Delivering Bad News to Patients: Survey of Physicians, Patients, and Their Family Members’ Attitudes

AUTHORS

Amir Bazrafshan 1 , * , Asma Zendehbad 2 , Seyed Ali Enjoo ORCID 3

1 Substance Abuse and Mental Health Research Center, Shiraz university of Medical Sciences, Shiraz, Iran

2 Shiraz University of Medical Sciences, Shiraz, Iran

3 Medical Ethics Department, School of Traditional Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran

How to Cite: Bazrafshan A, Zendehbad A, Enjoo S A . Delivering Bad News to Patients: Survey of Physicians, Patients, and Their Family Members’ Attitudes. Shiraz E-Med J.In Press(In Press):e109016. doi: 10.5812/semj.109016.

ARTICLE INFORMATION

Shiraz E-Medical Journal: In Press (In Press); e109016
Published Online: September 14, 2021
Article Type: Research Article
Received: September 4, 2020
Revised: June 21, 2021
Accepted: July 30, 2021
Uncorrected Proof scheduled for 23 (1)
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Abstract

Background: Breaking bad news to patients is an unpleasant process, but it is essential for the medical team, which is giving information about a person’s illness; without proper planning, it leads to a negative impact on people’s feelings and quality of life. Cultural differences can be effective in telling bad news.

Objectives: This study aimed to identify the attitudes of physicians, patients, and patients’ families towards breaking bad medical news.

Methods: This cross-sectional study was performed among physicians, patients, and their families referred to Namazi Hospital, Shiraz, Iran, during 2016 - 2017. Their attitudes regarding how to tell bad news were evaluated by self-administrated questionnaires.

Results: A total of 397 valid questionnaires completed by physicians, patients, and their families were analyzed in this study. All groups of participants preferred telling bad news to patients about the diagnosis of their disease; they also believed that in the case of a patient’s dissatisfaction, this information should not be given to other family members. Patients’ family members would rather tell lies to the patient about their diagnosis.

Conclusions: There is a tendency towards not telling bad news in Iranian culture; Iranian people tend to protect those around them, and the desire to give bad news to those around them is lower than the tendency to hear bad news about one’s own illness. With increasing education, the tendency to telling bad news increases.

1. Background

Giving bad news to patients is always a challenging and unpleasant process, but it is essential for the medical team (1). The meaning of bad news in medicine is giving information about a person’s illness that leads to a negative impact on the feeling, quality of life, and beliefs of patients and their families (2). Several studies have reported a lack of skill in giving bad news to patients among physicians (3). Delivering bad news without proper planning can lead to psychological damage and resentment in the recipient, but proper expression is acceptable by patients and their families (4, 5). Another significant issue related to bad news is truth-telling, which gives the patients a choice to make a conscious decision about the illness and continuation of treatment. Therefore, in different cultures, patients’ independence for knowing about the disease and choosing the treatment method, as well as telling or not telling the truth about the disease is different (6, 7). In Western countries, most doctors disclose the truth to patients, but in Asian countries, families play a key role in decision making for patients (8). Until 1961, most people in the United States did not want to hear any bad news about their illness, but this gradually changed so much that as of 1979 most people wanted to know the truth about their illness, even if it involved bad news (9). In the American culture, most patients want to know the truth, but some doctors are concerned about the patient’s emotional reactions (10).

In the developed countries, protocols have become more clarified, and it is almost entirely clear who should know the information and what should be mentioned (11-14). In these countries, patients request more detailed information (15). In some developing countries, there are questions about whether the father should know the bad news of the child’s illness or the mother. It is emphasized that both have the right to hear the news, and it is recommended that both receive the bad news together (16). Although Iranian physicians and nurses have a tendency to break the diagnosis to the patients, especially in older and expert professionals (17), Iranian families are often reluctant to reveal the truth and request the medical team to hide the truth from their patients, to protect them. However, most patients would like to be notified about their diagnosis by physicians (18). Some recommend that breaking bad news should be integrated in the Iranian medical education curriculum (19). Others suggest that guidelines should be developed based on the regional culture (20).

