No discussion of when an individual is dead is meaningful in the absence of a definition of death. If human death is defined as the irreversible loss of the capacity for consciousness combined with the irreversible loss of the capacity to breathe spontaneously (and hence to maintain a spontaneous heart beat) the death of the brainstem will be seen to be the necessary and sufficient condition for the death of the individual. Such a definition of death is not something radically (...) new. It is merely the reformulation -- in the language of the neurophysiologist -- of much older concepts such as the 'departure of the (conscious) soul from the body' and the 'loss of the breath of life'. All death -- in this perspective -- is, and always has been, brainstem death... (shrink)

Four main areas generating confusion in discussion on brain death are identified as a) the relation of criteria of death to concepts of death, b) the argument about whether death is an event or a process, c) the inadequate differentiation of different neurological entities having different cardiac prognoses, and d) insufficient awareness of the separate issues of 'determining death' and 'allowing to die'. It is argued that if by death we mean the dissolution of the human 'organism as a whole', (...) then whole-brain death is death. Behavioural patterns, legitimate in the presence of a cadaver, should be legitimate from the time whole-brain death is diagnosed. (shrink)

A comprehensive analysis of ethical topics in palliative care, combining clinical experience and philosophical rigor. A broad array of topics are explored from historical, legal, clinical, and ethical perspectives, offering both the seasoned clinician and interested lay reader a thorough examination of the complex ethical issues facing patients suffering from life-threatening illness.

As a scientific, materialist worldview becomes increasingly difficult to repudiate, and as philosophers increasingly uncover and articulate the conceptual nature of morality and distinctively moral normativity, the threat of moral anti-realism becomes more and more real. This perspective is argued in Chapter One. Chapter Two discusses how laws and bioethical trends that pertain to the clinical management of patients in a vegetative coma differ from country to country and continue to give rise to unresolved legal debates and scientific controversy. Chapter (...) Three covers how caregivers in palliative care must be supported to better understand patients hopes and needs, making them comfortable to decide when or how much they want to eat. Chapter Four synthesises findings from four empirical studies conducted in Western Africa (Togo) on topics related to the autonomy (end of life decision-making among terminally-ill patients), benevolence and non-malevolence (breaking bad news to elderly patients and their families), and justice (informal payments to physicians, criminal prosecution in cases of HIV transmission) principles of bioethics. Finally, Chapter Five argues that expert members in Ethics committees have an unfair upper-hand, with their decisions trumping other debates in committee deliberations. Qualitative research is brought to bear which illustrates this and which also notes how expertise dilutes the training given to newly appointed ethics committee members. (shrink)

Resource added for the Nursing-Associate Degree 105431, Practical Nursing 315431, and Nursing Assistant 305431 programs.

Background and Aims The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients. Method A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the care of their (...) last patient who died. Findings Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and ‘white’ than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non-religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in ‘other hospital’ specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith. Conclusions Greater acknowledgement of the relationship of doctors' values with clinical decision-making is advocated. (shrink)

