A growing body of evidence suggests that the informed consent process, in which patients are warned about potential side effects of a treatment, can trigger a nocebo effect where expectations about side effects increase side effect occurrence. This has sparked an ethical debate about how much information patients ought to receive before a treatment while trying to balance the moral principles of patient autonomy and nonmaleficence. In keeping with the principle of patient autonomy, the opinion of patients themselves (...) in relation to how much information they want about side effects is of utmost relevance in this debate. The literature was searched to identify surveys assessing patient attitudes towards side effect information. Across a broad variety of patient populations, treatment types, and countries, the majority of patients wished to be fully informed of potential side effects, particularly in relation to frequent and severe side effects, while only a small minority wanted minimal or no information at all. Results from this review suggest that nocebo research should focus on methods of avoiding nocebo effects of informed consent while ensuring that patients are well-informed about potential side effects. (shrink)

Introduction: The decision of “do not attempt resuscitation” in the event of cardiopulmonary arrest is usually made when the patients are critically ill and cannot make an informed choice. Although, various professional bodies have published guidelines, little is know about the patients’ own views regarding DNAR discussion.Aim: The aim of this study was to determine patients’ attitudes regarding discussing DNAR before they are critically ill.Methods: A prospective study was performed in a general out patients department. A questionnaire was distributed (...) to consecutive outpatients along with an explanatory leaflet in the adult outpatient clinic.Results: 364 patients completed the questionnaire . 90% of respondents wanted all patients to be asked regarding DNAR decision at some point during a hospital admission. The majority would not find a DNAR discussion distressing. Only 10% would find it upsetting, however, 48% of these still wanted a discussion. 37% of respondents wanted to discuss DNAR decisions on admission; 32% in outpatients; 17% at consent for surgery, 14% when they are critically ill. 87% of respondents would not object to their relatives being involved in making decisions about their resuscitation status. However, only 12% of the subjects in the study had been involved in discussing the resuscitation status of a relative and 21% would not be comfortable to discuss a relative’s resuscitation status. Although 33% of patients preferred their resuscitation status to simply be documented within their clinical notes, 77% wanted it to be more easily accessible.Conclusions: This study suggests that contrary to current practice most patients want to discuss their DNAR status prior to becoming critically ill. This includes half of the small number that find it distressing to discuss. Although most patients are comfortable with relatives being involved in discussing DNAR, a significant proportion do not want their relatives to be asked. Furthermore, once a decision has been made, the majority of patients want it to be more accessible than current practice allows. (shrink)

Introduction: The decision of “do not attempt resuscitation” in the event of cardiopulmonary arrest is usually made when the patients are critically ill and cannot make an informed choice. Although, various professional bodies have published guidelines, little is know about the patients’ own views regarding DNAR discussion.Aim: The aim of this study was to determine patients’ attitudes regarding discussing DNAR before they are critically ill.Methods: A prospective study was performed in a general out patients department. A questionnaire was distributed (...) to consecutive outpatients along with an explanatory leaflet in the adult outpatient clinic.Results: 364 patients completed the questionnaire . 90% of respondents wanted all patients to be asked regarding DNAR decision at some point during a hospital admission. The majority would not find a DNAR discussion distressing. Only 10% would find it upsetting, however, 48% of these still wanted a discussion. 37% of respondents wanted to discuss DNAR decisions on admission; 32% in outpatients; 17% at consent for surgery, 14% when they are critically ill. 87% of respondents would not object to their relatives being involved in making decisions about their resuscitation status. However, only 12% of the subjects in the study had been involved in discussing the resuscitation status of a relative and 21% would not be comfortable to discuss a relative’s resuscitation status. Although 33% of patients preferred their resuscitation status to simply be documented within their clinical notes, 77% wanted it to be more easily accessible.Conclusions: This study suggests that contrary to current practice most patients want to discuss their DNAR status prior to becoming critically ill. This includes half of the small number that find it distressing to discuss. Although most patients are comfortable with relatives being involved in discussing DNAR, a significant proportion do not want their relatives to be asked. Furthermore, once a decision has been made, the majority of patients want it to be more accessible than current practice allows. (shrink)

