Patients who go to their doctors’ offices carrying lists of their symptoms and complaints aren’t crazy, after all.
At least that’s the thesis of an essay by an Alabama family practitioner in last week’s New England Journal of Medicine, which published the article even though it lacks formal scientific research of the type normally found in the journal’s pages.
The essay discussed the widely held assumption among physicians that they should beware of patients bearing lists because they might be mentally ill. In fact, the author contended, that stereotyped view could prompt doctors to overlook valid, accurate, painstakingly gathered information that can be of enormous assistance.
The conventional wisdom among physicians about list-writing patients got further confirmation in interviews with three Los Angeles family doctors, who said the belief survives with unfortunate tenacity in contemporary medicine. The local doctors included the chairman of the family practice department at the UCLA Medical Center, a past president of the Los Angeles County Medical Assn. and a Santa Monica family practitioner.
If this appears to laypersons to be a case of much ado about nothing, however, the publication of the essay by Dr. John F. Burnum marks what other physicians perceive as an important step in shaking an absurd bias that colors the way thousands of the nation’s doctors relate to an important subgroup of their patients. Burnum has been in private practice in Tuscaloosa, Ala., for 30 years and teaches part time at the University of Alabama Medical School.
A Basic Tenet
Where this impression got its roots is not known for certain, and the list-writers-are-crazy topic is not the subject of formal lectures in medical schools. But the belief has, over time, emerged as a basic tenet of doctors’ faith.
Dr. William Weil, a past president of the medical association, argued that the misperception of note-writers has potentially serious consequences because it destroys an often valuable means of communication between patient and doctor.
And if such communication is compromised, Weil argued, the successful treatment of the patient is placed seriously at risk.
Exploring the myth’s origins, Burnum said he found that even among the writings of Sir William Osler, the physician widely perceived as one of the fathers of modern 20th-Century medical care, it is contended that a patient who comes to his doctor with a written list of things wrong with him probably suffers from a type of depression called neurasthenia. In one of the standard texts of medical practice, Burnum said, he found the argument that such note-writing “is almost a sure sign of psychoneurosis.”
Burnum and other doctors noted that physicians are trained to believe that every patient should be able to describe what is wrong verbally without resorting to written materials. It has never been clear, according to this theory, why patients should be expected to have such complete, unprompted recall.
Among his colleagues, Burnum said in a telephone interview, he detected a pervasive, almost ridiculing, prejudice against note-writers. Burnum said he found nothing to corroborate the dictum and a great deal to contradict it.
“I don’t think that teachers (in medical schools) stand up and give a formal lecture and warn students that patients who write lists may be crazy, but that’s the general opinion that medicine has about this subject and it comes down from some of the saints of medicine,” Burnum said.
To test his hypothesis of skepticism, Burnum conducted an admittedly informal study among his own patients. He found that, of 900 patients who arrived at his office over a three-month period, 72 brought lists with them. None of the male patients and only a few of the female patients had anything that even approached psychiatric symptoms and almost all of the emotionally normal list-bearers actually had serious physical disorders.
Best of Reasons
“Patients with organic disease, therefore,” Burnum concluded, “do refer to notes to give the essence of their story--and not because they are peculiar or crazy.” Burnum found many of the list-writers had the best of reasons for arriving at the doctor’s office with a list.
“Businessmen, executives, teachers and professors make lists,” Burnum said. “These people want to get things straight. They don’t want to fool around with their time or their doctors’ time.”
Eight of the lists Burnum encountered had been drawn up by the patients’ relatives and seven of the list-writers--all of them older patients--calmly explained that they kept lists because they realized their memories were not as clear as they once were and they wanted to make sure they didn’t forget anything important. Most of the lists contained five or six items but one long one, with 20 entries, was prepared by a perfectly sane, emotionally stable business executive.
Burnum’s experience matched that of Weil, who practices in Marina del Rey. Weil said his current practice includes at least three or four patients who regularly appear bearing lists. He has developed the practice of asking each patient to hand him the list so he can read and discuss it.
Reasons for Writing
Weil said list-writers he has encountered generally prepare lists because of failing memory or because they have complicated cases involving malfunctions among a variety of different body organs. They recognize that the complexity of their problems makes it important to provide the physician with enough detail to determine how seemingly unrelated symptoms may be tied into the same overall diagnosis.
“I agree with him (Burnum) completely,” Weil said.
Weil, moreover, believes that it’s high time doctors learned to not just tolerate but value the vast majority of list-writers because, as the number of physicians continues to increase and cost-control pressures on doctors mount, there will be more competition for fewer patients. That, alone, he said, will require that doctors concentrate more on communication and discard ridiculous preconceptions about people who seek their care.
Weil said he was reminded of the nature of what is happening quite graphically two weekends ago when he was cleaning out a storage area at his home and discovered his appointment book for 1979. He noticed that on Sept. 9 of that year, 35 patients were scheduled to visit his office. On the same date this year, the number was only 20.
Time to Pay Attention
“If you want to keep the patients you have, we teach students now that you have to walk into the room, sit down and pay attention to them,” Weil said.
Dr. James C. Puffer, chairman of the UCLA family practice department, agreed, saying that in his experience many list-writing patients present--for a variety of reasons--unusually difficult and complex challenges to their doctors. “It takes a considerable amount of time to sort out these cases,” Puffer said.
“It also takes an extremely skillful physician who has considerable expertise in interviewing patients and is good at uncovering what may be going on. It is for this reason that most physicians find these people frustrating. You can’t arrive at a simple diagnosis in five or 10 minutes.”
Dr. Terry Merkin, a Santa Monica family physician, noted that he often finds that patients who do not bring a list with them forget to bring up the complaint that prompted them to see the doctor in the first place. These list-eschewers end up, Merkin said, calling him back to discuss their primary forgotten concern that was ignored after Merkin discovered some problem of which the patient was unaware.
“I think family practice is an appropriate place to bring your list,” Merkin said. “A cardiologist does not want to hear about your bunions.
“But a family doctor may want to, because if you have certain types of (cardiovascular) disease, foot pain may be an important tip-off to poor circulation.”