An Anthropology of Lying

Information in the Doctor-Patient Relationship

Sylvie Fainzang

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317182078
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Sociología

In the era of health democracy, where a patient's right to be informed is not only widely advocated but also guaranteed by law, what is the real situation regarding patient information? Do patients receive the information that they request with regard to their diagnosis, prognosis or treatments? And what information do patients themselves give to their doctors? Drawing on observational research in hospitals and covering the exchanges between doctors and patients on the subject of cancer treatment and that of other pathologies, this book reveals that the practice of telling lies is widespread amongst parties on both sides of the medical relationship. With attention to the manner in which information of various types is withheld and the truth concealed on either side of the doctor-patient relationship, the author explores the boundaries between what is said and what is left unsaid, and between those who are given information and those who are lied to. Considering the misunderstandings that occur in the course of medical exchanges and the differences between the lies told by doctors and patients, An Anthropology of Lying: Information in the Doctor-Patient Relationship analyses the role of mendacity in the exercise of, and resistance to power. A fascinating study of the mechanisms at work and social conditions surrounding the accomplishment of lying in medical settings, this book casts fresh light on a subject that has so far been overlooked. As such, it will appeal not only to sociologists and anthropologists of health and medicine, but also to medical professionals.

Chapter 1
The Doctors

Doctors and Information

I will attempt here, by examining the explanations and comments of doctors on one hand, to decipher the ethical positions they purport to hold and the justifications they give for their behaviour, and through observation of their attitudes during consultations on the other hand, to discover what mechanisms their practices of providing or not providing information to patients are objectively based on. The issue of information will be considered from two different angles: firstly through a discussion of general information on the affliction in question and its treatments, and then by using information concerning the patient’s particular case, because, as we will see, the issue of information in doctor–patient relationships continually oscillates between these two registers. There exists a wide variety of attitudes concerning information provision: from doctors who tell their patients almost nothing, just the bare legal minimum, to those who tell them everything, in order to protect themselves from the possibility of prosecution. The majority however only provide some of the information they possess. The aim is thus to find out what they say, what type of things they reveal and do not reveal, to whom and under what conditions.

It is generally accepted amongst health professionals today that ‘the diagnosis is almost never withheld from the patient’. On learning the subject of this research, an intern stated with conviction: ‘Whether to say it or not applies to the prognosis. Because the diagnosis is no longer a problem; we talk freely about cancer nowadays!’ This conviction, shared almost unanimously by doctors today, should be considered as a preconception since, with closer observation, it is evident that while many doctors claim to be in favour of patient information and are convinced that this information is now fully provided, the reality in practice is that this information is not so freely given.

The majority of doctors agree that not everything should be revealed to a patient. They set certain limits to this information and apply conditions to its provision. In this way, the doctors have created a doctrine to which they adhere almost unanimously − although some variations can nevertheless be observed. For example, doctors assume it is obvious that patients should only be informed if they want to be. ‘We only truly inform patients in response to a request’, said one oncologist. Another said: ‘I only say such things in answer to a clear and precise question’. ‘The degree of precision I give depends on the degree of precision of the questioning’, clarified another. However, although all doctors chant this doctrinal principle in unison, this attitude is obviously problematic to the extent that, as this research reveals, many patients say they do not know what or how to ask. Thus the question is, how do the doctors detect the existence of a request for such information on the part of the patients?

The doctors cite two main types of obstacle to information provision. The first is linked to the difficulty of making patients understand that, while they can be informed of their diagnosis, this cannot be done for their prognosis.

Indeed, it is commonly thought that information cannot be provided on the prognosis since the doctors cannot actually predict the patient’s future, how their disease will progress and what will become of their health status. ‘Some people not only want to know their diagnosis but also their prognosis. That is much harder, because we can’t tell them that, we really don’t know’, one doctor remarked. This observation refers to the degree of uncertainty that exists on the subject of prognosis, a difficulty well known to health professionals. Aside from the psychological and existential difficulties inherent in telling patients that their health is deteriorating or that they might die, it is often this uncertainty that is at the heart of the doctor’s reluctance to provide a prognosis.

