Truth-telling in Medicine Medical Humanities IV Prof. Marija Definis-Gojanovic

Introduction Should physicians not tell the truth to patients in order to relieve their fears and anxieties? Not telling the truth may take many forms, has many purposes, and leads to many different consequences. Questions about truth and untruth in fact pervade all human communication. In each context, the questions are somewhat differently configured.

Introduction Not telling the truth in the doctor-patient relationship requires special attention because patients today, more than ever, experience serious harm if they are lied to. Besides harming a patient's autonomy, patients themselves are harmed, and so are the doctors, the medical profession, and the whole society which depends on humane and trustworthy medicine.

Kant’s categorial imperative doctrine Kant argued for truth and the strict rejection of all lying - truth telling is a duty (imperative) which binds unconditionally (categorical). A lie is always evil because it harms human discourse and the dignity of every human person. Truth telling is always a duty, whether the other has the right to know or whether innocent persons will be severly harmed.

Conclusion Truth obviously is an essential moral good. But, what if truth comes into conflict with other essential moral goods like life itself, or beneficence, or freedom? Can a lie be justified if it saves a human life or a community, or if another great evil is avoided? Were Augustine and Kant right when they admitted of no exceptions to the duty to tell the truth?

Diversity After a survey of 800 seniors from four different ethnic groups showed that Korean-American and Mexican- American subjects were much less likely than their European-American and African-American counterparts to believe that a patient should be told the truth about the diagnosis and prognosis of a terminal illness. European-American and African-American respondents were more likely to view truth-telling as empowering, enabling the patient to make choices, while the Korean- American and Mexican-American respondents were more likely to see the truth-telling as cruel, and even harmful, to the patients. Further differences were noted in how the truth should be told and even in definitions of what constitutes “truth” and “telling”.

Traditional approaches to truth n NO general duty to disclose n Truth as medicine; bad news can be harmful or fatal n Subsumed under general duty of beneficence or “do no harm” (nonmaleficence)

Traditional approaches to truth Objective, quantitative, scientific truth is abstract and yet it is not alien to the clinical setting. A clinical judgment is different from a laboratory judgment, and the same is true of clinical and abstract truth (clinical truth strives to address a patient's inquiries without causing the patient unnecessary harm). Clinical/moral truth is contextual, circumstantial, personal, engaged, and related both to objective/abstract truth and to the clinical values of beneficence and non-maleficence.

“ Truth-dumping ” n Violation of beneficence-- usually perceived by patient as cruel and uncaring n Violation of autonomy? –Does cruel disclosure make patient a better (freer) decision-maker? –Does patient get a voice in how truth is told?

Truthful disclosure vs lying in a clinical context Lying in a clinical context is wrong for many reasons (patient is depressed and irrational and suicidal, is overly pessimistic) Doctors can do as much harm by cold and crude truth- telling as they can by cold and cruel withholding of the truth. To tell the truth in the clinical context requires compassion, intelligence, sensitivity, and a commitment to staying with the patient after the truth has been revealed.

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) n STEP 1: S—SETTING UP the Interview - Arrange for some privacy. - Involve significant others. - Sit down. - Make connection with the patient. - Manage time constraints and interruptions.

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) – Cont. n STEP 2: P—assessing the patient’s PERCEPTION - You implement the axiom “before you tell, ask” - the clinician uses open-ended questions to create a reasonably accurate picture of how the patient perceives the medical situation—what it is and whether it is serious or not (e.g., “What have you been told about your medical situation so far?)

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) – Cont. n STEP 3: I—obtaining the patient’s INVITATION - While a majority of patients express a desire for full information about their diagnosis, prognosis, and details of their illness, some patients do not.

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) – Cont. n STEP 4: K—giving KNOWLEDGE and Information to the patient - Start at the level of comprehension and vocabulary of the patient - Try to use nontechnical words - Avoid excessive bluntness - Give information in small chunks and check periodically as to the patient’s understanding - When the prognosis is poor, avoid using phrases such as “There is nothing more we can do for you.”

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) – Cont. n STEP 5: E—addressing the patient’s EMOTIONS with emphatic responses - Patients’ emotional reactions may vary from silence to disbelief, crying, denial, or anger. - When patients get bad news their emotional reaction is often an expression of shock, isolation, and grief. - In this situation the physician can offer support and solidarity to the patient by making an empathic response.

