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Should patients always be told the truth?
AORN JOURNAL
MAY 1988, VOL. 47, NO 5
Ethics Should patients always be told the truth?
T
elling the truth to a dying patient and his or her family can be one of the most difficult, anxiety producing, and uncomfortable experiences a health professional faces. It may become even more difficult with additional pressures from the patient’s family, conflicts among the health care staff, or uncertainties in the practitioner’s mind. The ethical dilemma that surrounds truth telling is the conflict between the principles of autonomy (self-determination) and nonmaleficence (doing no harm). A second dilemma exists between the rule of telling the truth and the more paternalistic practice of “benevolent deception.” Health professionals use three basic arguments to sidestep truth telling and rationalize their nondisclosure or deception of the truth. The first is that the diagnosis and prognosis can never be absolutely certain.’ A deliberate intent to deceive or withhold truthful information, however, makes avoiding truth telling morally wrong. The second argument relies on the need to
protect patients from the pain and distress of bad news. Some people believe that deceiving a patient regarding distressing medical issues indicates a lack of respect for the patient’s autonomy and lack of respect for the patient as a person.* This benevolent deception denies a patient the opportunity to be the judge about what is good or harmful information. The third widely held argument against truth telling is that patients do not want to know the painful t r ~ t h A . ~ review of the literature reveals that this notion impels many well-meaning but paternalistic physicians to protect their patients from the truth rather than respect their autonomy! Often, patients want to know the truth, and it is extremely unsettling for them to be uninformed. The anxiety of not knowing may be more difficult to bear than coping with the truth and being given the chance to seek support and make plans, particularly with terminal illness. To make autonomous choices and decisions,
Jean M. Reeder, RN,MS, LTC, US Army Nurse Corps, is a full-time doctoral student at the
University of Maryland, Baltimore. She earned her bachelor of science degree in nursingfrom Arizona State University, Tempe, and her master of science degree in nursingfrom the Universityof Maryland The opinions and assertations contained in this article are the private views of the author and are not to be construed as oflicial or as reflecting the views of the US Army Medical Department or the Department of Defense. The author acknowledges Sara I:Fry. RN,PhD, associate professor of nursing, University of Maryland, for her assistance.
I306
MAY 1988. VOL. 47. NO 5
AORN JOURNAL
To be autonomous, people must have the facts to reach valid, appropriate decisions for themselves. the patient, particularly one who is dying, must know the truth about his or her diagnosis, treatment options, and prognosis. The patient also must be competent to make decisions, must not be controlled or coerced by anyone, and must have accurate information on which to base his or her decision.
Philosophical/Ethical Framework
T
he ethical theory of deontology provides a framework for truth telling. It maintains that some characteristics of acts, “other than, or in addition to, their consequences make them right or ~ r o n g . ”The ~ deontologist Immanuel Kant wrote that man has a duty to act in certain ways, and this moral duty transcends all other reasons for acting.6 Under this belief, the intent to deceive a person to protect him or her from the pain of truth, would be unacceptable, regardless of the end result. Deontologists view the center of moral thinking and behavior as universal rules that determine whether acts are right or wrong. There are no variations of the rule; one ethical principle never outweighs another. For example, the sanctity of life always overrules the expected confidentiality in revealing a plan to commit suicide when faced with cancer. The duty to tell the truth is grounded in Kant’s imperative-we must always tell the truth. This philosophy is the basis for the principle of autonomy, which is self-determination. Kant believed that people always should treat others as autonomous ends, never as a means to the ends of others.7This view implies unconditional worth of all people. To be autonomous, people must be able to make their own decisions and choices. They must have the facts to reach valid, appropriate decisions for themselves. Truth telling involves giving people the facts as they are best known at the time. Not
telling the truth to someone precludes him or her from making an autonomous decision.
