In the past 50 years, ethical concerns concerning human experimentation have arisen with the advancement of new medical research and technology. While the benefits of human experimentation are well known in the fields of biology, psychology, sociology, and medicine, the conditions of human subject research have been persistently controversial. This book discusses ethical perspectives, emerging developments and global challenged of patient rights. Topics include effective medical informed consent; rights to health and dental care; the ethics of HIV (...) screening targeted to the seriously mentally ill; and problems in ethics for medical publication. (shrink)

There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare (...) professionals, regulators and policy makers. We used a qualitative design to examine Swiss healthcare stakeholders’ experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries’ patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients’ rights and citizens’ involvement on the other. The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

Despite recommendations from the Cartwright Report ethical review by health ethics committees has continued in New Zealand without health practitioners ever having to acknowledge their dual roles as health practitioners researching their own patients. On the other hand, universities explicitly identify doctor/research-patient relations as potentially raising conflict of role issues. This stems from the acknowledgement within the university sector itself that lecturer/research-student relations are fraught with such conflicts. Although similar unequal relationships are seen to exist between health researchers and (...) their patients, the patient/subjects are not afforded the levels of protection that are afforded student/subjects. In this paper we argue that the difference between universities and health research is a result of the failure of the Operational Standard Code for Ethics Committees to explicitly acknowledge the vulnerability of the patient and conflict of interests in the dual roles of health practitioner/researcher. We end the paper recommending the Ministry of Health consider the rewriting of the Operational Standard Code for Ethics Committees, in particular in the rewriting of section 26 of the Operational Standard Code for Ethics Committees. We also identify the value of comparative ethical review and suggest the New Zealand's Health Research Council's trilateral relationship with Australia's NHMRC (National Health and Medical Research Council) and Canada's CIHR (Canadian Institute of Health Research) as a useful starting point for such a process. (shrink)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. (...) healthcare professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient (...) rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis. (shrink)

Adherence to ethical principles in clinical research and practice is becoming topical issue in China, where the prevalence of mental illness is rising, but treatment facilities remain underdeveloped. This paper reports on a study aiming to understand the ethical knowledge and attitudes of Chinese mental health professionals in relation to the process of diagnosis and treatment, informed consent, and privacy protection in clinical trials.

This article discusses the rights of patients who are attending hospital for the most common laboratory examinations and who may also be taking part in research studies. A distinction is made between five kinds of rights to: protection of privacy, physical integrity, mental integrity, information and self-determination. The data were collected ( n = 204) by means of a structured questionnaire specifically developed for this study in the clinical chemistry, haematological, physiological and neurophysiological laboratories of one randomly selected (...) university hospital in Finland. The analysis of the data was statistical. On the whole, patients’ rights were realized reasonably well. This was most particularly the case with protection of privacy, as well as with the rights of physical and mental integrity. The rights to information and self-determination were less well realized. There are various steps that health care professionals and organizations can take to make sure that patients can enjoy their full rights, by counselling the patient, by giving opportunities to plan the examinations in advance, and by arranging a sufficient number of small examination rooms. (shrink)

The Helsinki Declaration is a very important document regarding the protection of patients’ rights in clinical trials and one of the fundamental sources of operational principles for every ethics committee. Although they have been updated, the international guidelines for ethics committees continually fail to address certain issues pertaining to the protection of patients’ rights in clinical trials. These issues include, most significantly, the method of electing ethics committees (a free, secret ballot should be preferred to direct appointment), the (...) avoidance of conflict of interest during the election of ethics committee members, and the necessary insurance coverage for the participants of clinical trials. Polish law should, on the other hand, be developed in such way as to not limit the effectiveness of ethics committees in protecting patients’ rights in clinical trials. The ideal solution would be to draft a uniform law concerning not only clinical trials, but all medical experiments. The opinions of experts who have been reviewing medical research projects for several years may prove to be especially valuable in this setting. (shrink)

