different health care professional perspectives of ...

Different Health Care Professional Perspectives of Patients’ Rights Bill in Iran Nina Loori 1, Ensiyeh Jamshidi 2, Khandan Shahandeh 3, Fatemeh Mirbazegh 4, Maryam Saberi 5

ABSTRACT

Introduction: To promote equitable health care, it is important to consider patients’ rights. Patients' rights vary in different countries, often depending upon prevailing cultural and social norms. Although there is a published Patient’s rights bill in Iran prepared by Ministry of Health and Medical Education in 2001, it is needed to know the view of different professionals to improve the quality of this ethical guideline. The aim of this study is to assess the perspectives of health professional on Patients’ Rights Bill in Iran. Method: In this qualitative study semi-structured interview were conducted with thirty professional consists of nurses, physicians and midwives working in three teaching hospitals in Tehran. Purposive sampling was used for gathering information. Data were analyzed using thematic analysis. Results: Three main themes emerged from analysis of this qualitative study. The categories were: (1) the concept of patients’ rights; (2) obstacles to patients’ rights; and (3) advocating of patients’ rights. Sub categories for the first main theme were identified as knowledge about disease and choosing health care providers and treatment plans, receiving real care. The distinctive themes for the second category consist of ignoring the social and cultural background of patients, respect and discrimination, hospital’s educational setting, financial problems and giving information to patients and their companions. For the third category, the themes were consisted of existing responsible system and supervising on performance of the patient’s right bill. Certain themes identified in this study resemble those identified in international patients’ bills of rights. The current study focused on themes that are particularly relevant to the Iranian socio-cultural context. Conclusion: Healthcare professional’s perspective leads us to identify the main factors that affect patients’ rights and to make informed change.

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KEY WORDS: Health care professional, perspective, patient’s right bill Author’s Note:

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1- Member of Medical Ethics and Law Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran.MSc Candidate of Business Administration, Rsearch officer, Community based participatory research Center, Tehran University of medical sciences, Tehran, Iran. 2- PhD Candidate of Health Education and Promotion, Community based participatory research Center, Tehran University of medical sciences, Tehran, Iran. 3- PhD Candidate of Health Education and Promotion, Community based participatory research Center, Tehran University of medical sciences, Tehran, Iran. 4- MSc of Community Health Nursing, Health Deputy of Tehran University of Medical Sciences, Tehran, Iran 5-MD, MPH (master of public health), Rsearch officer, Community based participatory research Center, Tehran University of medical sciences, Tehran, Iran. Address for Correspondence: Loori N, MSc Candidate of Business Administration, Tehran University of Medical Sciences, Tehran, Iran Email: [email protected] Date of reception: Jan 10, 2011 Date of acceppt: March 20, 2011

INTRODUCTION

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ealth as a fundamental human right was recognized in the World Health Organization's Constitution stating that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, and political belief, economic or social condition [1]. In practice ‘Patients’ rights’ is a recently introduced term in health sciences literature and practice. It has been included in the publications of world-wide organizations and introduced into national legislation.

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Loori: Different health care professional perspectives

During the last fifteen years, an increasing number of European countries have adopted laws or other legal instruments respecting and protecting the rights of patients. This reflects the progressive recognition of the inherent dignity and of the equal and inalienable rights of all potential users of the health care system. [1]. Several European institutions and organizations have contributed to the development and progress of patients rights. The term “patient” is most often used in connection with health. Health relates to the state of physical, mental and social well-being. This definition, used by the World Health Organization, involves more than just the absence of disease or infirmity. Ensuring the respect of human rights has a direct impact on health and well-being and enforced the importance of specific patient’s rights [5].

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US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998 adopted the Patient's Bill of Rights The Patient's Bill of Rights in the US was created to try to reach 3 major goals: 1. To help patients feel more confident in the health care system; the Bill of Rights:  Assures that the health care system is fair and it works to meet patients' needs  Gives patients a way to address any problems they may have  Encourages patients to take an active role in staying or getting healthy 2. To stress the importance of a strong relationship between patients and their health care providers 3. To stress the key role patients play in staying healthy by laying out rights and responsibilities for all patients and health care providers

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The recognition and promotion of patients’ rights has been enhanced by various factors such as special reforms of some health systems, the continuing progress of medical science and biomedical technology, the turning of society to values arising from fundamental human rights, the important changes occurring in the doctor–patient relationship, and the simplification and popularization of medical knowledge, made accessible to people mainly through the mass media. The above factors have also influenced patients’ attitudes towards health services and health personnel. According to a study of the New York Health Strategy Group, patients were very passive 30 years ago, but nowadays they are changing their attitude and becoming more health conscious and willing to make them heard [6].