A SIX-STEP STRATEGY FOR BREAKING BAD NEWS (SPIKES) – Cont. n STEP 6: S—STRATEGY and SUMMARY - Patients who have a clear plan for the future are less likely to feel anxious and uncertain. - Before discussing a treatment plan, it is important to ask patients if they are ready at that time for such a discussion.

Truth Protocol (Buckman) n Pick a good time and setting and assemble right people n Find out how much the patient already knows n Find out how much the patient wants to know n Share the information the patient seeks –in sensitive manner –in appropriate “chunks” n Respond to patient’s feelings n Planning and follow-through

Lessons from Buckman n Effective truth-telling is heavy on listening and light on talking n Most patients want to know more and can handle it; a few don’t want to n Giving patient greater role in setting agenda is respectful of autonomy and is also compassionate and caring

When Can Paternalism Be Justified? Atul Gawande, “Whose Body Is It Anyway?” New Yorker, Oct. 4, 1999

“ Weak ” Paternalism n Patient lacks important dimensions of capacity to make autonomous decisions –Child –Dementia –Mentally ill n Generally easier to justify

“ Strong ” Paternalism n Patient appears to have full capacities for autonomous decision-making n Provider nevertheless feels that decision is mistaken and will cause great harm n Usually seen as much harder to justify-- threat to respect for autonomy

Schneider (cont.) n The people who wish not to choose often have very rational reasons for this preference –Weakness and fatigue –Lack of knowledge or understanding –Awareness of problems in own thinking process –Avoidance of guilt

Truth Telling and Patient Autonomy Autonomists - full disclosure (it is not sufficient to tell the truth, one has to tell the whole truth; simply require that "everything be revealed" because "only the patient can determine what is appropriate." Other principles, like beneficence, non-maleficence, and confidentiality, may be given little consideration or turned into subordinate obligations.

Truth Telling and Patient Autonomy But, does every feasible hypothesis require disclosure to a patient? Is every bit of data about a disease or therapy to be considered information to be disclosed? Telling the truth in a clinical context is an ethical obligation but determining just what constitutes the truth remains a clinical judgment. Autonomy cannot be the only principle involved.

The Dying Patient Some patients who are given a cancer diagnosis and a prognosis of death may use denial for a while and the bad news may have to be repeated, but the use of denial as a coping device does not mean that patients would prefer to be lied to or that truth is not important to them. Patients need the truth even when it tells them about their death.

The Dying Patient The doctor who tells a dreadful truth must do so at a certain time, and in a certain way. The communication of truth always involves a clinical judgment. Truth telling in every clinical context must be sensitive and take into consideration the patient's personality and clinical history.

Usually the Questions n “When to tell?” n “How much to tell?” n “What exact words to use?” n “Whom should be there with the patient?” n “What comes next?”

n 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.

n How much do patients need to be told? 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.

n What if the truth could be harmful? 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.

n What if the patient's family asks me to withhold the truth 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.

n When is it justified for me to withhold the truth from a patient? If the physicians has compelling evidence that disclosure will cause real and predictable harm, truthful disclosure may be withheld ("therapeutic privilege“) is important but also subject to abuse. The second circumstance is if the patient him- or herself states an informed preference not to be told the truth.

n What about patients with different specific religious or cultural beliefs? Those patients may have different views on the appropriateness of truthful disclosure. A culturally sensitive dialogue about the patient's role in decision making should take place.

n Is it justifiable to deceive a patient with a placebo? In general, the deceptive use of placebos is not ethically justifiable. Specific exceptions : - 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

Truth in the History of Medical Ethics The historical medical codes said little or nothing about telling the truth and avoiding lies. The value of not doing harm was so strong that lying in order to avoid harm was considered acceptable. “Tell the truth as long as it helps rather than harms the patient."

Truth in the History of Medical Ethics The doctor's principal moral obligation was to help and not to harm the patient. Today, things have changed. Beneficence and non-malifience remain basic medical ethical principles, but truth is also a medical ethical principle. Today, Bacon's comment that "knowledge is power but honesty is authority," is particularly applicable to doctors.

Truth in the History of Medical Ethics Because patients today can and must consent to whatever is done to them, truthful disclosure of relevant information is a legal and ethical duty. Modern medical ethical codes reflect this shift in the importance of veracity: The code of the American Nurses Association, "Principles of Medical Ethics" of the American Medical Association, "Patient's Bill of Right"...