In recent decades, medical articles and authorities have increasingly emphasised the need to observe patients’ right to autonomy. Respecting this ethical principle—that is, respecting patients’ right to make decisions about their treatment—has led to the replacement of the traditional physician-centred doctor–patient relationships with a more patient-centred one.

Several studies have shown that physicians tend to underestimate patients’ desire to receive information1 2 and that patients strongly prefer to receive information and participate in decision-making. Butow and colleagues found that 85% of cancer patients wished to obtain detailed information about their condition and 58.9% wanted to have an active role in independent or joint decision-making.3 Mazur and colleagues found that 93.4% of their patient population wished to receive information concerning the risks of their treatment and 68% wanted to share in decision-making.4

The effect of factors such as age,4 5 gender3 6 7 and education 4 5 7 on patients’ desire for information and decision-making has been shown consistently in several studies. In addition, the severity of illness1 3 can affect patients’ attitudes towards decision-making. Culture may also play a role in this scenario,8 which is usually used as an excuse by Iranian doctors for depriving patients of medical information and their right to participate in medical decision-making.

The patient–physician relationship in Iran is rather paternalistic, and physicians usually do not provide sufficient information for patients to make decisions or give them the opportunity for informed participation. Physicians in Iran generally believe that patients cannot understand such information and that providing complicated medical facts either is useless or can cause concern and confusion. In Iran, as in many other Asian countries,9 hiding bad news from patients is an accepted policy,10 and most medical decisions are made by consulting their families.

The main purpose of this study was to evaluate Iranian patients’ attitude toward receiving information and participating in medical decision-making. In addition, we tried to identify their satisfaction with the present information delivery strategies and opportunities to participate in decision-making, and whether patients’ companions concur with patients’ opinions about receiving information.

METHODS

Patients hospitalised in a general internal medicine ward and four general surgical wards of Imam Khomeini Hospital Complex, Tehran University of Medical Sciences, were selected as the study sample. Data were collected by interviewer through questionnaires. We used a visual analogue scale (VAS) to measure patients’ desire and satisfaction, because this method is relatively easy to use and understand, particularly by less educated and illiterate subjects. Our VAS covered a 10-grade spectrum of red, from light (1), which means “I have no desire/satisfaction” to dark (10), which means “I am highly desirous/very satisfied” on a scale with 1.5 cm increments. Box 1 shows the graded questions with VAS.

These questions were adapted according to the type of procedure performed (diagnostic, therapeutic or both). For example, when only diagnostic procedures were performed, all questions contained the term “treatment procedure”, and the term “diagnostic procedure” was not used. The content validity of the questionnaire was checked by the authors of the study and was tested with 10 pilot cases before the study started, and the questionnaire was then revised based on patients’ perception of the questions. In addition, necessary clarifications for each question and a guideline on how to complete the questionnaire were written out and given to the interviewer. The interviewer was selected from medical interns who could speak Azari, so that Azari-speaking patients would not be excluded. After the questionnaire had been finalised, data were collected from the aforementioned wards from May to December 2006. According to the original proposal, patients were supposed to be interviewed just before discharge. However, patients and their companions proved to be very preoccupied at that time, and so they were enrolled at any stage of hospitalisation. Patients with mild to severe pain or cognitive disorders were excluded from the study, because it would probably be difficult for them to participate or the answers would not be reliable. The judgement was left to the interviewer. The study was carried out after the protocol had been reviewed and approved by the Tehran University of Medical Sciences ethics committee (institutional review board).

As expected, histograms presenting the variables assessed by VAS did not show normal distributions; therefore, their means in paired or non-paired groups were compared using the nonparametric Mann–Whitney, Wilcoxon and Kruskal–Wallis tests. Pearson correlation and linear regression tests were used to assess the relationships among the studied variables using a VAS and other numerical variables. Results are presented as means (SD).

RESULTS

Of the 312 patients eligible to enter the study, 299 agreed to participate (response rate 96%). Their mean age was 39.2 (14.9) years and their average education was 7.8 (4.8) years. Table 1 summarises patients’ demographics.

Patients’ responses were categorised in three groups: low scores (1–3), intermediate (4–7) and high (8–10). Tables 2 and 3 show scores and percentages, respectively, of patients according to degree of their desire to obtain information and participate in medical decision-making.