2. Objectives

Considering the prominence of this issue, physicians must be aware of the attitude of Iranian people about telling bad news, and till now, there is not a standardized protocol for telling bad news in Iranian culture. Because of the lack of studies about attitudes of Iranian people about giving bad news in Iran, this study was designed to compare three important groups’ attitudes, including patients, physicians, and patients’ families, about this issue.

3. Methods

This cross-sectional study was done in the surgical and internal ward of Namazi Hospital, Shiraz, Iran, in 2016. The studied population consisted of physicians, patients, and their families. All participants were fully informed of the goal and the process of the study, and they were assured of the researchers’ commitment to the confidentiality of their responses. Those who volunteered to join the research were included. The inclusion criteria for each category were different. We included patients hospitalized in surgical and internal wards, family members accompanying their patients, and internal and surgery ward physicians, including the faculty members and residents who were clinically present, had professional and daily contact with patients, and were decision makers for telling bad news. Exclusion criteria were lack of willingness to participate, mental disorders, inappropriate physical condition of patients, and inability to talk and communicate.

The research instrument was a self-administered questionnaire designed to elicit information on physicians, patients, and their families’ points of view about breaking bad news. The questionnaire consisted of two parts. The first part included five demographic questions on age, gender, job, educational degree, marital status, and family relationship. The second part included five questions on breaking bad news. Questions 1 - 4 were rated based on a 5-point Likert scale (5 for strongly agree, 4 for agree, 3 for neutral, 2 for disagree, and 1 for strongly disagree). The question no.: 5 of the second part of questionnaire asked about the proper person to whom the bad news should be delivered, which was a multiple choice question.

To examine the content validity of every sentence and phrase of the questionnaire, the draft was given to a panel of experts, which consisted of two psychiatrists, a psychologist, a medical ethicist, and an oncologist. The process of taking the comments and sending them back to the peer checkers was repeated several times to achieve consensus; this lasted for two weeks. Peers were asked to comment on the simplicity, clarity, relevancy, importance, and necessity of each word; they were asked to omit problematic words and phrases. After modifications, the final questionnaire was prepared. According to the pilot test, the test-retest study was performed among 80 subjects, and a Cronbach’s Alpha coefficient of 0.88 was obtained. A sample size of 414 was estimated using Medcalc software (r = 0.3, Alpha = 0.05, beta = 0.05, power = 0.95). One of the authors (AZ) attended the target hospital wards and filled out the questionnaire till the adequate sample size; the participants were selected by using the convenience sampling method.

The data were analyzed using SPSS version 21. Descriptive statistics were used to explain the pattern of the data. Also, Pearson and Spearman correlation coefficients were applied to investigate the relationship between the variables. Normality was examined using Kolmogorov Smirnov test. A P-value of less than 0.05 was considered significant. This study was approved by the Research Ethics Committee of Shiraz University of Medical Sciences (ethical code: IR.SUMS.MED.REC.1396.26).

4. Results

Overall, 133 physicians, 138 patients, and 126 patient family members participated in this study. Nearly 61% of physicians were internists, and 51.1% (n = 68) were male and 48.9% (n = 65) were female. Physician participants’ age ranged from 20 to 40 years old. In the patient group, 45.7% (n = 63) were male, and 54.3% (n = 75) were female; and in the patients’ families both genders were equal. Patients and their families mostly had a high school degree (Table 1).

