My patient was angry, confused, and frustrated.
He had transferred his care to me because I take care of his kids and he badly needed help with a terrible pain in his leg that wasn\’t getting any better. He went to another doctor – an orthopedist – who predictably focused on the joint as being the cause. After x-rays and MRI scans of the joint, my patient was told that there was \”nothing wrong.\” The pain continued to get worse, and he had just now broken out in a rash. His calls to the specialist were met with suspicion, and flat out rejection. Now he didn\’t know where else to turn.
When he finally came to me his pain was excruciating. He sat across the room, writhing as he tried to find some position that would not be as painful.. His skin was now very sensitive to touch and the rash was very strange in appearance. His joint exam was entirely normal. This was clearly not a joint problem; it was a neurological problem. I knew him from visits with his kids, and never felt he was one to exaggerate or invent symptoms, so I trusted what he was telling me. Besides, there was that strange rash. Nothing was working for the pain, and he wasn\’t taking any narcotic pain medications \”because they didn\’t work.\” I asked my partner to come look at the rash, and he agreed with me that this was very likely to be reflex sympathetic dystrophy (RSD), a pain condition caused by trauma to a sympathetic nerve. It\’s weird, it doesn\’t respond to pain medications at all, and it hurts like hell.
He needed pain management to get a nerve block, as no drug I could prescribe would do more than blunt his terrible pain. But there was a catch: he was a Medicaid patient. Medicaid patients have two big disadvantages: first, they are very limited in the physicians they can see, as reimbursement is bad; and second, the reputation of Medicaid patients (partly deserved, partly not) is that they abuse the system and seek drugs. In our city, the only pain management doctors who treat Medicaid patients are at our local academic facility, Smarty Pants University of Health Science. This is not good news. Not only are they difficult to reach, but they tend to view all patients suspiciously. My experience was pretty bad with how my patients get treated there, but I had no choice.
I felt this patient needed to be seen very soon. To try to reduce the automatic suspicion, I called the pain clinic and spoke directly to the physician. I explained the history of symptoms, their severity, the ineffectiveness of narcotics, and about the appearance of the rash. I also reassured him that my patient seemed to have real pain, I don\’t think he\’s seeking drugs, and that I suspected RSD. I was met with an unenthusiastic response and a reluctant assurance that he would try to get my patient in \”as soon as possible.\” Clearly he didn\’t believe what I was saying.
A few days ago, my patient came back. \”They don\’t believe me,\” he told me, almost in tears. \”They suggested that maybe this was, you know, in my head,\” he added as he pointed to his head.
\”What about the rash?\” I asked, incredulous.
\”They didn\’t think much of it. They told me that they could treat me when you figure out what\’s going on,\” he said, getting angry. I had ordered an MRI scan to assess his lumbar nerve roots to see if maybe this was causing the pain and referred him to a dermatologist to get that angle on things. His pain was getting no better with the Neurontin I prescribed, and the rash had spread in a pattern that made me question the diagnosis (although not the reality of his pain).
We both sat quietly for a long time, unsure what to say at this. I sighed. \”I guess I\’m going to have to figure it out then,\” I said, shaking my head.
\”And I guess I have to hurt for a while longer,\” he said.
This story, in which I\’ve changed significant facts but kept the core, illustrates another broken part of our system: consults. Consulting physician, both academic and private, often result in anger and disappointment on the part of my patients, and very little help in addressing my questions and concerns.
From the patient\’s perspective, the passing of the medical baton carries the following assumptions:
- Care from the specialist will be based on what I\’ve already done
- I communicate with the specialist
- I trust the specialist to whom I am referring them.
- The specialist trusts and respects me.
- The specialist communicates with me.
Sadly, none of these assumptions are true in many cases, and all of the assumptions are rarely true. Why?
- Specialists rarely know and often don\’t care what I\’ve already done on the patient. Some of this is because they don\’t have access to the labs I\’ve ordered, the tests I\’ve run, or my thought process up to this time. We try to send information ahead of time, but somehow that rarely gets in the hands of the person actually seeing the patient, and so many of them don\’t bother looking. We\’ve tried to send information through secure messaging (email), but were met with almost universal refusal. Ironically, the one physician who does engage me electronically works at Smarty Pants U.
- Some of the problem is on my part as well. I don\’t send a note to the specialist saying why they are being sent. Yes, they do get an ICD-9 diagnosis, and usually some supporting documents, but they almost never know what specific question I want answered. Some of this is because I am busy and don\’t have the time to do extra, and some is because the specialists are busy and don\’t like to be bothered with extra. Regardless, the baton is nearly always poorly passed.
- I often can\’t send patients to the specialists I prefer. There are some specialists I know and respect, and I try to use them as often as possible. But often I am sending patients to someone I have never met and know only by the notes they (sometimes) send back. The story in this post underlines the fact that Medicaid patients are much more likely to get my \”less-preferred\” specialists.
- I am not always trusted. This is especially bad in the academic setting; they assume that a community doctor is too dull-witted to work at Smarty Pants U, so take everything I do and tell them with skepticism. But this is also true with some community specialists, who think a PCP is to dull-witted to be a specialist.