ABSTRACT Objectives There is little research on moral uncertainties and distress of palliative and hospice care providers (PHCPs) working in jurisdictions anticipating legalising voluntary assisted dying (VAD). This study examines the perception and anticipated concerns of PHCPs in providing VAD in the State of Queensland, Australia prior to legalisation of the practice in 2021. The findings help inform strategies to facilitate training and support the health and well-being of healthcare workers involved in VAD. Design The study used a qualitative approach (...) to examine and analyse the perception and anticipated concerns of PHCPs regarding challenges of providing assisted dying in Queensland. Fourteen PHCPs were recruited using a purposive sampling strategy to obtain a broad representation of perspectives including work roles, geographical locations and workplace characteristics. Data were collected via one in-depth interview per participant. The transcripts were coded for patterns and themes using an inductive analysis approach following the tradition of Grounded Theory. Setting The study was conducted in hospital, hospice, community and residential aged care settings in Queensland, Australia. These included public and private facilities, secular and faith-based facilities, and regional/rural and urban facilities. Participants Interviews were conducted with fourteen PHCPs: 10 nurses and 4 physicians; 11 female and 3 male. The median number of years of palliative care practice was 17, ranging from 2 to 36 years. For inclusion, participants had to be practising palliative and hospice care providers. Results PHCPs are divided on whether VAD should be considered part of palliative care. Expectations of moral distress and uncertainty about practising VAD were identified in five areas: handling requests, assessing patient capacity, arranging patient transfers and logistical issues, managing unsuccessful attempts, and dealing with team conflicts and stigma. Conclusions The possibility of having to practise VAD causes moral distress and uncertainty for some PHCPs. Procedural clarity can address some uncertainties; moral and psychological distress, however, remains a source of tension that needs support to ensure ongoing care of both patients and PHCPs. The introduction of VAD post-legalisation may present an occasion for further moral education and development of PHCPs. (shrink)

Background: Due to recent legislations on euthanasia and its current practice in the Netherlands and Belgium, issues of end-of-life medicine have become very vital in many European countries. In 2002, the Ethics Working Group of the German Association for Palliative Medicine (DGP) has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia (EUT), physician-assisted suicide (PAS), and terminal sedation (TS). Methods: An anonymous questionnaire was sent to the 411 (...) DGP physicians, consisting of 14 multiple choice questions on positions that might be adopted in different hypothetical scenarios on situations of “intolerable suffering” in end-of-life care. For the sake of clarification, several definitions and legal judgements of different terms used in the German debate on premature termination of life were included. For statistical analysis t-tests and Pearson-correlations were used. Results: The response rate was 61% (n=251). The proportions of the respondents who were opposed to legalizing different forms of premature termination of life were: 90% opposed to EUT, 75% to PAS, 94% to PAS for psychiatric patients. Terminal sedation was accepted by 94% of the members. The main decisional bases drawn on for the answers were personal ethical values, professional experience with palliative care, knowledge of alternative approaches, knowledge of ethical guidelines and of the national legal frame. Conclusions: In sharp contrast to similar surveys conducted in other countries, only a minority of 9.6% of the DGP physicians supported the legalization of EUT. The misuse of medical knowledge for inhumane killing in the Nazi period did not play a relevant role for the respondents’ negative attitude towards EUT. Palliative care needs to be stronger established and promoted within the German health care system in order to improve the quality of end-of-life situations which subsequently is expected to lead to decreasing requests for EUT by terminally ill patients. (shrink)

We agree with Lynch et al. that patients with chronic diseases and Band-Aid treatments are unlikely to benefit from a version of Operation Warp Speed or by deprioritizing standards of scientific ev...

Disabling pain or symptoms can occur at any age from many different causes. Pain and palliative specialists are able to relieve most pain and symptoms, although repeated adjustments to modalities, medications and doses may be needed. Because pain and palliative specialists comprise only a small percentage of physicians, many patients find it difficult to access them or obtain pain relief. Globally, there are too few such specialists to meet existing needs. Most are affiliated with hospice and palliative units, so their (...) accessibility to patients without terminal conditions is negligible. Doctors outside pain and palliative specialties are often unfamiliar with pain guidelines and sceptical about patient reports of unrelieved pain. They are therefore likely to undertreat it. Undertreating pain, however, violates respect for persons and beneficence. This paper reviews literature supporting these claims and offers a narrative description of the author’s attempts to find relief from shingles and postherpetic neuralgia. It argues that physicians in most specialties are not, but should be, familiar with palliative evidence and guidelines so that they are equipped to relieve pain and symptoms quickly and effectively. Such information should be routinely introduced in medical curricula to encourage the mastery of knowledge, attitudes and skills necessary to upholding ethical principles and to ensure that more doctors in any discipline are willing to believe and be compassionate to patients whose pain is unresponsive to initial treatments. Routinely exposing students to such information would better prepare them to fulfil their professional duties to patients and society. (shrink)