While some doctors cite the law as a reason for saying everything, fearing the excesses of an increasingly litigious society, others choose to limit the information they provide to that which is certain. In making a prognosis, doctors risk making a mistake and maximising the risks incurred by giving false information or by making a statement that the patient takes to be information, when the doctor does not. This uncertainty thus takes us to the problem of knowing what can be said and under what conditions, which is even more challenging for the prognosis than the diagnosis. But, as we will see, the problem becomes even more complicated when there is no clear boundary between the diagnosis and the prognosis.

The issue of information hinges on that of truth even though it can evidently not be reduced simply to that. However, many professionals do not believe that the problem can be perceived in terms of truth and lies, precisely because of the uncertainty surrounding how the disease will develop. ‘Anyway, it is never possible to tell the truth. Even if we are sure that the patient is done for, we wouldn’t say: “you only have 3 months left”! We could always get it wrong, we are not God’, explained one doctor. ‘Truth doesn’t exist’, said another, ‘we can never be sure of recognising the truth’. However, this type of argument is specious in that many of the practices of information retention, or even lying, cannot be explained by this uncertainty. Indeed, there are some things that hold true at a certain point in time given the knowledge available, which may subsequently be supplanted by another truth as medical advances are made. And the truth concerning a patient’s health status and the present evolution of his/her affliction does in fact exist. The uncertainty simply underlines the temporary character of the truth, it does not eliminate the real contents of this knowledge. Thus, a distinction must be made between the truth as an unknowable reality and the truth as the reality one believes to be true. Therefore, the argument of uncertainty only applies to the prognosis and not to the diagnosis nor to the known effects of a treatment for example. As such it is appropriate to raise the question of truth, not simply in terms of reality, but also in terms of what we think reality is or what we actually know of it, and to distinguish between the posture that refuses to predict what is not known and the posture that refuses to say what is known. Only the second posture is relevant to the issue of patient information. Using the argument of uncertainty obscures the existence of situations in which doctors possess knowledge but nevertheless do not communicate it to patients, but this does not exhaust the problem of trying to identify the mechanisms inherent in not providing information and in telling lies.

The diagnosis and the prognosis are two distinct stages in the overall process of making statements concerning the afflictions of patients. While the diagnosis is relatively easy in that it can be made by reading the results of various examinations (ultrasound, scan, blood tests for example), the prognosis, on the other hand, is the result of a judgement (itself made using objective data) on the probable outcome of the illness. It thus relies on suppositions and deductions and is based on logical reasoning and the statistical data available on the development of the disease.

The second difficulty the doctors mentioned, which is partly linked to the problem of uncertainty, concerns the statistical truth of information. The difficulty lies in getting the patient to accept that the only information that can be provided on a prognostic level is statistical, which in fact has no direct bearing on a particular individual case. ‘I can’t say whether this is a cancer you recover from, because even if you have a type of cancer with a 90 per cent survival rate, I can’t know if you are in the 10 per cent or the 90 per cent’ one doctor attempted to explain to his patient to make her understand his reluctance to provide statistical information. Here again, the doctors very often avoid the problem of truth, believing that their patients have not understood the exclusively statistical value of their prospects for recovery when they accuse the doctors of not telling the truth. ‘People say we are lying to them when we tell them they have a good chance of recovery, because they are not in fact getting better!’ But we will see that lying results from very different mechanisms, and that the problem here is that of the difference in scales between doctors’ and patients’ discourses.

Ethical and therapeutic options

The issues of information and truth are difficult to dissociate. Here some preliminary considerations are presented in order to introduce the arguments doctors make to justify the way they conceive and manage the provision of information to patients. This discussion will be taken further when examining the links between doctors and lying.

The ethical dimension of the issue of information and truth has been widely debated in the literature (Cassileth 1979; Bok 1979; Fletcher 1979). These authors all highlighted the ethical dilemma of whether to tell the truth or lie. In reference to the Hippocratic Oath which says that one must do the patient no harm, some take this dictate as a reason not to reveal to patients their health status or their prognosis. Others use this same dictate to mean that one should not withhold information from the people it concerns. ‘Do no harm’ is a relatively subjective judgement.

