Dealing with Uncertainty in a Time of Plenty
It's the newest trend in medicine: “patient-centered care.” Cynically, I think, “Isn't that what being a doctor has always been about?” But my curiosity brings me to a workshop, where two patients describe their experience of illness insightfully. One discusses her lymphoma diagnosis followed by breast cancer. She draws a picture in which she places herself at the center of a wheel with many spokes: internist, oncologist, hematologist, radiotherapist, psychologist, cardiologist, physiotherapist, social worker, nurse, pharmacist. “And the patient-centered bit?” she intones. “Well, I am in the center of the confusion. No one talks to each other; they all do their own thing and expect me to be the go-between.” She holds up her voluminous medical diary. We clinicians nod knowingly, wanting to believe that we'd never be one of those doctors.I read this and I have to ask, what is our job(s) as physicians? I know what we might think we are hired to do, or at least what we are paid to do. However, this patient perspective raises the issue of whether our perspective on this question is completely disconnected from what patients actually need from us or at least someone. I sit on various credentialing entities and look through various detailed credentialing documents. Nowhere do I see physicians who are credentialed to to be an integrator, a synthesizer of data, a translator, an interpreter. I have heard it explained that this function is simply implied as part of our job and that we should it naturally, understand it is our responsibility, and that it should be done whether we receive financial compensation for this or not. We are professionals and it is not about the money.
Let's get real. It is no accident that the very functions which patients so crave, which are not formally addressed in training, not compensated financially, and arguably not modeled consistently, are not consistently available. Declaring that it should be and trying to create an ethical mandate as a driver for consistent delivery will be an ineffective strategy. The deliverables won't be delivered.
Later in the essay, the author goes on to note (please not that I have removed parts for the sake of brevity):
An audience member springs up. An oncologist in his late 50s, he speaks with the kind of authority that can silence a room: “But your doctors don't agree because the data are not clear. It isn't their fault — do you understand that?”
The patient nods. “I do understand, actually, but there are ways of framing an answer so that the patient doesn't feel alone. I came out of many appointments feeling there was no one like me and that there wouldn't ever be an answer to suit me.”
“That's my point,” the oncologist presses. “When the data are poor, how can your oncologist truthfully tell what is best?”
“I understand that you can't make up an answer where there is none,” the patient responds, “but it's the way you say it that counts. I think you'd find that a lot of patients can deal with uncertainty, provided it's explained properly.”
”But I can't give you reassurance if I'm not reassured myself!” protests the oncologist. “If PubMed can't inform me, how can I educate you?........
So how can doctors deal with uncertainty in a time when knowledge is plentiful? How do we educate our patients well about what we know but avoid displaying hopelessness when we don't know?The authors goes on the outline how to begin to address this thorny problem. However, I believe it is important to note that while there may be a plenitude of knowledge, there is almost always a paucity of time to synthesize and explain it. One cannot examine these issues without recognizing that we are increasingly constrained by time. Some of the time constraints are self imposed, or at least imposed by an archaic encounter-based payment model. Whatever the cause, time constraints prompt physicians to employ various shortcuts which almost invariably abbreviate information exchange in an attempt to eliminate any form of nuance and frame questions in such a way of facilitate decision making with the goal that it happen quickly and predictably. We call it efficiency. It serves our needs as providers of care. .
All this may look good when viewed from our individual provider perspective. However, when arrayed around an individual patient, it looks chaotic and it is. Using our present model we simply are not capable of learning the preferences, fears, risk tolerances, individual goals and priorities, and decision making style of each individual patient. Our present encounter based model precludes this. Our present payment system does not financially value obtaining this information. It is not at all surprising it does not happen. We obtain the information we need in order to get paid to do stuff to people and we engineer our environment to optimize getting them to agree to us doing the stuff that financially rewards us most consistently.
The authors go on to write:
If we're uncertain about a complex diagnosis, decision, or therapy, we're probably not alone. But it's easier to disguise our realization that we don't have all the answers than to accept it and feel like fledgling physicians again. If you've been anointed an expert, how can you safely say you're not sure? ......... We shouldn't stop asking experts, but we must let patients know that many opinions do not erase uncertainty: they may attenuate it, even exacerbate it. “I don't know” is not a shameful admission; add “but I'll work on it,” and it can signal the beginning of a meaningful engagement. Our patients say this is what they hanker for.
......... we need to teach ourselves how to communicate with our patients about uncertainty. Contrary to doctors' common belief, we frequently fail to demystify diagnosis and management for patients. We lapse into jargon and sidestep detailed conversations, especially when the evidence is thin and there doesn't seem to be much to say. ..........Ultimately, managing uncertainty comes down to managing one's own angst..... Good communication is about giving patients the confidence that their doctor is an advocate who won't abandon them. That requires self-knowledge, perspective, and patience for ourselves. If patient-centered care is to fulfill its promise, we need to start redefining how doctors think.
We also need to rethink when this all happens and reward physicians who do this well. Otherwise good intentions alone will not make it happen.