Kerridge et al recently published a paper in the journal about organ transplantation and the diagnosis of death.1 Although I appreciate the authors’ efforts to present their arguments about such a controversial issue, I found some inconsistencies in this article that I would like to discussWhen Kerridge and his collaborators discussed the origins of the concept of brain death , they emphasised that after the report of the medical consultants on the diagnosis of death to the US President’s Commission was (...) published in 1981,2 clinicians equated the concept of BD with brainstem death. In fact, the brainstem criterion was first proposed by Mohandas and Chou in Minnesota, in 1971.3 The Minnesota criteria inspired the UK code, which was mainly adopted in UK commonwealth countries.4 This view was afterwards powerfully defended by Christopher Pallis.5 After the US President’s Commission report,2 a lot of countries, and most US states, accepted the whole brain, and not the brainstem, criterion.6Regarding the “dead donor rule”, with the advent of transplant surgery, interest in definitions and diagnosis of death based on brain formulations really acquired a new urgency. None the less, it is important to point out that the concept of BD as death of the individual, did not appear to benefit organ transplantation, but was a consequence of the development of intensive care. As Pallis emphasised, if organ transplant techniques had never been developed, intensive care procedures would have provided the possibility of supplying life support to those cases with destroyed brains and preserved heart function, and physicians would need to face the clinical syndrome called BD.5 When French neurophysiologists and neurologists described the death of the nervous system and coma dépassé, organ transplant techniques were only in the very early stages of development. …. (shrink)

After an important public debate, the law of 22 April 2005 on the rights of the patient and on the end of life has been voted in, in France.1 It gives us an alternative to the Dutch euthanasia model.2 The purpose of this law is to develop palliative care , to form healthcare professionals for terminally ill patients, to make them more sensitive to such situations and, finally, also to inform public opinion and jurists. Decrees of application were published on (...) 7 February 2006.From now on, a collective and transparent procedure is compulsory when it requires limiting or interrupting …. (shrink)

BackgroundPalliative sedation and analgesia are employed in patients with refractory and intractable symptoms at the end of life to reduce their suffering by lowering their level of consciousness. The doctrine of double effect, a philosophical principle that justifies doing a “good action” with a potentially “bad effect,” is frequently employed to provide an ethical justification for this practice. Main textWe argue that palliative sedation and analgesia do not fulfill the conditions required to apply the doctrine of double effect, and therefore (...) its use in this domain is inappropriate. Furthermore, we argue that the frequent application of the doctrine of double effect to palliative sedation and analgesia reflects physicians’ discomfort with the complex moral, intentional, and causal aspects of end-of-life care. ConclusionsWe are concerned that this misapplication of the doctrine of double effect can consequently impair physicians’ ethical reasoning and relationships with patients at the end of life. (shrink)

Kerridge et al recently published a paper in the journal about organ transplantation and the diagnosis of death.1 Although I appreciate the authors’ efforts to present their arguments about such a controversial issue, I found some inconsistencies in this article that I would like to discussWhen Kerridge and his collaborators discussed the origins of the concept of brain death, they emphasised that after the report of the medical consultants on the diagnosis of death to the US President’s Commission was published (...) in 1981,2 clinicians equated the concept of BD with brainstem death. In fact, the brainstem criterion was first proposed by Mohandas and Chou in Minnesota, in 1971.3 The Minnesota criteria inspired the UK code, which was mainly adopted in UK commonwealth countries.4 This view was afterwards powerfully defended by Christopher Pallis.5 After the US President’s Commission report,2 a lot of countries, and most US states, accepted the whole brain, and not the brainstem, criterion.6Regarding the “dead donor rule”, with the advent of transplant surgery, interest in definitions and diagnosis of death based on brain formulations really acquired a new urgency. None the less, it is important to point out that the concept of BD as death of the individual, did not appear to benefit organ transplantation, but was a consequence of the development of intensive care. As Pallis emphasised, if organ transplant techniques had never been developed, intensive care procedures would have provided the possibility of supplying life support to those cases with destroyed brains and preserved heart function, and physicians would need to face the clinical syndrome called BD.5 When French neurophysiologists and neurologists described the death of the nervous system and coma dépassé, organ transplant techniques were only in the very early stages of development. …. (shrink)