While euthanasia and assisted suicide have been the subject of continuing public debate, few studies have examined the attitudes of relevant patient groups. This study systematically reviews the research literature on patients’ attitudes from 1989 to 2003, to i) identify the number of studies, ii) evaluate study methods and measures, and iii) examine prevalence of favourable attitudes. A systematic search was undertaken across five databases. Methods of the 21 studies identified varied considerably. General support for euthanasia (...) and assisted suicide was substantial across patient groups, with lower support for these as a personal option. The cancer / terminally ill / palliative care patient group had the lowest median general support for euthanasia (60% [IQ1=47, IQ3=65]) and assisted suicide (50% [IQ1=38, IQ3=71]), while the general/older/younger patient group had the lowest median personal preference for these (18% [IQ1=14, IQ3=27]). The effect of question context on level of support was unclear, due to the variety and number of contexts used across questions. There is still work that needs to be done in this controversial area before any robust conclusions can be made concerning the attitudes of patients to euthanasia and assisted suicide, and the adoption of a minimum set of standard questions would enhance this work. (shrink)

Objectives: The aims of this study were to: (1) investigate patients’ views on euthanasia and physician-assisted suicide (PAS), and (2) examine the impact of question wording and patients’ own definitions on their responses. Design: Cross-sectional survey of consecutive patients with cancer. Setting: Newcastle (Australia) Mater Hospital Outpatients Clinic. Participants: Patients over 18 years of age, attending the clinic for follow-up consultation or treatment by a medical oncologist, radiation oncologist or haematologist. Main Outcome Measures: Face-to-face patient interviews were conducted examining (...) attitudes to euthanasia and PAS. Results: 236 patients with cancer (24% participation rate; 87% consent rate) were interviewed. Though the majority of participants supported the idea of euthanasia, patient views varied significantly according to question wording and their own understanding of the definition of euthanasia. Conclusions: Researchers need to be circumspect about framing and interpreting questions about support of ‘euthanasia’, as the term can mean different things to different people, and response may depend upon the specifics of the question asked. (shrink)

BackgroundHealth research often uses health information, a subcategory of personal information, collected during clinical encounters. Conditions under which such health information can be used for the secondary purpose of research are set out in state, national and international law. In Australia, consent is required or the relevant conditions for a waiver of consent must be met and approved by a human research ethics committee (HREC). Consent for use of health information for research is rarely sought at an emergency department (ED) (...) presentation. Research often occurs after the index visit and gaining consent can be difficult. Waiver of consent provisions are frequently used, but acceptability of this approach to patients is unclear.ObjectiveTo identify ED patients’ knowledge and attitudes towards the use of health information for research, consent preferences and acceptability of waiver of consent.MethodsAn online, anonymous survey of adult patients attending two large EDs in Melbourne, Australia.Results103 patients completed the survey. We found that 52% were unaware that health information might be used for research. A majority (77%) felt that HREC approval for use of health information without consent was acceptable. However, 36% would prefer to be contacted regarding consent.ConclusionThese findings suggest a lack of awareness that health information can be used for research and that waiver of consent is acceptable, but not necessarily preferred, in most of the ED patient population. Efforts to increase awareness and provide opportunities to express preferences about health information use for research are needed. (shrink)

BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based (...) medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law. (shrink)

A patient is not always told when a student is performing a procedure for the first time. Withholding this information is a form of deception. It is justified on paternalistic grounds (it is in the patient's interest not to know), or on public policy grounds (given the choice, patients would refuse, thus compromising the training of future physicians). Using the spinal tap procedure (lumbar puncture) as a paradigm, 173 patients were surveyed to determine how they felt about first (...) time procedures by medical students, interns, and residents. The patients indicated that they would be willing to be the subject for a student's (52%), intern's (62%), or resident's (66%) first spinal tap. This paper reassesses the ethics of consent for first time procedures based on responses to this survey. (shrink)

