"Secrets and lies": (not) telling bad news in italian oncology

• Author: Marco Marzano
• Position: University of Bergamo
• Pages: 22-31

Page 22

In Italy, as probably happens in other countries of the world (Seale et al. 1997; Elwyn et al. 1998; Seale 1998; Field and Copp 1999), people who are about to die in hospital are not usually informed about the fate awaiting them. To use Glaser and Strauss's expression, a context of "closed awareness" prevails. In Italy, this attitude has remained intact over time despite the extraordinary changes which have taken place in clinical techniques and therapies, and despite the spread of hospices and palliative care wards. The policy of ,not telling' has been adjusted to the new circumstances.

In this paper I shall describe the strategies adopted by Italian oncologists to prevent the dying from knowing their fate, the exceptions to this rule, and some of the structural and organizational factors which make changing the situation difficult.

The discussion conducted in this paper is based on a year of ethnographic observation of social interactions at an oncological ward of a large hospital in northern Italy and on dozens of interviews carried out by the author in the same place in the same period.

For the good of the patient: the truth concealed by Italian oncologists.

When faced by a patient afflicted with an incurable tumour, Italian oncologists generally choose to lie about the prognosis (but not always about the diagnosis). This, of course, is a ,morally legitimate' lie, in the sense that according to the oncologists it is an untruth intended to protect patients, to insulate them against the terrible truth of their imminent death [Gordon 1990; Surbone 1992; Gordon and Paci 1997, Campione 2004]. This behaviour is justified by the so-called benevolence principle, according to which doctors have some sort of mandate deriving from the fact that patients have placed their trust in them [Pellegrino 1992; Pellegrino,Page 23Mazzarella and Corsi 1992; Beauchamp and Childress 1994; Engelhardt 1996]. This principle purportedly requires doctors to work for what they believe is the good of patients, or indeed in consideration of health and life itself (or of their duration) as goods in themselves not freely and immediately available to persons. The patient thus enters the state which Glaser and Strauss [1965] called ,closed awareness'.

The strategy of concealing the truth from patients is made feasible because many people do not recognize (or they remove) the signs of their imminent death, or they simply do not feel authorized to talk about them with a doctor. Whatever the case may be, for the strategy to be successful, secrecy must be strict maintained, and a so-called "conspiracy of silence" must be activated [Ariès 1991].

For this reason, all available forces must be immediately enlisted. The first actors to be involved in the conspiracy are relatives and friends: in short, those people closest to the patient and who are able to filter and control the flow of information about the illness. Unlike the patient, these people are rapidly and expressly informed of the diagnosis and the prognosis. In many cases, it is they who activate the conspiracy by beseeching the doctor not to reveal the dramatic nature of the prognosis to their loved one.

In this regard, also an ability to lie - or, better, to "pay lip service" - may prove useful. An oncology intern told me how useful he had found his experience as a waiter in Brussels, where he had learned how to communicate with people and give them "that feeling of warmth and affection which allows a human relationship to be established", greeting them by looking them in the eye, inviting them to sit down, then asking about their jobs, and finally joking and laughing with them.

The decision not to reveal the truth holds firm even when patients explicitly ask for information. In these cases, the replies are evasive, or they concentrate on aspects and particular details of the therapy, or on secondary symptoms. This induces the patient to think that if the doctor is concentrating on these relatively minor problems, the situation cannot be so serious [McIntosh 1977]. The same function is performed by the witticisms of doctors (in these cases, patient tell themselves, "if the doctor dares to make jokes, it must mean that I am not so badly off"). Doctors often respond to more specific requests for information - for instance, whether the illness will have disabling consequences - with probabilistic paradoxes of the type "there's more chance of me dying of a heart attack in two years' time than of you becoming a paraplegic".

A door may be left open to justify future deterioration in the patient with expressions like "We're working as hard as we can to get the best results, but you know ... it's very difficult. Let's hope we succeed", or by pointing out the dangers of not taking therapeutic action ("Of course, if you stopped the chemotherapy, the consequences would be unpredictable").

In any case, the strength of the 'no tell' policy - Glaser and Strauss (1965) again point out - resides in the large-scale deployment of resources (those of the doctors, nurses, family, etc.) against one man - the patient - or in the fact that the medical staff and family join together as a team against a single individual weakened by disease. The weakness of policy resides in the instability of the structural conditions i.e. in the difficulty of maintaining it unchanged over time.

The main advantage gained by the hospital from restricting the patient's decision-making capacity is control over a potential source of environmentalPage 24turbulence which might disrupt the organization's routine. The greatest costs are aggression by patients made anxious by the uncertainty of their fates, and the amount of resources that must be deployed to keep patients ignorant. Maintaining patients in a psychological state of ,closed awareness' inevitably involves construction for them of a ,fictitious' future where, upon conclusion of the treatment, they will resume their normal lives. In the meantime, however, there arise events and circumstances which contradict that scenario. The first is the persistence of (indeed, in many cases, an increase in) the painful symptoms signalling the disease's progress. The second is hospitalization. Once in the hospital ward, the patient makes the terrible discovery that he is surrounded by others subject to devastating cycles of high-dose therapy or awaiting the death that often occurs in hospital. Dreadful questions now begin to preoccupy the patient: "Am I also one of these dead men walking? One of these temporary survivors?". Whence derives the necessity for the doctors to dispel these ,harmful imaginings' with constant and increasingly difficult creative effort.

Doctors justify the choice of this communicative strategy by saying that they do not want to inflict, with gratuitous cruelty, further suffering which would make the life left to the patient unbearable. Or, more rarely, they cite one or two cases where disclosure of the...