Contrary to the widespread concern about over-treatment at the end of life, today, patient preferences for palliative care at the end of life are frequently respected. However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw life-sustaining treatment. However, (...) we argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, we integrate the relevant arguments that have been put forward in the academic discussion about ‘futile’ treatment into an ethical algorithm with five guiding questions: (1) Is there a chance that medical intervention will be effective in achieving the patient's treatment goal? (2) How does the physician evaluate the expected benefit and the potential harm of the treatment? (3) Does the patient understand his or her medical situation? (4) Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs? (5) Does the treatment require many resources? This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families. (shrink)

Medical assistance in dying was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians’ willingness to provide MAiD and patients’ legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this paper (...) was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians. (shrink)

The paper examines needs experienced during the late stage of AIDS with reference to a phenomenological explication of unstructured interviews with persons with acute symptoms of the disease. A distinct pattern of health care needs emerged, characterized by a relative emphasis on the psychosocial as distinct from biomedical or economical aspects of the disease and emotion focused coping strategies. Results are compared with those of other studies and implications for palliative care are discussed. Indo-Pacific Journal of Phenomenology , Volume 1, (...) Edition 1 April 2001. (shrink)

In this commentary I assess the possible harms to a fetus with trisomy 18 of continued life. I argue that, although there is good reason to avoid subjecting infants to major surgery and prolonged intensive care where there is little chance of benefit, doctors should support and engage honestly with parents who decide to continue their pregnancies. We should ensure that infants with trisomy 18 have access to high quality palliative care.

Background Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? -/- Aims The paper aims to identify changes and challenges in palliative care due to the use of (...) SST. In addition, normative guiding criteria for the use of SST are developed. -/- Methods The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. -/- Results and Conclusion First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. (shrink)

Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the use of sedation (...) was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (shrink)

With more people in the world living into older age, Alzheimer's and other Dementias: The Facts takes a comprehensive look at the spread of dementia, and provides authoritative information and practical advice for sufferers, their families, and the medical professionals who care for them. -/- Written by a consultant in old age psychiatry, the book provides an overview of all the different types of dementia (including younger-onset dementias), from the most-recognized - Alzheimer's - to the less-frequent types, such as those (...) caused by inherited metabolic disorders or HIV. The book guides the reader step-by-step through how the brain works, and explains in clear and simple language the effect of dementias on the brain, and the impact on an individual's cognitive function. -/- A dedicated chapter explains how a diagnosis is reached, including the different modes of assessment, from blood tests carried out by a GP, to specialist scans, highlighting how the brain actually works. Detailed sections cover the latest treatments available, including the controversial use of antipsychotic medication, and the possibility of disease-modifying treatments in the future. -/- The book also explains how the multi-disciplinary team works together to look after the sufferer's social needs, such as bathing and washing, as well as their spiritual and palliative needs. Alzheimer's and other Dementias: The Facts provides all the relevant information and guidance for sufferers, family and their care-givers to choose the right intervention at the right time, to create - as the book advocates - a unique and personalized management plan. (shrink)

The challenge of determining that therapeutic intervention is futile is a recurrent ethical theme in critical care medicine. The process by which that determination is reached often involves demanding collaborative and interdisciplinary conversation and deliberation within the context of hospital policy, including ethics committee guidelines. The subsequent decision as to what happens next depends on resources, such as palliative care services, hospice, other hospital protocols, and, of course, family support.