Table 1. Demographic Characteristics of the Respondents
VariablePhysiciansPatientsPatient Family Members
InternistSurgical
Number of cases81 (20.4)52 (13)138 (34.7)126 (25.7)
Age
20 - 3053 (39.8)41 (29.7)33 (26.2)
30 - 4054 (40.6)35 (25.4)47 (37.3)
40 - 5020 (15)18 (13)23 (18.3)
50 - 606 (4.5)20 (14.5)5 (4)
> 60024 (17.4)18 (14.3)
Gender
Male68 (51.1)63 (45.7)63 (50)
Female65 (48.9)75 (54.3)63 (50)
Educational degree
High school-51 (37)45 (35.7)
Diploma-47 (34.1)35 (27.8)
Bachelor of science-33 (23.9)41 (32.5)
Master of science-5 (3.6)5 (4)
PhD133 (100)2 (1.4)0
Job
Self-employee-112 (81.2)97 (77)
Employee-26 (18.8)29 (23)
Place of living
Aruban133 (100)114 (82.6)90 (71.4)
Rural024 (17.4)36 (28.6)
Family relationship
Sister--9 (7.1)
Brother--11 (8.7)
Mother--8 (6.3)
Father--12 (9.5)
Child--44 (34.9)
Spouse--18 (14.3)
Others-24 (19)
Marital status
Single49 (36.8)32 (23.2)36 (28.6)
Married84 (63.2)104 (75.4)88 (69.8)
Divorced02 (1.4)2 (1.6)

Table 2 shows the attitude of the physicians, patients, and their families about breaking bad news. In questions 1 - 3 (q1: If you have cancer, do you prefer to be aware of it), (q2: If one of your family members has cancer, do you prefer to let him or her know about it), and (q3 in case of patient dissatisfaction, information should not be given to the patients’ family), most physicians, patients, and their families completely agreed or agreed.

Table 2. Physicians, Patients, and Their Family’s Attitude Toward Breaking Bad News
Quastion1 - 5Completely DisagreeDisagreeNeutralAgreeCompletely Agree
Q1: If you have cancer, you would prefer to be aware.
Physician2 (1.5)4 (1.5)3 (2.3)42 (31.6)82 (61.7)
Patients2 (1.4)9 (6.5)12 (8.7)73 (52.9)42 (30.4)
Patient family members3 (2.4)3 (2.4)16 (12.7)51 (40.5)53 (42.1)
Q2: If one of your family members has cancer, you prefer to let him or her know
Physicians1 (0.8)9 (6.8)18 (13.5)64 (48.1)41 (30.8)
Patients8 (5.8)34 (24.6)25 (18.1)48 (34.8)23 (16.7)
Patient family members10 (7.9)35 (27.8)25 (19.8)44 (34.9)12 (9.5)
Q3: In case of patient dissatisfaction, information should not be given to patient’s family.
Physicians1 (0.8)6 (4.5)3 (2.3)45 (33.8)78 (58.6)
Patients20 (14.5)18 (13)11 (8)49 (35.5)40 (29)
Patient family members24 (19)24 (19)17 (13.5)34 (27)27 (21.4)
Q4: If the disease is dangerous, the patient should be lied to
Physicians106 (79.7)21 (15.8)1 (0.8)3 (2.3)2 (1.5)
Patients48 (34.8)32 (23.2)16 (11.6)17 (12.3)25 (18.1)
Patient family members29 (23)31 (24.6)12 (9.5)14 (11.1)40 (31.7)
PatientsHis/Her FamilyFriendsNo OneNot Matter
Q5: who will be informed about the disease sooner?
Physicians120 (90.2)13 (9.8)000
Patients76 (55.1)43 (31.2)4 (2.9)8 (5.8)7 (5.1)
Patient family members58 (46)50 (39.7)5 (4)11 (8.7)2 (1.6)

In addition, 95.5% of the physicians and 58% of the patients completely disagreed and disagreed with telling lies to a patient about his/her disease, while 42.8% of the patients’ families completely agreed and agreed with telling lies to a patient about his/her disease. Also, 47.6% of them strongly disagreed and disagreed with telling lies to the patient. The respondents (physicians: 90.2%, patients: 55.1%, patients’ families: 46%) agreed that patients should be informed about the disease as soon as possible.

Several demographic features of the respondents were associated with the items of the questionnaire (Table 3). For instance, there was a significant relationship between the gender of the participants and question 1 (P = 0.04; If you have cancer, you would prefer to be aware), and a significant relationship existed between the living area and question 3 (P = 0.04; in case of patient dissatisfaction, information should not be given to the patient’s family). The place of residence was also related to the type of answer to question 5 (P < 0.001; who will be informed about the disease sooner?). Table 4 shows that despite educational degrees (P < 0.001), age categories only had a relationship with question 4 (P < 0.001; If the disease is dangerous, the patient should be lied to).