Research Related to Truth Telling
R
esearch reflects society’s shift in expectations of truth telling and medicine, and depicts the gradual change in physicians’ attitudes about truthtelling issues. In a 1953 study, researchers asked 444 physicians whether they would tell a patient if he or she had cancer.* Three percent said they always tell, 28% said they usually tell, 57% said they usually do nor tell, and 12%said they never tell patients about their cancer. A similar study in 1961 revealed that of 219 physicians surveyed, 90% usually did nor inform the patient. A replication of that study in 1979 showed that 98% of the physicians preferred to tell the patient about his or her c ~ n d i t i o n . ~ In 1983, a telephone survey of 800 physicians and 1,250 adults was undertaken to determine current attitudes and experiences about disclosure of information and health decision making.’0 Eighty-six percent of the physicians believed their patients wanted the truth about their diagnosis and prognosis. In the face of terminal illness, however, only 13% said they would give a “statistical prognosis.” As a result of this study, the President’s Commission for the Study of Ethical Problems recommended that health care providers should not withhold unpleasant information simply because it is unpleasant. Other researchers expressed similar views in stronger terms. Some said patients have a right to know the truth and physicians are obligated to tell them the truth.”
Implications for Perioperative Nurses
I
nformed consent for surgery is meant to encourage truth telling and discourage benevI307
MAY 1988. VOL. 47. NO 5
AORN JOURNAL
A truthful, yet painful answer causes less anguish than the anxious uncertainty of not knowing. olent deception. Nevertheless, a perioperative nurse, during the course of a preoperative assessment, might encounter a patient who does not understand a procedure. When the situation suggests a discrepancy or lack of understanding, the nurse should try to determine precisely what the patient knows. For example, if the intent of a surgical procedure is to debulk a tumor, the patient may believe he or she will be cured of a malignancy. The nurse should bring the matter to the attention of the surgeon. Often the surgeon will be able to shed light on the problem or clarify things with the patient. If it seems to be an instance of benevolent deception, the nurse becomes a risk taker if he or she questions the surgeon’s veracity. “Justified paternalism” might be most appropriate in this case.** The nurse could allow the surgery to proceed, document the discrepancy, and talk with the surgeon after the procedure to ensure that the patienk is truly informed about his or her condition. Justified paternalism is often acceptable when three conditions are met. First, the patient must have some defect, encumbrance, or limitation in deciding, willing, or acting.l3 In the previous example, emotional stress, misinformation, or the effect of premedication would limit decision making. Second, it must be likely that harm would result without intervention. Debulking an obstructive tumor is intended to minimize or relieve pain, suffering, and possibly death; to delay surgery would increase the likelihood of these occurrences. Third, the most likely benefit from the treatment should be greater than other treatments or no treatment. This is clearly the case with debulking an obstructive tumor-an accepted. palliative surgical intervention. There are no clear-cut solutions or guaranteed answers for individual cases. The nurse should attempt to get as much information as possible before acting. Department and institutional policy may provide guidance on steps to take if the
surgical consent form differs from the patient’s understanding. Common sense and ethical principles should be used to help identify the problem and possible solutions. The immediate supervisor, the nursing director, the chief of surgery, the patient advocate or ombudsman, risk management department, or ethics committee might be able to help if arbitration or action is needed. The period immediately before surgery can be emotionally laden for patients, their families, and the health care team. It is not the time for, or the responsibility of, the nurse to disclose the real truth to the patient. The nurse must balance sensitivity to the patient’s, surgeon’s, and his or her own perceptions of the truth and understanding of the situation with the urgency of the situation. Respect for the patient’s right to the truth, no matter how difficult it might be for all parties, can be demonstrated by the perioperative nurse who identifies a dilemma, attempts to gather the facts and perceptions of others, and talks with the physician if he or she has reason to believe a patient has been denied the truth.