Filial piety is a Confucian concept derived from Chinese culture, which advocates a set of moral norms, values, and practices of respect and caring for one’s parents. According to the dual-factor model of filial piety, reciprocal and authoritarian filial piety are two dimensions of filial piety. Reciprocal filial piety is concerned with sincere affection toward one’s parent and a longstanding positive parent-child relationship, while authoritarian filial piety is about obedience to social obligations to one’s parent, often by suppressing one’s own (...) wishes to conform the demands of the parent. The primary aim of this study is to investigate the moderating effect of culture on the relationships between filial piety and palliative care knowledge. The secondary aim is to investigate whether filial piety is a universal construct across Singaporean and Australian cultures. A total of 508 participants living in Singapore and Australia were surveyed between May and October 2020. The final sample comprised of 406 participants, with 224 Singaporeans and 182 Australians. There were 289 females, 115 males, and two unspecified gender in the sample, with an average age of 27.27 years. Results indicated a significant effect of culture on authoritarian filial piety and palliative care knowledge. Singaporeans showed higher authoritarian filial piety and higher palliative care knowledge than Australians. However, no effect of culture was found on reciprocal filial piety. Overall, no significant correlation existed between palliative care knowledge and reciprocal filial piety and authoritarian filial piety. For Singaporeans, a weak negative correlation was found between palliative care knowledge and authoritarian filial piety. In contrast, Australians and Singaporeans indicated a positive, moderate correlation between reciprocal and authoritarian filial piety. Further, culture moderated the relationship between authoritarian filial piety and palliative care knowledge. High authoritarian filial piety was associated with increased palliative care knowledge among Australians, while high authoritarian filial piety was associated with decreased palliative care knowledge among Singaporeans. The results support the conceptualization of filial piety as a possible psychological universal construct. In addition, the results point out an important implication that public health programs should target the appropriate filial piety types to enhance palliative care knowledge among Singaporeans and Australians. (shrink)

French healthcare networks aim to help healthcare workers to take care of patients by improving cooperation, coordination and the continuity of care. When applied to palliative care in the home, they facilitate overall care including medical, social and psychological aspects. French legislation in 2002 required that an information document explaining the functioning of the network should be given to patients when they enter a healthcare network. The law requires that this document be signed. Ethical issues arise from this legislation with (...) regard to the validity of the signature of dying patients. Signature of the consent form by a guardian or trustee, a designated person—the Person of Trust—transforms the doctor–patient relationship into a triangular doctor–patient–third-party relationship. (shrink)

Patients who are dying of cancer usually give up eating and then stop drinking. This raises ethical dilemmas about providing nutritional support and fluid replacement. The decision-making process should be based on a knowledge of the risks and benefits of giving or withholding treatments. There is no clear evidence that increased nutritional support or fluid therapy alters comfort, mental status or survival of patients who are dying. Rarely, subcutaneous fluid administration in the dying patient may be justified if the family (...) remain distressed despite due consideration of the lack of medical benefit versus the risks. Some cancer patients who are not imminently dying become dehydrated from reversible conditions such as hypercalcaemia. This may mimic the effects of advanced cancer. These conditions should be sought and fluid replacement therapy should be given along with the specific treatments for the condition. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical model and are restrictive in terms (...) of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom‐focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the (...) permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom‐based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom‐based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients. (shrink)

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation.Objectives: To examine the characteristics and location of death among hospitalised children, investigate yearwise trends in these characteristics and test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health would lead to significant (...) changes in the characteristics of death among hospitalised children.Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period for children aged 0–18 years. Demographic details, location of deaths, source of admission , length of stay and final diagnoses were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test , χ2 test and Cochran–Armitage test .Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority were among infants. The main diagnoses at death included congenital malformations , perinatal diseases , cardiovascular disorders and neoplasms . Most deaths occurred in an intensive care unit environment , with a significant increase over the years . There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort . Infants with congenital malformations and perinatal conditions were more likely to die in an ICU , and older children with malignancy outside the ICU . Children stayed for a median of 13 days on a hospital ward before being admitted to an ICU where they died.Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study. (shrink)

