Saif M Borgan1, Justin Z Amarin2, Areej K Othman3, Haya H Suradi2, Yasmeen Z Qwaider2. 1. Endocrinology & Metabolism Institute, Cleveland Clinic, Cleveland, OH, USA. 2. The University of Jordan School of Medicine, Amman, Jordan. 3. Department of Maternal and Child Health Nursing, The University of Jordan School of Nursing, Amman, Jordan.
Advances in Knowledge- Physicians who were ‘not always truthful’ were more likely to agree that non-disclosure is beneficial for the physical and psychological health of patients, which suggests that therapeutic privilege is one possible ethical rationale for non-disclosure.- Of the physicians who were ‘not always truthful’, 39% indicated that non-disclosure is ‘unethical’, which suggests that these physicians may feel pressured to comply with sociocultural norms that they do not necessarily agree with.Application to Patient Care- Physicians who were ‘always truthful’ and those who were ‘not always truthful’ generally believed that the introduction of legislation to enforce disclosure would positively affect medical practice (and therefore, patient care) in Jordan.Non-disclosure of health information was widely prevalent in 20th-century Western medicine.1,2 In 1961, Oken reported that 90% of a sample of physicians in the United States indicated a preference for not telling cancer patients they have cancer.2 Non-disclosure has since dramatically decreased in the United States and is unjustified by contemporary ethics.3,4 In many courts, non-disclosure is considered negligent and illegal and ‘therapeutic privilege’ is not a valid defence because discretion cannot take precedence over informed consent.4 However, non-disclosure remains prevalent in more conservative countries including Japan, China, Pakistan and many countries in the Middle East.5–8In these countries, multiple factors motivate truth non-disclosure; however, sociocultural factors, such as strong family influence, appear to be the main drivers.9,10 In the context of cancer, for example, families often request non-disclosure because of the associated stigma, misconceptions regarding prognosis and their perceptions of the negative effect of disclosure on patient well-being.7 Non-disclosure practices are further propagated by the lack of transparent legislation to protect patient autonomy.From the perspective of physicians, disclosure may theoretically conflict with other ethical principles, such as beneficence and non-maleficence. For instance, some physicians believe that informing patients with a terminal illness of their prognosis results in ‘unnecessary’ psychological suffering and is medically contraindicated.1,11 Non-disclosure motivated by this reason is termed ‘therapeutic privilege’.11Similar to other countries in the Middle East, Jordan’s culture is heavily influenced by family-centred values. The current researchers previously conducted a cross-sectional study to investigate truth disclosure practices of physicians in Jordan.10 In 2018, the researchers reported that 23% of physicians do not usually disclose the truth to a patient with a serious illness and are commonly motivated by a direct request from the patient’s family. However, 15% of physicians who do not usually disclose the truth do so independently—with no impetus from the patient’s family—and current evidence does not explain the rationale behind independent non-disclosure in Jordan.10 This study aimed to investigate the attitudes of physicians in Jordan towards non-disclosure, with a secondary focus on the differences in attitude between those who are ‘always truthful’ and those who are not.
Methods
The current investigation is based on the second subset of data from a cross-sectional study of truth disclosure practices and attitudes of physicians in Jordan, which was conducted between January and August 2016.10 The researchers’ previous report explored the truth disclosure practices of physicians in Jordan. In the current study, the attitudes of physicians who always disclose the truth are compared with those who do not.The physicians employed by two of the largest hospitals from each of the public and private sectors in Amman, the capital of Jordan, were surveyed. The total bed capacity of the four hospitals is 1,524.10The lists of physicians employed by each hospital were obtained and used to select the preliminary sample by stratified random sampling. Paediatricians and psychiatrists were excluded because they deal with unique and specific truth disclosure considerations. Sixty participants from each participating hospital were randomly selected using an online random number generator based on atmospheric noise for a total preliminary sample of 240 participants. The participants were approached during office hours, introduced to the study and invited to participate by completing a self-administered questionnaire.A questionnaire developed by Hamadeh and Adib was modified, following permission, to accommodate the sample.12 The questionnaire includes closed-ended and Likert-type questions regarding attitudes towards non-disclosure of health information. The language of complex and ambiguous questions was respectively simplified and clarified, as identified by a pilot sample of 15 physicians employed by a small private hospital in Amman. Two independent experts were also asked to review the face and content validity of the questionnaire.Statistical Package for the Social Sciences (SPSS), Version 23.0 (IBM Corp., Armonk, New York, USA) was used to perform data analysis. First, descriptive statistics were computed. Second, physicians were stratified according to their disclosure policy: ‘always truthful’ versus ‘not always truthful’. Physicians whose usual disclosure policy was to ‘informed’ and who reported never making exceptions to their policy were considered ‘always truthful’. Physicians who reported a usual ‘do not inform’ policy or those who reported a ‘informed’ policy but reported making exceptions of any frequency were considered ‘not always truthful’. Finally, the association between questions concerning disclosure policy and truth disclosure attitude was investigated using Pearson’s χ2 test and values of P <0.05 were interpreted as statistically significant. Throughout the report, numerical data are presented according to the recommendations of Cole.13The ethics committees of all participating hospitals approved the study protocol and waived the requirement for written consent. Verbal consent from each participant was obtained.
