I found a book in the Health Sciences Library at the University of Washington called Should the Patient Know the Truth?. This is a collection of essays written by healthcare professionals and published in 1955. This book is not on the topic of medical errors. Instead, it debates whether patients should be told serious and unpleasant news (for example, that they have a terminal disease). This book was written at a time when most types of cancer were fatal, and many essays use cancer to frame their argument of telling (or not telling) patients the truth.
This book is a little time capsule of the culture of medicine from sixty years ago. I decided to read this book to see what I could learn about perspectives on concealing knowledge from patients.
There are twenty-three essays in the book. Eleven are from physicians, six from nurses, three from clergy, and three from professionals in areas of law.
Most of the essays were rather wishy-washy on whether patients should know the truth. These essays generally took the perspective that the practice of medicine has a responsibility to help patients, and therefore it depends on whether knowing the truth would be a benefit to the patient. If the patient would benefit, then tell them. If they would not, then don’t.
But two essays took a strong stance that patients should be told the truth. One was from Owen H. Wangensteen, neurosurgeon and Professor of Surgery at the University of Minnesota, who argued that patients should be told about their cancer, because withholding information from them is a violation of their trust. Psychiatric nurse M. Olga Weiss states that patients should be told that they have been admitted to a psychiatric hospital (I guess this is in contrast to telling them they are in some other type of institution for some other type of reason).
The Catholic priest, John A. Goodwine, was very clear that physicians have an obligation to make sure that patients have the opportunity to receive the Last Sacraments so that he or she may prepare for death—but this obligation can be fulfilled by telling a member of the family who will take care of the arrangements. The Protestant minister was wishy-washy like most, but he did seem to like the stance of a Swiss physician, who said: “I always tell Catholics, but I never tell Protestants”.
Reading this book was a strange experience. And I will admit that a couple of the essays arguing for concealing information from patients were almost convincing—until I realized that I had just read pages of elegantly worded excuses (perhaps driven by the desire to avoid difficult conversations).
What does this have to do with the disclosure of medical errors? In the future people will read about the failure to tell patients about harmful medial errors and they will shake their heads at the excuses and the primitive healthcare system that allowed this practice to continue for so long. I certainly hope that it won’t take sixty years for this to happen.
Excerpts from the book
I have copied paragraphs of some of the essays below. I selected these paragraphs because they show the author’s viewpoint without requiring additional paragraphs for context.
Samuel Standard, MD
“The answer is yes, if the knowledge of the truth will improve the patient’s prospects of recovery. The answer must be no, if the knowledge of the truth will diminish his prospects of recovery.” (p. 16)
“The most difficult part revolves around the nurse who is chained to the patient’s bedside for a full day and must carry out what in the opinion of the doctor is the best way to handle the giving or withholding of information to the patient. She cannot turn away with a quip. She cannot leave the room to seek an answer. She must play it by ear. She must be intellectually dexterous and have the relaxed response of a trained athlete on a playing field in order to give the sound and spirit of authenticity. A delayed, contrived answer may bare the truth which she is trying to conceal.” (p. 22)
“Untruth requires preparation if it is to carry validity with the patient. A woman with a tumor of the breast should not be told, if one wants to withhold the truth about cancer from her, that the breast will be left on if the frozen section is benign; and that the breast will be removed if the section is malignant. When the patient awakes without a breast, she knows she has had a cancer. The better way to handle this is to avoid an either-or alternative and to tell the patient that there is a middle ground—tumors that are now benign but of a microscopic appearance which indicates that they will turn malignant in the vast majority of cases. These are the cases, we point out, in which surgery gets good results, the cases that are gotten early in which we take the breast off as a prophylactic measure so that the patient will not continue to live with the sword of Damocles over her head. When the patient awakes without a breast, she is told that hers was this third kind of lesion. Patients generally accept this with gratitude and feel they have escaped having bad cancer.” (p. 24-25)
Ilse S. Wolf, RN, MA
“It is generally agreed that the person to share diagnosis and prognosis with the patient is the doctor, and that it is within his discretion to decide how much the patient should be told. Yet nurses feel that this does not relieve them entirely of a responsibility.” (p. 29-30)
“A situation like this and similar ones present three problems. One is in the area of inter-disciplinary relationships and ethical precepts; the second has to do with the nurse’s own conflicting feelings about a hopeless disease, a bleak prognosis, and death itself; the third is how to tell the truth to the patient, if that is indicated, in a way that is comforting and helps him to acceptance.” (p. 30)
“Many patients have to get ready for their truth. To recognize that, to stay with the patient and to respond to his requests in a sensitive manner, is a far cry from a categorical conviction about what the patient ought or ought not to be told. Such an attitude stems from a respect for the individual who loses none of his prerogatives and his dignity by being a patient and having a possibly fatal disease. He remains ‘the captain of his soul’ and can choose what he wants to discuss and what not.” (p. 36)
