Objectives: To investigate life scientists’ views of accountability and the ethical and societal implications of research. Design: Qualitative focus group and one-on-one interviews. Participants: 45 Stanford University life scientists, including graduate students, postdoctoral fellows and faculty. Results: Two main themes were identified in participants’ discussions of accountability: the “how” of science and the “why” of science. The “how” encompassed the internal conduct of research including attributes such as honesty and independence. The “why,” or the motivation for conducting (...) research, was two-tiered: first was the desire to positively impact the research community and science itself, and second was an interest in positively impacting the external community, broadly referred to as society. Participants noted that these motivations were influenced by the current systems of publications, grants and funding, thereby supporting a complex notion of boundary-setting between science and non-science. In addition, while all participants recognised the “how” of science and the two tiers of “why,” scientists expressed the need to prioritise these domains of accountability. This prioritisation was related to a researcher’s position in the academic career trajectory and to the researcher’s subsequent “perceived proximity” to scientific or societal concerns. Our findings therefore suggest the need for institutional change to inculcate early-stage researchers with a broader awareness of the implications of their research. The peer review processes for funding and publication could be effective avenues for encouraging scientists to broaden their views of accountability to society. (shrink)

The potential for dual use of research in the life sciences to be misused for harm raises a range of problems for the scientific community and policy makers. Various legal and ethical strategies are being implemented to reduce the threat of the misuse of research and knowledge in the life sciences by establishing a culture of responsible conduct.

Background and objectivesIn Bahrain, maintaining life support at all costs is a cultural value considered to be embedded in the Islamic religion. We explore end-of-life decision making for brain dead patients in an Arab country where medical cultures are dominated by Western ideas and the lay culture is Eastern.MethodsIn-depth interviews were conducted from February to April 2018 with 12 Western-educated Bahraini doctors whose medical practice often included end-of-life decision making. Discussions were about who should make withdrawal of life (...) support decisions, how decisions are made and the context for decision making. To develop results, we used the inductive method of thematic analysis.ResultsInformants considered it difficult to engage non-medical people in end-of-life decisions because of people’s reluctance to talk about death and no legal clarity about medical responsibilities. There was disagreement about doctors’ roles with some saying that end-of-life decisions were purely medical or purely religious but most maintaining that such decisions need to be collectively owned by medicine, patients, families, religious advisors and society. Informants practised in a legal vacuum that made their ethics interpretations and clinical decision making idiosyncratic regarding end-of-life care for brain dead patients. Participants referred to contrasts between their current practice and previous work in other countries, recognising the influences of religious and cultural dimensions on their practice in Bahrain.ConclusionsEnd-of-life decisions challenge Western-trained doctors in Bahrain as they grapple with aligning respect for local culture with their training in the ethical practice of Western medicine. (shrink)

BackgroundDecisions about limitations of life sustaining treatments are made for end-of-life patients in intensive care units. The aim of this research was to explore the professional and ethical attitudes and experiences of medical professionals on treatment of end-of-life patients in ICUs in the Republic of Croatia.MethodsA cross-sectional study was conducted among physicians and nurses working in surgical, medical, neurological, and multidisciplinary ICUs in the total of 9 hospitals throughout Croatia using a questionnaire with closed and open type questions. (...) Exploratory factor analysis was conducted to reduce data to a smaller set of summary variables. Mann–Whitney U test was used to analyse the differences between two groups and Kruskal–Wallis tests were used to analyse the differences between more than two groups.ResultsLess than third of participants stated they were included in the decision-making process, and physicians are much more included than nurses. Sixty two percent of participants stated that the decision-making process took place between physicians. Eighteen percent of participants stated that ‘do-not-attempt cardiopulmonary resuscitations’ orders were frequently made in their ICUs. A decision to withdraw inotropes and antibiotics was frequently made as stated by 22.4% and 19.9% of participants, respectively. Withholding/withdrawing of LST were ethically acceptable to 64.2% of participants. Thirty seven percent of participants thought there was a significant difference between withholding and withdrawing LST from an ethical standpoint. Seventy-nine percent of participants stated that a verbal or written decision made by a capable patient should be respected. Physicians were more inclined to respect patient’s wishes then nurses with high school education. Nurses were more included in the decision-making process in neurological than in surgical, medical, or multidisciplinary ICUs. Male participants in comparison to female, and physicians in comparison to nurses with high school and college education displayed more liberal attitudes about LST limitation.ConclusionsDNACPR orders are not commonly made in Croatian ICUs, even though limitations of LST were found ethically acceptable by most of the participants. Attitudes of paternalistic and conservative nature were expected considering Croatia’s geographical location in Southern Europe. (shrink)

In the United States a rapidly increasing regulatory burden for life scientists has led to questions of whether the increased burden resulting from the Select Agent Program has had adverse effects on scientific advances. Attention has focussed on the regulatory “fit” of the Program and ways in which its design could be improved. An international framework convention to address common concerns about biosecurity and biosafety is a logical next step. Keywords Biosafety - Biosecurity law - Biosecurity regulations - Scientist (...) - Laboratories - Research - Bioterrorism - Terrorism. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant (...) condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