There is a need to increase the number of practicing medical doctors in South Africa. We examine the ethical implications of patients’ rights being affected in medical education in a South African context.The South African legal framework advocates public healthcare access. Yet, the State’s ethical obligations when it comes to guaranteeing public healthcare access, conflict with its utilitarian policy, that allows for medical education to help achieve the State’s public healthcare commitments, at the cost of eroding patients’ rights, (...) and accepts that certain actions are imperative, in line with Ubuntu, which is tenable yet nuanced. A patient treated by a licenced doctor today, benefits because other patients have allowed themselves to be used as hands-on learning material for medical students yesterday.Healthcare institutions need to take cognisance of the numbers of medical students that patients can reasonably be expected to endure. There is a need for the Health Professions Council of South Africa and medical schools to adopt guidelines on reasonable levels of medical student-patient interaction, and medical student-to-patient ratios in healthcare delivery. (shrink)

Background Ethical behavior of health workers is an important part of health services. The aim of the present study was to determine the relationship between ethics and professional commitment and its relationship with the level of respect for patient rights in medical students. Material & methods A cross-sectional descriptive study was conducted with the participation of nursing, midwifery and emergency medicine students of Ilam University of Medical Sciences. Sampling was done by stratified random method. The data was collected (...) using Demographic, Professional Commitment, Professional ethics and a researcher made questioner on compliance with patient rights questionnaires. Results 300 students were participated. The results showed that the average score of professional ethics in middle school students is high (64.07 ± 8.01), the average score of professional commitment is also high (64.07 ± 8.01) and the score of respect for patient rights is also high (10.74). ± 83.46) was obtained. The professional ethics score it showed a positive and statistically significant relationship with the patient’s rights compliance score. only professional commitment is related to gender, but the average of all three variables in different age groups and the type of residence (dormitory, private home, etc.) have meaningful statistical difference. Conclusion The findings of the study show that the level of ethics and professional commitment and respect for patient rights among nursing, midwifery and emergency medicine students was good. It is hoped that the results of this research will provide a basis for better planning for the development of knowledge and respect for patient rights among students. (shrink)

The aim of this phenomenological research study carried out in Iran was to capture the meaning of patients' rights from the lived experiences of patients and their companions. To achieve this, 12 semistructured interviews were conducted during 2005 in a teaching hospital in Tehran with patients and/or their companions. In addition, extensive field notes were compiled during the interviews. The data were analyzed using Benner's thematic analysis. The themes captured were classified into three main categories, with certain themes identified (...) within each category. The categories were: (1) the concept of patients' rights; (2) barriers to patients' rights; and (3) facilitators of patients' rights. The distinctive themes within each of the categories were identified as: (1a) receiving real care, (1b) focus on the patient, and (1c) equality and accessibility; (2a) dissatisfaction with caregivers, and (2b) specific work environment limitations; (3a) the patient's companion, (3b) a responsible system, and (3c) the public's awareness of rights. Although certain themes identified closely resemble those identified in international patients' bills of rights, the current study focused on themes that are particularly relevant to the Iranian sociocultural context. (shrink)

Despite recommendations from the Cartwright Report ethical review by health ethics committees has continued in New Zealand without health practitioners ever having to acknowledge their dual roles as health practitioners researching their own patients. On the other hand, universities explicitly identify doctor/research-patient relations as potentially raising conflict of role issues. This stems from the acknowledgement within the university sector itself that lecturer/research-student relations are fraught with such conflicts. Although similar unequal relationships are seen to exist between health researchers and (...) their patients, the patient/subjects are not afforded the levels of protection that are afforded student/subjects. In this paper we argue that the difference between universities and health research is a result of the failure of the Operational Standard Code for Ethics Committees to explicitly acknowledge the vulnerability of the patient and conflict of interests in the dual roles of health practitioner/researcher. We end the paper recommending the Ministry of Health consider the rewriting of the Operational Standard Code for Ethics Committees, in particular in the rewriting of section 26 of the Operational Standard Code for Ethics Committees. We also identify the value of comparative ethical review and suggest the New Zealand's Health Research Council's trilateral relationship with Australia's NHMRC (National Health and Medical Research Council) and Canada's CIHR (Canadian Institute of Health Research) as a useful starting point for such a process. (shrink)

