Background: Black, Asian and minority ethnic groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks. Objective: To identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent. Methods: Three-phase programme (...) comprising community-based research involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; hospital-based research examining staff practices and influences on family consent through ethics discussion groups with staff, a study on intensive care units and interviews with bereaved ethnic minority families; and development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts. Participants: Community studies: 228 focus group participants; hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and evaluation: 66 health professionals. Data sources: Focus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation. Review methods: Systematic review and narrative synthesis. Results: Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication. Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation. Limitations: Participants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families. Conclusions: The research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS. Future work: Greater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families. Funding: The National Institute for Health Research Programme Grants for Applied Research programme. (shrink)

Bollen et al, replying to my own article, describe, in great detail, administrative and logistical aspects of euthanasia approval and organ donation in the Netherlands. They seem to believe that no useful lessons can be drawn from experiences of related groups such as euthanasia patients who cannot donate organs; patients who chose assisted suicide as opposed to euthanasia; patients in intensive care units and their relatives and suicidal young people as if we can only learn about (...) class='Hi'>organ donation in euthanasia patients by studying this exact group and no other, no matter how closely related and obviously relevant. However, it is not only permissible but also absolutely essential to gather evidence that goes beyond immediate point of interest and carefully study groups that share important features with it. Also, groups eligible for euthanasia are constantly expanding, theoretically, legally and practically, and it would be irresponsible to not foresee what are likely future developments. Finally, myopic focus on the technicalities of the procedure misses psychological reality that drives decisions and behaviours and which rarely mimics administrative timelines. Patients proceeding through euthanasia pipeline already face substantial situational pressure and adding organ donation on top of it can make the whole process work as a commitment device. By allowing euthanasia patients to donate their organs, we are giving them additional reason to end their lives, thus creating an unbreakable connection between the two. (shrink)

BackgroundA patient who fulfils the due diligence requirements for euthanasia, and is medically suitable, is able to donate his organs after euthanasia in Belgium, the Netherlands and Canada. Since 2012, more than 70 patients have undergone this combined procedure in the Netherlands. Even though all patients who undergo euthanasia are suffering hopelessly and unbearably, some of these patients are nevertheless willing to help others in need of an organ. Organ donation after euthanasia is a so-called donation after circulatory (...) death (DCD), Maastricht category III procedure, which takes place following cardiac arrest, comparable to donation after withdrawal of life sustaining therapy in critically ill patients. To minimize the period of organ ischemia, the patient is transported to the operating room immediately after the legally mandated no-touch period of 5 min following circulatory arrest. This means that the organ donation procedure following euthanasia must take place in the hospital, which appears to be insurmountable to many patients who are willing to donate, since they already spent a lot of time in the hospital. Case presentationThis article describes the procedure of organ donation after euthanasia starting at home (ODAEH) following anesthesia in a former health care professional suffering from multiple system atrophy. This case is unique for at least two reasons. He spent his last conscious hours surrounded by his family at home, after which he underwent general anaesthesia and was intubated, before being transported to the hospital for euthanasia and organ donation. In addition, the patient explicitly requested the euthanasia to be performed in the preparation room, next to the operating room, in order to limit the period of organ ischemia due to transport time from the intensive care unit to the operating room. The medical, legal and ethical considerations related to this illustrative case are subsequently discussed.ConclusionsOrgan donation after euthanasia is a pure act of altruism. This combined procedure can also be performed after the patient has been anesthetized at home and during transportation to the hospital. (shrink)

BackgroundMoral distress (MD) is an emotional and psychological response to morally challenging dilemmas. Moral distress is experienced frequently by nurses in the intensive care unit (ICU) and can result in emotional anguish, work dissatisfaction, poor patient outcomes, and high levels of nurse turnover. Opportunities to discuss ethically challenging situations may lessen MD and its associated sequela.ObjectiveThe purpose of this project was to develop, implement, and evaluate the impact of nursing ethics huddles on participants’ MD, clinical ethics knowledge, work (...) satisfaction, and patient care among ICU nurses.Sample and SettingThe sample, 32 nurses from three ICU settings in an 800-bed tertiary academic medical center, participated in six nursing ethics huddles over a two-month period.MethodsAlvita K. Nathaniel’s Theory of Moral Reckoning guided development of the nursing ethics huddle process.1 The Moral Distress Thermometer was administered at three data points: baseline level of MD, and pre- and post-huddle to determine changes in the subjects’ level of MD.2 Focused content analysis was used to analyze qualitative responses from questionnaires about the subjects’ perception of the effect of the huddles on work satisfaction and patient care. Knowledge attainment was evaluated via open-ended short-answer questions.ResultsOverall, use of nurse-ethicist-led nursing ethics huddles was associated with improved quality of work life, patient care, and clinical ethics knowledge. The change in pre- and post-nursing ethics huddles MD scores was statistically significant (p < 0.0001). (shrink)

