The patients’ expectations and the doctors’ dilemmas


The following article was just published by Ranjana Srivastava, MD, in The New England Journal of Medicine under the title “Dealing with uncertainty in a time of plenty.”

The “New” Prostate Cancer InfoLink does not normally condone or practice the reproduction of copyrighted material. However, the following article has already been widely distributed on the Internet by others, and it is an insightful and illuminating commentary that includes specific reference to prostate cancer … so, just this once …

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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.

The second patient is older. In more measured tones, he delivers the same message regarding his 10-year history of prostate cancer, during which he’s seen 12 experts. “First it was whether to have surgery, then hormones or radiation, now it’s chemotherapy versus waiting.” He reflects, “If you had told me at the start of my illness that more experts led to more confusion, I would have laughed. But now I get it. How can anyone reassure me about my health when they can’t agree themselves?” As each appointment approaches, he’s filled with dread because even the doctor doesn’t know what to do about a supposedly common condition.

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?”

The oncologist is becoming irate at the patient’s inability to understand his simple logic. The patient shakes his head at the obtuse doctor. The convener intervenes, reminding us that the point is to keep the whole patient in mind and that patients seek reassurance that their doctors will work alongside them even in times of private doubt. It’s hardly a surprising conclusion, but the oncologist is unconvinced. “Is that patient for real?” he mutters.

Indeed, both patient and doctor are for real, and both are troubled by the increasingly visible uncertainty present in clinical practice. The more medicine advances, the greater the glimpses we’re allowed into the human body’s complexities, and the more intrigued we are. We realize that there are layers upon layers of explanations, and it’s sometimes exceedingly difficult to arrive at simple, understandable definitions of diseases and how they afflict us. Wasn’t breast cancer thought to be one uniform disease? Who would have thought that peptic ulcer disease was caused by bacteria and not spicy food? Witness what happened to the children of women who took thalidomide. The phrase “Trust me, I’m a doctor” has become a quaint anachronism — for good reason.

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?

First, we must acknowledge our own feelings. 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? The question “What would you do?” wouldn’t be so frustrating if experts always had the answer. 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.

Second, we must harness the available scientific evidence and avoid harping on the shortcomings of clinical trials. Carefully performed trials benefit us in many ways: they deliver information about patient characteristics, drugs, and what will or won’t work in the real world. They seldom crystallize what’s best for a particular patient but usually educate us about what will harm the patient. There is nothing constructive about dismissing the available evidence about a disease, paltry as it may be, without trying to build on it. The responsibility for enrolling patients in clinical trials belongs to us all. Sometimes the additional mandatory tests and biopsies, the delay in screenings when there’s clinical urgency, and the tricky logistics of traveling to a clinical trial center make it far simpler to avoid seriously considering a trial. Trials then attract only desperate patients, limiting doctors’ and patients’ enthusiasm. Yet the only way we’ll get answers to our increasingly sophisticated questions is by actively encouraging participation in trials.

Finally, 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. As a clinician, I find that often, just as I think I understand something well enough, I’m bombarded by data that make me feel doubtful again. I know it’s rare that a brand-new piece of data will upend a therapeutic decision that has taken into account not just history, examination, and labs, but the whole patient context. But when inadequacy gnaws at us, it’s hard to be thoughtful, communicative, and tolerant of questions that seem designed to exploit this weakness. Ultimately, managing uncertainty comes down to managing one’s own angst.

An exhausted late patient of mine compared his list of chemotherapy options to a series of parallel lanes on an unending highway, when he wouldn’t have minded a progressively narrowing road leading to a dead end. His observation highlighted modern medicine’s constant search for another drug, another test, another opinion that just might save the day. Myriad communication-skills courses aim to help us navigate uncertainty, but they generally focus on the patient’s experience: a good consult is distinguished from a bad one by how it made the patient feel. But we must also learn to feel compassion for ourselves, especially when the stakes are high and the answers not straightforward. Believing that it’s OK to feel lost in the murkiness of data or that we’re not alone in grappling with fundamental matters like the unfairness of suffering might allow us to appreciate that there are some aspects of our work over which we have less control than others. This appreciation, in turn, can help us communicate more effectively with our patients.

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.

4 Responses

  1. Just how I feel, I’m trying to understand both sides of the fence, but when it’s you that’s the patient, you really deserve to get some answers. I’ll use myself as an example:

    59 years old; March 2010, PSA 3.6; April 2011, PSA 6.1, but wasn’t told not to have prostate stimulation prior to a PSA test. Ejaculated three times on the day prior to the test. DRE shows BPH; told both primary care doctor and urologist about ejaculating prior to testing. Response: “It shouldn’t affect it.” Given Cipro 250 mg twice a day for 2 weeks. PSA retest down to 5.4, %Free PSA 15%. Underwent urine flow study, PVR 57 cc, capacity 313 cc, prostate volume 32 cc. In July 2011 had 16-core biopsy which was negative. Follow-up in October 2011 showed PSA 11.9, %Free 14%. Cipro again for 2 weeks at 250 mg twice a day. PSA fell to 5.6. Maybe prostatis, infection from biopsy? Urologist unsure what’s going on. Recommendation for another PSA and %Free PSA test in 6 months.

    I feel like I’m hung out to dry! Do I really need to do nothing and wait 6 months? Isn’t there any other test to see if I have a low-grade infection? What about white blood count? I’m on no medications other than 10 mg Zocor. So how about some answers guys? Perhaps if the urologist mentioned above was going through something like I am, he might have been more understanding.

  2. Glenn:

    The urologist doesn’t have any answers for you. You may have a mild infection, but what is sending your PSA up is more likely to be prostatic inflammation of some type associated with the BPH — a mild form of chronic prostatitis. If you have no clinical symptoms of anything, then there is nothing to “treat” except some laboratory results. Waiting 6 months and having another set of tests is therefore a perfectly reasonable thing to do.

    The problem, which is what the article above is all about, is that your doctor doesn’t know what your clinical problem is, and apparently he also isn’t good at being able to explain that in ways that are acceptable to you — or why waiting for 6 months to “do something” is a perfectly reasonable decision under the circumstances.

    You feel “hung out to dry” not because you are sick … or even necessarily at risk of any significant clinical condition … but because we have all been taught to expect that doctors can provide accurate clinical interpretations of the results of all the thousands of tests that are now available. Frankly, they can’t. We haven’t a clue what makes a specific individual’s PSA vary somewhat over the course of a day, let alone from week to week. However, your doctor is unable to make you feel comfortable with that uncertainty … and he probably feels uncomfortable about it himself!

  3. The oncologist in his 50s who spoke in the article above was just the person I hope to never meet. He was concerned about himself and not the patient. Even when the patient clearly addressed his confusion and desire to have a morsel of compassion provided with the medical opinions, the doctor still said, essentially, “What about me?”

    I doubt that oncologist ever actually touches a patient in caring.

  4. This reminds me of an appointment that I had this past week with a neurologist concerning my erectile dysfunction.

    What I took from that visit was that — due to pre-existing neuropathy — he did not see a return to function in less than 3 to 5 years. The discouraging part was that he felt that it would be a waste of both his (and my) time to do testing to confirm his suspicions. On the other hand, the fact that he was unwilling to take the time to do the nerve conduction testing to confirm his educated opinion tells me that I need to find another doctor. Like the patient in the article above, sometimes what we desire is to have the knowledge that we have eliminated all of the reasonable possibilities before we close a door.

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