Results
Out of 240 invitees, 164 (response rate: 68%) completed the questionnaire. The characteristics of the sample have been described previously.10 It was found that 126 physicians (77%) were non-specialists and 38 (23%) were specialists; 113 (69%) were men and 51 (31%) were women; and 95 (58%) worked in the private sector while 69 (42%) worked in the public sector [Table 1]. The usual disclosure policy of 127 physicians (77%) was to inform, compared with 37 (23%) whose usual disclosure policy was not to inform. According to their reported disclosure policy, 17 physicians (10%) were ‘always truthful’, while the remaining 147 (90%) were not [Table 2].
Table 1
Characteristics of the included physicians from four hospitals in Amman, Jordan (N = 164)
Characteristic
n (%)
Age group
20–29 years
97 (59)
30–39 years
41 (25)
40+ years
26 (16)
Gender
Male
113 (69)
Female
51 (31)
Employment sector
Public
69 (42)
Private
95 (58)
Nationality
Jordanian
144 (88)
Other
20 (12)
Marital status
Single
85 (52)
Engaged
8 (5)
Married
69 (42)
Other
2 (1)
Level of specialisation
General practitioner
31 (19)
Resident
95 (58)
Specialist
38 (23)
Physician experience
1–5 years
113 (69)
6–10 years
22 (13)
>10 years
29 (18)
Table 2
Attitudes towards non-disclosure of medical information among included physicians from four hospitals in Amman, Jordan
Attitude
n (%)
Policy on disclosing the diagnosis of ‘serious illness’ directly to a competent adult patient
Inform
127 (77)
Do not inform
37 (23)
Consistency of truthfulness
Always truthful
17 (10)
Not always truthful
147 (90)
Perceived ethics of non-disclosure*
Ethical
19 (12)
Unethical
70 (43)
Depends on the situation
75 (46)
Perceived physical and psychological benefit of non-disclosure to patients*
Beneficial
69 (42)
Not beneficial
95 (58)
Statistically significant difference in this attitude between physicians who are ‘always truthful’ and those who are not.
In total, 19 physicians (12%) indicated that non-disclosure is ethical, 70 (43%) indicated that non-disclosure is unethical and 75 (46%) indicated that it depends on the situation. Physicians who were ‘always truthful’ were more likely to indicate that non-disclosure is unethical (77% versus 39%; χ2(2) = 9.3, P = 0.009). Notably, none of the physicians who were ‘always truthful’ indicated that non-disclosure is ethical. In addition, 69 physicians (42%) agreed that non-disclosure is beneficial for the physical and psychological health of patients, while 95 (58%) disagreed [Table 2]. Physicians who were ‘always truthful’ were more likely to disagree (82% versus 55%; χ2(1) = 4.7, P = 0.03).Among the physicians belonging to the ‘not always truthful’ group, when asked if they agreed that ‘all patients have the right to know their diagnosis’, 94 (57%) strongly agreed, 61 (37%) agreed, seven (4%) were neutral and two (1%) disagreed. These physicians were also asked if they agreed that ‘most patients prefer to know their diagnosis’ and 59 (36%) strongly agreed, 75 (46%) agreed, 16 (10%) were neutral, 10 (6%) disagreed and four (2%) strongly disagreed. The distribution of responses for physicians who were ‘always truthful’ and those who were ‘not always truthful’ are presented in Figures 1 and 2.
Figure 1
Ratings of 164 physicians from Amman, Jordan, regarding their perception of a patient’s right to know their diagnosis stratified by disclosure policy using a Likert-type scale.
Figure 2
Ratings of 164 physicians from Amman, Jordan, regarding their perception of a patient’s preference to know their diagnosis stratified by disclosure policy using a Likert-type scale.
If they were to fall seriously ill, 140 physicians (85%) indicated that they would want to be informed of their diagnosis directly, while 19 (12%) indicated that they would want their family to make the decision to inform them or not and five (3%) indicated that they would not want to be informed at all. The distribution of responses in favour of direct disclosure was similar for physicians who were ‘always truthful’ and those who were ‘not always truthful’ (94% and 84%, respectively; χ2(1) = 1.2, P = 0.3).Finally, 151 physicians (92%) believed that the introduction of legislation to enforce disclosure would positively affect medical practice in Jordan, while 12 (8%) did not. Once again, the distribution of positive responses was similar for physicians who were ‘always truthful’ and those who were ‘not always truthful’ (94% versus 92%; χ2(1) = 0.1, P = 0.7). Compared with physicians working in the private sector, those working in the public sector were more likely to believe that the introduction of legislation to enforce disclosure would positively affect medical practice in Jordan (87% versus 99%; χ2(1) = 6.8, P = 0.009).