RationaleSurrogates of critically ill patients often have inaccurate expectations about prognosis. Yet there is little research on how intensive care unit clinicians should discuss prognosis, and existing expert opinion-based recommendations give only general guidance that has not been validated with surrogate decision makers.ObjectiveTo determine the perspectives of key stakeholders regarding how prognostic information should be conveyed in critical illness.MethodsThis was a multicenter study at three academic medical centers in California, Pennsylvania, and Washington. One hundred eighteen key stakeholders completed in-depth semistructured (...) interviews. Participants included 47 surrogates of adult patients with acute respiratory distress syndrome; 45 clinicians working in study ICUs, including physicians, nurses, social workers, and spiritual care providers; and 26 experts in health communication, decision science, ethics, family-centered care, geriatrics, healthcare disparities, palliative care, psychology, psychiatry, and critical care.Measurements and main resultsThere was broad support among surrogates for existing expert recommendations, including truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family's needs, and checking for understanding. In addition, stakeholders offered suggestions that add specificity to existing recommendations, including: In addition to conveying prognostic estimates, clinicians should help families "see the prognosis for themselves" by showing families radiographic images and explaining the clinical significance of physical manifestations of severe disease at the bedside. Many physicians did not support using numeric estimates to convey prognosis to families, whereas many surrogates, clinicians from other disciplines, and experts believed numbers could be helpful. Clinicians should conceptualize prognostic communication as an iterative process that begins with a preliminary mention of the possibility of death early in the ICU stay and becomes more detailed as the clinical situation develops. Although prognostic information should be initially disclosed by physicians, other members of the multidisciplinary team-nurses, social workers, and spiritual care providers-should be given explicit role responsibilities to reinforce physicians' prognostications and help families process a poor prognosis emotionally.ConclusionsFamily members, clinicians, and experts identified specific communication behaviors that clinicians should use to discuss prognosis in the critical care setting. These findings extend existing opinion-based recommendations and should guide interventions to improve communication about prognosis in ICUs. (shrink)

Background: Although nurses worldwide are confronted with euthanasia requests from patients, the views of palliative care nurses on their involvement in euthanasia remain unclear.Objectives: In depth exploration of the views of palliative care nurses on their involvement in the entire care process surrounding euthanasia.Design: A qualitative Grounded Theory strategy was used.Setting and participants: In anticipation of new Belgian legislation on euthanasia, we conducted semistructured interviews with 12 nurses working in a palliative care setting in the province of Vlaams-Brabant.Results: Palliative care (...) nurses believed unanimously that they have an important role in the process of caring for a patient who requests euthanasia, a role that is not limited to assisting the physician when he is administering life terminating drugs. Nurses’ involvement starts when the patient requests euthanasia and ends with supporting the patient’s relatives and healthcare colleagues after the potential life terminating act. Nurses stressed the importance of having an open mind and of using palliative techniques, also offering a contextual understanding of the patient’s request in the decision making process. Concerning the actual act of performing euthanasia, palliative care nurses saw their role primarily as assisting the patient, the patient’s family, and the physician by being present, even if they could not reconcile themselves with actually performing euthanasia.Conclusions: Based on their professional nursing expertise and unique relationship with the patient, nurses participating as full members of the interdisciplinary expert team are in a key position to provide valuable care to patients requesting euthanasia. (shrink)

