Truth-telling in health care

Introduction

The moral importance of telling the truth is recognized in both moral theory and in the practical reality of everyday living. In the context of health care, the duty of a health professional to be honest with her patient is articulated in professional codes of conduct, for example the General Medical Council (GMC) document Good Medical Practice lists in its duties of a doctor,

‘be honest and open and act with integrity’ ¹

It also states.

‘share with patients, in a way they can understand, the information they want or need to know about their condition, its likely progression, and the treatment options available to them, including associated risks and uncertainties’. ¹

When is disclosure of information perceived as a problem?

Information is being shared in health care all the time and in general the guidance of the GMC is easily interpreted and followed. Difficulties arise when the nature of the information is such that there is a question about whether the patient wants or needs to know it. For example

The information is likely to cause severe distress to the patient (diagnosis of terminal illness, failure of treatment);

Other situations creating difficulties for clinicians are not related directly to the patient's wants or needs regarding their illness but to wider issues such as disclosure of medical error and identifying poor performance in colleagues. In these situations, other considerations such as the interests of the clinicians may play a greater role.

Respect for autonomy and patients' right to know

The most common argument put forward to support the duty of truth-telling in health care rests on the principle of respect for autonomy. This requires that patients be given all the necessary information for them to be able to make choices about their treatment and about how they live their life more broadly. For clinicians to make assumptions about the effect, harmful or otherwise, on the patient of having this information is seen as unjustified paternalism. In an earlier volume of this journal, Johnston and Holt argued against the legal concept of therapeutic privilege, which permits withholding of information about a medical treatment in exceptional circumstances where the doctor believes that disclosure would be damaging to the patient, concluding that ‘a competent adult determines her own best interests’. ⁵ However there is a paradox in relation to autonomy and truth-telling in health care. An autonomous individual has a right to make her own decisions including decisions about how much information she wants to be given. However, it can be difficult for a patient to know how much information she wants before the information is given to her. The patient who says that she does not want to be told of the risks of a procedure when giving consent poses a further challenge. Do we respect her autonomy by not giving information even if we think it might be important enough to influence her decision, or do we say that without the relevant information she cannot make an autonomous decision? Different conceptions of autonomy (as discussed in a previous five-minute focus ⁶ ) might yield different conclusions.

Empirical studies of patient's preferences suggest that patients from Anglo-Saxon cultures tend to favour being given information about prognosis whereas patients from other cultures tend to favour non-disclosure. ⁷ In some cultures there is a preference for family members to be told the diagnosis first. ^8,9 Respecting patient autonomy in truth-telling as in other aspects of health care involves being aware of the cultural and other values of the patient. It also requires preliminary discussion to ascertain those values and to identify the nature and level of information that the patient would want to be given. Respect for autonomy in the context of health care is usually closely linked to the capacity of a patient to make decisions for herself regarding treatment. However, providing patients with relevant information is also important in situations when the patient lacks capacity. Recognizing limited autonomy and respect for the patient as a person will still require health professionals to be truthful and share information. However, other ethical considerations such as concern for patient welfare will weigh more heavily in decisions about disclosure of potentially harmful information in these cases.

Welfare of the patient: enhanced or harmed by truth-telling?

Another key ethical principle that is invoked in arguments both for and against truth-telling in health care is that of acting in the patient's best interest. This requires an analysis of the consequences of alternative actions (disclosing or withholding information) in terms of the overall benefit or harm to the patient. In studies of health-care professionals' behaviour in relation to truth-telling, one main reason for withholding information from patients is that disclosure would cause severe distress and thus harm the patient. However, a counterargument to this position is that providing information to patients, even if the information is bad news, empowers patients to make decisions, reduces anxiety and uncertainty, and promotes trust in the health-care professionals, thus improving patient welfare rather than reducing it. The empirical evidence on this question is inconclusive with some studies that showed provision of more information about prognosis in patients with cancer was not associated with increased anxiety, ² but others showing a reduction in quality of life of patients who knew their diagnosis of cancer compared with patients who did not. ¹⁰ Again cultural values may be a crucial factor. Most empirical studies of truth-telling have focused on the disclosure of prognosis or diagnosis in serious illness. These are of course not the only situations where truth-telling is important and an assessment of the benefits and harms of disclosure will vary depending on the context in which disclosure raises ethical difficulty.

Wider consequences for patients and society

A further consequentialist argument in favour of truth-telling is that it promotes trust of health-care professionals generally if they are seen as honest and open in their discussions with patients. Lack of trust could result in patients not believing their doctors in a wide range of situations that could ultimately lead to lack of compliance with treatment generally. The wider impact of truth-telling in health care is not only confined to sharing of information with patients about their own disease, treatment and prognosis. Other situations where the duty to be honest in disclosing information includes cases of medical error, whistle blowing and providing feedback or references for junior staff and colleagues. In these cases, principles of respecting patient autonomy and acting in patients' best interests may be in conflict with other values or interests of the health professional such as the fear of adverse consequences on her career if she discloses error or whistle blows, or the need to show solidarity with other colleagues. Studies of junior doctors describe their difficulty in dealing with identified poor practice among senior colleagues and the moral distress that this can cause. ^11,12

Honesty as a virtue in health care

A different moral perspective on truth-telling would argue that telling patients the truth is important not because there is a moral duty to tell the truth, or that we should do so because it produces the most benefit, but because to withhold information from the patient is dishonest and a good health professional should possess, among other virtues, the virtue of honesty. This focus on the character of the health-care professional may enable a more nuanced approach to providing information to patients. The importance of the process of providing information and not simply the act of providing information has been emphasized in the literature. ^13,14 Studies suggest that patients value doctors who take time and pace the giving of information about prognosis as well as demonstrating that they care. ^15,16

The clinical context of truth-telling

In a systematic review of truth-telling in discussing prognosis in advanced life-limiting illnesses, Hancock et al. ² found a disjunction between health-care professionals' belief that patients should be given the truth about prognosis and their behaviour that was often to avoid the subject or deliberately withhold information. The identified reasons for this disjunction included lack of time to respond to the patient's emotional needs, lack of training, uncertainty about prognosis, requests from the family and feelings of stress, inadequacy or hopelessness on the part of the health professional. Clinical uncertainty has also been suggested by Berry ¹⁷ as a rational argument for withholding the truth from relatives of critically ill patients. Other difficulties noted by staff are open to resolution with organizational changes that address staff training and support and providing time for what are often difficult and ongoing consultations. Measures to facilitate truth-telling around medical error and whistle blowing are also the responsibility of health-care organizations. Developing the virtue of honesty may require action at all levels in health care.

Summary points