- Specialists are increasingly bad at communicating with me about the patient (and business, I might add) I sent to them. A significant proportion of my consultants don\’t send their notes in a timely manner, if at all. When I do get their note, they are usually filled with useless information, telling me the patient\’s entire history (which I, of course, already know), exam, habits, shoe size, and whether they have an inny or outy belly-button, all before they get to the part I want: the assessment and plan. I often have to go through 4-5 pages before I get to useful information. Additionally, I rarely have access to results from labs and tests done by that specialists.
The failure of the successful transfer often results in what my patient got: frustration and problems not addressed. This bad transfer happens for many reasons, including: the arrogance and/or laziness of doctors, the disorganization of medical offices, the inaccesability of tests and labs, the ridiculous documentation requirements which hide useful information, and the volume-driven foundation of the system, which discourages taking extra time to communicate or find the appropriate information.
So my patient has to live with his pain while I try to figure out how to treat a condition I am not supposed to be treating. In this case it is only pain; in some cases it is worse. I every case, it costs the system a lot of money and makes the likelihood of a good outcome much lower.
6 thoughts on “Our Broken System – #3: Dropping the Baton”
Dr. Rob, thank you so much for this post. I’m glad there is at least one physician who acknowledges just how broken the consulting process is, and the impact it has on patients.
It took nearly 3 years and (no exaggeration here): 4 PCPs, 4 gastroenterologists, 1 neurologist, 1 pulmonologist, 1 psychiatrist, 2 naturopaths, and 4 rheumatologists before I was finally diagnosed with RA by a 5th rheumatologist. And with the exception of perhaps 3 of these doctors, each of these folks were all consulting physicians that I was sent to by one or more of the other docs on this list. Most of the time, there was very little communication between the physicians. The rest of the time, there seemed to be zero communication.There is something very, very wrong with our system when a patient with no medical background, and further impaired by illness, is sent to countless appointments with specialists, and then burdened with the added responsibility of reporting back to the referring physician everything related to the consult. Am I really the referring doc’s best source for that information? How does the referring doc know that I remembered everything pertinent that the specialist said or did? Or that I am accurately conveying what the specialist said or did? Or that I even understood what the specialist said or did? And presumably, some doctors consciously decide to not tell a patient certain things, information which he or she would nevertheless openly discuss with the referring physician. Is the patient supposed to be a mind reader, too?By the way — the psychiatrist I saw? He was one of the few doctors I decided to see on my own, in large part because the lack of communication between the other doctors so frustrating, I was getting anxious and depressed and very nearly gave up on trying to get a diagnosis. Fortunately, the psychiatrist encouraged me to keep going.
As a consultant, I also struggle with the system. As a perinatologist, I really need records from other subspecialists, previous pregnancies, etc and these records (even reports of recent evaluations) can be nearly impossible to get. So much for the “team medicine” model.
Also, I am often disturbed at what poor/shoddy/non-evidence based/non-personalized care patients get at Universities (especially perinatology, but I’m probably just most familiar with that). I’m not sure what’s broken in academic medicine, but I go way out of my way to refer patients around the academic center… Call in favors I should save for other things, etc. just because I’m so frustrated, disgusted, and embarrassed. I have it a little easier though, because I am the subspecialist. If I’m sending up there, it’s a patient who is moving to that city, and the city in question also has a very good private perinatal practice, so a few personal phone calls, and a “remember when we took that patient who….” usually does the trick.
I was talking to a consultant friend today and he told me about the lousy the information he gets from PCP’s, so it does go both ways. I think most PCP’s don’t take the time (because they are overwhelmed, mostly) to make sure the consultant gets good information. Everyone’s standards are extremely low.
Wow, this is so incredibly accurate – as a patient who has a ultra rare orphan disease (mucopolysaccharidoses type I or ‘zebra disease’ (joking as I am the zebra to ones horse) diagnosis and who took 21 years to be diagnosed despite being in the intermediate range I totally appreciate this post. I thankfilly have private insurance through my parents right now and it is still hard to find drs in the academic community who are willing to take on a difficult case! I pray for changes in some aspect that help you and your patient.Erica http://www.rarelydefined.blogspot.cm
although i am interested in your larger point, i’d like to address a smaller one, around which your post is framed — that of crps, types 1 & 2 (formerly rsd/causalgia). so long as doctors, generalists as well as specialists, buy into the “trauma to a sympathetic nerve” explanation, even people correctly diagnosed– in a timely manner — are likely then provided inappropriate treatment. so much time is wasted because of the years spent promoting the SMP paradigm, performing sympathetic blocks, etc, that the window for a cure is too often missed. did you consider a neurologist? i don’t mean to sound… mean, but that’s what 10 years of crps has done to me, or to my voice, at least! i just spent 3 weeks in the hospital living the nightmare of specialists, whose decisions at cross purposes almost killed me several times. i’ve always enjoyed your blogging and am very glad you’re back.CRPS “looks” different on each patient. this was me a few months back: http://youtu.be/i2qrry7ltT0
One of the biggest benefits of blogging is continuing to sharpen my skills and knowledge through stuff like this. It’s not mean at all; it’s appropriately passionate about something that has taken a big, big toll. I won’t give details on this case (which was changed significantly anyhow), except to say that it seems to not be RDS/CRPS at this point. Until the patient is better, however, it’s a doc’s job to not be satisfied with doing or knowing enough. Brick walls eventually fall with enough pounding. Thanks for your comment.