Purpose The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these (...) perspectives was conducted by collaboration between researchers in all three countries. Methods Surveys using self-reporting paper questionnaire forms were conducted from December 2008 to April 2009 in Korea (six hospitals in two regions), China (five hospitals in four regions) and Japan (nine hospitals in one region). The subjects were patients who were critically ill who had been diagnosed as having cancer. A total of 235 participants (Korea, 91; China, 62; Japan, 52) were eventually recruited and statistically analysed. Results Most respondents had sometimes or often thought of their own death, mostly fear of ‘separation from loved ones’. They wanted to hear the news regarding their own condition directly and frankly from the physician. A quarter of them preferred making end-of-life care decisions by themselves, while many respondents favoured a ‘joint decision’ with their family members. The most favoured proxy decision maker was the spouse, followed by the children. Most admitted the necessity of ‘advance directives’ and agreed with artificial ventilation withdrawal in irreversible conditions. The most common reason was ‘artificial prolongation of life is unnecessary’. Most respondents agreed with the concept of active euthanasia; however, significant differences were sometimes observed in the responses according to variables such as patient's country of origin, age, gender and education level. Conclusion Patients in Far-Eastern countries gave various responses regarding end-of-life care decisions. Although familial input is still influential, most patients think of themselves as the major decision maker and accept the necessity of advance directives with Westernization of the society. Artificial ventilation withdrawal and even active euthanasia may be acceptable to them. (shrink)

BackgroundCompetent end-of-life care is an essential component of total health care provision, but evidence suggests that it is often deficient. This study aimed to evaluate the knowledge and attitudes about key end-of-life issues and principles of good death among doctors in clinical settings.MethodsA cross-sectional study was conducted among allopathic medical doctors working in in-ward clinical settings of tertiary care hospitals in Sri Lanka using a self-administered questionnaire with open- and close-ended questions as well as hypothetical clinical scenarios. Univariate and (...) logistic regression analysis were used to identify the independent factors associated with knowledge and attitudes.ResultsOf the responders who had not been a caregiver for a terminally ill relative (n = 390), 57.9% were men with a mean age of 36.5 years (SD = 8.2). Compared to undergraduate (65.6%; n = 256), only 27.4% (n = 107) had received end-of-life care training at postgraduate level. Only 65.9% of doctors favoured disclosing terminal prognosis to patients; 27.7% of doctors were aware of advance directives; 14.6% were aware of the correct time of death when certifying brain death; 70.3% felt more comfortable in withholding than withdrawing life-sustaining treatment; 61.3% were aware of do-not-attempt cardiopulmonary resuscitation (DNACPR) decisions while 26.7% felt reluctant to administer it; 15.1% thought that all life-sustaining therapy should be withdrawn with a DNACPR decision; and only17.9% were able to name the four principles of medical ethics while 57.9% could not name a single. Participants scored a mean of 9.2 (SD = 3.9) of a maximum 14 points when tested on principles of a ‘good death’. Doctors who had pursued postgraduate studies were more likely to be aware of breaking bad news (adjusted-Odds-Ratio:1.99; 95%CI = 1.19–3.32), advance directives (adjusted-OR: 4.15; 95%CI = 2.49–6.94), aware of certifying the correct time of death (adjusted-OR:2.37; 95%CI = 1.33–4.2) and less reluctant to make DNACPR decisions (adjusted-OR:1.74; 95%CI = 1.13–2.68). Doctors who had worked in ICU were more comfortable withholding than withdrawing treatment (adjusted-OR:1.99; 95%CI = 1.2–3.31).ConclusionsKnowledge and attitudes about end-of-life care, good death and principles of medical ethics among doctors in Sri Lanka were suboptimal. Structured training of end-of-life care needs to be integrated within curricula and in-service training. (shrink)

Objectives Potentially life-shortening medical end-of-life practices ) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices they label as euthanasia or sedation.Methods We conducted a large stratified random sample of death certificates from 2007 . The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. (...) Response rate was 58.4%.Results In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24 h in 51% and an explicit patient request was absent in 79.7%.Discussion Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians. (shrink)

BackgroundMedical aid in dying was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues.MethodsA retrospective chart review of all MAiD requests between December 2015 and June 2017 at two (...) Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests.ResultsOf 80 patients requesting MAiD, 54% received the intervention. The median number of days between the request for MAiD and the patient’s death was 6 days. The majority of palliative care consults came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 at the time of the MAiD request and 19% were receiving life-prolonging interventions.InterpretationWe highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians’ approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend. (shrink)