Objectives: After years of public discussion too little is still known about willingness to accept the idea of writing an advance directive among various groups of people in EU countries. We investigated knowledge about and willingness to accept such a directive in cancer patients, healthy controls, physicians, and nursing staff in Germany.Methods: Cancer patients, healthy controls, nursing staff, and physicians were surveyed by means of a structured questionnaire.Results: Only 18% and 19% of the patients and healthy controls respectively, and 10% (...) of the medical staff had written an advance directive. However, 50–81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health . Only 29% of the healthy controls and 43% of the patients knew about the possibility of appointing a health care proxy. A majority in all groups believed that advance directives may influence the course of treatment , yet half of those surveyed in all groups fear that patients could be pressurised into writing an advance directive, and 38–65% thought that relatives could abuse such documents.Conclusions: Only a minority of the participants had written an advance directive and knew about the possibility of authorising a health care proxy. Deteriorating health was associated with increasing willingness to make a directive. Despite a majority belief that advance directives may influence treatment at the end of life, other factors limit their employment, such as fear of abuse. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are conventionally grounded in (...) a decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

BackgroundWhether patients in the vegetative state (VS), minimally conscious state (MCS) or the clinically related locked-in syndrome (LIS) should be kept alive is a matter of intense controversy. This study aimed to examine the moral attitudes of lay people to these questions, and the values and other factors that underlie these attitudes.MethodOne hundred ninety-nine US residents completed a survey using the online platform Mechanical Turk, comprising demographic questions, agreement with treatment withdrawal from each of the conditions, agreement with (...) a series of ethical principles and three personality tests.ResultsMore supported treatment withdrawal from VS (40.2 % agreed, 17.6 % disagreed) than MCS (20.6 %, 41.2 %) or LIS (25.3 %, 35.8 %). Agreement with treatment withdrawal was negatively correlated with religiosity (r = −0.272, P < 0.001), though showed no significant relationship with need for cognition or empathy, and only a partial association with utilitarian judgment in a standard moral dilemma. Support for treatment withdrawal was most strongly associated with endorsement of the importance of patient autonomy, dignity, suffering, best interests. Distributive justice was not given significant weight by most. Importantly, agreement with treatment withdrawal was noticeably higher when considered from a first as opposed to third person perspective for VS (Z = −6.056, P < 0.001), MCS (Z = −6.746, P < 0.001) and LIS (Z = −6.681, P < 0.001).ConclusionLay attitudes to withdrawal of treatment in brain damaged patients are largely shaped by values similar to those central to the secular ethical debate. Neither traditional values such as the sanctity of life nor utilitarian values relating to resource allocation seem to play a central role. Far greater weight is given to autonomy, which may explain why participants were far more willing to endorse withdrawal of treatment when the issue was presented in the first person, or in relation to a concrete case involving a patient’s explicit wishes. Surveys focusing on abstract cases presented in the third person may not provide an accurate picture of lay attitudes to these critical ethical questions. (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)

When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.

Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our center. Such inequality has been also observed elsewhere in this field and it (...) has been suggested that this inequality relates to, among other things, attitude differences towards donation based on religious beliefs. In this qualitative research we investigated whether religion might indeed (partly) be the explanation of the inequalities in living donor kidney transplants (LDKT) among non-European patients. Fifty patients participated in focus group discussions and in-depth interviews. The interviews were conducted following the focus group method and analyzed in line with Grounded Theory. The qualitative data analyses were performed in Atlas.ti. We found that religion is not perceived as an obstacle to living donation and that religion actually promotes helping and saving the life of a person. Issues such as integrity of the body were not seen as barriers to LDKT. We observed also that there are still uncertainties and a lack of awareness about the position of religion regarding living organ donation within communities, confusion due to varying interpretations of Holy Scriptures and misconceptions regarding the process of donation. Faith leaders play an important educational role and their opinion is influential. This study has identified modifiable factors which may contribute to the ethnic disparity in our living donation program. We argue that we need to strive for more clarity and awareness regarding the stance of religion on the issue of living donation in the local community. Faith leaders could be key figures in increasing awareness and alleviating uncertainty regarding living donation and transplantation. (shrink)

