- To be able to use arguments supporting truth telling
- To recognize exceptions to truth telling
Summary of Case
Gwen Jones does not want her husband Lloyd to know about his diagnosis of inoperable pancreatic cancer. Following a month long illness characterized by weight loss and nausea, Lloyd was operated on last night and the tumour could not be removed. He is not expected to live more than 4 months.
Mrs. Jones feels that her husband couldn't cope with the information that he is dying; he has always been afraid of death and disease and could not even attend the funeral of a friend who died of cancer a few years ago. At that time he became weepy, couldn't sleep, and became obsessed with remaining healthy. He has also been stressed and depressed lately at work. Mrs. Jones thinks that if her husband is told of his terminal illness, he will give up and his residual life will be destroyed by this news. She asks the resident not to tell her husband even if he asks.
This lesson plan guides a facilitated discussion of the issues to be covered when the physician is asked to withhold or distort the truth.
Is this a realistic situation or is it far fetched? Residents should be encouraged to briefly give examples of similar problems they have encountered.
Should we tell the truth? Take a vote. Be sure that those who say "yes," those who say "no" and those who "don't know" raise their hands to engage all participants.
Let us assume that the right Answer is "yes," (i.e. the rule should be to tell the truth and the exception, withholding of the truth, might be appropriate in exceptional circumstances. What are the reasons that we ought to tell the truth?
The patient has a right to know grounded in autonomy. The consequence of lying to the patient will be a loss of trust in the physician. Generalization of the practice of lying about serious problems to patients would result in a loss of trust in physicians in general. As a practical matter, it is highly likely that the patient will find out about his diagnosis. He/she may be deprived of the opportunity to be informed in a sensitive and supportive environment. For example, he/she may be told by an orderly or by accidental reading of a form.
The patient should be allowed to get his/her "affairs in order." This argument is grounded in considerations of the consequences, and particularly the potential harms of knowingly depriving the patient of the opportunity to organize his personal affairs before death. He/She may need to reorder interpersonal relationships with family, friends, business associates and others, in addition to financial affairs.
Finally, the patient requires a knowledge of his/her condition in order to give informed consent should additional treatments be required, such as palliative radiotherapy or hospice care to an uninformed patient.
Are there arguments for withholding the truth from the patient?
The cultural differences in the approach to truth are often brought out by the residents. If they are not, hints can be given about the Mediterranean, Aboriginal or Oriental cultures, in which information about cancer or impending death is felt to be harmful or inappropriate. When this issue is raised, it is useful to show the transparency of the illustration modified from the publication by Thomsen, Wulff, Martin and Singer, Lancet 1993. Violations of cultural norms offer the opportunity to emphasize that the "white coat, science oriented" culture dominating western medicine is in fact a culture within the multicultural spectrum. We believe in pursuing the truth through the scientific method and we believe in delivering or inflicting it. The residents' willingness to view themselves as different but not necessarily superior to those who disagree with this approach can be discussed. Violation of a family relationship which has been clearly defined and specified by the patient with his family is a variation on the cultural violation.
Finally, harm from disclosure, such as suicide or incurable depression, has to be weighed in the decision to disclose the truth. Withholding bad news to protect the patient under the so-called "therapeutic privilege" was a valued ideal in an earlier Hippocratic era in medicine. Its acceptability has attenuated though it is still preserved in law.
What is the best resolution to the conflict between the family member opposing truth telling and the physician's feeling that the truth should be told?
Presenting an opportunity to the patient to ask clears the relationship of possible misunderstanding. For example, patients may be asked prior to surgery if they would like to have all of the information and reports exclusively directed to them, shared with the family or discussed only with the family. If the problem arises after the surgery but prior to the establishment of any guidelines, it is reasonable to say to the patient "Your spouse has told me that she will handle all of the information regarding your management and that you would prefer not to be involved. I will certainly follow this recommendation if it your wish that I do so. However, my relationship and obligation is to you as your physician".
Bioethics Bottom Line
Family members sometimes ask the physician not to disclose an unfavourable diagnosis such as advanced cancer to a patient for whom no further diagnostic tests or treatment are proposed. The putative rationale is that such disclosure will harm the patient. The general rule is that the patient should be informed of his diagnosis. He should not be deceived and the physician should not comply with the request. The fiduciary relationship is with the patient, whose interests may not necessarily be best represented by the family. If the patient asks about his/her diagnosis, the physician should provide this information. If the patient does not ask, the physician should provide an opportunity for him/her to do so, by asking whether the patient wants to know the diagnosis. If the patient does not want to know the diagnosis, the physician is under no obligation to burden the patient with it. Of course, disclosing bad news should be done compassionately and sensitively.
Exceptions to the rule are based on consideration of cultural traditions, harm to the patient, and futility. In some cultures, there is a strong tradition of withholding bad news, particularly about cancer. This requires careful negotiation with the family and the patient, ideally prior to the time the diagnosis or prognosis becomes known. The patient's right to know an unfavourable diagnosis, even if no further tests or treatment are proposed, is grounded in the ethical principle of respect for autonomy and the trust inherent in the physician-patient relationship. When further tests or treatments are expected, the physician is obliged to tell the patient the diagnosis as a component of informed consent. This obligation has legal as well as ethical implications. In law, the prerogative of physicians to avoid disclosing information that they believe would be harmful to a patient is known as therapeutic privilege. In recent times, the scope of therapeutic privilege has become diminished virtually to the point of non-existence.