There is a growing literature on how scientific experts understand risk of technology related to their disciplinary field. Previous research shows that experts have different understandings and perspectives depending on disciplinary culture, organizational affiliation, and how they more broadly look upon their role in society. From a practice-based perspective on risk management as a bottom-up activity embedded in work place routines and everyday interactions, we look, through an ethnographic lens, at the laboratory life of nanoscientists. In the USA and Sweden, (...) two categories of nanoscientists have been studied: upstream scientists who are mainly electrical and physical engineers and downstream scientists who are toxicologists, often with a more multidisciplinary background, including physics, chemistry, biology, and engineering. The results show that although the two groups of scientists share the same norms of appropriate laboratory conduct to promote safety and good science practice, they have very different perspectives on risk with nanomaterials. Upstream scientists downplay risk; they emphasize the innovative potential of the new materials to which they express an affectionate and personalized stance. The downstream scientists, instead, focus on the uncertainties and unpredictability of nanomaterials and they see some materials as potentially highly dangerous. The results highlight the ambiguous and complex role of scientific experts in policy processes about the risk and regulation of nanotechnology. (shrink)

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital (...) in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment. (shrink)

Bioethics is a fairly new, but very popular, discipline broadly present in the public debate of the Western Societies. It deals with difficult tasks and challenges faced by scientists to find ethical, social or political solutions to various problems created by modern science and technological growth. An impressive exploration of several bioethical issues can be found in the works of the Polish Jesuit, philosopher and, now a retired professor, Tadeusz Ślipko. For decades, his scientific attention, apart from theoretical topics, (...) was focused on the issues important to everyday human life. He placed a lot of emphasis on finding ethical solutions to the difficult issues discussed in the postwar Poland. He authored the first Polish ethical monograph devoted exclusively to modern problems of medical and technological development and titled Limits of Life. Dilemmas of the Modern Bioethics, first published in 1988 and reprinted in 1994. (shrink)

The hypothermia experiments performed on humans during the Second World War at the German concentration camp in Dachau have been regarded as crimes against humanity, disguised as medical research. For almost 50 years, scientists maintained that the study produced valuable, even if not totally reliable, information. In recent years, the results from the Dachau hypothermia project were glamorized with life-saving potential and a heated ethical dialogue was activated about the use of life-saving but tainted scientific information. In the (...) wake of the debate, an in-depth examination of the scientific rigour of the project was performed and revealed that neither the science nor the scientists from Dachau could be trusted and that the data were worthless. The body of medical opinion accepted the unfavourable determination but a few scientists and ethicists have continued to endorse the validity, of at least parts, of the Dachau hypothermia data. The conduct of the scientific communications about the Dachau hypothermia experiments by the scientific and ethical communities invites serious consideration of a possible ethical misadventure. It appears that for almost 50 years, the results of the study had been endorsed without careful examination of the scientific base of the experiments and that secondary citation of relevant original material may have been commonly employed. These infractions contributed to a myth that good science was practised by the Nazis at Dachau. The more recent emphasis on the life-saving potential of the Dachau data, without citation of credible supporting evidence, has also been misleading. Similarly, acceptance of a determination by an in-depth examination that the 'whole' Dachau project if flawed with simultaneous endorsement of the validity of 'parts' of the results, poses an ethical problem. It is advisable that before seeking ethical consultation about the use of unethically obtained data, scientists should examine the quality of science behind the controversial information and ethicists should verify the integrity of the material prior to engaging in a dialogue. (shrink)

Ethics in scientific research has never been more important. Recent controversies over the integrity of data in federally funded science, the manipulation and distortion of privately sponsored research, cloning, stem cell research, and the patenting of DNA and cell lines, illustrate the need for a more thorough education in ethics for researchers at all levels. Now in its second edition, Responsible Conduct of Research provides an introduction to many of the social, ethical, and legal issues facing scientists today. (...) The fully updated volume includes three brand new chapters and additional cases for discussion, as well as analysis of the latest issues and problems in research ethics. Featuring chapters that treat such topics as ethical decision-making, research misconduct, and intellectual property, this new edition will be an indispensable resource for students and teachers, academics and industry professionals alike. (shrink)

This companion to Elliot Dorff's three books on Jewish ethics -- Matters of Life and Death , To Do the Right and the Good , and Love Your Neighbor and Yourself -- is designed for group as well as individual study. Through suggested readings from Dorff's books, probing questions, lively discussion topics, and simple writing exercises, readers will be able to analyze and clarify their own positions on a host of controversial issues: sex, surrogate motherhood, adoption, family abuse, responsibilities for (...) charitable giving, the ethics of war, suicide, and euthanasia, and more. (shrink)

BackgroundEnd-of-life decisions remain a hotly debated issue in many European countries and the acceptance in the general population can act as an important anchor point in these discussions. Previous studies on determinants of the acceptance of end-of-life interventions in the general population have not systematically assessed whether determinants differ between withdrawal of life-prolonging treatment and euthanasia.MethodsA large, representative survey of the Austrian adult population conducted in 2014 included items on WLPT and EUT. We constructed the following categorical outcome: rejection of (...) both WLPT and EUT, approval of WLPT but rejection of EUT, and approval of both WLPT and EUT. The influence of socio-demographics, personal experiences, and religious and socio-cultural orientations on the three levels of approval were assessed via multinomial logistic regression analysis.ResultsHigher education and stronger socio-cultural liberal orientations increased the likelihood of approving both WLPT and EUT; personal experience with end-of-life care increased only the likelihood of approval of WLPT; and religiosity decreased approval of EUT only.ConclusionThis study found evidence for both shared and different determinants for the acceptance of WLPT and EUT. (shrink)

Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through deductive content analysis. Analysis (...) revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)

Objectives: This study investigated Finnish physicians’ experiences of decisions concerning living wills and do not resuscitate orders and also their views on the role of patients and family members in these decisions.Design: A questionnaire was sent to 800 physicians representing the following specialties: general practice ; internal medicine ; neurology , and oncology .Results: The response rate was 56%. Most of the respondents had a positive attitude toward , and respect for living wills, and 72% reported situations in which such (...) a will would have been helpful, although experience with their use was limited. The physicians reported both benefits and problems with living wills. Thirteen per cent had completed a living will of their own. Half did not consider living wills to be reliable if they were several years old. Do not resuscitate orders were interpreted in two ways: resuscitation forbidden or only palliative care required . The respondents also documented DNR orders differently. Seventy two per cent discussed DNR decisions always or often with patients able to communicate, and even 76% discussed DNR orders with the family members of patients unable to communicate. Most respondents were able to approach a dying patient without difficulty. They also felt that education in general was needed.Conclusions: In general Finnish physicians accept living wills, but find they are accompanied by several problems. Many problems could be avoided if physicians and patients conducted progressive discussions about living wills. The differing interpretations of DNR orders are a matter of concern in that they may affect patient treatment. The promotion of patient autonomy with respect to treatment seems rather good, but the limitations of the study need to be kept in mind. (shrink)

The value of life can be viewed from moral, biologic, and economic perspectives. In connection with the development of genetics, each of these perspectives has gained importance throughout history. Whereas agricultural genetics has always been directed towards having an economic impact, from the beginning genetics research in humans has focused on all dimensions of the value of life. Today, health insurance, employers, politicians, and public health scientists view genetics research as one of the key disciplines to predict costs and (...) economic values of human beings. However, the reasoning cannot go without considering biologic health risks and moral values to the same extent. This paper examines the historical dimensions of current debates surrounding genetics and the value of life. Thus, the paper is conceptual and offers a heuristic model and analytical categories for answering the question, “what is so intriguing about genetics that it can be closely connected with different value concepts,” although the consideration of the moral, biologic, or economic value of life may lead to completely different ideas of man and society. A special emphasis will be placed on the use of genetics for the purposes of the eugenics movement. During the heyday of eugenics, the economic value of life changed the understanding of the moral value, as well as the biologic value of life by referring to genetic principles. It will be argued that an intended intertwinement of the different dimensions of the concept of “value” on the one hand increased the impact of genetics as a key discipline of the eugenics movement, and on the other hand had a lasting impact on debates about the economic usefulness of genetics as a predictive, prophylactic medical discipline. (shrink)

Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she had cancer, patient (...) involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (shrink)

Background Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments. The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units. Methods A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, (...) legal and religious leaders. Results Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of. Most respondents were between 30 and 49 years old, Catholic Christians, anesthesiologists, working in Beirut. Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the “Principle of Double Effect”. The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary, involving the family, and the patient, or his advance directives or his surrogate and the nurses. The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices. Conclusion Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country. (shrink)

Um das Ansehen von medizinischen Forschern ist es in der westlichen Welt nicht überall gut bestellt. In den 1990er-Jahren gelangte das Thema »Medizinischer Forschungsbetrug« erstmals in den USA in das öffentliche Bewusstsein. Eine Debatte um begünstigende Strukturen und denkbare Kontrollinstrumente zur Eindämmung von Missbrauch entbrannte – in Deutschland blieb ein solcher Diskurs bis zur Jahrhundertwende zunächst aus. Der Band nimmt wissenschaftlich arbeitende Ärzte, die ethischen Anforderungen, denen sie sich ausgesetzt sehen, und das System, in dem sie arbeiten, in den Fokus. (...) Stella Elaine Urbans Analyse von Betrugsfällen deckt wissenschaftsimmanente und individuelle Fallstricke auf, die unredliche Forschung begünstigen. Es zeigt sich, dass die wissenschaftliche Integrität unterstützt und geschützt werden muss, um das Vertrauen in die Medizin wiederherzustellen. (shrink)

With a focus on end-of-life discussion in aging and chronically ill populations, this book offers insight into the skill of communicating in complex and emotionally charged discussions. This text is written for all clinicians and professionals in the fields of healthcare and public health who are faced with questions of ethical deliberation when a patient's illness turns from chronic to terminal. This skill is required to manage care well in an age of advanced technology, and numerous autonomous choices. With a (...) palliative care and ethics focus, the manuscript provides case studies illustrating issues which occur in the acuity and chronicity of end of life. Clear tools for clinicians, such as scripting and "the advance care planning video library" are included. The book focuses on the unique concept of outpatient ethics, including readmission prevention and shortened length of stay through good communication for clinicians who will be required to conduct this discussion with patients. The ethical undertone in this text provides a perfect opening for application in healthcare ethics classes, both in fields of public health and healthcare. Medical scholars and physicians, nurse practitioners and physician's assistants, as well as social workers, both in practice and training, will benefit from this text. (shrink)