Background:Attitudes of nurses towards death and related concepts influence end-of-life care. Determining nurses’ views and attitudes towards these concepts and the factors that affect them are necessary to ensure quality end-of-life care.Objectives:The purpose of this study was to determine nurses’ views and attitudes about death, dying patient, euthanasia and the relationships between nurses’ characteristics.Methods:Participants consist of the nurses who volunteered to take part in this descriptive study from 25 hospitals which has a paediatric or adult intensive (...) care unit and located within the boundaries of Ankara, Turkey. ‘Nurse Information Form’ and ‘Attitude Scale about Euthanasia, Death and Dying Patients ’ were used as data collection tool.Ethical consideration:Written permissions were received from the ‘Noninterventional Clinical Researches Ethics Board’ of authors’ university and education councils of each hospital. Informed consent was obtained from participants.Findings:It is found that there are statistically significant difference among the factors of marital status, having a child, years of experience, bereavement experience, affected by working with dying patient, definition of euthanasia, views about patients who are appropriate for euthanasia, views about patients who desire to die and feeling need for counselling on these concepts according to the mean total score of nurses’ attitudes about euthanasia, death and dying patient.Conclusion:The results indicate that nurses are negatively affected to face the concepts of death, euthanasia and work with dying patient. This is reflected in their attitude. In order to gain positive attitude towards death, dying patient and euthanasia, the implementation of training and consulting services to nurses at appropriate intervals during both education and professional life are required. (shrink)

Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.Methods: 49 members of the public and four non-medical members of local community health councils in South (...) Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.Conclusions: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues. (shrink)

Next SectionPublic and healthcare professionals differ in their attitudes towards euthanasia and physician-assisted suicide (PAS), the legal status of which is currently in the spotlight in the UK. In addition to medical training and experience, religiosity, locus of control and patient characteristics (eg, patient age, pain levels, number of euthanasia requests) are known influencing factors. Previous research tends toward basic designs reporting on attitudes in the context of just one or two potentially influencing factors; we aimed (...) to test the comparative importance of a larger range of variables in a sample of nursing trainees and non-nursing controls. One hundred and fifty-one undergraduate students (early-stage nursing training, late-stage nursing training and non-nursing controls) were approached on a UK university campus and asked to complete a self-report questionnaire. Participants were of mixed gender and were on average 25.5 years old. No significant differences in attitude were found between nursing and non-nursing students. There was a significant positive correlation between higher religiosity and positive attitude toward euthanasia (r=0.19, p<0.05) and a significant negative relationship between internal locus of control and positive attitude toward PAS (r=−0.263, p<0.01). Multivariate analyses revealed differing predictor models for attitudes towards euthanasia and PAS, and confirm the importance of individual differences in determining these attitudes. The unexpected direction of association between religiosity and attitudes may reflect a broader cultural shift in attitudes since earlier research in this area. Furthermore, these findings suggest it possible that experience, more than training itself, may be a bigger influence on attitudinal differences in healthcare professionals. (shrink)

Bioethical debates on the use of human embryos and oocytes for stem cell research have often been criticized for the lack of empirical insights into the perceptions and experiences of the women and couples who are asked to donate these tissues in the IVF clinic. Empirical studies that have investigated the attitudes of IVF patients and citizens on the donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This (...) article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study. The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research are typical for Western societies but absent in China cannot be upheld. The article shows that research into the situated perceptions and cultural specificities of human tissue donation can play a crucial role in the deconstruction of politicized bioethical argumentation and the assumptions about “others” that underlie socio-ethical debates on the moral dilemmas of technology developments in the life sciences. (shrink)

OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, justice, external norms, and the (...) affective dimension. SETTING: Health care institutions in the province of Québec, Canada. Survey sample: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy. (shrink)

A survey on the knowledge and attitudes towards the Austrian organ donation legislation (an opt-out solution) of selected groups of the Austrian population taking into account factors such as age, gender, level of education, affiliation to healthcare professions and health related studies was conducted.