In August 2001, the Israeli Ministry of Health issued its Limitation of Smoking in Public Places Order, categorically forbidding smoking in hospitals. This forced the mental health system to cope with the issue of smoking inside psychiatric hospitals. The main problem was smoking by compulsorily hospitalized psychiatric patients in closed wards. An attempt by a psychiatric hospital to implement the tobacco smoking restraint instruction by banning the sale of cigarettes inside the hospital led to the development of a black market (...) and cases of patient exploitation in return for cigarettes. This article surveys the literature dealing with smoking among psychiatric patients, the role of smoking in patients and the moral dilemmas of taking steps to prevent smoking in psychiatric hospitals. It addresses the need for public discussion on professional caregivers’ dilemmas between their commitment to uphold the law and their duty to act as advocates for their patients’ rights and welfare. (shrink)

The Patient's Charter has been in effect for nearly five years. This article considers the purpose and value of the document through a comparison with the New Jersey Patient Bill of Rights. Patient rights statements have been posted in American hospitals for more than twenty years. However, the New Jersey document and the patient rights programme it established seven years ago, have proven to be economically effective, successful in their representation of patients and (...) enforceable, due to the adoption of state legislation and regulation to oversee the process. Several examples of how the programme works are included in the comparison, with a similar review of The Patient's Charter. In the comparison the author argues that for the programme to succeed as it has done in New Jersey, the government will need to develop legislative backing to ensure enforcement, and an efficient system for monitoring compliance. The programme will need to become credible in the eyes of the health service user. The author suggests this may be best achieved by developing an efficient, accessible and user-friendly means of redress, should the patient consider his or her rights have been violated. A "mish-mash" of quality assurance standards and levels of care which patients can "expect" from the health service providers only serves to distract the health service user from the government's failure to commit the resources that would empower the patients rights portion of The Patient's Charter. (shrink)

The author examines the ethical underpinnings of the Professional Standard Review Organizations. Four normative problems are explored in order of their importance: the problem of bureaucracy incapable of responding sensitively to individual cases; the problem of cost consciousness overcoming the commitment to quality; the problem of commitment to highest quality interfering with other social values and goals; and the problem of value judgments being made by professionals rather than patients whose rights and interests are most directly at stake. Though (...) physicians may indeed be able to balance qualitative and cost considerations with prudence, they, nevertheless, approach medical problems with their own value system. Deciding between marginal health care and alternative courses with a given amount of funds involves subtle value judgments that will vary depending on the value systems of the decision-makers. Because of their unique composition, PSROs cannot adequately reflect the social consensus about what constitutes a reasonable limit to health care. (shrink)

BackgroundAlthough the Covid-19 epidemic challenged existing medical care norms and practices, it was no excuse for unlawful conduct. On the contrary, legal compliance proved essential in fighting the pandemic. Within the European legal framework for the pandemic, patients were still entitled to be treated equally, by a specialized physician, with the possibility of seeking a second medical opinion, in a confidential setting, following prior and informed consent. This study examines physicians’ practices regarding patients’ rights during the Covid-19 pandemic and (...) the effects of age, experience, and specialty on physicians’ behavior and preferences. Additionally, it explores the nexus of malpractice complaints, malpractice fear, and legal compliance.MethodsA cross-sectional study was conducted on a convenience sample of attending physicians and general practitioners to assess compliance with patients’ rights regulations. Respondents were physicians practicing in private and public settings in Southwestern Romania from July 2021 to May 2022.Results396 attending physicians and 109 general practitioners participated in the research. Attending physicians acknowledged patients’ rights in 55.7% of statements, while general practitioners showed a slightly higher level of compliance at 59.9%. Emergency and Anesthesia and Intensive Care physicians showed the lowest compliance. There were no significant behavioral differences based on physicians’ age, years in practice, work sector, or location. However, when faced with the question of prioritizing treatment for patients with similar medical conditions, 46.2% of attending physicians reported favoring the younger patients. This preference was common among physicians under 39. Additionally, over half of the attending physicians reported working outside their area of expertise due to staff shortages. Malpractice fear was high among physicians, although unrelated to patients’ claims, legal compliance, or working outside the scope of practice. It resulted in pressure and behavioral changes.ConclusionAdherence to patients’ rights was low during the Covid-19 pandemic. Physicians could benefit from educational and administrative support to ensure better legal compliance. Further research is needed to determine if this behavior persists beyond the pandemic context. (shrink)

