Mr. H is 26 years old and has recently joined a general practitioner’s list. The patient’s past medical history is most notable for an episode several years previously of unilateral arm weakness and visual blurring without headache that resolved within 12 hours. He was referred to a neurologist, who did many tests and told him it was likely a transient viral infection and he should return if the symptoms recurred. Mr. H thought no more about it and has had no similar episodes since then. His medical records contain a letter from the neurologist to the previous family physician stating that Mr. H almost certainly has multiple sclerosis. The neurologist explains that he does not disclose the diagnosis in the early stages because he is concerned about causing excessive worry.
Ms. I is a 56-year-old dishwasher admitted with jaundice and anemia. Investigations have revealed advanced cholangiocarcinoma. Her family insists she not be told, explaining that families in their culture act on behalf of ill relatives. They argue that telling her the diagnosis of cancer would cause her to lose hope and so forbid its disclosure to her by medical staff. “Leave it to us to tell her what she needs to know,” they say. A staff member who speaks their language overhears them telling Ms. F that everything will be fine and that she will be able to go home soon.
Truth telling in healthcare may be defined as the practice and attitude of being open and forthright with patients; that is, it is about encouraging authenticity and genuineness in the relationship between healthcare professional and patient. Truth telling requires the belief that, in general, truth is better than deception. It also requires an intent and effort to be as accurate and honest as possible with patients and includes the duty to disclose information for consent purposes.
Truthfulness with patients comports well, of course, with democratic policy and practices. Without accurate information, patients are less able to make informed decisions about care. Scientific medicine has provided patients with new treatment opportunities and requires clinicians to be knowledgeable about these and share that knowledge with patients – thus, the harms of non-disclosure have increased as the options for care have expanded over time. Informed patients may also make decisions affecting their lives as a whole that they could not have made had they been unaware of the true nature of their condition.
Regardless of consequences, patients should be told the truth because of the respect owing to them as persons. Interviews with patients support this perspective. For example, in a study carried out before any treatment for multiple sclerosis existed, many patients with the disease felt they had a right to know what was wrong with them. Some were angry about being asked why they wished to know. One said: “Do I have to explain why? Just so that I know” (Elian and Dean, 1985). Cabot’s (1903) view that physicians should strive to create a “true impression” in the mind of the patient about his or her condition fostered the covenant of trust between physician and patient that is central to the practice of medicine (Cassel, 1996). This contrasts with the centuries-old Hippocratic cautioning against veracity with patients (Bok, 1979).
Deception by physicians is sometimes implicitly recommended as a way of preventing the possible harms of truth telling (Nyberg, 1993). Patients, especially when ill, are presumed to have difficulty handling the unvarnished truth and so it is/was the doctor’s duty to keep the “whole truth” from them. Some cultures and families believe truth telling is cruel as it may cause avoidable worry in patients. This “protective deception” has some credence, especially at times when, and in those places where, medicine could offer little tangible help to patients. Nonetheless, although very ill patients may want someone to look after and guide them (Ingelfinger, 1980), this does not necessarily entail a preference for ignorance. Allowing others to make decisions for oneself, to be “taken care of” in the full sense of this phrase, can be consistent with wishing to remain informed about one’s condition. Physicians should “sound out” patients about their preferences in this regard irrespective of cultural differences.
Truth telling, as conceived in this chapter, includes the broader notion of accurate and honest communication practices. The jurisprudence relevant to this varies among countries and is largely focused on negligent disclosure for consent purposes (see Chapter 2 for more information). Canadian courts have long recognized the physician’s obligation to provide information that would be required by a reasonable patient in the plaintiff’s position (Reibl v. Hughes, 1980). Australian (Rogers v. Whitaker, 1992; Chappel v. Hart, 1998) and most American jurisdictions ( Canterbury v. Spence, 1972) similarly use this so-called modified-subjective standard while British courts seem largely to adhere to a profession-based standard of disclosure (what a reasonable professional would disclose) ( Bolam v. Friern Hospital Management Committee, 1957).
Recent developments have expanded legally required disclosure to include, as part of a physician’s fiduciary duties, telling patients and/or their families about “unexpected outcomes of care,” that is, adverse events or errors. For example, failure to tell a patient about the accidental puncture of his spleen during a lung biopsy was held to breach the physician’s duty to inform the patient, particularly because the patient had asked what had occurred during the procedure. The judge concluded that litigation arose from a “less than satisfactory physician–patient relationship” caused by the failure of the physician to take the patient “into his confidence” (Stamos v. Davies, 1985, p. 25).
In another case, a physician was found negligent for failing to tell a patient of his risk of having (possibly) acquired infection with the human immunodeficiency virus from a transfusion. While the doctor argued he had done so to protect the patient from information that would only cause him psychological harm, the court held that this patient would have wanted to know this information, even though, at the time, there was little that could be done for HIV (Pittman Estate v. Bain, 1994).