INTRODUCTION[|]The practice of medicine has evolved from old approach, in which all decisions for the patient are taken by physician, to a new approach, which includes patients to the medical decision-making process and endorses informed consent of the patients. In addition to healthcare professionals and patients, parents or legal representatives are stakeholders in the informed consent process of children. The knowledge and attitudes of physicians and medical school students about the informed consent period in children are important for (...) the effectiveness of the medical intervention and the biopsychosocial development of children. In this study, it was aimed to understand involvement of medical students and physicians in the informed consent process of children and their level of knowledge on children's rights and their attitudes in daily clinical practice.[¤]METHODS[|]The study is a descriptive study and n = 150 participants, who were randomly selected from senior medical school students working in medical school campus or university hospital and physicians serving pediatric patients, were included to this study. Questionnaires were applied for the measurement of participants' socio-demographic characteristics, education on pediatric patient rights, and legal provisions. The data were evaluated using SPSS 20.00 software.[¤]RESULTS[|]Of participants, 62% (n = 93) were phase 6 medical students, while 29.33% (n = 44) were resident physicians and the rest were faculty members (8.67%; n = 13). The proportion of physicians, who didn't received training on child rights, was 80.7% (n = 46) and statistically significantly higher than medical students (49.45%; n = 45) (p <0.001). However, participants who were not educated about the children's rights stated with higher ratio (44.83%; n=65), that informed consent should be obtained before medical intervention from individuals under 18 years of age, when they are compared to the the participants who received education (20.69%; n=30) (p = 0,019). The majority of participants (59.5%; n = 88) find the intervention in individuals under the age of 18 years in emergencies without consent of legal representatives ethically and legally appropriate (p <0.001). The participants believe that it is ethically and legally appropriate to conduct an intervention on an individual under the age of 18 years without the legal representative (36. 7%; n=54) (p <0.001).[¤]DISCUSSION AND CONCLUSION[|]This study compared the levels of knowledge and attitudes of participants, who were previously trained in or didn't received any training about children's rights and informed consent of children. However, the quality of the training of the participants on children's rights, was not questioned. This study showed that education on children's rights does not significantly increase the level of legal knowledge on children's rights. Having well-designed a subject focused on this theme in medical deontology and ethics education can increase the knowledge levels and improve the attitudes of medical students. This study sheds light on the issues that need to be focused in the medical faculties and the trainings of physicians and showed lack of information and need for development of attitudes regarding children's rights and informed consent in children.[¤]. (shrink)

Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. The (...) survey included questions estimating the level of knowledge about the term “Biobank”, together with questions about the attitudes and opinions about related issues. Two hundred and fifty-nine patients participated in the survey. Eighty-one percent of participants reported that they never heard about the term before. About 85% expressed that they would be willing to donate their samples for research and about 87% thought that sample donation did not contradict their religious beliefs. Fifty eight percent were willing to participate in a genetic research project, 27.8% supported sharing their sample with pharmaceutical companies, and 32.4% agreed to share their samples with institutions abroad. Although there is limited knowledge about biobanking among Egyptian patients, many had a positive attitude towards sample donation and didn’t show religious concerns against it. However, they showed concerns regarding participation in genetic research and with sharing their samples across borders or with pharmaceutical companies. Public education about biobanking is possible, taking into consideration the specific cultural and legal framework in Egypt. (shrink)

Objectives: To evaluate relatives’ attitudes towards informing patients with Alzheimer’s disease about their diagnosis.Setting: A university hospital in Italy.Methods: The closest relatives of each of 71 subjects diagnosed for the first time as having AD were interviewed, using a semistructured questionnaire. Spontaneous requests by relatives not to communicate issues concerning the diagnosis were also recorded.Results: Forty three relatives spontaneously requested that patients not be fully informed. After being interviewed, nobody thought that the patient should be given all the (...) information. Justifications were related to the fear of the onset or worsening of depressive symptoms in the patient.Conclusions: In Italy relatives’ opposition to informing AD patients appears to be common. Knowledge of the relatives’ attitudes may be useful for clinicians but disclosure of diagnosis should be based on the clinical evaluation of the patient and on a prudent evaluation of the relationship between the patient and her/his relative caregiver. (shrink)

