Abstract
A significant development for conducting research on patient rights has been made in Iran over the past decade. This study is conducted in order to review and analyze the previous studies that have been made, so far, concerning patient rights in Iran. This is a comprehensive review study conducted by searching the Iranian databases, Scientific Information Database, Iranian Research Institute for Information Science and Technology, Iran Medex and Google using the Persian equivalent of keywords for ‘awareness', ‘attitude’, and ‘patient rights'. For pertinent Iranian papers published in English, scientific databases PubMed, and Google Scholar were searched using the keyword ‘patient rights' and ‘Iran’. A total of 41 Persian and five English articles were found for these keywords, only 26 of which fulfilled the objective of our study. The increasing number of papers published indicates that from 1999 onwards, this subject has begun to draw the attention of Iranian researchers in a progressive fashion and Iranian papers in English have also been compiled and published in international sources.
Introduction
Promoting patient rights is among the priorities of healthcare providers and is considered as an indicator of health state in every community. 1 Patient rights may be considered as one of the main bases for defining the standards of clinical services. On the other hand, the concept of patient rights has been on the rise alongside the ever-growing interest of international organizations in human rights 2 to such extent that many countries have defined certain rights for patients within their healthcare systems, and these rights are obligatorily observed by healthcare providers. Defining such rights reciprocally mandates certain responsibilities for the service providers. Therefore, observing patient rights goes beyond personal preferences of healthcare providers or mere manuals and instructions, but will be monitored continuously by monitoring and evaluating systems for every minor detail. 1
Rights stem from respecting individuals in a social context 3 and patient rights consist of everything that is becoming of him or her. 4 The World Health Organization (WHO) defines patient rights as the collection of rights which individuals have in the healthcare providing system and healthcare providers are required to observe. 1 Furthermore, WHO emphasizes that patients, physicians and nurses must work in cooperation to provide appropriate conditions for supporting patient rights. 2
In order to fulfil patient rights in an essential and comprehensive manner, governmental and non-governmental organizations cooperate in many different countries of the world; 2 however, it appears that there is still a large gap between healthcare providers, patients and the general population in terms of awareness of patient rights and opportunities for assistance to decision making, even in those countries where not only bills of patient’s rights, but also laws and regulations have been passed to support patients. 2
In Iran, the Patients' Bill of Rights was compiled in 2002 by the Health Deputy at Ministry of Health and Medical Education and sent to its subordinate organizations. The suggested, corrected Patients' Bill of Rights was passed by the Policy Council of Ministry of Health and Medical Education on 26 October 2009 and submitted to the pertinent organizations on 2 November in the same year. 5 Despite the extensive emphasis bestowed on the bill by policy makers of the healthcare system, it has remained vague and ambiguous for patients and healthcare providers. 6 Therefore, considering the fact that ethical provision of healthcare services requires observance of patient rights, 7 the most helpful step for promoting these rights would be to inform people, alongside educating healthcare providers, about the subject. In addition, collecting data regarding this issue would aid policy makers in taking up further steps for enforcing this critical subject.
This study is conducted in order to review the performance of the Iranian researches concerning the Patients' Bill of Rights, its observance and awareness and attitude of the relevant people, including \physicians, nurses, managers and patients of the various dimensions of these rights and the impact of background factors. The Iranian first Patients' Bill of Rights is presented in Joolaee et al.’s first article regarding the issue. 6
Method
This is a comprehensive review study conducted by searching in Iranian databases: Scientific Information Database (SID), Iranian Research Institute for Information Science and Technology, Iran Medex and Google, using the Persian equivalent of keywords for ‘awareness', ‘attitude’, and ‘patient’s rights'. For pertinent Iranian papers published in English, scientific databases such as Pubmed and Google Scholar were searched using the keywords ‘patient’s rights' and ‘Iran’. In addition to the above mentioned databases, the researchers contacted experts in the field in an attempt to acquire studies that have been conducted on this issue but were not found in the databases.
Results
A total of 41 Persian articles were found with these keywords, of which only 26 were consistent with the objectives of our study and the rest were concerned with details and particular aspects of patient rights which fell out of scope of this paper. In addition to papers and dissertations, a number of abstracts pertaining to papers presented in congresses and seminars existed; in some cases, the respective full articles were found, as well.
There were also six English articles in international scientific databases, which dealt specifically with the issue of patient rights in Iran. In three cases, Persian counterparts of the article had been published in Persian scientific journals and thus were already reviewed as part of our literature.
The results are presented in the Table 1.