The nurse asks the ethics consultant what can be done to stop the patient’s blogging. R.J.’s messages on the public forum are taking their toll on the care environment and the health care providers...

This point of view compares the issue of informed patient consent primarily as it operates in Australia and the United Kingdom. It affords an overview, also, of the applicable law in the United States and Canada. It particularly focuses on the legal test to be applied to patient consent as established in the Bolam case in the United Kingdom. The case, following its approval by the House of Lords, holds that the negligent standard in patient consent situations (...) is to be determined, in cases of dispute, in accordance with standards as viewed by a proper body of competent medical practitioners. By contrast, the law in the United States is premised on the notion of the fundamental right of patients to determine what should or should not be done with their own bodies. In Australia the Bolam test has been rejected by the High Court of Australia following earlier decisions in the State Supreme Courts. The Australian courts did not accept that the setting of standards by the medical profession was an acceptable way of determining the entitlements of a patient who has suffered harm. The author places this discussion in the context of greater community awareness of medical procedures, the heightened accountability of professionals and the increasing practice of having a substantial patient input into medical decisions. He also suggests that the differing social and professional attitudes to authority and fundamental rights to be found between Australia and the United Kingdom have influenced the outcome of the cases in the higher courts of both countries. He suggests that the Bolam test is an illustration of the tendency of authority in the United Kingdom to believe that 'Nanny know best'. (shrink)

Background: Promoting patients’ rights is essential for defining the standards of clinical services within a country. Given their responsibilities, nurses can be the primary target for research to investigate the issue of patients’ rights within a healthcare system. As such, assessing the knowledge of nurses about patients’ rights is an essential step toward improving the quality of healthcare in limited resource settings like Sudan. Objectives: We aimed to assess the level of knowledge about patients’ rights among (...) the nursing staff at Friendship Teaching Hospital in Sudan. Methods: This hospital-based cross-sectional study was carried out at the Friendship Teaching Hospital in Sudan. We surveyed the totality of nurses (95) at the hospital using an amended survey. The data were analyzed in SPSS software using descriptive and inferential statistics. Ethical consideration: The study was approved by the Research Unit of Khartoum Ministry of Health and the Hospital administration. All respondents gave verbal consent prior to participating in the study. Results: Only 48.4% of the participants knew about the existence of the Sudanese Charter of patients’ rights. Nonetheless, our analysis found that 65.8% of nurses had acceptable level of knowledge (scored more than 75% of the total knowledge score) of patients’ rights, and none of the participant scored less than 50% of the total knowledge score. Finally, we found no statistical association between the knowledge score and demographic data, educational level, whether the participant knows about the existence of the Charter or not and a number of other factors. Conclusion: Nurses’ lack of knowledge about the existence of the Sudanese Charter of patients’ rights adopted in 2009 rights confirms the need for further efforts by Ministry of Health to promote the document. Furthermore, further research is needed to investigate the disconnect between nurses’ lack of knowledge about the existence of the charter and their awareness of the rights within the charter as well as the actual implementation of rights. (shrink)

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. (shrink)

Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals. A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered (...) questionnaire. The association between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables. Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18–30 years and 46–60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent. Our findings underscore global gaps in ensuring adequate patients’ rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide. (shrink)