Objective: To examine students’ attitudes and potential behaviour to a competent patient’s request for withdrawal of treatment as they pass through a modern medical curriculum.Design: Cohort design.Setting: University of Glasgow Medical School, United Kingdom.Subjects: A cohort of students entering Glasgow University’s new learner centred, integrated medical curriculum in October 1996.Methods: Students’ responses before and after year 1, after year 3, and after year 5 to the assisted suicide vignette of the Ethics in Health Care Survey instrument, were examined (...) quantitatively and qualitatively. Analysis of students’ multichoice answers enabled measurement of the movement towards professional consensus opinion. Analysis of written justifications helped determine whether their reasoning was consistent with professional consensus and enabled measurement of change in knowledge content and recognition of the values inherent in the vignette. Themes on students’ reasoning behind their decision to withdraw treatment or not were also identified.Results: Students’ answers were found to be consistent with professional consensus opinion precurriculum and remained so throughout the curriculum. There was an improvement in the knowledge content of the written responses following the first year of the curriculum, which was sustained postcurriculum. However, students were found to analyse the section mainly in terms of autonomy, with few responses considering the other main ethical principles or the wider ethical perspective. Students were unclear on their legal responsibilities.Conclusions: Students should be encouraged to consider all relevant ethical principles and the wider ethical perspective when deliberating ethical dilemmas. Students should have a clear understanding of their legal responsibilities. (shrink)

Background Evidence concerning how Japanese physicians think and behave in specific clinical situations that involve withholding or withdrawal of medical interventions for end-of-life or frail elderly patients is yet insufficient. Methods To analyze decisions and actions concerning the withholding/withdrawal of life-support care by Japanese physicians, we conducted cross-sectional web-based internet survey presenting three scenarios involving an elderly comatose patient following a severe stroke. Volunteer physicians were recruited for the survey through mailing lists and medical journals. The respondents answered questions (...) concerning attitudes and behaviors regarding decision-making for the withholding/withdrawal of life-support care, namely, the initiation/withdrawal of tube feeding and respirator attachment. Results Of the 304 responses analyzed, a majority felt that tube feeding should be initiated in these scenarios. Only 18% felt that a respirator should be attached when the patient had severe pneumonia and respiratory failure. Over half the respondents felt that tube feeding should not be withdrawn when the coma extended beyond 6 months. Only 11% responded that they actually withdrew tube feeding. Half the respondents perceived tube feeding in such a patient as a "life-sustaining treatment," whereas the other half disagreed. Physicians seeking clinical ethics consultation supported the withdrawal of tube feeding (OR, 6.4; 95% CI, 2.5–16.3; P < 0.001). Conclusion Physicians tend to harbor greater negative attitudes toward the withdrawal of life-support care than its withholding. On the other hand, they favor withholding invasive life-sustaining treatments such as the attachment of a respirator over less invasive and long-term treatments such as tube feeding. Discrepancies were demonstrated between attitudes and actual behaviors. Physicians may need systematic support for appropriate decision-making for end-of-life care. (shrink)

