It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

BackgroundHuman embryonic stem cells as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson’s disease. Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.ObjectiveTo Investigate the perspectives and concerns of patients (...) with PD, patients being the directly concerned stakeholders in the ethical discussion.MethodsQualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.ResultsThe participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important. (shrink)

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in (...) care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: active participants, patients giving active consent, and patients giving passive consent to medical decisions. (shrink)

This article reveals a 91-year-old cognitively intact man’s lived experiences of being cared for in a geriatric context in which the majority of the patients were cognitively impaired. A narrative patient story was analysed phenomenologically. The findings indicate that this patient’s basic needs for ethical care were not met. The staff did not see him as a unique individual with his own preferences, resources and abilities to master his life. In order to survive this lack of ethical care, he played (...) the role of an ‘old cognitively impaired man’, which provided him with at least the understanding and attention the cognitively impaired patients received from the staff. The findings also indicate that ethical care is independent of whether or not older cognitively intact and impaired patients stay or live in the same unit, but it is more dependent on a caregiver’s ability to respect and confirm each and every patient for who he or she is and would like to be. (shrink)

Background Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patient programs. The views and experiences of patients with unmet medical needs regarding unapproved, investigational drugs have not yet been examined empirically. Methods In this qualitative study, exploratory interviews and focus groups were held with patients with chronic or life-threatening diseases, about topics related to non-standard treatment options, such as the search (...) for non-standard treatment options, patients’ views of the moral obligations of doctors, and the conditions under which they would or would not wish to use non-standard treatment options, including expanded access to unapproved, investigational drugs. Results Respondents had very little knowledge about and/or experience with existing opportunities for expanded access to investigational drugs, although some respondents were actively looking for non-standard treatment options. They had high expectations of their treating physicians, assuming them to be aware of non-standard treatment options, including clinical trials elsewhere and expanded access programs, and assuming that they would inform their patients about such options. Respondents carefully weighed the risks and potential benefits of pursuing expanded access, citing concerns related to the scientific evidence of the safety and efficacy of the drug, side effects, drug-drug interactions, and the maintaining of good quality of life. Respondents stressed the importance of education and assertiveness to obtain access to good-quality health care, and were willing to pay out of pocket for investigational drugs. Patients expressed concerns about equal access to new and/or non-standard treatment options. Conclusion When the end of a standard treatment trajectory comes into view, patients may prefer that treating physicians discuss non-standard treatment options with them, including opportunities for expanded access to unapproved, investigational drugs. Although our respondents had varying levels of understanding of expanded access programs, they seemed capable of making well-considered choices with regard to non-standard treatment options and had realistic expectations with regard to the safety and efficacy of such options. Dutch patients might be less likely to fall prey to false hope than often presumed. (shrink)

Objectives: To develop and pilot a questionnaire based assessment of the importance patients place on medical confidentiality, whether they support disclosure of confidential information to protect third parties, and whether they consider that this would impair full disclosure in medical consultations.Design: Questionnaire administered to 30 consecutive patients attending a GP surgery.Results: Overall patients valued confidentiality, felt that other patients might be deterred from seeking treatment if it were not guaranteed, but did not think that they would withhold information for this (...) reason themselves.Conclusions: When presented with brief details of five clinical situations in which a breach of confidentiality might be considered, a clear majority of subjects believed that doctors should disclose information in two of the situations, but subjects were not confident that doctors would do so. In three situations, about half felt that disclosure was justified—these included the only scenario in which disclosure was clearly mandated by statute. There was little change in patients’ general attitude to confidentiality after considering the scenarios. However, the views expressed were often inconsistent with responses to the clinical scenarios, suggesting that complex opinions were not accurately reflected in the responses. The format of the questionnaire has been amended, and the study will be repeated with other groups of patients. (shrink)

Background: There is a shortage of reports on what potential recipients of implantable cardioverter–defibrillators need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD.Aims: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment.Patients and methods: A qualitative content analysis of semistructured interviews was used. The study (...) population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation.Setting: The study was performed at Sahlgrenska University Hospital, Göteborg, Sweden.Results: None of the respondents had discussed the alternative option of receiving treatment with anti-arrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors’ recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD.Conclusions: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing (...) patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.