Objective To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. Methodology This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was derived from the (...) central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). Findings In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision—a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. Discussion and conclusion There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from an (...) acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and provide a possible explanation (...) based on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

Human death is a mystery. Although scientists have identified the criteria, states, and signs of biological death, undoubtedly the issues of dying and death have a wider meaning. In this book, the authors present current research in the study of the ethical issues, practices and challenges of end-of-life care. Topics discussed include a spiritual perspective of end-of-life experiences; a veterinary oncologist's interprofessional crossover perspective of euthanasia for terminal patients; diabetes and end-of-life care; helping families to cope after the death (...) of a loved one; multidimensional aspects of nursing care for dying patients; spirituality at the end-of-life; challenges of promoting end-of-life care in residential care homes in Hong Kong; and the current situation and challenges of home end-of-life care for the elderly in Japan. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be (...) adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Technological innovations and social developments have led to dramatic changes in the practice of medicine and in the way that scientists conduct medical research. Change has brought beneficial consequences, yet these gains have come at a cost, for many modern medical practices raise troubling ethical questions: Should life be sustained mechanically when the brain's functions have ceased? Should potential parents be permitted to manipulate the genetic characteristics of their embryos? Should society ration medical care to (...) control costs? Should fetal stem cells be experimented upon in an effort to eventually palliate or cure debilitating diseases? Bioethicists analyze and assess moral dilemmas raised by medical research and innovative treatments; they also counsel healthcare practitioners, patients, and their families. In this anthology, fifteen philosophers, social scientists, and academic lawyers assess various aspects of this field. (shrink)

Objectives: This study investigated Finnish physicians’ experiences of decisions concerning living wills and do not resuscitate orders and also their views on the role of patients and family members in these decisions.Design: A questionnaire was sent to 800 physicians representing the following specialties: general practice ; internal medicine ; neurology , and oncology .Results: The response rate was 56%. Most of the respondents had a positive attitude toward , and respect for living wills, and 72% reported situations in which such (...) a will would have been helpful, although experience with their use was limited. The physicians reported both benefits and problems with living wills. Thirteen per cent had completed a living will of their own. Half did not consider living wills to be reliable if they were several years old. Do not resuscitate orders were interpreted in two ways: resuscitation forbidden or only palliative care required . The respondents also documented DNR orders differently. Seventy two per cent discussed DNR decisions always or often with patients able to communicate, and even 76% discussed DNR orders with the family members of patients unable to communicate. Most respondents were able to approach a dying patient without difficulty. They also felt that education in general was needed.Conclusions: In general Finnish physicians accept living wills, but find they are accompanied by several problems. Many problems could be avoided if physicians and patients conducted progressive discussions about living wills. The differing interpretations of DNR orders are a matter of concern in that they may affect patient treatment. The promotion of patient autonomy with respect to treatment seems rather good, but the limitations of the study need to be kept in mind. (shrink)

Continuous sedation until death is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness, the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book (...) brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in particular the doctrine of double effect. (shrink)

Continuous sedation at the end of life is the practice whereby a physician uses sedatives to reduce or take away a patient's consciousness until death. Although the incidence of CS is rising, as of yet little research has been conducted on how the administration of CS is experienced by medical practitioners. Existing research shows that many differences exist between medical practitioners regarding how and how often they perform CS. We conducted a focus group study to find out which (...) factors may facilitate or constrain the use of continuous sedation by physicians and nurses. The participants often had clear ideas on what could affect the likelihood that sedation would be used. The physicians and nurses in the focus groups testified that the use of continuous sedation was facilitated in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation. However, this ‘paradigm case’ was considered to occur only rarely. Furthermore, deviations from the paradigm case were said to be sometimes due to physicians initiating the discussion on CS too late or not initiating it at all for fear of inducing the patient. Deviations from the paradigm case may also occur when sedation proves to be too difficult for family members who are said to sometimes pressure the medical practitioners to increase dosages and speed up the sedation. (shrink)

Objective The establishment of patient-centered measures capable of empirically determining meaningful cognitive change after surgery can significantly improve the medical care of epilepsy patients. Thus, this study aimed to develop reliable change indices (RCIs) and standardized regression-based (SRB) change norms for a comprehensive neuropsychological test battery in the German language. Methods Forty-seven consecutive patients with temporal lobe epilepsy underwent neuropsychological assessments, both before and 12 months after surgery. Practice-effect-adjusted RCIs and SRB change norms for each test score were computed. (...) To assess their usefulness, the presented methods were applied to a clinical sample, and binary logistic regression analyses were conducted to model the odds of achieving improvement in quality of life (QOL) after surgery. Results The determined RCIs at 90% confidence intervals and the SRB equations for each test score included in the test battery are provided. Cohen’s kappa analyses revealed a moderate mean agreement between the two measures, varying from slight to almost perfect agreement across test scores. Using these measures, a negative association between improvement in QOL and decline in verbal memory functions after surgery was detected (adjusted odds ratio = 0.09, p = 0.006). Significance To the best of our knowledge, this study is the first to develop RCIs and SRB change norms necessary for the objective determination of neuropsychological change in a comprehensive test battery in the German language, facilitating the individual monitoring of improvement and decline in each patients’ cognitive functioning and psychosocial situations after epilepsy surgery. The application of the described measures revealed a strong negative association between improvement in QOL and decline in verbal memory functions after surgery. (shrink)