BackgroundRespecting patients’ confidentiality is an ethical and legal responsibility for health professionals and the cornerstone of care excellence. This study aims to assess health professionals’ knowledge, attitudes, and associated factors towards patients’ confidentiality in a resource-limited setting.MethodsInstitutional based cross-sectional study was conducted among 423 health professionals. Stratified sampling methods were used to select the participants, and a structured self-administer questionnaire was used for data collection. The data was entered using Epi-data version 4.6 and analyzed using SPSS, version 25. Bi-variable (...) and multivariable binary logistic regression analyses were used to measure the association between the dependent and independent variables. Odds ratio with 95% confidence intervals and P value was calculated to determine the strength of association and to evaluate statistical significance.ResultOut of 410 participants, about 59.8% with [95% CI (54.8–68.8%)] and 49.5% with [95% CI (44.5–54.5%)] had good knowledge and favorable attitude towards patents confidentiality respectively. Being male (AOR = 1.63, 95% CI [1.03–2.59]), taking training on medical ethics (AOR = 1.73, 95% CI = [1.11–2.70]), facing ethical dilemmas (AOR = 3.07, 95% CI [1.07–8.79]) were significantly associated factors for health professional knowledge towards patients’ confidentiality. Likewise, taking training on medical ethics (AOR = 2.30, 95% CI [1.42–3.72]), having direct contact with the patients (AOR = 3.06, 95% CI [1.12–8.34]), visiting more patient (AOR = 4.38, 95% CI [2.46–7.80]), and facing ethical dilemma (AOR = 3.56, 95% CI [1.23–10.26]) were significant factors associated with attitude of health professionals towards patient confidentiality.ConclusionThe findings of this study revealed that health professionals have a limited attitude towards patient confidentiality but have relatively good knowledge. Providing a continuing medical ethics training package for health workers before joining the hospital and in between the working time could be recommended to enhance health professionals’ knowledge and attitude towards patient confidentiality. (shrink)

Background In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, this (...) study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.Methods Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.Results Approximately, 95% of physicians were patient-centered in explaining the patient’s severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient’s wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.Conclusions In relatively low-conflict situations, such as the announcement of a patient’s medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice. (shrink)

Context Autopsy is a useful tool for understanding the cause and manner of unexpected patient death. However, the attitudes of the general public and physicians in Japan about clinical autopsy are limited. Objective To describe the beliefs of the general public about whether autopsy should be performed and ascertain if they would actually request one given specific clinical situations where patient death occurred with the additional variable of medical error. To compare these attitudes with previously obtained (...) attitudes of physicians practising at Japanese teaching hospitals. Design, setting and participants We conducted a cross-sectional study of the general public. We sent standardised questionnaires in 2010 to a randomly selected non-physician adult population using a survey company for participant selection. Respondents gave their opinions about the necessity of autopsy and how they might act given various clinical scenarios of patient death. We compared these results with those of a previous survey of Japanese physicians conducted in 2009. Results Of the 2300 eligible general adult population, 1575 (68.5%) responded. The majority of the general public indicated they believed an autopsy was necessary. However, in cases of unclear medical error or unclear cause and effect relationship of medical care and patient death, the general public were much less likely to indicate they would actually request an autopsy than were physicians (p<0.0001). Currently in Japan the debate about the role autopsy should play in the case of error related to death is underway. The results from this study will be important in informing related decisions. (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.

When a patient with a serious mental illness expresses a desire for children, mental health professionals are faced with an ethical dilemma. To date, little research has been conducted into their strategies for dealing with these issues.

This article reports the results of a survey, by mailed questionnaire, of the attitudes, values and practices of doctors in Singapore with respect to the doctor-patient relationship. Questionnaires were sent to a random sample of 475 doctors (261 general practitioners and 214 medical specialists), out of which 249 (52.4%) valid responses were completed and returned. The survey is the first of its kind in Singapore. Questions were framed around issues of medical paternalism, consent and patient autonomy. As (...) the doctors were exposed to Western ethical concepts in their training, we were not surprised to find that they would mostly allow patients some say in decision-making and keep patients reasonably informed. In respecting patient autonomy, they would usually seek to influence patient choice by persuasion. However, the residual "Asian-ness" of doctors in Singapore gives rise to some inconsistencies between values and practices. Many doctors still believe that a number of their patients are incapable of rational choice. There is some lack of openness in telling patients the whole truth. When patients choose to refuse treatment, many doctors are prepared to involve family members in making a consensus decision. Doctors were also asked how they made ethical judgements in the face of dilemmas, and how they would like disputes with patients to be resolved. By and large, the doctors prefer to make their own judgements rather than to rely on rules. They also wish to keep the law courts out of disputes with patients, preferring less public ways of settling disputes. (shrink)