Background In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors influence (...) nursing students' perceptions of advocating for patient’s interests? Research design Qualitative descriptive research using thematic analysis. Participants and research context Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient’s best interests. (shrink)

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from the principle (...) that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. (shrink)

Personalized medicine aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs. Semi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach. The PIO representatives (...) supported the realization of PM but feared that many financial, structural and organizational challenges may delay its realization. They encouraged strategies to modernize drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. Notably, they emphasized the importance of developing PM in an equitable way and taking into consideration the patients’ needs, values and personal situation. Despite varying levels of awareness regarding PM, the PIO representatives expressed willingness to engage in the PM agenda and recommended that PIOs work closely with policy-makers to design PM in a way that truly addresses the needs and concerns of patients. PIOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between PIOs, researchers, drug developers and health care authorities. (shrink)

Background: Despite the expansion of ethics consultation services, questions remain about the aims of clinical ethics consultation, its methods and the expertise of those who provide such services.Objective: To describe physicians’ expectations regarding the training and skills necessary for ethics consultants to contribute effectively to the care of patients in intensive care unit .Design: Mailed survey.Participants: Physicians responsible for the care of at least 10 patients in ICU over a 6-month period at a 921-bed private teaching hospital with an established (...) ethics consultation service. 69 of 92 eligible physicians responded.Measurements: Importance of specialised knowledge and skills for ethics consultants contributing to the care of patients in ICU; need for advanced disciplinary training; expectations regarding formal-training programmes for ethics consultants.Results: Expertise in ethics was described most often as important for ethics consultants taking part in the care of patients in ICU, compared with expertise in law , religious traditions , medicine and conflict-mediation techniques . When asked about the formal training consultants should possess, however, physicians involved in the care of patients in ICU most often identified advanced medical training as important.Conclusions: Although many physicians caring for patients in ICU believe ethics consultants must possess non-medical expertise in ethics and law if they are to contribute effectively to patient care, these physicians place a very high value on medical training as well, suggesting a “medicine plus one” view of the training of an ideal ethics consultant. As ethics consultation services expand, clear expectations regarding the training of ethics consultants should be established. (shrink)

Robert Veatch has proposed a model of the doctor-patient relationship that has as its foundation the sharing of values between the doctor and the patient. This paper uses qualitative research conducted with six doctors involved in the long term, specialised care of HIV positive patients in South Australia to explore the practical application of Veatch’s value sharing model in that setting. The research found that the doctors in this study linked “values” with sexual identity such that they defined value sharing, (...) in part, as a shared set of values and beliefs about sexual identity and practices. They voluntarily identified themselves as either homosexual or heterosexual and they regarded the relation between their own sexual identity and that of their patients as important for the provision of quality care. None of the doctors thought that value sharing, in the way they defined it, was essential to the clinical relationship, but the homosexual doctors attributed a greater degree of importance to it than their heterosexual colleagues. (shrink)

The way Cambodian patients and health professionals judge the priority of HIV-infected patients in relation to the allocation of antiretroviral drugs was examined. Participants were either HIV-infected patients attending the HIV/AIDS Care and Support Centre for People Living with HIV/AIDS in Phnom Penh (29 females and 21 males) or members of the staff (9 physicians, 6 pharmacists and 15 health counsellors and health educators). They were presented with stories of a few lines depicting a patient's situation and were instructed to (...) judge the extent to which the patient should be given priority for HIV drugs. The stories were composed according to a four within-subject factor design: (a) the patient's family responsibilities, (b) the severity of infection, (c) the time elapsed since the first consultation, and (d) the financial difficulties of the family. Most patients expressed the view that the drugs should be used for the patients who are most important from a familial point of view, namely, when the family contains small children and/or is already in a precarious financial condition. (shrink)

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in (...) the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume. (shrink)