Discussion
In this study, the attitudes of physicians in Jordan towards non-disclosure of health information are explored with a secondary focus on the difference in attitudes between those who were classified as ‘always truthful’ and those who were not. It was found that physicians who were ‘always truthful’—the minority—were more likely to indicate that non-disclosure is unethical and unbeneficial for the physical and psychological health of patients. Most of the surveyed physicians (including those who were ‘not always truthful’) indicated that all patients have the right to know their diagnosis, most patients prefer to know their diagnosis and the introduction of legislation to enforce disclosure would positively affect medical practice in Jordan.In Jordan, non-disclosure of health information is prevalent; the researchers previously reported that the usual policy of 23% of a sample of physicians was not to disclose.10 Sociocultural factors are often the drivers of non-disclosure.9,10 However, the attitudes of physicians may also be influential. For example, the researchers also showed that 15% of physicians who do not usually disclose the truth do so independently and that truth disclosure practices vary widely from hospital to hospital and even within the same hospital.10In this study, it was found that none of the physicians who were ‘always truthful’ indicated that non-disclosure is ethical, which reflects a hard-line, black-and-white stance on truth disclosure. In the grey area, many people in the Middle East would not want the truth disclosed to them.8 Indeed, in a Lebanese study of 498 participants, including patients with cancer, patients with no cancer and healthy people, 42% indicated a preference for non-disclosure.14 However, recent evidence suggests that the attitudes of both physicians and the public are shifting in favour of personal autonomy.8,15 In support, the researchers of the current study also posed a reverse scenario and found that 85% of physicians indicated that they would want to be informed of their diagnosis directly if they were to fall seriously ill.It was also found that most of the physicians surveyed as part of the present investigation, who were ‘not always truthful’, indicated that whether non-disclosure is ethical ‘depends on the situation’. According to previous studies, a physician is less likely to disclose sensitive health information if the patient has a poor prognosis, such as end-stage cancer or limited life expectancy or if the physician is wary of characteristics that signal a limited ability to cope with the truth, such as advanced age or preference for non-disclosure. 12,16,17 In these situations, physicians may invoke therapeutic privilege as the ethical rationale for non-disclosure; disclosure may be considered cruel and likely debilitative to patient well-being. Indeed, therapeutic privilege may inform the attitudes of both physicians and the public towards non-disclosure.8,16 In support, this study found that physicians who were ‘not always truthful’ were more likely to agree that non-disclosure is beneficial for the physical and psychological health of patients.It was also found that some of the physicians who were ‘not always truthful’ indicated that non-disclosure is ‘unethical’. These physicians may feel pressured to comply with sociocultural norms that they do not necessarily agree with. Based on the researchers’ own observations, the repercussions of disclosing the diagnosis of a serious illness against the family’s wishes are grave and the physician-family-patient relationship may break down as a result. In Eastern cultures, physicians often make medical decisions with input from the patient’s family.18 Hence, they may be compelled to withhold information from the patient for the sake of maintaining the relationship with the family so the patient can continue to receive the necessary treatment.It is not clear whether there is a culturally specific and realistic approach to truth disclosure in the Middle East, a deficiency that must be addressed in future studies. While further data are needed to develop an evidence-based approach, culturally specific guidelines based on experience are necessary to support patient autonomy and alleviate the fears and misconceptions of physicians regarding truth disclosure. This study shows that physicians who were ‘always truthful’ and those who were ‘not always truthful’ generally believe that the introduction of legislation to enforce disclosure would positively affect medical practice in Jordan. This finding has also been shown in a parallel study of physicians in Bahrain.19 It is expected that the guidelines will have a bigger impact on the public sector, as supported by the attitudes of physicians, because the private sector in Jordan operates under limited governmental and public policy oversight. However, the overwhelming majority of physicians within both sectors believed that introducing truth disclosure legislation would have a positive impact.The main limitations of the current study are potential non-response bias and selection bias. For example, the attitudes of physicians who chose not to participate may be considerably different from those who did. In addition, the four selected hospitals are set in urban areas and the attitudes of physicians in rural areas may also be vastly different. Finally, the small number of physicians who were ‘always truthful’—though telling—limits the validity of the comparative analysis.
Conclusion
The differential attitudes of physicians who were ‘always truthful’ and those who were ‘not always truthful’ suggests a rationale behind independent non-disclosure, namely that non-disclosure is ethical and beneficial for the physical and psychological health of patients. Regardless of disclosure policy, the introduction of legislation to enforce truth disclosure appears to be welcomed by most physicians.
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