Summary of included studies regarding patient rights in Iran
Discussion
The first Iranian Patients' Bill of Rights was compiled in 2002 by the Health Deputy of Ministry of Health and Medical Education and sent to subordinate organizations in 2002. 8 Studies conducted in the 1990s and early 2000s indicate that the issue of patient rights has attracted the attention of Iranian researchers. Comparative studies depicted the fact that the Iranian Patients' Bill of Rights does not cover all necessary aspects and angles of patient rights; the findings of these studies suggested an inevitable necessity for compilation of a more comprehensive Patients' Bill of Rights, which would regulate the relationships between patients with physicians and healthcare institutes, particularly hospitals. 9
Nemat Ollahi et al. 10 believe that although there is no coherent body of laws in Iranian legislation called ‘laws concerning patient rights', miscellaneous parts of laws and regulations of the Ministry of Health and Medical Education have observed laws concerning care, confidentiality, declining therapy, consent, consultation, medical emergencies and fees of medical services. These laws are particularly elaborated in the case of medical emergencies and are clear about the patient rights for receiving immediate care. A study by Hajavi et al. 11 indicates that the Patients' Bill of Rights in the USA, England, Canada, and France grants right of access to healthcare services, right of consent to therapy, right of privacy and right of judiciary suing, whereas the Iranian Bill of Rights passed in 2002 lacks these rights. Right of confidentiality of information occurred in the Patients' Bill of Rights in all countries, while the right of having an interpreter and the right of pain relief only occurred in the Patients' Bill of Rights in certain states of the USA. 11
Comparing the studies conducted on comprehension and attitude of patients, nurses, physicians and managers in Iran indicates that the majority of studies have been concerned with the attitude of patients, and then that of nurses, physicians and managers; in this regard, about one-third of the studies in Iran have evaluated the attitude of patients. The number of patients in these studies ranged from 160 to 700. In almost all cases, the data collection tool consisted of close-end questions, which the patients could easily answer with Yes/No. In the questionnaires pertaining to the attitude of physicians and nurses, however, Likert scale was mainly utilised.
As is seen, the main body of researches in the field of patient’s rights is in regard to the patients' opinions, so we can conclude that the researchers mainly consider this group as the centre of care and a significant partner in the healthcare system.
Certain studies indicate a similarity in attitudes (patients, nurses and physicians) concerning patient rights,5,12 whereas some studies observed a discrepancy in that regard. 13 Most studies indicated clearly that the majority of patients are not sufficiently aware of their rights.14–17 This unawareness may be accounted for by insufficient and inappropriate information in Iranian society with regard to the issue of patient rights, which in turn may be due to a lack of participation of public media in informing people on the one hand, and the unawareness of healthcare providers on the other. In fact, some of the preliminary studies indicated that many of the patients were not even aware that they had certain rights in the healthcare system. 1 This issue is quite different in the advanced European and American countries where the behaviour and expectations of the patients admitted to hospitals have changed dramatically since 1960; during those years, the patients inquired about their therapy and health from managers, physicians and nurses more than ever, and criticized them if their rights were not considered. In many societies, patients retain the right to question the healthcare system. They inquire about their diagnosis and wish to make sure that they receive ample healthcare, and they will react if their expectations are not met. In other words, healthcare providers face this undeniable fact that patients are ready to demand their basic rights. This is most notably related to the right of ‘receiving information and participation’ defined in patients' bills of rights in many European and American countries, 11 because in client-based societies, soaring expectations of the patients lead to the compilation of manuals and instructions, which in turn, result in higher expectations. One essential point to be considered is the fact that as long as the patients are not aware of their rights, they will not be able to inquire about the healthcare services provided for them and thus they cannot participate efficiently in the healthcare process. Most studies conducted in Iran indicated that the higher the awareness of patients about their rights, the more these rights will be observed by healthcare providers.12,18 Simultaneously, a review of most studies that dealt with patient rights from the patients point of view indicates that more than half of the patients stated that their rights were respected by healthcare personnel.19–22 Despite the shortcomings in the Iranian healthcare system, this satisfaction may be due to the fact that the patients are not fully aware of their rights and thus, they tend to have modest expectations, requests and demands from the healthcare system. 1 Some Iranian studies indicate that the physicians acknowledge the idea of patient rights and its necessity5,23 and they have a high level of awareness of these rights. 14 These findings indicate that patient rights are particularly important for physicians; however, the patients do not practically receive sufficient information from their physicians, or they do not even demand it. Similarly, the nurses are highly aware of patient rights just as physicians are18,24 and their attitude is on the approving side; 8 however, some other studies report that their awareness and observance of the Patients' Bill of Rights is greater than average in some aspects, and lower in some others. In some studies, most nurses were of the opinion that patient rights were observed in their respective hospitals, 25 while their level of observance for these rights was in the average group. 