When the Oncologist Talks. . .Not Everybody Listens

Posted on April 21, 2012 by

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Remember that old commercial? No, not the one where you should have had a V8. Or even the one where the voice croons to you, “And like a good neighbor. . .” and you can’t help but sing out, “Statefarm is there,” even though you’ve long ago switched to Progressive, since they really do have better TV ads.

No, it’s the one where the trendy professional at a dinner party announces E.F. Hutton is his broker, and all stop mid-conversation. For–you know what comes next–it’s engraved in that commercial database in your heads–“When E. F. Hutton talks, people listen.”

It came to my mind the other day, as I was thinking about the difficulties cancer patients demonstrate in hearing what their oncologists are trying to tell them.  Seems when the oncologist talks. . .well, NOT everybody listens.

Anyone who’s had a serious illness explained by a doctor (“Yes, your Q-T interval is. . . What? What’s a Q-T interval? Oh, oh. Well, we measure it from the beginning of the QRS complex to the end of the T wave, and it represents the duration of activation and recovery of the ventricular myocardium. Now, as I was saying. . .) can find themselves quite perplexed, so often misunderstanding of medical information is a dance shared by provider and patient together. That may certainly play a part in the profound misunderstandings between cancer patients and their doctors.

Having said that, though, I can clarify that in the following research, it may be more of a partnerless dance. Physicians believe they have been as clear as possible–and sometimes researchers have been able to analyze tapes to support their claims.

But study after study finds that cancer patients consistently mis-hear their prognosis, and over-estimate chances of survival and cure, despite what they’ve been plainly told.

Let’s start simple. A team led by RT Penson from the Division of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital, studied–well, here’s the paper title; see if you can figure it out: “Attitudes to chemotherapy in patients with ovarian cancer.”

Right. It’s pretty clear.

It’s an interesting paper overall, but the following fascinating statistic caught my eye:

Staff told the patients that, for standard chemo for a second recurrence, there was a

  • 20% chance of remission, and a 0% chance of cure.

So far so good. Only that message got lost in transmission. For patients heard that there was a

  • 50% chance of remission, and a 15% chance of cure.

The patients simply didn’t–couldn’t?–hear the harsh realities of their chances–and inflated them until the numbers were more acceptable.

Common as such occurrences are in cancer prognosis, the misunderstandings don’t occur there alone. Dr. Dean Schillinger, associate professor of clinical medicine at the University of California–San Francisco has looked into healthcare communication in general and found that, on a good day, patients only remember and understand about half of the information provided by their doctors. “It’s a flip of a coin that what you say has sunk in,” he says. Inspiring, I know.

But when the conversation surrounds the deadly serious and dreaded topic of cancer, misunderstandings get even worse–and, it turns out, patients tend to mis-hear in specific patterns, as they inflate their chances for survival and cure, despite doctors’ best efforts to to be as honest as possible.

In a study published as “Doctor-patient communication about breast cancer adjuvant therapy,” researchers assessed doctor-patient communication particularly surrounding the issue of adjuvant therapy. [Adjuvant treatment is the treatment given over and above the 'main' treatment. For breast cancer, surgery is usually the main approach, while radiation might be an adjuvant therapy.]

They analyzed 100 consecutive patient-physician interactions in which the doctors addressed benefits and risks of–and made recommendations for–treatment.

There was a serious positive skewing of the facts on the parts of the patients.

After meeting with their oncologists and discussing risk-benefit analyses, a wolloping 60% of women overestimated their chances of cure by 20% or more compared with their oncologists.

Another study is even more alarming about patients’ capacity to hear and take in the realities of their situations. Researchers from Ontario Cancer Foundation Kingston Clinic Queen’s University at Kingston, Ontario, interviewed 100 hundred cancer patients undergoing treatment to see how they understood their illness and how their understanding compared with that of their doctors. The doctors in the study believed they had accurately and clearly described the disease and the goals of treatment to their patients.