Courts in the USA (Arato v. Avedon, 1993), Canada (Hopp v. Lepp, 1980; Reibl v. Hughes, 1980), and the UK (Chester v. Afshar, 2004) have granted that there may be exceptions to truth telling, for example when the patient’s emotional condition is such that the disclosure of bad news could itself cause harm. The most relevant test for non-disclosure is “whether the disclosure would in itself cause physical and mental harm to this patient” (Picard 1984, p. 99). Physicians should start with the assumption that all patients are able to cope with the facts, and reserve non-disclosure for the less usual cases in which more harm will result from telling the truth than from not telling it.
The American College of Physicians (2005, p. 563) recommended that “[h]owever uncomfortable for the clinician, information that is essential to and desired by the patient must be disclosed. How and when to disclose information, and to whom, are important concerns that must be addressed with respect for patient wishes.” It adds that the professional duty to be honest with patients requires that the “disclosure and the communication of health information should never be a mechanical or perfunctory process. Upsetting news and information should be presented to the patient in a way that minimizes distress.”
The British Medical Association (2004, p. 43) noted that the “relationship of trust depends upon ‘reciprocal honesty’ between patient and doctor” and also encourages the sensitive delivery of bad news. The Canadian Medical Association’s (1996) Code of Ethics recommends that physicians provide patients with whatever information that might, from the patient’s perspective, have a bearing on medical care decision making and to communicate that information in a way that is comprehensible to the patient.
In a landmark study in 1961, 90% of a sample of 219 US physicians reported they would not disclose a diagnosis of cancer to a patient (Oken, 1961). Of the 264 physicians surveyed almost 20 years later, 97% stated that they would disclose a diagnosis of cancer (Novack et al., 1979), indicating a complete reversal of professional attitudes toward truth telling, at least in the context of a diagnosis of cancer.
Cultural values appear to influence physicians’ attitudes toward truth telling. In one US study, physicians who reported that they commonly told cancer patients the truth said that they did so in a way intended to preserve “hope” and “the will to live,” both valued notions in US society (Good et al., 1990). Compared with their North American counterparts, gastroenterologists from southern and eastern Europe are less likely to be candid with patients about serious disease, believing this to be the best way to preserve “hope” (Thomsen et al., 1993).
The literature suggests that most North American patients want to be informed about their medical situation. For example, in a study involving 560 patients with cancer and their families, 87% of respondents felt that patients should be told the truth about their illness (Samp and Curreri, 1957). A 1982 survey indicated that 94% of patients wanted to know everything about their condition; 96% wanted to be informed of a diagnosis of cancer, and 85% wanted to be given a realistic estimate of their time to live, even if this were less than one year (President’s Commission for the Study of Ethical Problems in Medicine, 1982). Studies of older patients, sometimes thought to be less interested in the truth, have shown that almost 90% want to be told the diagnosis of cancer (e.g., Erde et al., 1988). Studies have found that over 90% of patients want to be told a diagnosis of Alzheimer disease (Ajaj et al., 2001), and that over 80% of patients with amyotrophic lateral sclerosis wanted to be given as much information as possible (Silverstein et al., 1991).
However, lack of effective treatment has generally been taken to justify medicine’s traditional avoidance of truth telling and is thought to be one reason, even today, why many patients at risk for Huntington disease do not seek to know their genetic status (Terrenoire, 1992). Other studies suggest cultural influences upon truth telling. For example, one study found a larger percentage of Korean-born patients preferred to be given less information than did US-born patients (Blackhall et al., 1995). In Italy, lack of candor about the diagnosis of Alzheimer disease is common (Pucci et al., 2003). A larger percentage of patients in Japan (65%) than in the USA (22%) would want their families to be told a diagnosis of cancer before being informed themselves, and many more Japanese (80%) than US (6%) doctors agreed with this (Ruhnke et al., 2000). As a result, patients with advanced cancer in Japan are told their prognosis only if the patient’s family consents (Akabayashi et al., 1999).
Good physician communication skills, which are part of the art of truth telling generally, improve patient satisfaction and the quality of medical care (Brown et al., 1999). It has been estimated that an extra two to three minutes for consultation improves rapport with the patient (Levinson et al., 1997). Truth telling increases patient compliance (concordance) with prescribed medications (Greenhalgh, 2005), reduces morbidity such as pain (Egbert et al., 1964) and anxiety (Luck et al., 1999) associated with medical interventions, and improves health outcomes (Stewart, 1995). Informed patients are more satisfied with their care and less apt to change physicians than those not well informed (Kaplan et al., 1996). Even very young children, facing major surgery, are able to handle difficult news (Alderson, 1993). Failing to be honest with children can have lasting negative psychological consequences (Wallace, 2001). In one study, parents who were able to be candid about death with their dying child felt such open discussion helped them and their child. Parents who were unable to be so forthright later regretted their reticence (Kreicbergs et al., 2004).