Objective: To determine the usefulness of Q methodology to locate and describe shared subjective influences on clinical decision making among participant physicians using hypothetical cases containing common ethical issues. Design: Qualitative study using by-person factor analysis of subjective Q sort data matrix. Setting: University medical center. Participants: Convenience sample of internal medicine attending physicians and house staff (n = 35) at one midwestern academic health sciences center. Interventions: Presented with four hypothetical cases involving urgent decision making near the end (...) of life, participants selected one of three specific clinical actions offered for each case. Immediately afterward and while considering their decision, each respondent sorted twenty-five subjective self-referent items in terms of the influence of each statement on their decision-making process. By-person factor analysis, where participants are defined as variates, yielded information about the attitudinal background the physicians brought to their consideration of each hypothetical case. We performed a second-order factor analysis on all of the subjective viewpoints to determine if a smaller core of shared attitudes existed across some or all of the four case vignettes. Factor scores for each item and post-sort comments from interviews conducted individually with each respondent guided the interpretation of ethical perspective used by these respondents in making clinical decisions about the cases. Measurements and Main Results: Second-order factor analysis on seventeen viewpoints used by physicians in the four hypothetical urgent decision cases revealed three moderately correlated (r 2 < 40%) subjective core attitudinal guides used broadly among all the cases and among sixteen of the seventeen original factors. Across all the cases, our participants were guided in general by: (1) patient-focused beneficence, (2) a patient- and surrogate-focused perspective that includes risk avoidance, and (3) best interest of the patient guided by ethical values. Economic impact on the physician, expediency in resolution of the situation, and the expense of medical treatment were not found to be influential determinants in this study. Conclusions: Q sorting and by-person factor analysis are useful qualitative methodological tools to study the complex structure of subjective attitudes that influence physicians in making medical decisions. This study revealed the subjective viewpoints used by our physician participants as they made ethically challenging treatment decisions. The three second-order factors identified here are grounded in current bioethical values as well as the personal traits of physicians. The participants' decision methods appear to resemble casuistry more than principle-based decision making. Generalizability of results will require further studies. (shrink)

Emerging medical biotechnology typically exhibits a ‘dual-use’ nature, which, while promoting human well-being, concurrently presents potential risks of misuse or abuse, thereby posing significant threats. Globally, including in China, emerging medical biotechnology is developing rapidly. To understand the views and perspectives of Chinese scientists on dual-use concerns, this empirical study conducted semistructured qualitative interviews with researchers (n=14) from various specialties within the Chinese medical field, analysing their perspectives and ethical considerations regarding dual-use concerns. The findings of (...) this study reveal a spectrum of attitudes among interviewees towards the exploration and application of emerging medical biotechnology, ranging from aggressive to conservative. This tension reflects the complexity and challenges of seeking a balance between promoting scientific innovation and maintaining ethical boundaries. Furthermore, while there is a consensus among scientists that the development and application of biotechnology encompass both risks and benefits, their stances on weighing these factors differ, reflecting how risk perception is influenced by professional limitations. Moreover, although scientists recognise the indispensability of both self-regulation and external oversight in practice, they also exhibit misunderstandings in ethical cognition and misinterpretations of regulatory measures. In light of these findings, it is imperative for us to urgently fortify national regulatory mechanisms and the construction of legal and ethical frameworks while also enhancing the ethical awareness and risk assessment capabilities of researchers. These measures are crucial for minimising the potential risks associated with dual use and fostering the sustainable and responsible development of emerging medical biotechnology. (shrink)

Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018. This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients. A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used. The data obtained from the EMRs included (...) all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006). Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42–56%) and health professionals (56–58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered “the possibility of the patient’s recovery” to be the highest priority (43–55%). There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing. (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)