Table 3. The Relationship Between Questions and Group, Gender, and Living Area
GroupP-ValueGenderP-ValueLiving AreaP-Value
PhysicianPatientPatient’s FamilyMaleFemaleUrbanRural
Q1: If you have cancer, do you prefer to be aware of it≤ 0.0010.04-a
Completely disagree2232552
Disagree49388142
Neutral312161417238
Agree427351699714224
Completely agree8242531017615324
Q2: If one of your family members has cancer, do you prefer to let him or her know about it0.0220.4-a
Completely disagree1810145136
Disagree9343530486315
Neutral18252535335513
Agree644844797713917
Completely agree4123123640679
Q3 In case of patient dissatisfaction, information should not be given to patient’s family.0.0010.170.04
Completely disagree1202426193213
Disagree61824939399
Neutral311171417247
Agree454934656310721
Completely agree784027806513510
Q4: If the disease is dangerous, the patient should be lied to< 0.0010.160.5
Completely disagree1064829849916716
Disagree2132314638768
Neutral116121613227
Agree317142014259
Completely agree2254028394720
Q5 who will be informed about the disease sooner?< 0.0010.18< 0.001
Patient1207612612812832
His/her relatives134346608613
Friends043663
No one08136910
Patient076372
His/her Relatives1207612612812832

aCannot be computed because the asymptotic standard error equals zero.

Table 4. The Relationship Between Questions 1 - 5 and Age and Educational Level
GroupP-ValueGenderP-Value PatientLiving AreaP-Value
PhysicianPatientPatient’s FamilyMaleFemaleUrbanRural
Q1: If you have cancer, do you prefer to be aware of it≤ 0.0010.04
Completely disagree2232552-a
Disagree49388142
Neutral312161417238
Agree427351699714224
Completely agree8242531017615324
Q2: If one of your family members has cancer, do you prefer to let him or her know about it0.0220.4-a
Completely disagree1810145136
Disagree9343530486315
Neutral18252535335513
Agree644844797713917
Completely agree4123123640679
Q3 In case of patient dissatisfaction, information should not be given to patient’s family.0.0010.170.04
Completely disagree1202426193213
Disagree61824939399
Neutral311171417247
Agree454934656310721
Completely agree784027806513510
Q4: If the disease is dangerous, the patient should be lied to0.0010.160.5
Completely disagree1064829849916716
Disagree2132314638768
Neutral116121613227
Agree317142014259
Completely agree2254028394720
Q5 who will be informed about the disease sooner?0.0010.18< 0.001
Patient1207612612812832
His/her relatives134346608613
Friends043663
No one08136910
Patient076372
His/her relatives1207612612812832

aCannot be computed because the asymptotic standard error equals zero.

Regarding the first question, “would you like to be notified if you have cancer?”, the results revealed that the majority of physicians, patients, and patient families preferred to be informed in case they have a disease. And only 3% of physicians, 4.8% of patient families, and 7.9% of patients did not want to be informed.

5. Discussion

Due to cultural disparities and differences in people’s desire to hear bad medical news related to diagnosis and treatment, this cross-sectional study surveyed the views of three groups, including patients, physicians, and patient family members, regarding bad news. The study was an attempt to show the Iranian cultural differences in breaking bad medical news. As seen in the results, among 141 physicians who were predominantly medical and surgical residents (52 surgeons versus 89 internists), 61% completely agreed (the Likert choice no.: 5) to know if they had cancer; however, the majority of patients (lower than the physicians; 48.4%) chose the Likert choice no.: 4, and 42.2% of the patient family members completely agreed with it (the Likert choice no.: 5). It is likely that in Iranian culture, as we saw in this study, the tendency to receive bad medical news is higher among physicians than in patient family members, and it is lower among the patients; however, still most patients agreed to know the bad news.

