"Should patients be told when the diagnosis is cancer?"
That question was asked 33 years ago by a small-town doctor in the Journal of the Indiana Medical Association. The doctor, a family practitioner named Otis R. Bowen, is now the nation's top health official, the president's appointee late last year as secretary of health and human services.
The question posed in 1953 by young Doc Bowen of Bremen, Ind., is still being asked.
It is being asked far less frequently, however. In the 1950s and '60s, doctors either didn't tell patients "it's cancer" or painted a deceptively rosy picture between 70 and 90 percent of the time, according to the Journal of Medical Ethics. In the '50s, a diagnosis of cancer was, rightly or wrongly, regarded by patients as a death sentence. The very word "cancer" aroused both fear and, strangely, shame.
Families supplying obituary notices to newspapers would commonly beg, "Don't say it was cancer," and friends, speaking of a person who was ill, would furtively whisper, "It's cancer."
Today cancer is greeted no more cheerfully than it was in the 1950s. But it is usually met openly, and it is met in the knowledge that there are aggressive treatments that often work, or at least provide some "good years."
By the late 1970s and since, according to surveys, more than 90 percent of physicians -- a 1979 survey indicated 98 percent -- "always" or "usually" make full disclosure, though many say they make it only to patients who want it.
Most patients today do. Not all. And families often intervene.
In the current edition of the journal Ca, an American Cancer Society publication ("Ca" is the medical abbreviation for cancer), Drs. Bettina Schoene-Seifert and James Childress tell of "Mr. X, 54."
Mr. X had a mass on his thyroid gland, and obvious hoarseness. Surgery revealed a cancer that could be only partly removed. The doctors also suspected that the cancer had spread to his lungs. Three weeks later, tests indeed showed spread to lungs and bones.
Told before surgery there was "a probability of malignant cell transformation," he was told afterward that "the tumor had been successfully removed. The possibility of spread was not mentioned."
His doctor did tell his wife, son and daughter-in-law the "extremely bleak diagnosis" and prospects. "The family decided to conceal the facts , and the treating physician accepted their decision. Mr. X was told only that he needed 'preventive' treatment. He consented to chemotherapy and radiation.
"When he later developed dyspnea difficult breathing , it was explained as 'post-operative swelling' . . . The true nature of his subsequent back pain caused by the cancer in his bones was never discussed with him, and he never expressed any concern . . ."
He complained that his recovery was too slow, however. During periodic discharges from the hospital, he kept working -- against medical advice -- "until he exhausted himself."
"In the hospital, his complaints and harsh criticism of the nurses generated hostility, causing them to avoid him whenever possible. Mr. X was never offered a chance to talk about his impending death, since, until the very end, everyone pretended that he would recover."
Perhaps Mr. X wanted it this way. We don't know. But he and his family -- and his care-givers, too -- were denied a chance to share his last days in some sort of open and perhaps emotionally more healing way.
Authors Schone-Seifert (until recently at Georgetown University's Center for Bioethics) and Childress (a PhD professor of religious studies and medical education at the University of Virginia) conclude that today:
"Respect for persons . . . means competent patients have the right to know and decide" what they should be told.
Mr. X's consent to chemotherapy and radiation was invalid "because he was misinformed about the diagnosis and prognosis and thus about the limited benefits he could actually expect."
"The family's consent was not sufficient; indeed, the family had no right to make the decision for Mr. X, since he was competent to exercise his own rights to know and had not delegated the rights to anyone else."
At the same time, the authors add, "we do not deny the patient's right to decline to know or to decide."
The situation is not always clear-cut. We may cut off a doctor by gesture or attitude rather than words. We may not be emotionally ready to hear all the facts in one swoop. Doctors still must use judgment.
Bowen's "personal opinion" back in 1953? "The patient should be told honestly but cautiously all that the physician has discovered." "Perhaps," he added, exceptions should be made for those either mentally unfit, too young to understand or on record as never wanting to be told they had cancer -- and some very old persons with slow-growing tumors that would not kill them before some other ailment.
The family, he decided after conducting his own survey, "should first be consulted about the patient and who should tell the patient," and "plenty of time should be taken to explain to the family why the patient should be informed."
"If the cancer is incurable but can be improved," he wrote, "then the patient should understand" the reason for treatment and why any relief may be temporary. "Then as the patient continues to get worse, he will understand why . . . and not bear hard feelings toward the doctor, the family or friends who would ordinarily keep telling him that he is doing fine . . .
"The patient will get less depressed, will not lose confidence in those whom he has always trusted, and will not flit from doctor to doctor and hospital to hospital and very often from 'quack to quack,' spending more and more money for less and less and gathering more ill will along the way."