26 Despite different and sometimes contradicting findings, the existence of a direct, linear relationship between nurses' awareness and their observance of patient rights is undeniable and highlighted in many studies.18,24,26 Shortage of nursing staff is a very powerful and influential factor of the quality of services provided, and thus affected the observance of patient rights in many studies.25,26 It is a nurses' duty to observe the patient rights; however, the patients expectations must be sensible and realistic. The first duty of nurses is for patients who need their services. In providing services, the nurse creates an environment where the rights, values and beliefs of the person, families and the society are respected. 3
The findings of Salimi et al. 13 indicate that in hospitals of Isfahan Iran, there is a large discrepancy between the viewpoints of patients (as receivers of service and holders of the rights) and physicians and nurses (as providers of healthcare services) regarding the Patients' Bill of Rights and its level of observance. However, the results of a qualitative study by Joolaee et al. 12 indicate that the patients and their accompanying relatives, as well as physicians and nurses, have similar understandings of patient rights and interpret it based on their own experiences. Moreover, a comprehensive study by Parsapour et al. 5 concluded that all three groups (patients, physicians, nurses) agree on the necessity of most patient rights and little significant discrepancy was observed regarding the attitude of the three groups. Some of the studies conducted on patient rights may be categorized in four basic groups:
1) Patients' understanding and attitude towards patient rights
A cross-sectional study by Mosadegh Rad in Isfahan (2003) graded the awareness of patients of their rights as 0.32 ± 0.17 out of 1. According to his study, 40% of patients had very weak, 41.9% weak, and 18.1% average awareness of their rights in hospital. There was a significant statistical relation between patients' awareness and their education (p = 0.004), and the city they live (p = 0.008). Working patients were also more aware than unemployed (p = 0.006). 27
In a descriptive-analytical study by Vaskooei Ashkevari et al. 19 in Tehran hospitals: ‘the patient’s satisfaction from observance of their rights' was reported to be 53.2%. Furthermore, the greatest level of satisfaction pertained to informed consent and the smallest level of satisfaction was related to autonomy and right of decision. This was a well-designed study including 700 patients from an educational hospital in Tehran, selected through stratified random sampling. Joolaee’s 28 study on patients admitted to hospitals of Tehran University of Medical Sciences concluded that most patients are not aware of their rights and it is the duty of healthcare providers to inform them of these rights. A study by Dadkhah et al. 20 in Ardabil indicated that 53.7% of patients felt their rights and privacy were often observed by the personnel. Additionally, there was a statistically significant relationship between the patients' level of education and their feeling that their rights were observed; i.e. the satisfaction with observance of respective rights was considerably less among patients with higher education than those patients with only elementary or high school education. In Kolahee and Sohrabee’s study 21 in Emam Hosein Hospital, Tehran, the patients mentioned that their rights were observed in more than half of the cases, although only 30 patients (14%) had seen the Patients' Bill of Rights and only 13 patients (6%) had read it. These patients were familiar with 84% of the questions pertaining to awareness about the Patients' Bill of Rights. In a study on awareness of patients of their rights in Jahrom, Iran, only 8.14% of patients were aware of their rights, with the greatest awareness pertaining to the patients with higher education. 15 A study titled ‘Evaluating the observance of patient rights in hospitals of Sabzevar, Iran’ found 57.5% of patients were satisfied with the observance of their respective rights by healthcare personnel. According to the findings, gynaecologic/obstetric hospitals were ranked as the highest in terms of observing patient rights. 22 According to most research results, the more educated patients have more expectations regarding their rights.
2) Physicians' understanding and attitude towards patient rights
Studies conducted in Iran usually reported physicians to have approving views on patient rights and the necessity of observing these rights. The findings of Rangraz and Rabei’s study 23 indicated the physicians in Kashan, Iran approved of patient rights. Parsapour et al. 5 conducted a comprehensive study with an inclusive look at patient’s rights from different perspectives. They reported that physicians emphasized the necessity and importance of the rights mentioned. A study by Mosadegh Rad and Asna Asharei 14 in Isfahan indicated the awareness of physicians of patient rights to be 0.90 ± 0.12 out of 1, ranking excellent. More specifically, the awareness of physicians of patient rights was weak in 3.7%, average in 7.4%, good in 11.1%, and excellent in 77.8% of the physicians evaluated. Despite these findings indicating excellent awareness of physicians, the hospital’s score for observing patient rights was 0.33 ± 0.1 out of 1, considered weak. In general, findings of studies related to physicians indicates that an excellent awareness on the part of physicians does not necessarily warrant the observance of patient rights by them and other personnel, and relevant factors must be considered too.