Resolving the Dilemma
T
here are many benefits of telling the truth to dying patients. They may suspect, long before a diagnosis is made, that they face a serious, possibly even terminal, disease. Patients are relieved when they are given a truthful, yet painful answer that causes far less anguish than the anxious uncertainty of not knowing.14 Truth telling affords dying patients the opportunity to attend to unfinished business. They can mend and close relationships, get their affairs in order, reflect on life, and say goodbye to family and friends. Such honesty allows the patients and their families to draw on each other’s strength and courage to prepare for the death. Health care providers are morally and ethically
MAY 1988, VOL. 47, N O 5
AORN JOURNAL
obligated to tell the truth to their patients. They must do so with timing, sensitivity, and kindness. The only situation in which nondisclosure is justified is when a patient requests not to be told. The request is the patient’s decision and must be honored, even if it contradicts the principle of veracity. There are many times when the duty to tell the truth, especially with dying patients, is painful for physicians and other health care professionals. Reasons for not telling the truth should be examined individually and collectively in ethics rounds or continuing education sessions. If someone is truly unable to cope with this issue, he or she should seek assistance from someone more skilled and comfortable with the responsibility. Most patients desire the truth, expect to be informed about their diagnosis and prognosis, and wish to participate in decisions about their health care. The current trend is toward participatory health care. The obligation to tell the truth and not deceive patients is tantamount to affording the patient respect and autonomy. Without the truth, we deny a dying patient the opportunity to pull his or her life together and prepare for whatever lies ahead. The question is no longer “Should we tell?’ but rather, “How do we best tell?” JEANM. REEDER,RN Notes
I . S Bok, “Truth-telling: Ethical aspects,” in Encyclopedia of Bioethics, ed. W T Reich (New York: The Free Press, 1978); R Gillon, “Telling the truth and medical ethics;,” Britkh Medical Journal 291 (Nov 30, 1985) 1556-1557. 2. Gillon. “Telling the truth and medical ethics,” 1556-1557. 3. Bok, “Truth-telling: Ethical aspects.” 4. Ibid: D H Novak et al, “Changes in physicians’ attitudes toward telling the cancer patient,” The Journal of the American Medical Association 241 (March 2, 1979) 897-900; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Healrh Care Decisions (Washington. DC: US Government Printing Office, 1982) 5. T L Beauchamp, J F Childress, Principles of Biomedical Ethics. second ed (New York: Oxford University Press, 1978) 6. R T Francoeur. Biomedical Ethics: A Guide to 1310
Decision Making (New York: John Wiley & Sons, 1983). 7. Beauchamp, Childress, Principles of Biomedical Ethics. 8. W T Fitts, I S Ravdin, “What Philadelphia physicians tell patients with cancer,” The Journal of the American Medical Association 153 (Nov 7, 1953) 901-904. 9. D H Novak et al, “Changes in physicians’ attitudes toward telling the cancer patient,” 897-900. 10. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Summing Up: Final Report on Studies of the Ethical and Legal Problems in Medicine and Biomedical and Behavioral Research (Washington, D C US Government Printing Office, 1983). 11. J Fletcher, “Medical diagnosis:Our right to know the truth,” in Ethical Issues in Death and Dying (Englewood Cliffs, NJ: Prentice-Hall, Inc, 1978) 146156. 12. J F Childress, Who Should Decide? Paternalism in Health Care (New York: Oxford University Press, 1982). 13. Ibid, 104. 14. S H Wanzer et al, “The physician’s responsibility toward hopelessly ill patients,” The New England Journal of Medicine 3 10 (April 12, 1984) 955-959. Suggested reading
Abrams, N; Buckner, M D; eds. Medical Ethics: A Clinical Textbook and Referencefor the Health Care Professions.Cambridge, Mass: The MIT Press, 1983. Agich, G J. “When consent is unbearable: An alternate case analysis.” Journal of Medical Ethics 5 (March 1979) 26-28. Higgs, R. “Obstructed death revisited.” Journal of Medical Ethics 8 (September 1982) 154-156. Higgs R. “Truth at the last-A case ofobstructed death?” Journal of Medical Ethics 8 (March 1982) 48-50. Meyer, B C. “Truth and the physician,” in Ethical Issues in Dearh and Dying. Englewood Cliffs, NJ: Prentice Hall, Inc. 1978, 156-162. Radovsky, S S. “Bearing the news.” New England Journal of Medicine 313 (Aug 29, 1985) 586-588. Veatch, R M; Fry, S T. Case Studies in Nursing Ethics. Philadelphia: J B Lippincott, 1987.