ObjectivesThe breast cancer stigma affects Health-related quality of life, while general resilience resources, namely, sense of coherence, social support, and coping skills, are thought to alleviate this effect. The study aimed to explore the mediating/moderation role of GRRs in the relationship between stigma and HRQoL and its dimensions in Iranian patients with breast cancer.MethodsIn this cross-sectional study, Stigma Scale for Chronic Illness 8-item version, SOC-13, Medical Outcome Survey- Social Support Scale, Brief COPE, and Functional Assessment of Cancer Therapy-Breast were (...) investigated in a convenience sample of Iranian women with confirmed non-metastatic breast cancer. Following the establishment of correlations using Pearson’s correlation, single and parallel mediation analysis and moderation analysis were conducted to determine the extent to which each GRR might be impacted by stigma or decrease the adverse impact of stigma on HRQoL.ResultsAn analysis of 221 women with the mean age of 47.14 showed that stigma was negatively correlated to all HRQoL’s dimensions, SOC, social support, and the bulk of coping skills. In the single mediation analysis, stigma affected all facets of SOC, all subscales of social support, and positive reframing, which partially reduced breast cancer HRQoL. Stigma affects general HRQoL through damaging meaningfulness, social support, and positive reframing. Meaningfulness was marked as the most impacted GRR in terms of all domains of HRQoL. In parallel mediation, reduced meaningfulness, total social support, and positive reframing were highlighted as the pathways of diminished breast cancer HRQoL. Moderation analysis indicated the higher levels of humor, behavioral disengagement, and use of instrumental support behaviors to be functional in protecting different dimensions of HRQoL, while the results were mixed for venting, especially in patients with mastectomy surgery.ConclusionWhile GRRs may be impacted by stigma, they exert a relatively small protective effect against the impact of stigma on HRQoL. This study provides some novel findings, but longitudinal studies are needed to further verify these before any causal conclusion or recommendations for health policy can be drawn. (shrink)

The article examines the influence of social capital on the quality of life of the Russian population and its particular components. The authors point to the problem associated with the social capital of the individual and determine the levels, namely the micro-level, meso-level, and macro-level, which form the social capital. In the course of the analysis, the authors reveal the theoretical and methodological approaches of foreign and Russian scientists to the concept of social capital and its components. Based on (...) empirical data from sociological research conducted in 2019, the article analyzes the structure of values of the adult population of Russia, highlights the characteristics of social capital and the degree of their influence on the formation of the quality of life. In the course of the research, the authors focus on the micro-level of the formation and influence of social capital, highlighting such components as a social activity and material security of an individual. In the course of the study, it was found that the social capital of a person affects the quality of a person's life, to a certain extent, forming the circle of his/her interests and values, as well as providing real opportunities for the realization of the interests of the individual and meeting his/her needs. The obtained results of the analysis can be useful for further study of the quality of life. (shrink)

Background End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology (...) nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. Conclusions Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. (shrink)

BackgroundJunior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors’ decision-making processes when treating people with dementia who have advance care directives, or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: their legal compliance and decision-making process related to treatment decisions; the factors influencing their clinical decision-making; and the (...) factors associated with accurate responses to one hypothetical vignette. MethodA cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: bacterial pneumonia; or suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.ResultsOverall, 116 junior doctors responded. In Vignette 1, 58% of respondents selected the legally compliant option. Participants who chose the legally compliant option perceived ‘following patient wishes’ and ‘legal requirements to follow ACDs’ as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the ‘ACD is relevant in my decision-making process, but other factors are more relevant’. In Vignette 2, 72% of respondents indicated they would commence treatment and 18% selected they would not commence treatment.. Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.ConclusionsThere are critical gaps in junior doctors’ compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors’ clinical decision-making and ensure compliance with the law is required. (shrink)

Rehabilitation mobility has become a new demand and travel mode for people to pursue active health. A large number of tourists choose to escape the cold in warm places to improve their health every winter. In this study, we collected the health index data of Seasonal Affective Disorder tourists from western China before and after their cold escape in Hainan Island in winter, aiming to compare whether rehabilitating cold escape can improve the Quality of Life of SAD tourists by hierarchical (...) analysis. Compared with previous studies, this paper has the following contributions: Firstly, the study samples were accurately screened according to the pathogenesis of SAD tourists and the confounding factors were strictly controlled; Secondly, the observational experimental method was used to conduct inter-group and intra-group control studies on 695 samples, and the results were more objective and reliable. Thirdly, the effect of treatment on the quality of life of 397 tourists in the rehabilitation mobility group was quantitatively evaluated from three factors including age, gender and sunshine exposure level by multivariate analysis of variance. Research results show that the rehabilitation environment brought by rehabilitation activities can help improve the health status of tourists. Therefore, this paper proposes the concept of “Tourism Therapy” and constructs a theoretical framework. The conclusion of this paper provides a scientific basis and reference for the study of tourism healing as a non-medical alternative therapy. (shrink)

Technological innovations and social developments have led to dramatic changes in the practice of medicine and in the way that scientists conduct medical research. Change has brought beneficial consequences, yet these gains have come at a cost, for many modern medical practices raise troubling ethical questions: Should life be sustained mechanically when the brain's functions have ceased? Should potential parents be permitted to manipulate the genetic characteristics of their embryos? Should society ration medical care to (...) control costs? Should fetal stem cells be experimented upon in an effort to eventually palliate or cure debilitating diseases? Bioethicists analyze and assess moral dilemmas raised by medical research and innovative treatments; they also counsel healthcare practitioners, patients, and their families. In this anthology, fifteen philosophers, social scientists, and academic lawyers assess various aspects of this field. (shrink)

The author reflects on his experience as a medical student to draw out larger life lessons about perseverance, diligence, responsibility and the ethical conduct of life in general.