3) Nurses' understanding and attitude towards patient rights
One of the key nursing values is that of being at the patients' side and protecting their rights. This is a live issue at the moment in Iran, and has received much attention recently. 29
A study by Hooshmand et al. 18 concluded that most nurses (95.5%) have a high understanding of patient rights, and the understanding was medium for the remaining nurses; however, most of the nurses in that study had a medium understanding of the right of ‘receiving necessary information in all stages of diagnosis, treatment and natural course of the disease’. 18 In Rangraz jeddi’s 8 study conducted in Kashan, nurses' attitudes fell in the approval range. According to the findings of Ghanbari and Khalegh Doost 25 in Rasht, the majority (54%) of nurses believed that patient’s rights were observed in their hospital; the mean and standard deviation of observance of patient rights from the nurses' viewpoint was 60.5 ± 9.1. The findings of Nasiriyani et al. 26 in Yazd indicated the level of observing patient rights by nurses to be medium in 53.2%, good in 37.1%, weak in 7.9% and excellent in 1.8% of cases, with a mean and standard deviation of 9.84 ± 2.60. The findings also indicated a significant relationship between work experience of nurses and the observance of patient rights (p = 0.006). Hasanian’s 30 study in Hamadan concluded the positive attitude of nurses to be 58% towards the right of respect, 67.7% towards the right of accepting or declining treatment, 64.3% towards the right of confidentiality, and 60.7% towards right of patients in human researches. A study by Nasriyani et al., 24 entitled ‘Evaluating the relationship between nurses' awareness of patient rights and observing these rights in hospitals of Yazd’, indicated nurses' awareness and observance to be good and medium, respectively. However, they discovered a significant relationship between nurses' awareness of patient rights and observance of the rights (p ≤ 0.0001), which was direct and linear, and increased with rising awareness of patient rights by nurses.
4) Managers' understanding and attitude towards patient rights
Considering the potential role of managers in implementing operational plans for observing patient rights in hospitals, a few studies have been conducted to evaluate the attitude of managers towards patient rights. A study by Arab and Zarei, 31 entitled ‘Evaluating the awareness of managers of patient rights in governmental and private hospitals in Tehran’, indicated that the awareness of managers of governmental hospitals of Tehran regarding patient rights was 34.5% good, 48.5% medium and 17% weak. Furthermore, educational degree, major field of study, and management training were three influential factors of managers' awareness of patient rights. Another study 32 in private hospitals of Tehran reported managers' awareness of patient rights to be 23% good, 54% medium and 23% weak. Educational degree, location of obtaining the degree, major field of study and management training were four factors influencing the awareness of managers of patient rights in private hospitals. Thus, it appears that managers in governmental hospitals have a more positive attitude towards patient rights, which may be accounted for by the criteria considered in employment of these managers which mandate better observance of ethical issues.
It should be mentioned that the number of studies on managers' views in this field is rare and also the number of samples. So it seems that the next generation of patient’s rights studies should be more focused on this group.
Conclusion
The growing rate of studies concerning patient rights in Iran indicates that from 1999 onwards, this issue has increasingly attracted Iranian researchers. During this period, Iranian English articles have begun to appear in international journals, in addition to articles published in Iranian journals. It appears that this interest is in line with the will of the Iranian Ministry of Health and Medical Education to bring to force the mechanism of respecting patient rights, and healthcare providers may seize this opportunity to promote the state of patient rights in the Iranian healthcare system. Since the studies conducted up to now indicate a necessity for improving the awareness and attitude of physicians and nurses towards the issue of patient rights, it is expected that consideration of patient education and close observation of the Patient’s Bill of Rights to be an essential duty of healthcare personnel, and these issues must be included in personnel evaluation plans.
Ethics and patients rights issues should also be considered further in nursing and medical education by introducing the concepts as a fundamental part of all courses, as well as focusing more on teaching advocacy and communication skills to those groups. 1
Since healthcare managers are supposed to prepare the clinical context for patient’s rights practice, they should really believe in the importance of the issue. Continuing education programmes may prepare them for accepting the responsibility of change management in the field according to the new Ministry of health and Medical Education guidelines
The current Iranian Minister of Health and Medical Education last year circulated a letter to all medical sciences universities to oblige them to observe patients rights practice and fulfil the demands laid out in the Patients' Bill of Rights. 29 The new Iranian Patients' Bill of Rights has also been established and circulated recently, which is another positive sign for the patients and their families to be hopeful for the promotion of patient rights practice in Iran.