I was interviewed in the Chicago Tribune this past Sunday about when you know it is time to ditch your doctor. For me the answer hinges on what kind of doctor it is: primary care physicians (PCP) versus a specialist. I’m actually much more stringent about my PCP, and much more lenient on my specialists. Here is why:
My PCP is the gatekeeper of my health. If they don’t ask the right questions, don’t investigate a symptom, don’t remember who I am or if my body has changed over the years it’s a big problem. In the myriad interviews in my book Everything Changes, it was most often the PCP who neglected the signs and symptoms of young adult cancer. Dana’s PCP suggested her back pain was caused by the sexual positions she was using. Mary Ann’s PCP told her she was anorexic and a hypochondriac. Both of these women had blood cancers that were littering their bodies with tumors.
I also want my PCP to connect me to the best specialists. I don’t want them randomly cracking open a pocket-guide listing of docs in my hospital system. My PCP should know who a great is gynecologist is and tell me hands down Dr. X is the best otolaryngologist on staff. If my PCP isn’t hitting these marks it is time for me to move on. I have fired my PCP and my new one rocks.
So, am I conversely forgiving of a rude specialist, who doesn’t remember my name, my medical history, isn’t as communicative? Yes. I search damn hard for top notch specialists. Top docs have access to medical knowledge years before it trickles down to the likes of an average specialist. If my specialist has horrible bedside manner – and some of mine do – I dawn armor and enter my appointments ready to access their life saving knowledge. Can their lack of communication increase the risk of medical error? It might, so I am hyper vigilant. I check my records, repeat information, ask good questions, and develop good rapport with their assistants.
Mozart was an ass but people kept him around because he created some of the most beautiful music ever written. I don’t mind if the same comparison can be made to one of my specialists. As for a PCP…YOU’RE FIRED!
Have you ever ditched your doctor? What made you fire them? Did you tell them why you were firing them? Was your next doctor an improvement?
For tips on doctor-patient communication, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
September 3rd, 2009 at 3:02 PM
I would like to share my good experiences with a PCP.
My primary care doctor is the one who ordered my initial inflammation tests for my early-onset (but not juvenile) rheumatoid arthritis. In that very same appointment, she felt the tiniest of nodules in my neck, and ordered a biopsy to have it tested that very day. She found my cancer before I even knew I had it. She’s also a wonderful gynecologist! This is why I’m keeping her for my yearly ob/gyn-based checkup, despite my having moved half a country away from her. When I visit my family over the holidays, I will be visiting her, as well.
While it’s important to drop the bad ones, hold onto the good ones when you get em!
September 3rd, 2009 at 3:22 PM
Mandilyn - I really appreciate your positive comment. We are so quick to do much needed venting that it is rare to hear praise of our doctors. Yours sounds incredible and I am glad you continue to see her. All my best to you with your health and your care! Kairol
September 3rd, 2009 at 3:53 PM
I agree about the PCP - mine missed my cancerous lymph node for 6 months, even though I told her about it 3 times….
Many surgeons are great surgeons, but not good communicators - you are lucky if you can find one that is both (I have found a few, but not many). If your specialist is a great doctor according to other doctors, the info you have dug up yourself, reccomendations as well as your own experience, it is best to overlook their quirks and find a way to work with them. PCPs become PCPs because they have a good bedside manner. Surgeons, neurologists, oncologists… they become these specialists because they have a talent for something - cutting people open, seeing signs on an MRI, dealing with patients with cancer….
I definately forgive these doctors their quirks more than my PCP.
PS, I recently read that 30% of all tests that come back positive for cancer do not get reported to the patient the first time: the doctors move them to the side to call when they have more time to spend on them, then they get burried. NEVER assume any test is ok if you don’t hear back, always check back on it.
September 4th, 2009 at 9:57 AM
Being a typical Cancerian, I am very loyal and hate change. But, I did ditch my nephrologist, after it became clear that he missed diagnosing me in 2001 and the only explanation was sheer incompetence or forgetting to look at my lab results when they came back. Unlike ditching a boyfriend (which I am also very bad at), I did not even tell him I was “done” - simply started going to a new nephrologist recommended by my rheumatologist whom I trust completely. Later my new nephrologist told me that he ran into my old one at a Christmas party (!!) and they talked about me. Oops. I kind of felt like I was caught cheating (new one knew who my old one was but not the other way around), but the new one is really a world-class specialist on lupus nephrology, so I kind of felt justified - and hey, I am talking about my kidneys here. Then finally I requested all my old charts to be transferred, now that my dumping the old one was official - divorce complete. I’ve been quite lucky that this remains the only firing I’ve done so far. All my docs are fabulous, and I really hope they don’t fire me!