Some studies, however, suggest that truth telling can have negative consequences. Poor disclosure, even if accurate, can have devastating consequences for patients (Anon., 2000) – such disclosure is typically done too hurriedly, in the wrong setting, without appreciation of the patient’s circumstances, and without addressing the patient’s real needs and fears.
Truth telling can result in “labeling” patients. For example, patients told they had hypertension exhibited decreased emotional well-being and more frequent absence from work (MacDonald et al., 1984). In another study, more information to patients with cancer resulted in higher anxiety levels among patients (Jenkins et al., 2001). Concerns regarding the purportedly very bad outcomes of disclosure – loss of hope, premature death, or suicide – are anecdotal and lack any real empirical foundation.
Truth telling can be difficult in practice because of uncertainty – both in medicine and in the patient in terms of what he or she wishes to know – and the concern that the “truth” might harm the patient. It can also be difficult because truth telling is not a simple task and often requires, for its proper exercise, a longitudinal relationship between doctor and patient.
The uncertainty of an early diagnosis of a lethal condition may make the clinician wary of premature disclosure. Nevertheless, this uncertainty can and should be shared with patients (Logan and Scott, 1996). Telling patients about the clinical uncertainties and the range of options available allows them to appreciate the complexities of medicine, to ask questions, to make informed realistic decisions, to assume responsibility for those decisions, and to be better prepared just in case the dire prognosis turns out to be correct.
Predicting what information a patient will find upsetting, or foreseeing how upsetting certain information will be, can be difficult. Patients may indicate, explicitly or implicitly (Pisetsky, 1996), their desire not to know the truth about their situation. When such desires are authentic and realistic they should be respected. It is possible to deliver the truth in a way that softens its impact; many books provide practical suggestions on telling bad news (Buckman, 1992; Tate, 1995). The truth may be brutal, but “the telling of it should not be” (Jonsen et al., 1992). Indeed, the task for physicians is how to combine honesty and respect for patient autonomy with caring and compassion.
For example, some patients with terminal illnesses may indicate that they do not want to know the full truth about their situation (Surbone, 1992). Physicians should explore these preferences sensitively to ascertain whether they are indeed authentic. There should be an attempt to canvas the patient’s views on disclosure by “offering the truth” to the patient (Freedman, 1993). When a patient has a serious illness such as cancer, it may be helpful to document his or her preferences regarding the involvement of family members. Families who resist disclosure should be counseled about the importance of truth telling, much as they might be counseled about the appropriate management of any medical problem. Ongoing and respectful communication often, but not always, can overcome family and cultural barriers to disclosure (Chiu et al., 2000).
Physicians are increasingly expected to disclose the occurrence of adverse events resulting from medical care to patients (Hébert, 2001), but they frequently do not do so (Berlin, 2006). The disclosure of such events is not an admission of substandard practice. Telling the truth can defuse resentment on the part of the patient and reduce the risk of legal action (Ritchie and Davies, 1995). Patients sometimes sue physicians out of a “need for explanation – to know how the injury happened and why” (Vincent et al., 1994).
Despite this chapter’s emphasis on truth telling, studies suggest that 10–20% of all patients do not want to know the details of their condition. For such patients, truth should be offered but not forced on them. In all cases of disclosure, just how and when to discuss the patient’s situation, and how much to say at any one time, will vary from one patient to the next (Shattner, 2002). This is the art of truth telling, which relies on the skills and attitudes of the doctor to “take the patient into his (or her) confidence” and give him (or her) a “true impression” of his (her) illness.
If the neurologist seriously considered multiple sclerosis as a likely or working diagnosis, he was not justified in withholding this information from Mr. H. A general worry about causing anxiety is not sufficient to exempt a physician from his or her responsibility to tell the patient the truth – which in this case is the possibility (or probability) of serious disease. Physicians need not and should not wait for certainty before they disclose information to patients. Patients may be empowered to watch for symptoms of disease progression or be encouraged to do things that might prevent progression. If Mr. H is not told about his condition and makes a decision he would otherwise not have made had he been better informed, his physicians would bear some moral responsibility and perhaps even legal liability.
Ms. I should be spoken to on her own with a translator who is not a relative to have her views on disclosure assessed. Does she want to be informed of all the details of her illness or would she prefer the physicians to speak first with her family? The patient’s authentic wishes ought to be respected. Where they diverge from the family’s views, these differences should be acknowledged and help offered to the family in accommodating to them.
An earlier version of this chapter has appeared: Hébert, P. C., Hoffmaster, B., Glass, K. C., and Singer, P. A. (1997). Truth telling. CMAJ 156: 225–8.