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Although patient's rights as individual rights are universal, the mechanism of their implementation and their real contents vary between countries. Therefore Iran as an ancient country with more than 2,500 years of civilization, Over 90% of the approximately 72 million people who are Muslim, respecting for human beings is important in the Iranian Islamic culture, it is surprising that the concept of patients’ rights and ethical codes have not been considered until recently. To bring attention to healthcare ethics and to enhance the quality of healthcare in Iran, the Ministry of Health and Medical Education has introduced a strategic plan to advance the study of medical ethics at the national level. The Ministry [2002] also published a Patients’ Bill of Rights. However, the Bill is an amalgamation of western versions of such bills and is not based primarily on the Iranian socio-cultural context. It is not yet clear how this Bill relates to the provision of services offered by the Iranian healthcare system [3]. 63


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Most bills of rights, including the Iranian, are concerned with informed consent, autonomy, confidentiality and privacy. Professionals are expected to respect patients’ rights, but if they are not familiar with the contents of the bills of rights, or what they imply, problems can arise [4]. This study aimed to assess the perspectives of health professionals (physicians, nurses and midwives) on Patients' Rights Bill in Iran. Method This is a qualitative study that was conducted through semi-structured interview. The aim of this study is to describe and understand the lived experiences of physicians, nurses and midwives about patient’s right. The result of this inquiry reveals meaning embedded in experience in three teaching hospitals in Tehran, Iran. The main research questions were; “what is the concept of patient’s right?” “What are the barriers to fulfilling patients’ rights?” And “what are the facilitators of patients’ rights?” The participants were given a chance to describe patients’ rights, the barriers and the facilitators in their own words based on their experiences and perspectives. Purposive sampling was used for gathering information. Finally data were analyzed through using thematic analysis.

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Participants and setting A purposive sample of ten physicians, ten nurses and ten midwives were interviewed by open- ended questionnaire. These informants were selected from three central teaching hospitals in Tehran. The inclusion criteria were: at least 1 years’ working experience in the hospital for nurses and midwives and being in the second year of internship for physicians, as well as willingness to participate in interview and to explain their perspectives, the need for

being familiar with the hospital’s situation and its current regulations and policies. Ethical considerations All participants were provided with information about the research aims in a preliminary informal meeting. Confidentiality of data was assured, as were the rights of the participants to withdraw at any time. Results Based on the research questions, the data obtained from the nurses, physicians and midwives interviews mentioned in the fallowing categories:  The concept of patients’ rights  Barriers to patients’ rights  Facilitators of patients’ rights Despite clustering the emerging themes into distinct groups, they overlap so much so that they cannot realistically be considered and discussed separately. The following are some examples. Notably, some themes are based on Iranian bill of patient’s rights (somehow this is the translation of those reported by international patients’ rights organizations and in bills of rights [7, 8]) which are mentioned by the respondents as their experiences in teaching hospitals. Theme 1: The concept of patients’ rights Categories expressed by respondents in this main theme included four subcategories consists of: 1. Health care services which received by patients:  Quality: getting the optimal and highquality health care services, receiving the services as soon as possible when it needed, receiving considerate, respectful care with sympathy from doctors, health plan representatives, and other health care providers, ability to use emergency services whenever and wherever it