The discussion of patients' rights in Japan began in 1968 when a surgeon was accused of violating a potential organ donor's right to life by arbitrarily employing brain-based criteria in the determination of his death. A proliferation of documents that articulate and endorse patients' rights occurred in the 1980s and early 1990s. The doctrine of informed consent, which has been a central aspect of the movement toward patients' rights, is increasingly recognized in Japan, although importance rarely has (...) been attached to the element of the patient's "appreciation" of the information disclosed by the physician, much less to the "voluntariness" of the patient's decision. Nevertheless, recent court decisions indicate progress both in the acceptance and the understanding of the doctrine in Japan. (shrink)

August 2006 marked the 10th anniversary of landmark legislation when Israel’s parliament passed the unique Patient’s Rights Law. This law underscores the importance of medical ethics in Israeli society. During a seminar at the Shaare Zedek School of Nursing, third-year students performed a qualitative research study investigating ethical issues arising in the field of nursing, and how nursing staff dealt with these issues in relation to the law. The research was conducted using semistructured questionnaires. The results showed that (...) the staff participants knew the law, but did not differentiate between legal and ethical problems. The establishment of a framework for dealing with these issues would help to promote professional ethics, encourage broad-based agreements related to ethical decisions, reduce ethical conflict, and increase implementation of the law on patients’ rights. (shrink)

The purpose of this study was to examine patients' rights in Finnish hospitals from the patients' own points of view. In 1993, a new Act on the status and right of patients in health care came into force. In this Act patients' rights are divided into three categories: the right to good health care, the right to be informed, and the right to self-determination and participation. These same categories of rights were used in this empirical investigation during (...) 1993, in which a questionnaire was answered by 204 patients in two Finnish hospitals. The results indicate that Finnish hospital patients do not know enough about their rights. Information seems to be one of the most problematic areas for hospital patients. The study will be repeated in five years' time. (shrink)

Background: Patients’ rights are universal values that must be respected; however, it is not easy to put such values and principles into effect as approaches and attitudes differ from individual to individual, from society to society, and from country to country. If we want to reach a general conclusion about the status of patient rights in the world as whole, we should examine the situation in individual countries. Objective: To study the effect of training sessions for nurses (...) about patients’ rights on the perceptions of nurses and patients in two Egyptian hospitals. Methods: Quasi-experimental with pre- and posttest design was used in this study. Two groups of participants were included in the study: the first with 97 nurses and the second with 135 patients. A questionnaire sheet was used for nurses and patients to assess their perceptions about patients’ rights before starting sessions. The training sessions were developed based on the baseline information gathered in the assessment phase and related literature. After the implementation of the sessions, a posttest was immediately conducted for nurses, while for patients the posttest was conducted 1 month after implementation to evaluate the effect of the nurses’ training sessions on the patients’ perceptions. The same tools were used in pretest and posttest. Ethical considerations: Written approval was sought and obtained from the administrators of the studied hospitals prior to conducting the study. Oral consent was obtained from nurses and patients willing to participate. Confidentiality and anonymity of the participants were strictly maintained through code numbers on the questionnaires. Results: The improvement in nurses’ knowledge and perceptions about patients’ rights after implementation of the training sessions was remarkable. Moreover, an improvement in patients’ perceptions regarding their rights was reported. Conclusion: Repetition of the training sessions is suggested to achieve continuous improvement. Provision of posters and booklets about a bill of patient rights within the hospitals and conduction of further study to examine nurses’ performance and patients’ satisfaction based on code of ethics are recommended. (shrink)