Cassileth (1979) showed that informed patients deal with and understand therapeutic measures better. Others recommend that doctors keep genuine information to themselves in the name of ‘therapeutic privilege’ on the grounds that ‘with uncertainty, comes hope’ (MacIntosh 1979).¹ These doctors believe that revealing an illness is equivalent to giving a death sentence (Oken 1961), while some authors see their silence to be the result of the doctors’ own fear of death (Konior and Levine 1975).

Given that the debate is framed in ethical terms, the supporters of truth often construct their opinions in response to positions advocated by its detractors and formulate their justifications on the same ground as the latter. Thus, in response to the argument sometimes made by the doctors to justify not providing information, which says it is better to remain silent to lessen the patient’s suffering, Katz (1984) argued that to the contrary, silence produces negative effects and causes suffering in patients, and that information is a therapeutic necessity because it relieves suffering. He made a strong plea in support of the truth and its power to liberate patients from isolation. Similarly, in a challenge to his colleagues who believe one should withhold the truth in order to protect patients from the fear of death and ensure the best possible attitude to fight the disease, Abiven (1996) declared that ‘the truth is less difficult to accept than the anxiety induced by secrets’ and argued that the practice of lying ‘to do good’ or ‘to be humane’ is the true cause of suffering.

The issue of truth remains a major aspect of the ethical debates on the treatment of patients, especially cancer patients. The ethical positions are themselves supported by philosophical positions: while Kant believed that truth is an absolute and unconditional must, Benjamin Constant however proposed the existence of the ‘right to lie, for benevolent motives’.²

Following in the same philosophical vein as Kant, Fletcher (1979) thinks the idea that it is sometimes good to lie is unjustifiable and that the truth is essential to our democratic ideal. He highlighted the dangers of not revealing the truth by evoking the case of a patient who asked his doctor never to tell him if ever he was seriously ill. Fletcher asked: ‘Later on, what will he think when his doctor gives him reassuring news? He may truly believe that his illness is not serious and that he is being told the truth, but the doctor may be following his initial request, in which case, he is lying’. Fletcher concluded that this would cause a disastrous situation. His example is thus an illustration not only of a moral situation but also of a logical one, since the patient finds himself in the same state of perplexity as the person hearing Epimenides’ message in his famous paradox.

Supporters and detractors of the truth have thus developed numerous arguments (see Geets 1993),³ but what is most striking is that the same arguments (‘for the good of the patient’ or ‘to do the patient no harm’) are used to support radically opposing positions.

However, the authors of publications on this subject are not the only ones to discuss this question. Faced with the imperative to inform patients, doctors themselves also confront such ethical questions. For example, they ask themselves: ‘How can I tell patients their condition is deteriorating without making them panic or become demoralised?’ or, when the prognosis leaves no hope: ‘How can I make patients understand that they will be moving from curative treatment to palliative care?’ The dilemma faced by doctors is linked to the conflict inherent in trying to follow two distinct and sometimes antagonistic principles: the principle of non-maleficence (a variation of the principle of beneficence), which is the basis of the decision to say nothing so as not to let the patient lose hope, and the principle of autonomy (Reich 2004).⁴

At this first stage, we could qualify the state of tension experienced by the doctors stemming from a simultaneous reference to two partly contradictory ethical principles as ‘ethical dissonance’. They must, on one hand, reassure the patient (a role some attribute to the paternalistic model of doctor–patient relations), and on the other, allow them autonomy, or in other words, give patients their liberty and let them manage their own lives and bodies (this role fits into a more egalitarian relationship). Yet, the issue of patient information mobilises these two partly contradictory principles, placing the doctor in a sort of double bind. The model of egalitarian relationships nonetheless appears inadequate to those who cannot see how patients can possibly take decisions concerning their health. The model of shared decision-making advocated by some health professionals in order to defend patient information, is disputed by others, who perceive this to be more the beginning of a model of ‘shared anxiety’. After having revealed the inherent risks of a proposed treatment to a patient, a doctor said bitterly:

I have to tell him, it is the law; besides, in my letter to colleagues which includes a consultation report, I am obliged to write ‘in agreement with the patient’ or ‘duly informed’ … There is a social pressure to say everything even if the risk is 1 in 100,000. Why worry patients when they could die anyway of renal or heart failure if I don’t give them this treatment? I am not in control anymore. Today, we no longer practice a paternalistic style but a contractual style of medicine; if they want shared decision-making, they get shared anxiety as well! We no longer have the right to prescribe carcinogenic drugs without saying so, when the risk is only theoretical! In fact, for them, letting them decide means they can decide between the drawbacks of cortisone and the drawbacks of the disease itself.

Some doctors however come to question whether the reassuring role they try to adopt when refusing to give a patient bad news is actually a good thing, or at the very least, they put the advantages in perspective: ‘One day, I had to tell a woman the results of her biopsy by telephone. She phoned and I confirmed her diagnosis (she had liver metastases) in a very comforting way; too comforting! Because after that, it was very difficult to make her come in quickly for the treatment, which need to be started urgently. She said, “if it’s not serious, there’s no need to rush”’.

Medical arguments

Various and contrasting mechanisms exist that dictate the choices made among the health professionals who advocate patient information. Their reasons for making this argument are not always the same, and mean they take differing ethical positions. On this subject, the doctor population is divided between those who advocate information in itself (the patient’s right to know) and information for a determined end; that is information as a means of convincing patients of the necessity of following a certain treatment.⁵ In the first case, it is a matter of informing patients as people with the right to know about matters concerning them and their bodies; in the second case, information is considered necessary so that patients adhere better to their treatment regime or sometimes only if this would encourage patients to accept the treatment.⁶ The first position advocates a principle, the second takes a practical stance. The principled position and the practical one borrow from distinct registers: the first takes a moral approach, the second a medical one. The therapeutic necessity of information is very clearly expressed by this doctor: ‘When chemotherapy is required, I provide all the information because it is necessary since there will be a treatment evaluation; therefore, the patient must be informed of it’. In these circumstances, he provides information for practical, functional and utilitarian reasons. ‘I tell them if the treatment doesn’t work just so they understand the need to change the protocol’. Practical information provision is more a therapeutic strategy than an ethical or philosophical option.⁷

The problem becomes particularly thorny when a conflict arises between ethical and therapeutic options. Yet, by examining the reasons behind doctors’ decisions to say or not say, we can see that they sometimes collide, and that the doctors find themselves faced with a Cornelian dilemma between therapeutic options and ethical ones. Indeed, it is clear that there can be a risk of not even reaching a diagnosis, even in serious cases, because the patient is not sufficiently worried and will not agree to therapy. In these circumstances doctors can find themselves torn since for ethical reasons they may believe that the truth should not be told but for therapeutic reasons they may think it should be. Whether to admit to the seriousness of the situation and spell out the patient’s possible future can become a therapeutic decision and be part of a methodology: information provision is seen as a tool in aid of therapy; it aims to create a situation in which patients take responsibility for their own health and accept the medical recommendations they are given. Conversely, when doctors perceive a patient’s future to be completely hopeless and there are no more therapeutic decisions to be made, they may still refuse to inform a patient of his/her diagnosis out of a conviction of the social futility of the statement.⁸ Others, on the other hand, think that the very absence of therapeutic considerations, when the patient’s behaviour will have no effect on their health status, means the patient should be informed so they can ‘organise themselves’ and ‘put their affairs in order’ before they die. In this case it is the social or therapeutic use of information that dictates behaviour concerning the disclosure of a diagnosis or prognosis.

The information that doctors give patients is extremely variable and concerns as much the diagnosis as the prognosis or the proposed treatments and their expected effects, adverse side-effects or risks. However, doctors most often identify the issue of information with that of disclosing the diagnosis. The direct link between these two issues is that revealing the truth is often judged to be too harsh, and that it is necessary to cod...