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needed, without needing to wait for authorization and without any financial penalty, nondiscrimination in receiving health care.  Quantity: access to health care provider in all steps and access to emergency services Less than half of the professionals mentioned that it is the rights of patients to receive non-discriminated health care services and high-quality and optimal level of health care services from the providers. Physician: “the patient has the right to receive the best health care services respectfully without any discrimination” Midwife: “patients have the right to know their physicians, nurse or midwife.” Nurse: “patients have the right to access to best kind of emergency health care as soon as possible.” 2. Information:  Information for patients about disease, health plan, health care professionals, and health care facilities  Information about treatment procedures or options to take part in treatment decisions  Health care provider’s awareness about patient’s bill of rights Most of the professionals had the same idea about that the patients have the right to receive accurate and easily-understood information about their disease, health plan, health care professionals, and health care facilities. So it is the main understanding of the patient’s right in their mind. Nurse: “patients have the right to be informed about their disease and treatment procedure.” 3. Confidentiality (privacy) of health information  The right to talk privately with health care providers

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 The right to have own health information protected  The right to ask that the doctor change own record if it is not correct, relevant, or complete Less than half of professionals said that it is the patient’s rights to keep his or her information as a secret by health care professionals and get respect to his/her privacy. Physician: “the patient has the right to protect his/her privacy” 4. Choice  Choice of providers consists of physicians, nurses, …  Choice of care plans and procedures Half of professionals agreed about that the patients have the right to know their physician, nurses or midwives and then choose them. Physician: “The health care services which are provided by health care provider should be with sympathy and honesty.” Nurse: “The patient has the right to know and choose his/her physician or nurse and has the right to receive the services without any discrimination.” Midwife: “Nobody cares about patient’s right and it’s concept in the teaching hospitals. It is just a concept which is taught in the university and now all people forget about it.” Theme 2: Barriers to fulfilling patients’ rights 1. Inequity  Insufficient access to health services and resources  Disparities in terms of social classes, ethnicity, education, etc.  lack of governmental health care centers Less than half of respondents mentioned to disparities in terms of social classes, ethnicity, and education as a main cause of inequity the hospitals.

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Physician: “unfair resources mobilization in the health sector increase burden of disease among patients and lead to inequity” Nurse: “unfortunately the majority of clients are under graduated that affect on mutual communication so the patient’s right can not be met.” 2. Disrespect  Lack of privacy on patient’s health care information Less than half of participants believe that disrespect is the main barrier of fulfilling patient’s right. Physician: “the most problem is visiting patients in front of others so they may be informed of her/his disease and medical situation.” 3. Teaching setting of hospitals  Lack of time and facilities  Lack of human resources  Crowded hospitals and heavy workload  Frustration of health care personnel  Traditional educational system in hospitals The majority of participants pointed that teaching environment of hospitals contributed to unfulfilling of patient rights. Midwife: “one of the main barriers for patients is lack of access to health care service in all regions so it causes crowded referral centers and interfering in providing different services to patients.” Nurse: “The health care staffs in teaching hospitals are supposed to work as a robot. They should do predefined tasks so what about human being aspects of work for this staffs?!” Nurse: “I work in a long term shift in addition to dealing with large number of patients and students because of lack of work force. This ward is crowded most of the time. How

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can I be in a good manner with patients or their companions?” 4. Financial problems  Lack of financial resources Most of participant mentioned to financial barriers of implementing patient rights bill. Physician: “patients often complain about payment regulation at the time of emergency instead of receiving acute health care services as soon as possible.” 5. lack of information  Lack of knowledge about patient’s right among health care providers, patients and their companions  Lack of mass media campaign on patient’s right  Lack of giving information about disease and its consequences to the patients Most of participants said that patient’s lack of information about their own rights is a main negative factor to achieve goals of patient’s right bill. Midwife: “patients don’t have enough information about their expectations from the health care providers, facilities, treatment procedures, fallowing up process” Physician: “even a summery of patient’s bill of right is not given to them at time of admission.” 6. Ineffective communication with patients  Inappropriate dealing with patients and their companions  Barriers of effective communication such as education, language, etc. Some of the participants mentioned the role of lower education and social class in ineffective communication. Physician: “when a patient is illiterate, how we can explain about his/her complicated situation.”