Although clinical ethics consultation has existed for more than 40 years in the USA and Europe, it was not available in Bulgaria until recently. In introducing clinical ethics consultation into our country, the Modular, Ethical, Treatment, Allocation of resources, Process (METAP) methodology has been preferred because of its potential to be used in resource-poor settings and its strong educational function. This paper presents the results of a METAP evaluation in a hospital palliative care ward in the town of Vratsa. The (...) evaluation was based on Beauchamp and Childress’ four principles of biomedical ethics and involves implementation of specific instruments for clinical ethics decision-making. Research tasks emphasised analyses of ethics meetings in the ward. Data were processed by SPSS v.24 using descriptive statistical analysis. Altogether, 32 ethics meetings of an average duration 20.63 min were conducted on cases involving critically ill patients. Most of the participants (86.0%) expressed satisfaction with the ethics process. The principlist approach supported resolution of conflicts between autonomous patients and their relatives, clarified definitions of “medical benefit” and “social good,” and enabled assessments of the risk of unequal treatment. Even as the specific research tasks were achieved, further participant follow-up is necessary to identify any improvement in healthcare personnel’s ethical competence. METAP worked well in end-of-life care settings. Participants experienced several benefits, including improved team communication, better understanding of patient preferences, and confidence in the correctness of decisions. Despite the significant educational potential of METAP, the need for additional and ongoing ethics training of health professionals should not be underestimated. (shrink)

Aim: To evaluate health-related quality of life of chronic hepatitis B and hepatitis B virus related cirrhosis patients and analyzed specific differences in all dimensions of HRQoL.Methods: A total of 349 patients met selection criteria were enrolled. The 36-Item Short-Form Health Survey was adopted.Results: Results showed that the physiological HRQoL of the cirrhotic group was significantly lower than that of the non-cirrhotic group, the psychological HRQoL was also lower. HRQoL was significantly negatively correlated with liver stiffness. We further evaluated the (...) risk factors associated with poor HRQoL in HBV-related cirrhosis patients. Results showed that positive HBV DNA viral load and HCC family history were independent factors associated with HRQoL in HBV-related cirrhosis. For better risk stratification of patients, multivariable analyses were conducted to explore the independent factors that affected specific physiological and psychological HRQoL. In specific physiological HRQoL, results show that marital status, positive HBV DNA viral load and antiviral drugs were independent factors associated with physiological HRQoL in cirrhosis patients. In psychological HRQoL, only HCC family history was independent risk factors associated with psychological HRQoL.Conclusion: We found that the impaired HRQoL dimensions of HBV related cirrhosis patients differ between the various subpopulations. According to our results, risk stratification, medical decision making and personalizing interventions could be made. (shrink)

This article reformulates Stephan Helmreich´s the ¨microbiomisation of race¨ as the historiality of otherness in the foundations of human microbiome science. Through the lens of my ethnographic fieldwork of a transnational community of microbiome scientists that conducted a landmark human microbiome research on indigenous microbes and its affiliated and first personalised microbiome initiative, the American Gut Project, I follow and trace the key actors, experimental systems and onto-epistemic claims in the emergence of human microbiome science a decade ago. In (...) doing so, I show the links between the reinscription of race, comparative research on the microbial genetic variation of human populations and the remining of bioprospected data for personalised medicine. In these unpredictable research movements, the microbiome of non-Western peoples and territories is much more than a side project or a specific approach within the field: it constitutes the nucleus of its experimental system, opening towards subsequent and cumulative research processes and knowledge production in human microbiome science. The article demonstrates that while human microbiome science is articulated upon the microbial ‘makeup’ of non-wester(nised) communities, societies, and locales, its results and therapeutics are only applicable to medical conditions affecting rich nations (i.e., inflammatory, autoimmune, and metabolic diseases). My reformulation of ¨microbiomisation of race¨ as the condition of possibility of human microbiome science reveals that its individual dimension is sustained by microbial DNA data from human populations through bioprospecting practices and gains meaning through personalised medicine initiatives, informal online networks of pseudoscientific and commodified microbial-related evidence. (shrink)

The level of medical care to patients and the success of the implementation of the national project "Health" depend on the health status and doctor's professionalism. Modern healthcare reform is being implemented by optimizing costs, merging medical organizations, closing ineffective hospitals, expanding the use of high-tech care and informatization of the doctor's activities. All this makes it necessary to assess the health of doctors. Scientists have studied the quality of life and identified the professional burnout of doctors (...) in children's clinics in different age groups. Primary care pediatricians have a higher quality of life score when compared to the standard [1]. However, all groups have a high level of professional burnout. The pre-retirement group of doctors has more unfavorable profile. They are highly professional specialists but may experience emotional discomfort because the pension system has been reformed. This situation requires the introduction of preventive work with doctors of this age as a group with great potential and capable of professional longevity. (shrink)