Nnewi is situated some 30 kilometres South East of Onitsha in Anambra State in the southeastern part of Nigeria. This highly commercial town has undergone rapid urbanisation and industrialisation within the past two decades, since the end of the 1967–1970 Nigerian civil war. The Igbo community of the study area had traditionally employed bioconversion methods and other indigenous technology to process or recycle bio and non-degradable wastes. Industrialisation has enjoyed priority status in this locality as a requirement for modernisation and (...) economic progress. The rapid urbanisation, aggressive industrialisation, and the attendant uncontrolled population growth have had a deleterious impact on the environment. There is now a wide range of industrial wastes that are released daily into the environment. Effects of these activities on the socio-cultural practices of the people, plant genetic resources and the environment are highlighted. In addition to palliative measures suggested here, a call is made to revisit the successful indigenous waste treatment and management technology formerly practised by the Igbo community. The importance of combining modern biotechnological approaches with the indigenous technology, norms and practices of Nwewi people to effect suitable waste treatment and management, as well as improving the living habits and the education of the people about their environment, is recommended. (shrink)

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life—including fatigue, pain, dyspnea, and anxiety—with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required (...) a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States’ Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden’s theory of social justice “as the moral foundation of public health and health policy” to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care. (shrink)

Looking Beneath the Surface explores Arab-Islamic and Western perspectives on medical ethical issues: genetic research and treatment, abortion, organ donation, and palliative sedation and euthanasia. The contributions in this volume discuss the state of the art, the role of laws, counseling, and spiritual counseling in the decision-making process. The different approaches to the ethical issues, ways of moral reasoning, become clear in these contributions, especially the role of tradition for Islam and the importance of autonomy for the West. Beneath the (...) differences, however, the reader will also discover common values, such as the role of dignity and the value of life, and similar practices. Some of the main differences are sociocultural in nature, rather than religious as such. Well-known experts in the fields of medicine and ethics have contributed to this volume from different religious and secular backgrounds. The book offers a carefully written introduction and final chapter on intercultural comparisons. Looking Beneath the Surface is more than a collection of writings on issues in medical ethics: it helps the reader to compare different paradigms of accountability and moral reasoning. (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

BackgroundAn analysis of the position statements of secular US medical and surgical professional societies on physician-assisted suicide (PAS) and euthanasia have not been published recently. Available statements were evaluated for position, content, and sentiment.MethodsIn order to create a comprehensive list of secular medical and surgical societies, the results of a systematic search using Google were cross-referenced with a list of societies that have a seat on the American Medical Association House of Delegates. Societies with position statements were identified. These statements (...) were divided into 5 categories: opposed to PAS and/or euthanasia, studied neutrality, supportive, acknowledgement without statement, and no statement. Linguistic analysis was performed using RapidMinder in order to determine word frequency and sentiment respective to individual statements. To ensure accuracy, only statements with word counts > 100 were analyzed. A 2-tailed independentttest was used to test for variance among sentiment scores of opposing and studied neutrality statements.ResultsOf 150 societies, only 12 (8%) have position statements on PAS and euthanasia: 11 for PAS (5 opposing and 4 studied neutrality) and 9 for euthanasia (6 opposing and 2 studied neutrality). Although the most popular words used in opposing and studied neutrality statements are similar, notable exceptions exist (suicide,medicine, andtreatmentappear frequently in opposing statements, but not in studied neutrality statements, whereaspsychologists,law, andindividualsappear frequently in studied neutrality statements, but not in opposing statements). Sentiment scores for opposing and studied neutrality statements do not differ (mean, 0.094 vs. 0.104;P = 0.90).ConclusionsFew US medical and surgical societies have position statements on PAS and euthanasia. Among them, opposing and studied neutrality statements share similar linguistic sentiment. Opposing and studied neutrality statements have clear differences, but share recommendations. Both opposing and studied neutrality statements cite potential risks of PAS legalization and suggest that good palliative care might diminish a patient’s desire for PAS. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We (...) analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

LARSEN A‐C. Nursing Inquiry 2012; 19: 334–344 Trappings of technology: casting palliative care nursing as legal relationsCommunity palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in ‘real time’. This paper is guided by Heidegger’s approach to technologies and Habermas’ insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing’s (...) professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients’ legal rights to informational privacy and confidentiality. It explores nurses’ views of their nursing responsibilities regarding clients’ legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. (shrink)