Health and Medicine
PUBLISHED
Surveys have regularly found that the overwhelming majority of people want to be told that they have cancer if they have cancer.
These numbers go up in surveys of patients who actually have cancer. Frightening as that diagnosis may be, people generally want to be informed. But until surprisingly recently, it was not the common practice for doctors to disclose this to their patients. The general guidance to doctors was to keep this information from the patient.
The practice was embedded into the first Code of Ethics of the American Medical Association (AMA), with doctors advised against making "gloomy prognostications". Medical practitioners were recommended to share the diagnosis with friends or relatives of the patient, but only with the patient if absolutely necessary.
"The life of a sick person can be shortened not only by the acts, but also by the words or manner of a physician," it advised.
"It is, therefore, a sacred duty to avoid all things which have a tendency to discourage the patient and to depress his spirits."
This attitude of benevolent deception continued to be supported by doctors through the decades.
Better not to upset them
Whilst the idea was largely that it was an unnecessary burden to place on someone to inform them that they were dying, this wasn't the whole story. In 1966, one academic observing a veteran's hospital found several other factors influenced whether a diagnosis was disclosed to the patient.
"Few doctors get to know each terminal patient well enough to judge his desire for disclosure or his capacity to withstand the shock of disclosure," the paper explains. "Some doctors simply feel unable to handle themselves well enough during disclosure."
"Others do not tell because they did not want the patient to 'lean' on them for emotional support, or because they simply wish to preserve peace on the ward by preventing a scene," it adds.
A 1953 survey of 444 doctors found that only 3 percent of them would always tell the patient of a cancer diagnosis, 28 percent saying they usually told the patient, and 69 percent saying that they never or usually did not inform the patient of their condition. Of the reasons given, the most common was that it would cause an "unfavorable emotional reaction" in the patient.
"I feel strongly against letting the patient know he has cancer," one respondent said. "To all people, intelligent or not, the word cancer means a death sentence, and, even if you meet an occasional patient who insists on knowing the worst and says that it will not affect him one way or another, he will be mentally affected by knowing the worst."
In a study of 219 doctors in Chicago in 1961, 90 percent said that they usually would not inform the patient of such a diagnosis, sometimes changing the diagnosis to remove any mention of cancer, particularly when the cancer was thought to be terminal.
By then, there was already research indicating that the vast majority of patients would like to know this information. Over the next few decades, there was a large shift in how doctors treated a cancer diagnosis, with a number of contributing factors.
What changed?
One factor was medical scandals that took place, such as the infamous Tuskegee syphilis experiment, and another was a broader change in society leading to questioning authority figures.
"Long-held social norms were being turned upside down in all segments of society, including the physician-patient relationship," a paper on the topic argues. "Owing in part to several well-publicized controversies, there was a new call for protection from the medical establishment."
Of course, there were developments in treatments, meaning that doctors could disclose that a patient had cancer, without necessarily revealing the full gloomy prognosis. That aspect may not have changed too much.
"Although 98 percent said their usual practice is to tell terminally ill patients that they will die, 48 percent specifically described communicating terminal prognoses to patients only when specific preferences for prognosis information were expressed," a 2008 study of 729 doctors who had worked in cancer care explains.
"Forty-three percent said they always or usually communicate a medical estimate of time as to when death is likely to occur, and 57 percent reported sometimes, rarely, or never giving a time frame."
In terms of revealing a cancer diagnosis, however, there has been a marked improvements, with doctors adopting more of a partner relationship with patients than "doctor knows best" of the past. When the same Chicago survey was repeated in 1979, more than 90 percent of doctors reported that they preferred to disclose cancer diagnoses to their patients.
Nevertheless, there is still debate surrounding how much it is best to disclose to patients. Let alone the ethical minefield of whether it is ok to lie to your patients, if it might make them feel better.