MAY 1988, VOL. 47, NO 5
Ethics Should patients always be told the truth?
T
elling the truth to a dying patient and his or her family can be one of the most difficult, anxiety producing, and uncomfortable experiences a health professional faces. It may become even more difficult with additional pressures from the patient’s family, conflicts among the health care staff, or uncertainties in the practitioner’s mind. The ethical dilemma that surrounds truth telling is the conflict between the principles of autonomy (self-determination) and nonmaleficence (doing no harm). A second dilemma exists between the rule of telling the truth and the more paternalistic practice of “benevolent deception.” Health professionals use three basic arguments to sidestep truth telling and rationalize their nondisclosure or deception of the truth. The first is that the diagnosis and prognosis can never be absolutely certain.’ A deliberate intent to deceive or withhold truthful information, however, makes avoiding truth telling morally wrong. The second argument relies on the need to
protect patients from the pain and distress of bad news. Some people believe that deceiving a patient regarding distressing medical issues indicates a lack of respect for the patient’s autonomy and lack of respect for the patient as a person.* This benevolent deception denies a patient the opportunity to be the judge about what is good or harmful information. The third widely held argument against truth telling is that patients do not want to know the painful t r ~ t h A . ~ review of the literature reveals that this notion impels many well-meaning but paternalistic physicians to protect their patients from the truth rather than respect their autonomy! Often, patients want to know the truth, and it is extremely unsettling for them to be uninformed. The anxiety of not knowing may be more difficult to bear than coping with the truth and being given the chance to seek support and make plans, particularly with terminal illness. To make autonomous choices and decisions,
Jean M. Reeder, RN,MS, LTC, US Army Nurse Corps, is a full-time doctoral student at the
University of Maryland, Baltimore. She earned her bachelor of science degree in nursingfrom Arizona State University, Tempe, and her master of science degree in nursingfrom the Universityof Maryland The opinions and assertations contained in this article are the private views of the author and are not to be construed as oflicial or as reflecting the views of the US Army Medical Department or the Department of Defense. The author acknowledges Sara I:Fry. RN,PhD, associate professor of nursing, University of Maryland, for her assistance.
I306
MAY 1988. VOL. 47. NO 5
AORN JOURNAL
To be autonomous, people must have the facts to reach valid, appropriate decisions for themselves. the patient, particularly one who is dying, must know the truth about his or her diagnosis, treatment options, and prognosis. The patient also must be competent to make decisions, must not be controlled or coerced by anyone, and must have accurate information on which to base his or her decision.
Philosophical/Ethical Framework
T
he ethical theory of deontology provides a framework for truth telling. It maintains that some characteristics of acts, “other than, or in addition to, their consequences make them right or ~ r o n g . ”The ~ deontologist Immanuel Kant wrote that man has a duty to act in certain ways, and this moral duty transcends all other reasons for acting.6 Under this belief, the intent to deceive a person to protect him or her from the pain of truth, would be unacceptable, regardless of the end result. Deontologists view the center of moral thinking and behavior as universal rules that determine whether acts are right or wrong. There are no variations of the rule; one ethical principle never outweighs another. For example, the sanctity of life always overrules the expected confidentiality in revealing a plan to commit suicide when faced with cancer. The duty to tell the truth is grounded in Kant’s imperative-we must always tell the truth. This philosophy is the basis for the principle of autonomy, which is self-determination. Kant believed that people always should treat others as autonomous ends, never as a means to the ends of others.7This view implies unconditional worth of all people. To be autonomous, people must be able to make their own decisions and choices. They must have the facts to reach valid, appropriate decisions for themselves. Truth telling involves giving people the facts as they are best known at the time. Not
telling the truth to someone precludes him or her from making an autonomous decision.