Desire to receive information

We found internal consistency among scores concerning patients’ desire for different kinds of information about their disease, with a Cronbach α of 0.64. In descending order, patients mostly desired to know (1) the diagnosis, (2) advantages and disadvantages of different diagnostic or therapeutics options, (3) the consequences of receiving no treatment, and (4) the various diagnosis or treatment options, none of which differed significantly from each other except (1) and (4). About 61.5% of these patients graded their wish to obtain information regarding all four fields high, and another 19.8% were highly desirous of receiving three of the four.

The mean score assigned to these four questions—8.88 (SD1.5) out of 10—was considered to represent their preference for information. It had no significant correlation with age or marital status. Also, the desire to receive information was not correlated with the type of procedure (diagnosis, treatment, or diagnosis and treatment) or where the patients were hospitalised (internal medicine or surgery ward).

Women were more eager for information than men (9.0 (1.5) vs 8.7 (1.4); p = 0.025). The level of education was also significantly correlated with such desire (r = 0.2, p = 0.001). Results showed that the higher the patients’ perceived severity of illness, the greater their desire to acquire information (r = 0.13, p = 0.027). In the multivariate model, only the variables of perceived severity (β = 0.068, p = 0.022) and education (β = 0.061, p = 0.001) were entered. Overall, these two variables are predictive of only 5% of differences in the desire for information.

Desire to participate in decision-making

Patients’ desire to participate in decision-making was significantly correlated with that to obtain information (r = 0.14, p = 0.016). Although the patients’ desire to participate in decision-making was significantly lower than their desire for information (p<0.001), the degree of opportunity provided to participate in decision-making was low (table 2). The patients did not all have the same idea about how much opportunity for involvement is good enough, so their responses were based on their expectations: 44.5% of respondents evaluated the degree of opportunity for involvement provided as low, and 26.4% and 29.1% evaluated it as medium and high, respectively. Patients’ satisfaction with their degree of involvement was lower than their satisfaction with information (p<0.001).

There was a significant gender difference regarding the desire to be included in the decision-making process (p = 0.024); the mean score was 7.95 (2.8) in women and 7.0 (3.2) in men. This desire was inversely correlated with education (r = −0.14, p = 0.015) but was not correlated with other demographics such as age, disease severity, marital status, ward of hospitalisation or type of procedure performed. In the multivariate model, the variables of gender, education (β = −0.09, p = 0.015) and desire for information (β = 0.33, p = 0.004) were entered. Overall, these variables were predictive of only 6.5% of changes in the desire to participate in decision-making.

Patients’ desire to participate in decision-making was significantly correlated with the degree to which their physicians had involved them in this process and also their satisfaction with the degree of being involved in decision-making; the Pearson correlations were 0.26 (p<0.001) and 0.18 (p = 0.001), respectively. It means that patients who were more eager to participate were more involved by their physicians and more satisfied with their participation.

Satisfaction

Table 4 summarises patients’ satisfaction with the received information and participation in decision-making. The data did not show any relationship between the patients’ desire for information and their satisfaction with the information received. The latter was not related to any of the patients’ demographics except education (r = −0.14, p = 0.012) and gender (6.8 (3.1) in men and 7.5 (3.0) in women, p = 0.039). In the multivariate model, only gender remained. In other words, women were more satisfied with the information they had received about their disease than men; however, gender was predictive of only 3% of differences in patients’ level of satisfaction.

Patients were more satisfied with their participation in decision-making when their physicians gave them a better opportunity to be involved (r = 0.73, p<0.001). This satisfaction was only significantly correlated with their level of education (r = −0.16, p = 0.004). In the multivariate model, the only correlated variable was the opportunity to be involved (β = 0.61, p<0.001), which accounted for 46% of changes in patients’ satisfaction with their participation in decision-making.

Companions’ participation and perception

A strong desire for companions to be given information was expressed by 65.4% of patients, while 16.8% showed very little or no such desire. This desire was significantly higher in married patients than in single ones (8.1 (3.0) vs 6.6 (3.6), p<0.001), was inversely correlated with their level of education (r = −0.17, p = 0.002) and was significantly correlated with age (r = 0.12, p = 0.038). Patients who estimated the severity of their disease as higher were more likely to have their companions informed (r = 0.16, p = 0.005). In the multivariate model for this desire, age was eliminated, but marital status, patient perception of disease severity (β = 0.13) and education (β = 0.09) remained.

The closest companions who were most informed of the patients’ condition were asked whether patients should receive information (n = 116); 76.7% completely agreed, while 12% disagreed. Nine (9.1%) of all patients wished very much to obtain information but their companions were reluctant that they should do so. There was no significant correlation between the companions’ desire for the patients to receive information and severity of disease, patients’ age or patients’ relationship with the companion, nor was this desire correlated with the patients’ desire for information (p = 0.13).