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7. lack of motivation among health care staff  Lack of satisfaction  Preference of organizational benefits to patient’s benefit  Lack of welfare facilities for health care staff A number of participants believe that lack of motivation can lead to ignoring patient’s rights. Midwife: “when nobody respect our rights we also ignore others (patient’s rights)” Nurse: “there are insufficient payments and we can not afford our daily living so we are not satisfied” 8. lack of monitoring system on implementation of patient’s right  Lack of commitment to legislations about patient’s rights  Lack of supportive system on implementation of patient’s bill of rights Less than half of professionals mentioned to the lack of monitoring system as an important barrier for fulfilling patient’s right. Physician: “there is no responsible system for patient’s complaints. If there is a problem, the bureaucratic process will make it worse and the patient withdraws his/her own right.” Theme 3: Facilitators of patients’ rights

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1. Existing the responsive systems  Developing the ethical committees in hospitals  Make the patient’s bill of rights articles practical  Monitoring and evaluating of achievement to the patient’s bill of right goals  Reinforcing infra-structures for implementing the bill Half of the participants pointed that if there is a responsive systems in hospitals which are care about patient’s rights, this system eval-

uate how the staff implement the bill’s articles. So the efficacy of the bill will be more. Nurse: “if there are some punishments to ignore about patient’s rights all staff will consider it” Midwife: “when someone supervises the treatments procedures in the hospitals precisely the patient’s rights will be met.” Physician: “when there is a system which pays attention to the patient’s complaints about their rights in the hospital and ranking them based on the outcomes of this system as if a hospital has the better rank will achieve a grant or more budgets, it will be more applicable.” 2. Improving the facilities and quality of health care services in teaching hospitals  Standard proportion of health care staff to the number of patients  Improving the quality of education in the universities of medical sciences  Improving the facilities in the hospitals for the patients Less than half of participants pointed to improvement of teaching hospitals’ facilities can affect the quality of health care providing positively so the patient’s satisfaction will be increased. Nurse: “if there are enough nurses against the hospitalized patients in the hospital all of them will receive good care.” 3. Promoting motivation in health care providers Approximately all of the professionals mentioned that providing more incentives for health care staff can affect their quality of work positively and as a result their services will be satisfy the patient’s need as well as possible. Midwife: “when all people respect my rights in the hospital I will mutually respect other’s rights”

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4. Providing information about patient’s rights  providing information for the patients and their companions in the time of admission, visiting and discharge  providing information for health care providers and updating them  providing information for the community through community centers, municipality’s health care centers and mass media Most of the respondents said that providing more information about the patient’s rights through different ways is one of the main facilitators. Physician: “they can publish some pamphlets about patient’s rights and give them to all at first time of entrance to the hospital.” Nurse: “the minister of health can provide some attractive educational programs in the mass media for all people to inform them about patient’s rights.” Midwife: “improving all people’s awareness about patient’s rights will facilitate through hanging the bill on the walls where all hospital’s staff, patients and their companions can see it as well as possible in all wards of hospital.” 5. Trust building and respect  Respect to patient’s privacy and confidentiality Physician: “all patients and their companions will trust their physicians when see him/her considering their privacy and it is one of the important patients’s issues according to the bill.” Just a few professionals mentioned about the right to confidentiality of patient’s medical records. 6. Patient’s empowerment (increasing the patient’s right in shared decision-making)  Mutual communication between patients and health care providers

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 Using the tacit knowledge of patients in tailoring effective programs Nurse: “when the health care professionals talk about the disease or treatment procedures in a simple way which the patients can understand it, the communication will be in an effective way.” A small number of respondents pointed to patient’s empowerment which can increase their decision making and improve meeting their needs.

Discussion Patients’ medical conditions, such as unconsciousness, cancer or mental illness, can cause vulnerability and compromise their ability to self-determine their health care and protect their own best interests. Feelings of powerlessness because of limited knowledge about health care, or experience of being neglected in the health care system, can increase patients’ vulnerability. In addition, the negative way that health professionals sometimes relate to patients, specifically the disregarding, dehumanizing, controlling, punitive and judgmental practices of biomedicine, can lead to varying degrees of vulnerability [9]. The Patients’ Bill of Rights was created in order to defend human rights; preserve patients' dignity; and ensure that in case of sickness, and especially in emergencies, patients receive competent care without discrimination. Respect for patients’ rights and the development of a framework to reflect these rights have a long record in the history of Iran’s healthcare services, as reflected in the ten clauses in the charter that have been developed and published by the Ministry of Health [10]. Involving of the patients, their companions, physicians, nurses or midwives and … as the stakeholders is critical to develop and evaluate legislation regarding patient’s rights. Through