September 4th, 2009 at 4:05 PM
Anon Me brought up the really good point about the steps that need to be taken when you switch to a new doc after firing your old one. It seems really important to me to get your complete records transferred from one office to the other so the new doc can best understand your complete history. A big red HIPPA flag flew up in my mind when Anon me wrote about her docs discussing her case at a Christmas party. Is that not a huge HIPPA violation for them to be discussing you to each other without your consent? Also, Greyash, your statistic is jaw dropping. I knew it happened but 1/3 of the time… wow. Motivation to call the doc for test results!
September 5th, 2009 at 7:40 AM
I’m willing to put up with a lot from a specialist, but my insurance coverage lets me pick any doc I want to act as my ‘primary care.’ Women can choose an ob/gyn, men can choose a urologist, and cancer patients can choose an oncologist. When I’m on active treatment, my local oncologist functions as my PCP. In NYC, my medical oncologist definitely is captain/goddess of the ship at MSKCC. All of the surgeons yield to her. Period.
In my 30s I fired the PCP I was using after she insisted she could provide my gyn care — and then messed up badly on treatment for an HPV exposure. At that point, I switched to a specialist ob/gyn and to the PCP I’ve seen for the last 10 years — a smart guy with mad diagnostic skills who’s seen me through a thyroid nodule scare (benign), several sports injuries, an intracerebral hemorrhage at 44 (no one saw that one coming!), and finally this latest dance with rectal cancer. His staff is good, his nurses are excellent, he *thinks* before he acts, and he doesn’t hesitate to refer me to specialists and to coordinate my care with them.
After that first gyn specialist retired, I’ve had a tough time finding a replacement gyn. I was pretty happy with one (five years, semi-annual visits) until he made a diagnostic mistake. He missed my cancer, and we were both just uncomfortable with each other afterwards. The second gyn I fired had an excellent diagnostic reputation and a pretty good bedside manner, but his staff messed up one of my appointments (for which I’d had to take a half-day off work), lost my original surgical records and tried to give me unreadable scanned copies in return. Then he scheduled an anesthetized hysteroscopy (he couldn’t complete an in-office pelvic exam because of my cancer surgeries) and gave the post-op assessment to my 80 y.o. mom after I’d specifically asked him not to do that. So I’m back to gynecologist shopping…finding a gyn who’s also up on gyn cancers and the interactions possible for a rectal cancer patient is turning into a real project.
My oncologists and surgeons have to be reminded to work together, Dr. Personality in NYC has the beside manner of an alligator, and now and then we’ve had our fights, but after five years of this we’re a team and now we are all in this for the long haul.
September 6th, 2009 at 1:10 AM
Pat, you raise an excellent point about availability to choose a new doctor when you fire your old one. If you have good health insurance and live in a big city, your options are many, but that is not much of America. Many small town have a shortage of doctors and it can be hard attracting top-notch docs to out of the way locations. Regarding insurance barriers, it is a long and hard haul, but there is usually a protocol for petitioning an HMO to see a doctor who is out of network. I have done it once and was successful. I’m curious to know if others have tried this.
September 8th, 2009 at 12:06 PM
I recently changed PCPs. I had been going to her for 7 years. In 2003, she sent me to a specialist after I was having abdominal pains. I had a tumor growing on my right ovary. I had surgery and the tumor was benign. I was in excellent hands with the ob/gyn and surgeon she sent me to. But in the last three years, her “bedside manner” changed. I often left her office extremely frustrated and sometimes in tears. I decided to change doctors. My new doctor is wonderful and easy to talk to. He has reduced some of my medications. I have diabetes also. My A1C numbers have also dropped to the lowest they have every been.
September 9th, 2009 at 7:45 AM
I’ve gone through two PCP’s and am currently looking for my third in time for my next annual physical. First one treated me like a hypochondriac even though she missed my underactive thyroid for five years; second one “lost” my electronic medical record and couldn’t remember me.
Meanwhile, I have three specialists (endocrinologist, psychiatrist, ophthalmologist) that I trust and with whom I can have open, honest communication. I just wish I could find a PCP that fills those shoes, too.
September 11th, 2009 at 7:14 AM
I’ve fired specialists for simply not being intellectually curious enough or clinically interested enough to help me. Thankfully, on the cancer side of the ledger, I’ve been very fortunate and have had wonderful oncologists. But when it comes to other specialists, notably ear/nose/throat specialists, I’ve had to ditch quite a few. I have no patience with a doctor who has a reasonably narrow field of work yet who nevertheless is disinterested or, worse still, incompetent. I’ve actually gone through four or five (I’m fast losing count) ENTs and almost got into an argument with the last one who started disputing my cancer surveillance protocol. “Stick to throats, buddy, you don’t know anything about testicles” I felt like telling him. Thank goodness my life doesn’t depend on them the way it does on my oncologist.