DISCUSSION

Results of this study showed that the patients strongly desire to receive information and participate in decision-making, although their desire for information was less than for participation. These finding are similar to those from other studies.4 11 12

Stiggelbout and colleagues stated that healthy people tend to participate in decision-making more than the ill:13 in other words, people somehow lose their enthusiasm for medical decision-making when they become ill. On the contrary, our study showed that those who overestimate the severity of their disease are more willing to gain information. This is probably because they are more concerned about their condition.

According to this study, women are more in favour of autonomy and participation in decision-making. This finding is also in agreement the findings of other studies.3 6 7 Other studies have found a significant direct relationship between willingness to participate in decision-making and the level of education,4 5 7 while we found a weak inverse one. This difference can be attributed to the narrow range of education among the participants of this study. Overall, these variables were predictive of only 6.5% of differences in the desire to participate in decision-making. Also, in other studies, related variables predicted less than 20% of changes in the desire to participate in decision-making.8 13

Our results show that although patients would rather obtain information than be significantly involved in the decision-making process, their expectations of involvement were not adequately met and their satisfaction with their involvement was significantly lower than their satisfaction with the provision of information. This result shows that the gap in providing involvement is bigger than that in providing information.

In a study in Tehran teaching hospitals, 41% of patients were satisfied with the information they had received.14 The corresponding value in the present study was 56%, which is still not acceptable.

We have found that Iranian patients wish their companions to have a prominent role in receiving information concerning their condition, although one-sixth were reluctant to share such information with their companions. These reluctant patients were mostly single, were more educated and underestimated the severity of their disease. We found that companions’ opinion was not a suitable predictor of patients’ desire to receive information and patients had to be asked directly whether they wished to hear the news themselves or preferred that someone else receive the information and make decisions for them.

Until the 1970s, physicians were the sole persons making decisions for their patients,15 and patient consent to medical care was doctor-centred. In recent decades, however, respect for patients’ right to autonomy has been increasingly emphasised. Several factors have contributed to this change: concern with patients’ rights, commercialisation of medicine (ie the patient is the client and the physician is the medical care provider), increasing patient access to medical knowledge and information, increased prevalence of chronic diseases with no definitive cure and increased popularity of complementary medicine.16

Although medical research encourages physicians to base their practice on scientific evidence, the effectiveness of treatment greatly depends on patients’ preferences, which are usually affected by other aspects of their lives. Patients dissatisfied with their patient–physician relationships are less likely to follow their physicians’ recommendations. Nowadays, it is believed that evidence-based medicine can be effective only when combined with patient-based medicine where their needs, values, beliefs, concerns and fears are considered.16

Studies indicate that several non-medical factors affect clinical decision-making. In addition, physicians may have a different view of the outcomes of various treatment plans than patients do.17 Therefore, patients’ participation in clinical decision-making is necessary for achieving better results.

Patients have the right to be informed about their health and to make choices based on their values and other economic, social, cultural and familial factors, which may be unknown to the physician or may be prioritised differently. Observing this right will lead to more patient satisfaction even if patients do not use it and leave all decisions to their physicians.8

One of the most important limitations of this study is that we cannot generalise the findings. Although patients in the Imam Khomeini Hospital are not limited to citizens of Tehran and many are referred from other cities, their socioeconomic range probably limits the generalisability of our results. Most patients admitted at this hospital are of low socioeconomic status, and people of higher status may be more willing to receive information and participate in decision-making. So we may be underestimating Iranian patients’ desire for autonomy.

Since it is not common in Iran to ask patients’ view about autonomy in medical decision-making, in this study we changed related questions to address their desire to “participate” in decision-making, to make the questions more understandable and receive more reliable responses. In this regard, patients’ high desire to participate in decision-making does not necessarily imply that they are willing to make decisions independently.

Interventional studies are needed to evaluate how providing information and involving patients in decision-making can affect the healthcare outcome or patient satisfaction. Such studies can determine the cost-effectiveness of promoting positive attitudes towards this trend.

CONCLUSION

We found that patients would like to receive information concerning their health and be involved in decision-making processes. However, like other, similar studies, no demographic predictive factor for such a desire was found; even the opinions of patients’ companions were not a suitable predictor of patients’ desire to receive information. Therefore, the only way for physicians to learn their patients’ attitude is to ask them openly and directly. It is necessary to inquire about patients’ desire to obtain information and how much information they would like to receive, and to involve them in the decision-making process.