M. Olga Weiss, RN (from viewpoint of psychiatric nursing)
“I believe every patient should know the truth, within reason. It may knock him out at first, but having received the worst news, which probably he has sensed for a long time, he can recoup his forces; and while he must fight for recovery, he has a good firm starting place.” (p. 68)
“It is not easy to tell the patient the truth. Indeed, not all of us can agree on what is the truth. But the nurse has an obligation to face facts honestly, and meet reality to the best of her ability. Certainly, she must use her judgment in many situations. The nurse who works in a mental hospital is called upon a little more frequently, I believe, than most nurses to look at a situation, weigh it, and reach a decision about her action.” (p. 71)
Owen H. Wangensteen, MD, PhD
“The most important person in an illness is the patient himself. Sometimes this is forgotten by the physician and well as relatives of the patient. Straightforward honesty and sincerity are traits which we appreciate in transactions with our fellow men and take for granted in our dealings with intimates. The physician-patient relationship is one which presumes trust, sincerity, faith, and confidence. And yet, how often we violate this trust when informing patients who have cancer concerning the nature of their illness. But why?” (p. 72)
“A critical examination of what we are accomplishing by such artifice is very much in order. I have employed the strategy in earlier years in an attempt to evade informing patients who have cancer concerning the true nature of their illness. Although the word cancer may never have been spoken within the patient’s hearing, I am convinced that the patient usually divines what we are striving to hide from him, particularly if the treatment carried our is only palliative. In fact, he too often becomes a party to the conspiracy, being careful not to let relatives or his physician learn that he (the patient) knows he has cancer.” (p. 73)
“What is the effect of such deception? In the first instance, it makes the patient mistrust his physician; moreover, it becomes difficult for him to understand the insincere behavior of his family. Many a patient, who has been caught up in this plot of deceit, and had become fully aware that his strength is failing and nothing can be or is being done to help him, probably says to himself: ‘Why do not my physician and my relatives tell me the truth? Why do they lie and attempt to deceive me? They know very well what is the matter with me; they are blind if they do not perceive that I know and that I appreciate that they know. Why this atmosphere of faithless fraud? By their attempts at deception, my friends have destroyed what might have been a beautiful relationship in my final illness.’ In his loneliness the unhappy patient finds his only relief in bitterness, resentment, and self-pity.” (p. 75)
Henry W. Cave, MD
“It has been my feeling that most cancer patients do not want to know the truth. Without question, many of these people whom you tell that they have not a cancer instinctively know that they have. This may be because of the lack of conviction with which the doctor handles the situation.” (p. 83)
“Most surgeons would much rather tell the truth to most of their patients but they cringe from telling the truth about cancer. They feel that informing a responsible member of the family about the exact nature and hopelessness of the case is all that needs to be done. When the patients are elderly, it seems to me that deception is in order, unless there is a definite reason for them to know the truth. Business and financial affairs play a part when the surgeon is told or knows that important decisions must be made by a hopelessly sick person.” (p. 83)
Isidore Snapper, MD
“There are many instances when the patient should not be told that he is suffering from a very serious, possibly incurable disease. In such cases, one of the family members should be informed. On the other hand, I remember the times when no physician ever told his patient that he had tuberculosis because it was thought that this information would undermine the patient’s confidence in recovery. I have an open mind whether in the field of cancer an evolution is taking place comparable to the one that happened in the field of tuberculosis. Maybe that the younger generation of patients has lost its fear of cancer and will in the future be able to bear the truth about this disease.” (p. 87)
Leo M. Davidoff, MD
“My experience has led me to the firm opinion that the patients who want to know will either ask the physician questions so directly that no evasive answer is possible, or make it their business to find out from some other source. The patients who should not be told that they are suffering from a malignant disease are, in effect, those who do not wish to be told. Perhaps the best rules to follow are: not to offer any voluntary opinions and to make the answers fit the patient’s questions. This, I am sure, can be done without lying, in the same way one answers a child when he becomes curious about sex.” (p. 89)
Alan F. Guttmacher, MD
“At the John Hopkins, when I was a student, we had a remarkably sensitive and excellent professor of medicine, Dr. William Sidney Thayer, who lectured our fourth-year class on what the doctor should tell the patient. I remember vividly his succinct remark: ‘The doctor is never privileged to lie to a patient, but he is privileged to tell the patient part of the truth.’” (p. 93-94)
“When clinical evidence bespeaks fetal death, it is my policy to tell the patient I fear there is bad news, that the absence of fetal movements and the findings make it almost certain that the baby has died in utero. However, under some circumstances and with some patients I may qualify my remarks by saying, it is perfectly possible there may be an error, and if so, in the next day or two there might be a change in the picture. With the intelligent and emotionally stable patient this kind of amelioration of the situation is not necessary.” (p. 95)