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.