Research Related to Truth Telling
R
esearch reflects society’s shift in expectations of truth telling and medicine, and depicts the gradual change in physicians’ attitudes about truthtelling issues. In a 1953 study, researchers asked 444 physicians whether they would tell a patient if he or she had cancer.* Three percent said they always tell, 28% said they usually tell, 57% said they usually do nor tell, and 12%said they never tell patients about their cancer. A similar study in 1961 revealed that of 219 physicians surveyed, 90% usually did nor inform the patient. A replication of that study in 1979 showed that 98% of the physicians preferred to tell the patient about his or her c ~ n d i t i o n . ~ In 1983, a telephone survey of 800 physicians and 1,250 adults was undertaken to determine current attitudes and experiences about disclosure of information and health decision making.’0 Eighty-six percent of the physicians believed their patients wanted the truth about their diagnosis and prognosis. In the face of terminal illness, however, only 13% said they would give a “statistical prognosis.” As a result of this study, the President’s Commission for the Study of Ethical Problems recommended that health care providers should not withhold unpleasant information simply because it is unpleasant. Other researchers expressed similar views in stronger terms. Some said patients have a right to know the truth and physicians are obligated to tell them the truth.”
Implications for Perioperative Nurses
I
nformed consent for surgery is meant to encourage truth telling and discourage benevI307
MAY 1988. VOL. 47. NO 5
AORN JOURNAL
A truthful, yet painful answer causes less anguish than the anxious uncertainty of not knowing. olent deception. Nevertheless, a perioperative nurse, during the course of a preoperative assessment, might encounter a patient who does not understand a procedure. When the situation suggests a discrepancy or lack of understanding, the nurse should try to determine precisely what the patient knows. For example, if the intent of a surgical procedure is to debulk a tumor, the patient may believe he or she will be cured of a malignancy. The nurse should bring the matter to the attention of the surgeon. Often the surgeon will be able to shed light on the problem or clarify things with the patient. If it seems to be an instance of benevolent deception, the nurse becomes a risk taker if he or she questions the surgeon’s veracity. “Justified paternalism” might be most appropriate in this case.** The nurse could allow the surgery to proceed, document the discrepancy, and talk with the surgeon after the procedure to ensure that the patienk is truly informed about his or her condition. Justified paternalism is often acceptable when three conditions are met. First, the patient must have some defect, encumbrance, or limitation in deciding, willing, or acting.l3 In the previous example, emotional stress, misinformation, or the effect of premedication would limit decision making. Second, it must be likely that harm would result without intervention. Debulking an obstructive tumor is intended to minimize or relieve pain, suffering, and possibly death; to delay surgery would increase the likelihood of these occurrences. Third, the most likely benefit from the treatment should be greater than other treatments or no treatment. This is clearly the case with debulking an obstructive tumor-an accepted. palliative surgical intervention. There are no clear-cut solutions or guaranteed answers for individual cases. The nurse should attempt to get as much information as possible before acting. Department and institutional policy may provide guidance on steps to take if the
surgical consent form differs from the patient’s understanding. Common sense and ethical principles should be used to help identify the problem and possible solutions. The immediate supervisor, the nursing director, the chief of surgery, the patient advocate or ombudsman, risk management department, or ethics committee might be able to help if arbitration or action is needed. The period immediately before surgery can be emotionally laden for patients, their families, and the health care team. It is not the time for, or the responsibility of, the nurse to disclose the real truth to the patient. The nurse must balance sensitivity to the patient’s, surgeon’s, and his or her own perceptions of the truth and understanding of the situation with the urgency of the situation. Respect for the patient’s right to the truth, no matter how difficult it might be for all parties, can be demonstrated by the perioperative nurse who identifies a dilemma, attempts to gather the facts and perceptions of others, and talks with the physician if he or she has reason to believe a patient has been denied the truth.
