probably kill someone with RAD. It usually requires 6 weeks of IV antibiotics, at home mostly. It is not an easy infection, it makes patients very frail. What makes me so angry is watching TV news shows, where “pill pushing doctors”, are serving people with no pain at all, giving ridiculous doses of narcotics , not doing exams, not keeping records. Why are we made to feel like drug addicts? If I found the genie in the bottle my first wish would be to pain free, even if only for a little while, second would be for energy, not superhuman energy…just normal, enough to clean, cook, read, volunteer, food shop without help…third , if I couldn’t eradicate these chronic pain diseases, at least make our health care providers more aware…not just us, sickle cell patients, all the kids who never get narcotics, and manage RAD with tiny increases in Motrin doses and some steroids.
Jen, I’m sorry. What you are verbalizing is similar to how I have felt. I really feel there should be some advocacy in respect to pain and navigating the health care system. I feel almost bullied by my rheumatologist and I am a nurse. I am currently working on a letter to send to my doctor to be honest about the treatment or lack thereof. I think doctors feel uncomfortable talking about pain. Immediately, it seems they become defensive and turns it to make the patient look like a drug seeker. THAT is a bad position to be in. Instead of requesting pain meds, I intend to just request a referral to pain management. I’d rather my pain be dealt with by professionals trained to do that. The doctor will either give the referral or offer some method of pain control. I hope you find relief. Has anyone heard anything about hypothermia chambers? A colleague mentioned she saw it on TV show “the doctors”.