The patient is told, "You have cancer," and stops listening. The doctor goes on talking, unheard.
The patient's stunned reaction is called "shutdown" by one medical observer. Others call it "selective denial," "selective hearing" or, from a psychiatric view, "dissociation."
"It's a very common, normal mental mechanism" that is applied unconsciously, says Dr. Barrie Cassileth, a psychologist and director of psychosocial programs at the University of Pennsylvania Cancer Center. "We all do it all the time. We screen out information that is more than we need or want or can bear at the moment."
The term "shutdown" is used by Dr. Marie Cohen, a University of California at Los Angeles psychologist. "What it means in cancer," she says, "is that the patient cannot hear anything the doctor says after the diagnosis." It happens to one degree or another "to each and every one of us" in such a situation, "and it can happen with any serious medical problem."
Many physicians adjust for it. But most don't understand it and "continue talking," Cohen maintains. "They say, 'This is your diagnosis. These are your treatment options. This is what I advise you to do.'
"Meanwhile the patients haven't heard any of that because they're panicked about the diagnosis. Maybe they're thinking, 'Will I be alive for my son's graduation?' Then the physician asks, 'Do you have any questions?' "
The patient, if truthful, may say, "I didn't hear anything you said."
"That can really annoy a physician on a tight schedule," Cohen says. Or the stunned patient may ask almost no questions, "and the physician may conclude, 'This patient isn't very intelligent' or 'I shouldn't say so much because it's not appreciated.' "
So the phenomenon, Cohen concludes, "sets up a kind of mindset" where many physicians "feel it's not worth going into detail because people don't really hear you."
*Time. "Few doctors give patients time to adjust and ask questions," Cohen finds.
*Understanding. A doctor may ask: "Can you tell me anything of what you've heard?" Or: "The news I've given you is bound to be distressing, and I'd even venture to say you haven't heard much. I'm going to give you some printed information. Go home and talk about it, then come back with a list of questions."
*Asking for questions in a more fruitful way. Cassileth, who works with physicians and patients constantly, believes physicians who really want to hear questions "should never say, 'Do you have any questions?' but 'Now I'm ready for your questions.' "
*Repetition. Conveying distressing yet important information often needs to take place over several sessions and possibly involve both doctors and other care-givers.
*Simplicity, using words a patient can understand. "Doctors will say 'There are metastases spread of the cancer ,' " Cohen says. "If the patient understands that at all, he or she may incorrectly assume it's an automatic death sentence" and give up all hope and effort.
"Or -- these are all things I've heard -- a doctor will say, 'You have some positive node involvement' again, spread , and some patients will be overjoyed because they think 'positive' means 'good.' They're very distressed later when they learn it means more disease."
Or a doctor may say, "You have malignant melanoma," and the patient may go away saying, "Thank God I don't have cancer." Or, seeking to spare the patient, a doctor says, "You have a tumor." With, once again, possible misunderstanding and later shock.
*The patient about to hear an important diagnosis should never go to the doctor's alone, Cassileth suggests, but go with a close family member or friend. The companions may be just as disturbed, she says, but "chances are" they'll at least hear something the patient did not.
All these efforts are worth the time, Cohen maintains, since they "really shape whether the patient keeps appointments, takes medications, comes in for continued treatment and follow-ups" -- or abandons or delays the best treatment, or resorts to questionable or no treatment.
Most physicians don't mean to communicate poorly. But they have human biases, and whether they do well or poorly often depends on how they look on the patient. Cohen studied the way 39 surgeons at two hospitals related to their cancer patients.
Among her findings and other observations over her 15 years of work with many other patients and doctors:
*"If a patient is not particularly articulate or of a different ethnic background or not terribly verbal, a physician may conclude the patient is not very intelligent. I've had a Hispanic patient say, 'I'm a medical technician. I know the vocabulary, but the doctor treated me like I was in nursery school.'
*"Physicians tend to like people who are fairly cooperative, don't complain a great deal, have a sense of humor and don't make too many demands on them, particularly demands that take time," such as dealing with distress. They tend to take more time and go into more detail with patients who are of above-average or average intelligence, in the upper or middle socioeconomic range and emotionally composed, and who ask for specific information.
*They also communicate more "directly and easily" and give more information to patients with good prospects for recovery. Poor prospects can mean the patient is slighted and the doctor only talks about the patient's daily problems.
*Doctors are often guided by long-held prejudices, beliefs or experiences that don't generally hold. Some physicians said, "You don't harm old ladies," "You don't drop big bombs" or "You do the job, get out and leave the talking to someone else."
*Some physicians burn out. "A lot of older physicians told me, 'You just can't be as sensitive at my age -- the forties, fifties or sixties -- because then you burn out and just can't work with patients anymore.' " These doctors may be burned out already. Also, "The physician has seen cancer in all its guises and may be seeing his 1,000th breast cancer, and forget that it's that patient's first, the worst experience she's ever had, and she's scared to death."
These problems are not simple for doctors. Dealing with disease is not easy, and some deal with it badly. Cohen tells of cases where one says, "You have metastatic involvement," the patient "gets agitated," and "the physician responds by becoming abrupt rather than saying, 'I know this is upsetting. I'll sit down with you for a few minutes and tell you more.'
"I heard one attending physician say, 'Let's go get this patient some Vitamin V' -- code for the tranquilizer Valium -- rather than telling the resident, 'Go back in five or 10 minutes and sit with this person and see what we can do.' "
Doctors, she reports, will say they know how to communicate, they understand patients' emotional responses, they know patients can't always listen. In practice and under pressure, they may fail to show it.
Most of their teaching deals with medical problems, not emotions. The atmosphere of the training centers where much cancer treatment is given is especially hurried.
Residents, young doctors in training who give most of the care, are typically quizzed by superiors about a patient's treatment but not about communication, Cohen reports. "They are graded on doing a good writeup, on being medically responsible, on adequate communciation" with their superiors, "but nobody sits around grading how they relate to a patient."
"If physicians would remember these things, it might help them be a little less impatient, a little less hasty, a little more emphatic," she believes.
Because residents are our future family doctors and specialists, she says, "somebody needs to take them aside and explain, 'Dealing with these things will be as hard for you as for the patients. If you feel depressed sometimes, you're not alone.
"Let me tell you how to talk to someone for whom palliative care" -- just easing of pain and perhaps lengthening survival somewhat -- "are all we can offer. Palliative care is just as valuable as successful surgery.