Background: Nurses have always been known as an advocate for the rights of patients. The recognition of what is perceived as the violation of patients’ rights can help nurses to understand patients’ concerns and priorities. Thus, it helps nurses play their supportive roles more effectively. Objective: The aim of this study was to explore different dimensions of the violation of patients’ rights. Research design: Data were collected utilizing unstructured interviews and field notes. Data analysis was conducted using (...) the qualitative content analysis approach. Prolonged engagement, maximum variation sampling, and member check were among the factors which enriched the research. Participants and research context: The sample consisted of 18 patients and 11 members of their families. They were purposively selected from two hospitals in Tehran during 2009–2012. Ethical considerations: The research was approved by the Ethics Committee of the university and hospitals. Finding: The patients’ rights were violated in a variety of ways. There were three main dimensions to this issue: (a) care recession including deprivation of the caregiver’s presence and the delay/lack of needed responses; (b) receiving mechanical care including superficiality, lack of emotion, and failure to understand the situation; and (c) being disrespected including humility and aggression. Conclusion: The patients and their families consider any shortcomings in relation to the patient and the quality of care as the violation of the rights. The findings of the study imply sensitizing managers toward providing appropriate conditions as well as educating nurses to observe patients’ rights. It is suggested that the processes leading to the violation of patients’ rights be discovered and prevented in the future. (shrink)

Objective The aim of this study was to examine the development of the implementation of patient rights and the practical course of patient rights legislation in Edirne, as well as the verbal and written applications to relevant departments between 2004 and 2008. Methods The present study was a descriptive, retrospective and cross-sectional study. The data of the study were obtained by retrospectively reviewing records of written complaints to patient rights units and on-site solutions between (...) 2004, the year of establishment of these units, and 2008. Results The incidence of written and verbal complaints were calculated to be 23.1 in 100 000 and 137.9 in 100 000, respectively. The increase was 102.2% for on-site solutions, whereas it was calculated as 97.8% for written applications. It was noticed that the rate of violation judgements was high (42.5% (17/40)) in the first year the Edirne State Hospital patient rights committee was established. Conclusions Possible problems encountered during the presentation of health services can be solved by the implementation of patient rights under the legislative guarantee. The implementation of patient rights should be considered as reflections of a socialised government on health services. (shrink)

Background: Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual. Objectives: The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway’s renamed and revised Patients’ and Service Users’ Rights Act (originally Patients’ Rights Act, 1999) and published (...) comments which accompanying this legislation from the Norwegian Ministry of Health and Care Service. Research design: A constructivist design was used, and Fairclough’s critical discourse approach was adopted to analyze the text of the Patients’ and Service Users’ Rights Act and comments. Findings: The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients’ trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as “troublesome.” Conclusion: Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient. (shrink)

The aim of this project was to study the way in which patients’ rights are being exercised in everyday hospital practice in Greece. Data were collected by using questionnaires and structured interviews with 600 patients. These patients were found to ignore the fact that special regulations exist regarding their rights. They considered their right to information was being respected, albeit to different degrees. Many patients allowed their doctors to make decisions. The right to confidentiality was not considered as (...) a major priority by these patients because they doubted its applicability. They hesitated to protest when their rights were being violated. They thought that the most effective way of protecting their rights is either through the existence of someone with specialized knowledge or an internal hospital committee. These Greek patients appeared to be relatively satisfied with the way in which their rights were being exercised in hospital. However, a number of improvements could increase patient satisfaction regarding this issue. (shrink)

This thoroughly updated third edition lays a solid foundation for understanding the intersection of law, ethics and the rights of the patient, in the context of everyday nursing and health care practice.