But clearly treaters and treated were operating under different perceptions.

98 (of the 100) patients recognized that they had cancer (leaving me to wonder what went wrong with the remaining 2, as I didn’t see language barrier accounted for), and a mere 87 accurately identified their tumor type. I didn’t find these statistics particularly encouraging, but they were positively stellar compared to what researchers found next.

A surprising 11 of 33 patients with metastatic cancer thought their cancer was localized, and a shocking 16 of 48 patients receiving palliative treatment believed the doctor’s goal was to cure them. Of these 48, 40 overestimated the chances that the treatment would prolong their lives.

All 24 patients given less than a 50% chance of cure by doctors believed they had a 50% or greater chance of cure, and 8 were certain that they would be cured.

And the examples and upsetting statistics continue.

Australian researchers gave self-administered surveys to 240 cancer patients and their doctors (and got extra points for a little flair–if also a little bias–in their paper title, “Misunderstanding in cancer patients: Why shoot the messenger?”).

Again, misunderstanding abounded. Found the study,

Only a few patients concurred with their doctors’ estimates of the probability that treatment would cure disease, prolong life, or provide palliation. Forty-five percent had optimistic expectations of cure with most overestimating their chances by more than 25%. Forty-four percent also overestimated the likelihood of treatment prolonging life.

Patients simply aren’t hearing and internalizing the most painful facts of their situations.

I leave off by merely touching on the ‘why’ of the issue. And, of course, when there is no analysis of the doctor-patient interactions, it is always possible that doctors are less than forthcoming about the most painful facts of the patient’s illness.

But enough work has been done observing or listening to interactions to make it clear that the fault of the misunderstandings cannot fully lie with the physician. The authors of that “Why shoot the messenger?” checked up on the doctors.

They write, “audiotaped records of oncology consultations demonstrate that patient misunderstanding occurs even when doctors provide information.” So their next sentence may yield the best explanation for the disconnect between information received, and information processed. “These finding have lead researchers to speculate that the psychological mechanism of denial may act to selectively screen out news perceived as threatening.”

In “Information and participation preferences among cancer patients,” the researchers conclude that some patients who are gravely ill never fully acknowledge the seriousness of their situation, no matter how clearly it’s explained to them. The reality is simply too difficult to integrate. A piece of research (see Taylor) that I found somewhat self-evident established that such denial is actually a normal adaptive process which is required to allow the patient to cope with what would otherwise be an untenable situation.

The aim isn’t to find someone to blame, or to make excuses. It’s simply to raise awareness that many, many cancer patients are undergoing treatment without a good understanding of their illness, their prognosis, and the purpose of their treatment. That’s even when the doctors have done their best to be as clear and honest as possible.

Leaves the oncologists envying good old E.F. Hutton–for when they’re talking, there’s apparently a whole lot of folk NOT listening.

References

Cassileth BR. Information and participation preferences among cancer patients. Annals of Internal Medicine 1980; 92(6):832-6.

Gattellari M, et al. Misunderstanding in cancer patients: why shoot the messenger? Annals of Oncology 1999; 10(1):39-46.

In Other Words…Opening the Interactive Communication Loop.

Mackillop WJ, et al. Cancer patients’ perceptions of their disease and its treatment. British Journal of Cancer 1988; 58(3): 355–358.

Mirabeau-Beale KL. Comparison of the quality of life of early and advanced stage ovarian cancer survivors.Gynecologic Oncology 2009; 114(2):353-9.

Penson RT, et al. Attitudes to chemotherapy in patients with ovarian cancer. Gynecologic Oncology 2004; 94(2):427–435.

Siminoff LA, Fetting JH, Abeloff MD. Doctor-patient communication about breast cancer adjuvant therapy. Journal of Clinical Oncology 1989; 7(9):1192-200.

Talor SE. (1983). Adjustment to threatening events: A cognitive adaptation. American Psychologist 1983; 38(11):1161-1173.