Introduction

The manner in which bad news is to be broken is determined by the attitudes of the attending physician as well as the patient and his/her family. This is a difficult task faced by health providers in different cultures worldwide. In Iran, where the culture and social thought are significantly different from many other countries, the problem takes on an added dimension, mainly because patients’ and physicians’ rights are imperfectly defined. There is no strict law whereby the patient must be informed of the diagnosis. Further, the patient’s relatives may ask the physician not to let the patient know about it. Therefore, not only the patient but also the patient’s family has the right to legally complain in this regard.

A study in China showed that around 30% of patients preferred to know nothing about the outcome and prognosis of their disease, while 90% wished to know only about their medical condition (1). Fifty per cent of the subjects wanted to know about their prognosis. Several investigations have shown an extremely wide range of differences among patients, physicians and families in this regard (2, 3). For instance, in a Chinese study of 382 cancer patients and 482 of their family members, it was found that the patients were much more keen to know about the nature of their disease than were the family members (4). More than 90% of the patients reported that they would like to know about their disease at an early stage; this percentage, however, decreased to 60 when it came to end stage. The patients also preferred it if their physician explained their condition to them directly. Less than 8% of the 195 referrals made to general hospitals in Taiwan over three days were not interested in getting any information on their disease, while 92% wanted even the details of their medical condition. It seems that the factors of age, career and education did not really influence the patients’ wish for information (1). Another study on 380 cancer cases and their 281 family members in Korea showed that more patients tended to know the details of their disease than their families (96.1% vs 76.9%). They also preferred that the attending physician should explain their condition to them. The main demand of 71.7% of the patients and 43.6% of the family members was that they should be informed immediately about the patient’s condition (5, 6).

Despite several studies on the patient’s right to be told of any serious diagnosis, such as cancer, there is, unfortunately, no policy on, or even concern about, this matter in Iran, especially when it comes to acute cases like acute myocardial infarction (MI). On the other hand, a section of the general population feels that the patient’s family and friends have an absolute right to be informed about the patient’s disease, rather than the patient himself/herself. With the aim of finding ways of strengthening trust between physician and patient, and also increasing the patient’s satisfaction, this study asked patients and their relatives about their ideas on being told about the diagnosis and which ways they considered suitable for disclosing this information.

Materials and methods

A cross-sectional study, carried out between 2012 and 2013 in two important educational sites of emergency medicine in Tehran, was used to ask all patients admitted and treated for suspected acute coronary syndrome (ACS) about their preferred way of being informed about their disease. After the patients were admitted and their diagnosis confirmed, the emergency medicine physicians prepared standardised and validated checklists for both the patients and their family members (first-degree relatives, including the parents, siblings, children and spouse).

The patients and their family members were interviewed separately in the private examination room of the emergency department. The people interviewed were not named in the checklists, and the patients’ answers were not shared with the family members and vice versa. Information on some demographic factors, such as the respondents’ age, sex, career and education, was also gathered.

Statistics

The sample size was estimated to be 87 patients on the consideration of a study power of 90% and p=0.06 (6% of patients believed that the diagnosis had to be explained to their family), d=0.05 and α=0.05 (7). Finally, 180 families and 288 patients were interviewed.

Mean and standard deviation, as well as median, frequency and percentages, were used to report the data.

The study was assessed and approved at the 134th meeting of the Research Ethics Committee, Shahid Beheshti University of Medical Sciences in March, 2013.

Results

A total of 280 patients suffering from coronary artery disease (CAD) and 180 family members of these patients were recruited for the study. Of the patients, 128 (45.7%) were men and the rest women. Of the patients’ family members, 113 (62.8%) were males and 67 (37%) were females. The mean age in the case of the patients was 59.88 years and in that of the family members, 41.66 years (Table 1). Two hundred and forty-nine (88.9%) of the patients and 144 (80%) of the family members felt that the diagnosis should be explained to them. We gave the respondents three choices as to who would be the best person to tell them about their diagnosis: the physician, nurse or family physician. Among the patients, 207 (73.9%) wished to be told about the diagnosis by their physicians, while the corresponding figure for the family group was 42.2%. As can be seen in Table 2, the majority of family members believed that the diagnosis should be disclosed gradually, while 87.9% of patients preferred to be informed immediately after the diagnosis was confirmed. Most family members were in favour of telling the patient about the diagnosis in their (family members’) presence. On the other hand, the majority of the patients preferred to hear of the diagnosis at their bedside (47.8% vs 48.9%).

As many as 44.8% of the patients believed that patients have the right to know their diagnosis. Eighty-five (34%) patients explained that being informed of the actual diagnosis helps patients to better plan their disease management.

People who were not in favour of having the patient be told about his/her diagnosis felt that doing so could increase the stress and emotional problems that the patient was going through, lower his/her quality of life, and make him/ her feel hopeless about the prospect of improvement (58.7 of patients and 91.7 of family members). Most patients who preferred to be informed by the physician in person, felt that it was the physician’s duty to do so. Tables 2 and 3 present the results in detail.

Discussion

The preferred ways of getting information on one’s medical condition differ from culture to culture. This study on CAD cases revealed that most patients and families like to know the diagnosis of the patient. However, one-fifth of people are not in favour of knowing their diagnosis because they feel that this will add to their emotional stress and diminish their hopes of recovery. A contrast is provided by China, where some studies have shown that those who are told about their medical condition become more hopeful about their recovery (8, 9).

In 2010, O’Hara drew attention to the patient’s right to know about the methods employed in, and the purpose and results of the clinical examination, laboratory studies and related activities (8, (9). People are usually worried about their medical condition and feel anxious about their diagnosis and prognosis. They are also concerned about whether there is a need for paraclinical and laboratory evaluation. Some authorities have come across people who demanded additional information even after being provided with a clear diagnosis based on cancer screening..

Tsuboi et al. showed that interaction between health providers (including physicians), on the one hand, and patients and their family members, on the other, could achieve the outcome peacefully (11). In the case of a patient in his forties in an advanced stage of cancer, daily visits to explain the situation and laboratory results to the patient and his family seemed to help the family cope with the ordeal, and finally come to terms with the patient’s death.

Nagura et al attempted to explore the feelings of elderly patients and their families regarding the patient’s disease, and concluded that if patients are informed of the terminal nature of their disease, they are less likely to have false expectations (12). As rightly pointed out by Schreiber in 1988, “neither rigorous truth at any cost, nor the principle of concealment of the hopelessness for (sic) the patient’s condition is correct” (13). It is globally accepted that one needs to strike a balance between these two extremes, considering the emotional state of the patient and the family (13, 14).

In a study carried out by Habeck et al in Germany, it was found that 77.7% of the 1043 respondents wished to know the causes of their complaints, whilst 66.4% were in favour of knowing the prognosis (15). The majority of the respondents preferred that their family doctor explain their case to them, rather than their going through the report themselves. Around 90% of those who participated in this study wanted to be fully informed about their condition.

In conclusion, while it may be difficult to explain the truth completely in some societies and cultures, the findings show that there is a general tendency among patients and their families to wish to be told about the patient’s condition, particularly by the attending physician. When considering disclosure of the patient’s condition, it would enhance the patient’s and his/her family’s emotional well-being if the physician tried to maintain a balance between what might make them feel hopeful and hopeless.