Resolving the Dilemma
T
here are many benefits of telling the truth to dying patients. They may suspect, long before a diagnosis is made, that they face a serious, possibly even terminal, disease. Patients are relieved when they are given a truthful, yet painful answer that causes far less anguish than the anxious uncertainty of not knowing.14 Truth telling affords dying patients the opportunity to attend to unfinished business. They can mend and close relationships, get their affairs in order, reflect on life, and say goodbye to family and friends. Such honesty allows the patients and their families to draw on each other’s strength and courage to prepare for the death. Health care providers are morally and ethically
MAY 1988, VOL. 47, N O 5
AORN JOURNAL
obligated to tell the truth to their patients. They must do so with timing, sensitivity, and kindness. The only situation in which nondisclosure is justified is when a patient requests not to be told. The request is the patient’s decision and must be honored, even if it contradicts the principle of veracity. There are many times when the duty to tell the truth, especially with dying patients, is painful for physicians and other health care professionals. Reasons for not telling the truth should be examined individually and collectively in ethics rounds or continuing education sessions. If someone is truly unable to cope with this issue, he or she should seek assistance from someone more skilled and comfortable with the responsibility. Most patients desire the truth, expect to be informed about their diagnosis and prognosis, and wish to participate in decisions about their health care. The current trend is toward participatory health care. The obligation to tell the truth and not deceive patients is tantamount to affording the patient respect and autonomy. Without the truth, we deny a dying patient the opportunity to pull his or her life together and prepare for whatever lies ahead. The question is no longer “Should we tell?’ but rather, “How do we best tell?” JEANM. REEDER,RN Notes
I . S Bok, “Truth-telling: Ethical aspects,” in Encyclopedia of Bioethics, ed. W T Reich (New York: The Free Press, 1978); R Gillon, “Telling the truth and medical ethics;,” Britkh Medical Journal 291 (Nov 30, 1985) 1556-1557. 2. Gillon. “Telling the truth and medical ethics,” 1556-1557. 3. Bok, “Truth-telling: Ethical aspects.” 4. Ibid: D H Novak et al, “Changes in physicians’ attitudes toward telling the cancer patient,” The Journal of the American Medical Association 241 (March 2, 1979) 897-900; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Healrh Care Decisions (Washington. DC: US Government Printing Office, 1982) 5. T L Beauchamp, J F Childress, Principles of Biomedical Ethics. second ed (New York: Oxford University Press, 1978) 6. R T Francoeur. Biomedical Ethics: A Guide to 1310
Decision Making (New York: John Wiley & Sons, 1983). 7. Beauchamp, Childress, Principles of Biomedical Ethics. 8. W T Fitts, I S Ravdin, “What Philadelphia physicians tell patients with cancer,” The Journal of the American Medical Association 153 (Nov 7, 1953) 901-904. 9. D H Novak et al, “Changes in physicians’ attitudes toward telling the cancer patient,” 897-900. 10. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Summing Up: Final Report on Studies of the Ethical and Legal Problems in Medicine and Biomedical and Behavioral Research (Washington, D C US Government Printing Office, 1983). 11. J Fletcher, “Medical diagnosis:Our right to know the truth,” in Ethical Issues in Death and Dying (Englewood Cliffs, NJ: Prentice-Hall, Inc, 1978) 146156. 12. J F Childress, Who Should Decide? Paternalism in Health Care (New York: Oxford University Press, 1982). 13. Ibid, 104. 14. S H Wanzer et al, “The physician’s responsibility toward hopelessly ill patients,” The New England Journal of Medicine 3 10 (April 12, 1984) 955-959. Suggested reading
Abrams, N; Buckner, M D; eds. Medical Ethics: A Clinical Textbook and Referencefor the Health Care Professions.Cambridge, Mass: The MIT Press, 1983. Agich, G J. “When consent is unbearable: An alternate case analysis.” Journal of Medical Ethics 5 (March 1979) 26-28. Higgs, R. “Obstructed death revisited.” Journal of Medical Ethics 8 (September 1982) 154-156. Higgs R. “Truth at the last-A case ofobstructed death?” Journal of Medical Ethics 8 (March 1982) 48-50. Meyer, B C. “Truth and the physician,” in Ethical Issues in Dearh and Dying. Englewood Cliffs, NJ: Prentice Hall, Inc. 1978, 156-162. Radovsky, S S. “Bearing the news.” New England Journal of Medicine 313 (Aug 29, 1985) 586-588. Veatch, R M; Fry, S T. Case Studies in Nursing Ethics. Philadelphia: J B Lippincott, 1987.