Notwithstanding fundamental methodological advancements, scientific information about disorders of consciousness (DOCs)—e.g. Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS) and Minimally Conscious State (MCS)—is incomplete. The possibility to discriminate between different levels of consciousness in DOC states entails treatment strategies and ethical concerns. Here we attempted to investigate Italian clinicians’ and basic scientists’ opinions regarding some issues emerging from the care and the research on patients with DOCs. From our survey emerged that Italian physicians working with patients with DOCs give a central role (...) to ethics. Current Italian regulation regarding basic research conducted in patients with DOCs apparently risks to be inadequate to support scientific advancement, and would deserve a different assessment compared to ordinary treatments. We think the results of our survey deserve attention from an international audience because they exemplify the difficulty to define a shared approach to the issues related to patients with DOCs and the necessity to better assess both the ordinary and experimental treatment of patients with DOCs at the ethical and legal level. (shrink)

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest (...) that patient participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK. (shrink)

This integrative review aims to provide a synthesis of research findings of health-care professionals’ knowledge, attitudes and behaviours relating to patient capacity to consent to or refuse treatment within the general hospital setting. Search strategies included relevant health databases, hand searching of key journals, ‘snowballing’ and expert recommendations. The review identified various knowledge gaps and attitudinal dispositions of health-care professionals, which influence their behaviours and decision-making in relation to capacity to consent processes. The findings suggest that there is (...) tension between legal, ethical and professional standards relating to the assessment of capacity and consent within health care. Legislation and policy guidance concerning capacity assessment processes are lacking, and this may contribute to inconsistencies in practice. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In (...) both countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

A self-designed questionnaire was given to 634 health professionals in a large teaching hospital in Hubei Province in mainland China, to clarify the participants’ attitude towards information disclosure to cancer patients. Statistic description was used to analyze the data. The item ‘inappropriate information about cancer easily leads to medical disputes’ scored highest at 3.86, while the scores of such items as ‘advantages of fully informing patients outweigh disadvantages’, ‘if their family members demand nondisclosure, you will find it difficult to cooperate (...) in good faith with patients’, and ‘telling white lies to patients disturbs you a lot’ were less than 3. The health care staff placed a high value on both the desire and priority of patients to know the truth, though most of them did not think that patients had received enough information about their disease. In order to improve cancer patients’ current state of knowledge, health professionals should learn more about informed consent, and special methods and guidelines compatible with Chinese culture are urgently required in China. (shrink)

Physicians anecdotally report inquiring about incarcerated patients’ crimes and their length of sentence, which has potential implications for the quality of care these patients receive. However, there is minimal research on how a physician’s awareness of their patient’s crimes/length of sentence impacts physician behaviours and attitudes. We performed regression modelling on a 27-question survey to analyse physician attitudes and behaviours towards incarcerated patients. We found that, although most physicians did not usually try to learn of their patients’ (...) crimes, they often became aware of them. We observed associations between awareness of a patient’s crime and poor physician disposition towards their patients and between physicians’ poor dispositions and lower reported quality of care. These associations suggest that awareness of a patient’s crime may reduce quality of care by negatively impacting physicians’ dispositions towards their patients. Future quantitative and qualitative studies, for example, involving physician interviews and direct patient outcome assessments, are needed to confirm these findings and further uncover and address hurdles incarcerated patients face in seeking medical care. (shrink)

A questionnaire relating to attitudes towards setting economic priorities within the health care system was sent to all 151 general practitioners in Northern Norway. Of these, 109 (72 per cent) responded. Ninety-six per cent of the respondents agreed or partly agreed that the setting of economic priorities within the health care system was necessary. Ninety-three per cent had experienced a conflict between their responsibility towards the individual patient and the requirement for them to manage the health budget. The (...) responses suggest that doctors act more in the interests of their patient than the interests of society. However, 68 per cent reported having refrained from giving the best treatment to patients because it was too expensive. As many as 60 per cent of the respondents wanted more public guidelines. Only 10 per cent wanted doctors to have more influence in difficult questions arising from setting priorities. (shrink)