Truth-telling and Withholding Information

NOTE: The UW Dept. of Bioethics & Humanities is in the process of updating all Ethics in Medicine articles for attentiveness to the issues of equity, diversity, and inclusion.  Please check back soon for updates!

Author:

Clarence H. Braddock III, MD, MPH
Assistant professor, Medicine
Adjunct professor, Medical History and Ethics

Core clerkship material for: Surgery

Topics addressed:

• Do patients want to know the truth about their condition?
• How much do patients need to be told?
• What if the truth could be harmful?
• What if the patient's family asks me to withhold the truth from the patient?
• When is it justified for me to withhold the truth from a patient?
• What about patients with different specific religious or cultural beliefs?
• Is it justifiable to deceive a patient with a placebo?

When physicians communicate with patients, being honest is an important way to foster trust and show respect for the patient. Patients place a great deal of trust in their physician, and may feel that trust is misplaced if they discover or perceive lack of honesty and candor by the physician. Yet there are situations in which the truth can be disclosed in too brutal a fashion, or may have a terrible impact on the occasional patient. The goal of this summary is to be able to discern the difference. (For related discussions, see Confidentiality, Cross-Cultural Issues, and Physician-Patient Relationships topics.)

Do patients want to know the truth about their condition?

Contrary to what many physicians have thought in the past, a number of studies have demonstrated that patients do want their physicians to tell them the truth about diagnosis, prognosis, and therapy. For instance, 90% of patients surveyed said they would want to be told of a diagnosis of cancer or Alzheimer's disease. Similarly, a number of studies of physician attitudes reveal support for truthful disclosure. For example, whereas in 1961 only 10% of physicians surveyed believed it was correct to tell a patient of a fatal cancer diagnosis, by 1979 97% felt that such disclosure was correct.

How much do patients need to be told?

In addition to fostering trust and demonstrating respect, giving patients truthful information helps them to become informed participants in important health care decision. Thus, patients should be told all relevant aspects of their illness, including the nature of the illness itself, expected outcomes with a reasonable range of treatment alternatives, risks and benefits of treatment, and other information deemed relevant to that patient's personal values and needs. Treatment alternatives that are not medically indicated or appropriate need not be revealed. Facts that are not important to the patients ability to be an informed participant in decision making, such as results of specific lab tests, need not be told to the patient. Also, complete and truthful disclosure need not be brutal; appropriate sensitivity to the patient's ability to digest complicated or bad news is important.

What if the truth could be harmful?

There are many physicians who worry about the harmful effects of disclosing too much information to patients. Assuming that such disclosure is done with appropriate sensitivity and tact, there is little empirical evidence to support such a fear. If the physician has some compelling reason to think that disclosure would create a real and predictable harmful effect on the patient, it may be justified to withhold truthful information.

What if the patient's family asks me to withhold the truth from the patient?

Often families will ask the physician to withhold a terminal or serious diagnosis or prognosis from the patient. Usually, the family's motive is laudable; they want to spare their loved one the potentially painful experience of hearing difficult or painful facts. These fears are usually unfounded, and a thoughtful discussion with family members, for instance reassuring them that disclosure will be done sensitively, will help allay these concerns. In unusual situations, family members may reveal something about the patient that causes the physician to worry that truthful disclosure may create real and predictable harm, in which case withholding may be appropriate. These occasions, however, are rare.

When is it justified for me to withhold the truth from a patient?

There are two main situations in which it is justified to withhold the truth from a patient. As noted above, if the physicians has compelling evidence that disclosure will cause real and predictable harm, truthful disclosure may be withheld. Examples might include disclosure that would make a depressed patient actively suicidal. This judgment, often referred to as the "therapeutic privilege," is important but also subject to abuse. Hence it is important to invoke this only in those instances when the harm seems very likely, not merely hypothetical.

The second circumstance is if the patient him- or herself states an informed preference not to be told the truth. Some patients might ask that the physician instead consult family members, for instance. In these cases, it is critical that the patient give thought to the implications of abdicating their role in decision making. If they chose to make an informed decision not to be informed, however, this preference should be respected.

What about patients with different specific religious or cultural beliefs??

Patient with certain religious beliefs or ethnic or cultural backgrounds may have different views on the appropriateness of truthful disclosure. For instance, Carrese and colleagues found that many people with traditional Navajo beliefs did not want to hear about potential risks of treatment, as their beliefs held that to hear such risks was to invite them to occur. Thus, dialogue must be sensitive to deeply held beliefs of the patient. One should not, however, assume that someone of a particular ethnic background holds different beliefs. Rather, a culturally sensitive dialogue about the patient's role in decision making should take place.

Is it justifiable to deceive a patient with a placebo?

A placebo is any substance given to a patient with the knowledge that it has no specific clinical effect, yet with the suggestion to the patient that it will provide some benefit. The placebo effect is powerful, in many cases providing measurable improvement in symptoms in 20-30% of patients. In general, the deceptive use of placebos is not ethically justifiable. Specific exceptions should be rare and only considered if the following conditions are present:

• the condition is known to have a high placebo response rate
• the alternatives are ineffective and/or risky
• the patient has a strong need for some prescription