Recent media articles have stirred controversy over anecdotal reports of medical students practising educational pelvic examinations on women under anaesthesia without explicit consent. The understandable public outrage that followed merits a substantive response from the medical community. As medical students, we offer a unique perspective on consent for trainee involvement informed by the transitional stage we occupy between patient and physician. We start by contextualising the role of educational pelvic examinations under anaesthesia (EUAs) within general clinical skill development in medical (...) education. Then we analyse two main barriers to achieving explicit consent for educational pelvic EUAs: ambiguity within professional guidelines on how to operationalize ‘explicit consent’ and divergent patient and physician perspectives on harm which prevent physicians from understanding what a reasonable patient would want to know before a procedure. To overcome these barriers, we advocate for more research on patient perspectives to empower the reasonable patient standard. Next, we call for minimum disclosure standards informed by this research and created in conjunction with students, physicians and patients to improve the informed consent process and relieve medical student moral injury caused by performing ‘unconsented’ educational pelvic exams. (shrink)

OBJECTIVE: To ascertain attitudes to different methods of obtaining informed consent for randomised clinical trials (RCTs). DESIGN: Structured interviews with members of the public, medical secretaries and medical students. SETTING: The public were approached in a variety of public places. Medical secretaries and students were approached in their place of work. SUBJECTS: Fifty members of the public, 25 secretaries and 25 students. MAIN OUTCOME MEASURES: Views on RCTs were elicited, with particular emphasis on how subjects thought the concept of (...) randomisation should be explained. Each participant was presented with descriptions of proposed clinical trials and asked to select his or her preference from a range of options. RESULTS: Written information was preferred over verbal information in 91% of replies. Most respondents (86%) would prefer to sign a consent form. Of the seven statements explaining randomisation, a significant difference was found in favour of explanations that were less explicit about the play of chance (ANOVA; p = 0.0004). Eighty-three per cent of participants thought that randomised trials were morally acceptable when there was no prior medical preference between treatments. However, over half (55%) thought they would find it upsetting to be offered entry in such a trial and a quarter thought the outcome of treatment might be adversely affected. CONCLUSIONS: Our results offer some support for the idea that "economy with truth" is less unsettling than a frank description of the stark reality of what randomisation means. It is a matter of debate as to whether, if we are correct, autonomy should have precedence over beneficence. The offer of entry in a clinical trial is likely to affect the experience of care for many people, especially if the process of randomisation is described explicitly. Potential participants should be given a detailed written explanation of the rationale for the trial and be asked to sign a consent form if they agree to take part. (shrink)

BackgroundPatient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients’ trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of patient-centred (...) care among doctors in the Chinese public hospitals.MethodsA quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China.ResultsIn total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes.ConclusionThe study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals. (shrink)

In todays’ super-diverse societies, communication and interaction in clinical encounters are increasingly shaped by linguistic, cultural, social and ethnic complexities. It is crucial to better understand the difficulties patients with migration background and healthcare professionals experience in their shared clinical encounters and to explore ethical aspects involved. We accompanied 32 migrant patients during their medical encounters at two outpatient clinics using an ethnographic approach. Overall, data of 34 interviews with patients and physicians on how they perceived their encounter and which (...) difficulties they experienced are presented. We contrasted the perspectives on the difficult aspects and explore ethical questions surrounding the involved issues. Patients and physicians describe similar problem areas, but they have diverging perspectives on them. Two main themes were identified by both patients and physicians: >patients’ behaviour in relation to doctors’ advice relationship issues<. A deeper understanding of the difficulties and challenges that can arise in cross-cultural settings could be provided by bringing together healthcare professionals’ and patients’ perspectives on how a cross- cultural clinical encounter is perceived. Ethical aspects surrounding some of the difficulties could be highlighted and should get more attention in clinical practice and research. (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)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy.Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm (...) patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability.Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure.Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. (shrink)