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this process, all of them will know what their right, what they should expect and what their responsibilities are. According to a hospital survey which was conducted in Greece about satisfying patient’s right, the patients have traditionally been obedient to doctors’ authority. Although attitudes in the medical context have been gradually changing in favor of the notion of autonomy, medical paternalism, albeit most often benevolent, has not completely disappeared from the scene. Occasionally, it appears strongly in the expression of the notion of doctors’ duty of beneficence. The results of this study indicate that, despite the introduction of specific legislation, hospital patients are not yet aware of their legal rights. It is obvious that patients have to be informed about their rights during their hospital admission [6].

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The findings of the study in Lithuania to assess the awareness and practice of patient's rights law indicate that a larger proportion of the medical staff in comparison to the patients have heard or read about the Law on Patient's Rights. Furthermore, while 88% of the medical staff indicated that in their health care institutions patients were able to select a physician or nursing staff member only 40% of the patients shared this opinion. In the same manner, almost all (94%) of the medical staff but less than half (42%) of the patients agreed with the statement that patients could select the health care institution. These results confirm that there may be problems in practical implementation of the Law on Patient's Rights, as clear discrepancies in awareness and perceptions of patient's actual rights exist between the medical staff and the patients [1]. The results of a study was designed in Izmir about the approach taken by the physicians towards patient rights has demonstrated that

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the physicians are not yet sufficiently informed of the legal arrangements pertaining to patient’s rights in Turkey. The author suggests that settling patient’s rights units in health centers could be helpful in training, informing and consulting of patients [14]. Some study about bill of rights in Iran explained that despite the sanction of patient’s rights by the Ministry of Health and Medical Education, enough consideration on the patients’ rights has not been provided so far and its most noticeable inadequacy is that in its compilation, patients’ attitudes and those of involving groups, nurses and doctors, were not considered [11].

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A lack of knowledge of public, patients, nurses and physicians and unclear statements are very critical issues when talking about patients’ rights. Not only more than half of patients and healthcare providers, who explained their experiences, forgot the articles of patient’s right bill but also did not know that the Iranian Ministry of Health and Medical Education had published a patient’s rights bill.

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A study of perception of patient rights in hospital affiliated to Shahrood University of medical sciences shows that only 53.3% of participants were informed about patient’s prism rights. 31.9% learned about the prism in their academic education, 18.1% in educational seminars and conferences, and rest in other ways. Hospital held training term for 15.9% of them, and 84.1% doesn’t have any educational course. Average knowledge score was 16.38, and average attitude score was 17.09 (based on 20). There was a. positive correlation between knowledge and attitude (P = 0 .0001) [12]. 69



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A phenomenological study which was designed to examine patients’ rights based on experiences of patients, their relatives, nurses, and doctors showed that human rights are involved in many aspects of patient-oriented care. These rights are advanced through effective communication that includes understanding and sympathy. From patients’ point of view, a willingness to meet their basic needs and to protect them under any circumstance is essential characteristics of healthcare providers [13]. Finally we can say that protecting patients’ rights is the responsibility of the whole healthcare delivery system and it cannot simply be met according to a patients’ bill of rights or individual actions of physicians, nurses and midwives. It is a social concept that requires the complete intention and commitment of every country. Healthcare policy makers and managers have a duty to listen to the voices of those who are maintaining and receiving these rights to be able to find realistic ways of promoting and protecting them.

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Conclusion

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During the last two decades medical ethics have been discussed in Iran and a Patients’ Bill of Rights has recently been compiled by the Ministry of Health and Medical Education and this study assesses the perspectives of health professionals (physicians, nurses and midwives) on Patients' Rights Bill in Iran. This research demonstrated that more than half of the health care professionals know about the patient’s rights and they are ready to exercise these rights but they face with some factors such as limited facilities, lack of staff, and lack of motivation among staff, teaching setting of hospitals, inadequate monitoring systems, public unawareness and society’s poor

attitude towards this issue (patient’s right). Because they believe that most of the bill’s articles are subjective issues that may everybody talks about but don’t pay attention to it or act based on it. In other words they are not practical as well as possible. Furthermore, the finding of this study indicate that the factors such as developing the ethical committees in hospitals, monitoring and evaluating of achievement to the patient’s bill of right goals, reinforcing infra-structures for implementing the bill, improving the quality of education in the medical universities, increasing the budgets of teaching hospitals, supporting the health care staff to motivate them, providing useful information about patient’s right for the community through community centers, municipality’s health care centers and especially mass media, and for health care staff through university of medical sciences or workshops in the hospitals, effective mutual communication between patients and health care provider, Using the tacit knowledge of patients and health care providers in tailoring effective programs, … are the main factors which are mentioned as the facilitators of patients right bill.