Introduction Respecting the Patients’ Rights Charter leads to the demands of patients for their rights and the response of rehabilitation therapists by increasing their compliance. The present study aimed to compare the views of patients and rehabilitation therapists about the importance and extent of compliance with the Patients’ Rights Charter. Methods This cross-sectional study was conducted for 3 months on 114 patients and 55 therapists who were selected using the convenience sampling method. The data collection tools included (...) a demographic information form and the Justification and Practice of Patient Rights Questionnaire. The collected data were analyzed using descriptive statistics, independent t-test, paired t-test, and Pearson correlation coefficient. Results Mean scores of the importance of compliance with the Patients’ Rights Charter were 2.21 ± 0.40 and 2.31 ± 0.43 in the group of patients and therapists, respectively. Moreover, the mean scores of compliance with the Patients’ Rights Charter were 1.45 ± 0.48 and 1.53 ± 0.61 from the perspective of patients and therapists, respectively. There was no statistically significant difference between the views of patients and therapists on the importance and extent of compliance with the Patients’ Rights Charter. Discussion and Conclusion The importance of respecting the Patients’ Rights Charter from the perspective of patients and therapists was at a desirable level while the level of compliance with it from the perspective of both groups was moderate. It seems that more research is needed to explain the causes of this discrepancy and increase compliance with the Patients’ Rights Charter in rehabilitation clinics. (shrink)

BackgroundThe European Charter of Patients' Rights (ECPR) presents basic patients' rights in health care. We analysed the characteristics of patients' complaints about their rights submitted through the official complaints system and to a non-governmental organization in Croatia.MethodsThe official system for patients’complaints in Croatia does not have a common pathway but offers different modes for addressing patient complaints. In this cross-sectional study, we analysed the reports about patients’ complaints from the official regional committees sent to the Ministry (...) of Health. We also analysed the complaints received by the Croatian Association for the Protection of Patient’s Rights (CAPR) and mapped them to the ECPR.ResultsThe aggregated official data from the Ministry of Health in 2017 and 2018 covered only 289 individual complaints from 10 out of 21 counties. Complaints were most frequently related to secondary and tertiary healthcare institutions and details were not provided. CAPR received a total of 440 letters, out of which 207 contained 301 complaints about violations of patients’ rights in 2017–2018. The most common complaint was the Right of Access to health care (35.3%) from the ECPR, followed by the Right to Information (29.9%) and the Right to Safety (21.7%). The fewest complaints were about the Right to Complain (1.9%), Right to Innovation (1.4%), Right to Compensation (1.4%), and Right to Preventive Measures (1.0%).ConclusionsReporting and dealing with patients’ complaints about violations of their patients’ rights does not appear to be effective in a system with parallel but uncoordinated complaints pathways. Mapping patient's complaints to the ECPR is a useful tool to assess the perception of patients’ rights and to plan actions to improve the complaints system for effective health care. (shrink)

The Clinical ethics centre in Paris offers its services equally to doctors and patients/proxies. Its primary goal is to re-equilibrate doctor–patient roles through giving greater voice to patients individually in medical decisions. Patients are present at virtually all levels, initiating consults, providing their point of view and receiving feedback. The implications of patients' involvement are threefold. At an operational level, decision-making is facilitated by repositioning the debate on ethical grounds and introducing a dynamic of decisional partnership, although contact with (...) patients can make it difficult to deny their demands and set the limits of our role. Ethically, it reinforces patients' autonomy and grants them a place of veritable ethics ‘actors’, with the danger that this may become excessively autonomy oriented. Finally, at a collective level, the programme fulfils its political purpose in promoting patients' rights and the ideal of démocratie sanitaire, but complicates balancing individual demands with collective values. (shrink)

Objectives: The aim of this study is to evaluate the views of cancer patients on patient rights in the context of the right to information and autonomy according to articles related to the issue in the “Patient Rights Regulation”. Methods: The research was conducted among cancer patients in the medical oncology department of a research and practice hospital using a random sampling method between June and September 2005. Data were collected during face-to-face interviews using a questionnaire. (...) Results: There was a high rate of positive response to the items that the patients have the right to be informed (86.5%), that the physician should inform the patient on the diagnosis and the treatment (92.3%) and that the physician is obliged to inform the patient (76.9%). Only 43.3% of the patients stated that the patient has the right to refuse the treatment recommended by the physician. The participants mostly agreed that the patient should participate in decisions about the treatment and that patient consent should be given (78.8%). Conclusions: There are extensive efforts in Turkey towards making patient rights a significant supportive component of health services. For patient rights to become a natural part of medical practice it is necessary to give priority to education of both patients and physicians about patient rights and to lay emphasis on an ethical approach in the patient–physician relationship. (shrink)

Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements (...) are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent—in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements—from an ethical standpoint—of the recently reformed Swiss policy on cancer registration. (shrink)

The ability to differentiate between what is just and what is unjust may be considered as the precondition to demand one's own rights. Starting from this point, this research was carried out to describe the level of awareness of patients concerning their rights. The main hypothesis was: the higher the socioeconomic and cultural level of patients, the higher is their awareness of their rights. This research was conducted in one of the state hospitals in Turkey in 1998. (...) It is a descriptive study carried out on 128 inpatients in medical and surgical wards. The data were collected by a questionnaire, which included questions on the rights of patients and gave sample cases. The sample cases were designed by referring to the World Health Organization Declaration on the Promotion of Patients' Rights in Europe. Only 23% of the participants were able to recognize patient rights, while 32% could not; the majority (45%) were undecided in recognizing patient rights. The awareness scores were statistically significantly different for educational level categories (F = 5.84; p<0.001). A continuously declining trend was observed for patient rights awareness scores from the highest educational level to the lowest. This partly proves the hypothesis of the research. However, the awareness scores were not significantly different for the other background variables (p>0.05). Most strikingly, 38% of the patients had no idea about their diagnosis and 63% of those who had undergone surgery did not know why they had had the operation. (shrink)

The current concern with reforming and regulating managed care under the general rubric of “patients' rights” has eclipsed the more fundamental need to legislate the human rights of those without adequate access to any healthcare. To characterize the regulatory activity as a “rights” movement inflates its moral dimension. The concept of “rights” carries a serious and powerful moral force that is currently inappropriately applied to the parochial concerns of a segment of the population privileged to have (...) health insurance coverage. By contrast, the language of “rights” refers to a high level of universality for the most rudimentary of human concerns. If there was a universal right to become a patient equal to other patients, a concept of patients' rights would have legitimacy. As it is, however, the central determinant of this “right” is how much the insurance policy costs and what is covered. To so diminish the meaning of “right” within the miasma of managed care is to lose sight of the real possibilities of applying a positive “right” to healthcare and, in the long run, is to diminish the ethics of healthcare. (shrink)

This article describes our efforts to screen and enrol clinical trial participants conscientiously in the COVID-19 pandemic setting. We present the standard screening and enrolment process prior to, and our process of adapting to, the pandemic. Our goal was to develop a way to screen and enrol people for clinical trials that was both equitable and effective. In addition, we outline the steps our research department took to ensure that ethical, clinical and logistical factors were considered when matching a (...) class='Hi'>patient to a clinical trial. (shrink)

Advance health care directives and informed consent remain the cornerstones of patients' right to self-determination regarding medical care and preferences at the end-of-life. However, the effectiveness and clinical applicability of advance health care directives to decision-making on the use of life support systems at the end-of-life is questionable. The Uniform Anatomical Gift Act (UAGA) has been revised in 2006 to permit the use of life support systems at or near death for the purpose of maximizing procurement opportunities of organs medically (...) suitable for transplantation. Some states have enacted the Revised UAGA (2006) and a few of those have included amendments while attempting to preserve the uniformity of the revised Act. Other states have introduced the Revised UAGA (2006) for legislation and remaining states are likely to follow soon. (shrink)

The progress the Internet has experienced in recent years has brought about huge changes and social transformation in all aspects of our lives. One such aspect greatly impacted has been our health, where we can talk about the existence of an ‘Internet of Medical Things’. Amid this digital drift, we have seen the development of pharmaceutical drugs that provide information to patients and their attending healthcare teams concerning medication, doses ingested, and time of ingestion. These are digital pills or digital (...) medication. In this context, the purpose of my paper is to analyze the ethical and legal impact of digital medication, further analyzing the implications concerning the right of service users to make decisions over their own health in Spain. (shrink)