Beauchamp TL, Childress JF. Professional-Patient Relationships. Principles of biomedical ethics. 4th ed. New York: Oxford University Press; 1994. p. 395-406.
Fallowfield L. Giving bad and sad news. Lancet 1993; 341: 476-78.
Pellegrino ED. Is truth telling to the patient a cultural artifact? In: Baylis F et al., editors. Health care ethics in Canada. Toronto: Harcourt Brace Canada; 1995. p. 55-8.
Surbone A. Truth telling to the patient. In: Baylis F et al., editors. Health care ethics in Canada. Toronto: Harcourt Brace Canada; 1995. p. 50-4.
Thomsen OO, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? Lancet 1993; 341: 473-6.
Teaching Aid: Standardized Patient Case
About 20 minutes is devoted to the standardized patient case. This particular case lends itself well to the participation of several residents in the exchange with the standardized patient. "Time outs" can be called in which the doctor-patient scenario is briefly interrupted and the residents are asked if there are any other approaches that might be taken. It is important that those who have additional ideas replace the resident who has initiated the exchange but has "been called to the operating room." This intensifies the experience and prevents a superficial discussion. Three or 4 residents might discuss the problem with the simulated relative in this particular unit.
Instructions to resident
You are about to see Gwen Jones, the wife of a man who has been diagnosed as having pancreatic cancer. It is inoperable and he is terminally ill. The patient is still in hospital. Both the wife (who is currently completing her PhD) and the patient's father (who is a medical doctor) do not want you to tell the patient his diagnosis or the fact that he is dying. You are a doctor on the surgical team looking after Mr. Jones. Please talk to Mrs. Jones about her request.
Instructions to Standardized Patient
Your name is Gwen Jones. You are a young married woman with three young children. Your husband, Lloyd, is a business executive who has just been diagnosed as having pancreatic cancer. It is inoperable and he is terminally ill. He is not expected to live beyond 4 months. He became ill about a month ago. He has lost a lot of weight and often feels nauseous. An operation was scheduled. The operation took place last evening. The surgeons were not able to remove the tumour. You and your father-in-law, Rodney Jones, were at the hospital during the operation. After the operation, the surgeon informed you of the diagnosis and suggested you go home to rest. Your husband was in the recovery room and it was suggested you come back to see him the next day.
You and your father-in-law, who is a senior member of the Department of Medicine at University Hospital, had time to discuss how much you wanted your husband to know about his condition. Because of Lloyd's personality and the fact that he recently had a slight depression related to work stress, you decided that he should not be informed of his diagnosis.
Both of you want to spare him from hearing this "death sentence". Both of you feel he "couldn't cope"/"couldn't handle it". If he only has a short time to live, you want him to live it with hope for the future instead of living as though he's dying. He has always been afraid of death and disease. At the best of times he cannot discuss these topics without getting upset. A friend of his died of cancer a few years ago and your husband went into a "terrible state". He was not able to visit his friend in the hospital and going to the funeral home and funeral was out of the question for him. He was weepy, couldn't sleep, and became obsessed with trying to stay healthy. He has often said he wouldn't know how to handle getting seriously ill himself and that he'd rather be dead than have some lingering illness. You think he will give up fighting for life if he knows his diagnosis. You might use statements such as: "I know you mean well, but it's going to do more harm if he knows! He needs his strength now to recover from the operation. If you tell him, he's going to be so upset it will make him worse!"
"He's going to give up if he finds out! Isn't it your duty to prolong his life? I know that if you tell him about this illness he's going to die sooner because he'll give up!"
"It's easy for you to tell him. You'll see him for 15 minutes and probably won't see him again. I'm going to have to live with him and watch how destroyed he will be by the news. I'm going to have to pick up the pieces after you shatter all his hopes of feeling well again."
"I know him better than anyone else and I'm a better judge of what is going to benefit him than anyone else."
"Doesn't the family have any rights? As his wife, don't I have any rights?"
Prompts are used to standardize the scenario and give all residents an opportunity to address relevant issues.
PROMPT 1 (immediately)
"I know my husband's condition is serious. I don't want him to know he has cancer."
PROMPT 2 (optional)
"Are you going to tell him?"
PROMPT 3 (by 2-3 minutes)
"WHY do you have to tell him?" (You want to hear good reasons. Repeat the "why" if necessary.)
PROMPT 4 (by 4-5 minutes)
"I don't want him to know. Promise me you won't tell him."
PROMPT 5a (by 6-7 minutes)
"What if he doesn't ask?"
PROMPT 5b (by 7-8 minutes)
"What are you going to say or do if he asks?"
Be prepared to answer questions such as:
Why don't you want him to know?
"He couldn't handle it..."
He's going to have questions.
Statements like this near very beginning of interview should be deflected.
What do you want me to tell him?
Do you want me to lie to him?
"I'm not asking you to lie. I'm asking you not to tell."
What if he asks?
"Even if he asks, I don't want you to tell him."
Adapted from: "What do Gastroenterologists in Europe Tell Cancer Patients?" OØ Thomsen, HR Wulff, A Martin, PA Singer. Lancet 1993; 341: 473-476
"If he doesn't ask, would you tell him he has cancer?"