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In conclusion, these factors would help to establish measures for protecting patients’ rights and providing a safer hospital environment for patients and staff. Healthcare professional’s perspective provided by this study leads us not only to identify the main factors that affect patients’ rights and to make informed change but also are useful for managers and policy makers as they pay attention to the expectations of those who want to protect these rights practically.

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Limitations The findings of this qualitative study are not expected to be generalized and its findings should only be applied with caution and after adjusting them to each specific context. But they contribute to sharing physicians’, nurses’ and midwives’ experiences with factors affecting patients’ rights practice in Iran with the same around the world. Acknowledgements The authors would like to express their appreciation to the physicians, nurses and midwives who participated in this study for sharing their valuable perspectives. REFERENCES Ducinskiene D., Vladickiene J., Kalediene R., : “Awareness and practice of patient's rights law in Lithuania”, BMC International Health and Human Rights, Sept 2006. Patient's Bill of Rights, What is the Patient's Bill of Rights?, http://www.cancer.org Salehi T., Dehghan Nayeri N., Negarandeh R., Ethics: “Patients’ Rights and the Code of Nursing Ethics in Iran”, the online journal of issues in nursing, Vol. 15 - 2010, No 3, Sept 2010. Joolaee S., Tschudin V., Nikbakht-Nasrabadi A., & et al.: “Factors affecting patients’ rights practice: the lived experiences of Iranian nurses and physicians”, International Council of Nurses journal, 2008 “Patients’ Rights in the European Union”: European patient’s forum, 2009 Merakou K., Dalla-Vorgia P., Garanis-Papadatos T.:“SATISFYING PATIENTS’ RIGHTS: A HOSPITAL PATIENT SURVEY”, Nursing Ethics, Vol. 8, No.6, 2001 patient's Bill of rights, American Cancer Society, 2009 World Health Organization patient’s rights, 1995 Negarandeh R., Oskouie F., Ahmadi F., Nikravesh M.: “THE MEANING OF PATIENT, ADVOCACY FOR IRANIAN NURSES”, Nursing Ethics, Vol.15, No. 4, 2008 AliAkbari, F. & Taheri, F. :“Scrutinizing the level of patients’ rights charter from the working nurses’ points of view in educational hospitals in Shahr-é-Kord in 2007”. Abstracts of the

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second international conference on Iran medical ethics, Tehran University of Medical Science Joolaee, S. :“The introduction of patients’ rights charter and the approaches to promote observing them in Iran”, Abstracts of the second international conference on Iran medical ethics, Tehran University of Medical Science, 8-9, 2008 Amiri M., Afkar A., : “Perception of Patient Rights in Hospital affiliated to Shahrood University of Medical Sciences”, Journal of Health System, Vol. 1, No. 2, 2009 Nasrabadi, A.N., Joolaee, S., Parsa-Yekta, Z., Bahrani, N., Noghani, F., & Vydelingum, V. (2009). “A new approach for teaching nursing ethics in Iran”. Indian Journal of Medical Ethics, 6(2);85-89. M. Hakan Ozdemi, Akc¸a T. Ergonen, Ersel Sonmez, I. & et al:“The approach taken by the physicians working at educational hospitals in Izmir towards patient rights”, Patient Education and Counseling 61 (2006) 87–91 Cherilyn G, Murer J.D: HCFA focuses on rights - Medical hospitals face new regulation on patient’s right, Rehab Management magazine, May 2000.

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How to cite this article: Loori N, Different Health Care Professional Perspectives of Patients’ Rights Bill in Iran. Iranian Journal of Medical Law 2012; 1(1):62-71.

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