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)

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 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)

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)

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)

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)

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)

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 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)

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)

The aim of this paper is to ponder the intricate issue of the right to die in dignity by focusing attention on the role of the patient's beloved people. I first provide critical examination of some of the arguments advanced by Ronald Dworkin. I proceed by contemplating relevant scenarios and examining three American court decisions: Saikewicz, Spring and Gray. The first case, Saikewicz, concerns a patient who had no family or other beloved people. I observe that this fact (...) had a significant bearing on the court's ruling not to provide him treatment. The second case, Spring, involves a patient whose family wanted to withhold treatment from him. I argue that we should be cautious of incidents in which the best interests of the patient's beloved people come at the expense of the best interests of the patient. Spring is an example of such a case. The third case, Gray, serves as an example whereby the best interests of the patient coincide with the best interests of her beloved people. I conclude by arguing that attention has to be given to the question of whether the patient's close-ones demonstrate a unified position in regard to the destiny of the patient. Gegenstand des Beitrags ist es, das schwierige Problem des Rechts, in Würde zu sterben, im Hinblick auf die Rolle der Personen zu überdenken, die dem Patienten nahestehen. Der Autor setzt sich zunächst kritisch mit einigen von Ronald Dworkin vorgetragenen Argumenten auseinander. Dann stellt er die relevanten Fallgestaltungen dar und untersucht drei Entscheidungen amerikanischer Gerichte: die Fälle Saikewicz, Spring und Gray. Der erste Fall, Saikewicz, betrifft einen Patienten ohne Familie oder andere ihm nahestehende Personen. Dieser Umstand hatte einen wesentlichen Einfluß auf die Entscheidung des Gerichts, von der Anordnung einer Behandlung des Patienten abzusehen. Im zweiten Fall, Spring, wünschte die Familie, daß der Patient nicht behandelt würde. Der Autor mahnt für alle die Fälle zur Vorsicht, bei denen die Umstände so beschaffen sind, daß das wohlverstandene Interesse der Angehörigen und das des Patienten kollidieren. Der Fall Spring ist ein Beispiel für eine solche Kollisionssituation. Der dritte Fall, Gray, dient als ein Beispiel, in dem sich das wohlverstandene Interesse des Patienten und das der ihm nahestehenden Personen decken. Zuletzt geht es um die Frage, ob die Angehörigen und andere dem Patienten nahestehende Personen in ihren Vorstellungen über das weitere Schicksal des Patienten übereinstimmen oder nicht. Die Frage verdient eine besondere Aufmerksamkeit. (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)

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)

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...

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.

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)

Comment on "Patients' Rights: Ethical Questions" by Kate Millett, at The Michigan Psychoanalytic Council, February 15, 1992, Ann Arbor, Michigan.

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)

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: 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 increasing use of digital image recording devices, whether they are digital cameras or mobile phone cameras, has democratised clinical photography in the UK. However, when non-professional clinical photographers take photographs of patients the issues of consent and confidentiality are either ignored or given scant attention.Whatever the status of the clinician, the taking of clinical photographs must be practised within the context of a professional etiquette. Best practice recognises the need for informed consent and the constraints associated with confidentiality. Against (...) the background of the poverty of the current discourse of these issues, as presented during the Valentine GMC Fitness to Practice1 hearing, the paper considers the need for orthopraxy in the use of clinical photography. (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.

Legal standards of disclosure in a variety of jurisdictions require physicians to inform patients about the likely consequences of treatment, as a condition for obtaining the patient’s consent. Such a duty to inform is special insofar as extensive disclosure of risks and potential benefits is not usually a condition for obtaining consent in non-medical transactions. -/- What could morally justify the physician’s special legal duty to inform? I argue that existing justifications have tried but failed to ground such special (...) duties directly in basic and general rights, such as autonomy rights. As an alternative to such direct justifications, I develop an indirect justification of physicians’ special duties from an argument in Kant’s political philosophy. Kant argues that pre- legal rights to freedom are the source of a duty to form a state. The state has the authority to conclusively determine what counts as “consent” in various kinds of transactions. The Kantian account can subsequently indirectly justify at least one legal standard imposing a duty to inform, the reasonable person standard, but rules out one interpretation of a competitor, the subjective standard. (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)

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)