The majority of participants, however, agreed to receive bad news; this indicates that, like other cultures, there is a tendency to be informed about the disease in Iranian culture (9, 10). In most studies of delivering bad news to patients, results were similar to those of our study (21, 22). In Shahidi’s study, respecting patient rights and being aware of the issues related to the disease have been proposed as an imperative rule, which would indicate respect to the patient’s autonomy (23). Other studies focused not only on the telling or not, but also on the way of breaking bad news; for example, face-to-face or through the phone, clarity of the message, attention to patient privacy when delivering the information, empathetic caring attitude, and adequate time spent to break the news (24). The tendency of the Japanese population in some situations differed from the American population; some Japanese wanted to break the bad news to their families, while Americans wished to know the bad news themselves (25-27).

Regarding the second question, “If one of your family members has cancer, do you prefer to let him or her know about it?”, the majority of the three groups wanted the patient to be informed of the illness, but in all the three groups, the desire to inform decreased compared to the first question. Besides, 7.6% of physicians, 35.7% of patient family members, and 30.4% of patients, despite their willingness to be aware of their illness, did not want their relatives to know about their illness. In other words, although all the three groups wanted to be informed about their disease, this tendency for their relatives was lower. This may indicate that Iranian culture is supportive and unwilling to expose the relatives to stress. In this case, physicians were more inclined to inform the patient, which could be due to their previous encounter with such issues. Our finding is in the same line with those of Jiang’s study in China, indicating that cancer patients were more likely than their families to believe that patients should be informed of the diagnosis (28); some other previous studies in Iran had shown that about half of Iranian patients were not informed about their diagnosis and disease (29).

Regarding the third question, only 5.3% of the physicians agreed that if the patient is not satisfied, the patient’s family should be informed. While 38% of the patient family members and 27.5% of the patients agreed that even if the patient is not satisfied, the people around should be informed. This can also indicate the unwillingness of Iranians to expose patients to stress. It also shows that respect for the patient’s desire to be aware of the details of the disease is very important in this culture (23). In some countries, despite the tendency of the patients to be informed, even about 8 out of 10 oncologic patients are dissatisfied because of insufficient information given to them (30). This difference could be due to patients’ unawareness regarding their right to participate in their medical decisions and their right to have autonomous choices and personal preferences. In the history of developed countries, the disclosure of bad news has been problematic (31, 32), but now breaking bad news has become one of the patient rights, and it is not considered controversial in those countries; however, such an issue is considered difficult and controversial in other Asian countries (33). The most contentious question was whether others should tell lies to the patient about the disease or not; 42.8% of the patient family members and 30.4% of the patients agreed with it, while only 3.8% of the physicians agreed to tell lies to the patient. In Beauchamp’s study, trust was a central part of the responsibility of health services, and telling the truth to the patient about their condition can decrease anxiety and treatment difficulty (34).

In all questions, people with higher education were more inclined to tell the bad news, which could be due to more study and information on this issue. Also, the results showed that most participants who resided in urban areas believed that the patient should be the first person to be informed of his/her illness (35).

Truth telling is one of patient rights based on the principle of respect for patient’s autonomy; improving trust, which is the basis of the physician-patient relationship (36), is dependent on truth telling. Patients with terminal illness diagnosis and poor prognosis should receive adequate information to participate in their medical decisions. Respecting and supporting patients and their families as persons who can and must make their own decisions according to their best interests is highly critical (37). In our study, physicians and patients were opposed to hiding the news about the illness from the patient, but families agreed with it. In Beauchamp’s study, trust was an integral part of the responsibility of health care providers. Therefore, physicians need to tell patients the truth about their condition, and the result is a reduction in anxiety (28). However, further research is also warranted and recommended (38).

5.1. Conclusions

There is a tendency to hear bad news in Iranian culture. In this culture people tend to protect their associates from hearing bad news. According to this study, those participants with higher education had the tendency to hear the bad news; thus, providing public education may change the attitudes. The tendency to hear lies in some participants was an unusual finding, suggesting the necessity of more studies about the validity of the finding. In addition, investigations on moral psychology and intensives could be attractive. The development of a policy on breaking the bad news seems needs to be included in future programs of Iranian hospital ethics committees due to an increase in the tendency of patients to receiving bad news.

Acknowledgements

Footnotes

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