BackgroundPatient autonomy is a fundamental, yet challenging, principle of professional medical ethics. The idea that individual patients should have the freedom to make choices about their lives, including medical matters, has become increasingly prominent in current literature. However, this has not always been the case, especially in communist countries where paternalistic attitudes have been interwoven into all relationships including medical ones. Patients’ expectations and the role of the doctor in the patient-physician relationship are changing. Croatia, as a transitional country, is (...) currently undergoing this particular process.MethodsQualitative research was conducted by means of six focus group discussions held in the years 2012 and 2013 in Croatia. Focus groups were held separately with each of the following: first year and final year medical students, physicians engaged in medical ethics education, physicians practicing in a clinical hospital, family medicine residents and individuals representing patients with chronic disease. This research specifically addresses issues related to patient autonomy, in particular, the principles of truth telling, confidentiality, and informed consent. All focus group discussions were audio taped and then transcribed verbatim and systematized according to acknowledged qualitative analysis methods.Results and discussionPatient autonomy is much more than a simple notion defined as the patient’s right to make treatment decisions independently. It has to be understood in context of the broader socio-cultural setting. At present, both patients and medical doctors in Croatia are increasingly appreciating the importance of promoting the principle of autonomy in medical decision-making. However, the current views of medical students, physicians and patients reveal inconsistencies.Conclusions Knowing how to respect the various facets of patients’ autonomy should be part of physician’s professional duties, and also be reflected in his or her core clinical competencies. For this reason greater importance should be dedicated to patient autonomy issues in medical education in Croatia. (shrink)

Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. A three-round Delphi survey was conducted with a panel of early-career researchers involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. The study (...) was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges. Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds. The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research ; 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism. While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise. (shrink)

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)

The ‘Standard View’ regarding computer-based medical diagnostic decision support programs is that, while such systems may be useful adjuncts to human decision-making, they cannot replace human diagnosticians. Mazoué (1990) disputes this viewpoint. He notes that human diagnosis is prone to a variety of errors, and claims that the processes of data collection for diagnosis and the intellectual task of making a diagnosis are independent. Mazoué believes that recent progress in computer-based diagnosis has been encouraging enough to consider the concept of (...) “human-assisted computer diagnosis”. This commentary explains why the Standard View should remain standard. Diagnosis is a complex process more involved than producing a nosological label for a set of patient descriptors. Efficient and ethical diagnostic evaluation requires a broad knowledge of people and of disease states. The state of the art in computer-based medical diagnosis does not support the optimistic claim that people can now be replaced by more reliable diagnostic programs. (shrink)

After a unilateral focus on medical professional obligations to patients in most of the 20th century, there is a growing, if modest, interest in patient responsibility. This article critiques some public assertions, explores the ethics literature, and attempts to find some consensus and moral grounds for positions taken on the question, "Does a patient have moral obligations in the process of interactions with medical and other professional caregivers?" There is widespread agreement on a few responsibilities, such as "truth telling" and (...) "avoiding harm to others," but no apparent consensus either on the list of duties or on the appropriate justification for such duties. The context and clinical realities of patient interactions are noted to suggest that feasibility is important in making judgments of patient obligations. (shrink)

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called (...) early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care. (shrink)

This paper concerns the difficulties of imagining the subjective point of view of another human being, and the relevance of these difficulties to medical decisions. It explores especially the difficulties of imagining the experience of the mentally impaired, and examines several standards for decision-making: the 'prior expressed wishes standard', the 'substituted judgement standard', and the 'best interests standard'.

An important role for all health care professionals is to be an advocate for their patients, and there is no question that many patients need advocacy to reach their health care goals. The role of advocate takes many forms, but one is to speak up when one is concerned for the safety or well‐being of a patient. A nurse is often the member of a health care team most likely to notice changes that might signal problems or poor responses to (...) treatment. The duty of the nurse is to speak up in a timely and urgent manner when the nurse believes—or fears—that the patient's safety may be at risk. Yet the role of nurses as advocates for their patients has assumed near‐mythic status. Rather than seeing advocate as one among many equally important and interrelated professional roles, the nurse, when asked, “Who are you?” is likely to give the heartfelt and passionate answer, “The patient's advocate!” This essay examines and critically analyzes the advocacy role adopted by the nursing profession and outlines the challenges it has created to nursing's contributions to collaborative practice, ethics, and policy in health care. (shrink)

Objective To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. Design Cross-sectional survey. Study population Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. Results Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should (...) include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001). Conclusions This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results. (shrink)