BackgroundThe intensive care unit entails working as a team in rescuing patients from life-threatening conditions. The care being given by the team could also be done by nurses and other health professionals through the coordinated use of all medical practices.ObjectiveTo determine the opinion of nurses on the ethical problems they experienced while working as a team in the intensive care units of a university hospital.MethodThe descriptive research was conducted on nurses working in intensive (...) care units. A 56-item data collection form consisting of two parts developed by the researchers was used. Frequency and median were evaluated, and statistical calculations were used for group comparisons.ResultsOut of the 82 nurses who participated in the study, 65 were university graduates. About 52 of the participants were female with a mean age of 28.12 ± 5.84; 26 had intensive care certification, and 54 had ethical training. The internal intensive care unit nurses were less satisfied with their jobs, able to use tools, said that they had the right to refuse the patient compared to the surgical intensive care unit nurses. Discussion and conclusions: It is a positive situation for the participants to score low with ethical problems based on suggestion as the probability of meeting with their teammates. However, it is important that the problems that affect the motivation of the nurses are different according to the intensive care unit and the employees. (shrink)

Brain death certification can be a clinically and ethically challenging affair. Healthcare workers are expected to refer patients for brain death certification to identify potential organ donors, but family members may be ill-prepared for this turn of events. Already distraught families may not appreciate delays in brain death certification, but such delays are common because of the need to manage the patient’s altered physiological state to allow testing. Opportunities for donation are sometimes lost because of the unnecessary delay. With (...) focus on an opt-out organ donation law, we discuss causes of delays in brain death certification, and the ethical issues faced by clinicians in using tests to certify patients. To resolve the issues, we argue for the use of supplementary confirmatory tests as part of a more protocol-driven approach to brain death certification to avoid delays. Such tests should be regarded as part of the donation process funded by the state. (shrink)

Health Care Ethics examines the way ethical dilemmas are played out in everyday clinical practice and argues for an approach to ethical decision-making which focuses more on patient needs than competing professional interests. While advances in medical science and technology have improved the ability to save and prolong lives, they have also given rise to fundamental questions about what constitutes life and personhood, especially in the context of what are termed 'persistent vegetative state' and 'brain death'. Drawing on (...) the example of intensive care where such questions feature strongly in everyday practice, Kath M Melia examines how decisions are taken within the context of multiprofessional teamworking, including · whether to admit a patient and commence treatment · what the aim of treatment should be (i.e. palliation, care or cure) · when to limit, withhold or withdraw treatment · when to donate organs. As an area in which different professional groups work closely together, the author argues that there are lessons to be learnt from intensive care which can be applied to ethical decision making in all areas of health care for the greater good of patients. The book makes a significant contribution to the literature on ethics in health care and to the development of ethical decision making which prioritises the needs of patients. It is essential reading for ethicists, sociologists and health care professionals. (shrink)

BackgroundThe worsening COVID-19 pandemic in South Africa poses multiple challenges for clinical decision making in the context of already-scarce ICU resources. Data from national government and the last published national audit of ICU resources indicate gross shortages. While the Critical Care Society of Southern Africa (CCSSA) guidelines provide a comprehensive guideline for triage in the face of overwhelmed ICU resources, such decisions present massive ethical and moral dilemmas for triage teams. It is therefore important for the health system to (...) provide clinicians and critical care facilities with as much support and resources as possible in the face of impending pandemic demand. Following a discussion of the ethical considerations and potential challenges in applying the CCSSA guidelines, the authors propose a framework for regional triage committees adapted to the South African context.DiscussionBeyond the national CCSSA guidelines, the clinician has many additional ethical and clinical considerations. No single ethical approach to decision-making is sufficient, instead one which considers multiple contextual factors is necessary. Scores such as the Clinical Frailty Score and Sequential Organ Failure Assessment are of limited use in patients with COVID-19. Furthermore, the clinician is fully justified in withdrawing ICU care based on medical futility decisions and to reallocate this resource to a patient with a better prognosis. However, these decisions bear heavy emotional and moral burden compounded by the volume of clinical work and a fear of litigation.ConclusionWe propose the formation of Provincial multi-disciplinary Critical Care Triage Committees to alleviate the emotional, moral and legal burden on individual ICU teams and co-ordinate inter-facility collaboration using an adapted framework. The committee would provide an impartial, broader and ethically-sound viewpoint which has time to consider broader contextual factors such as adjusting rationing criteria according to different levels of pandemic demand and the latest clinical evidence. Their functioning will be strengthened by direct feedback to national level and accountability to a national monitoring committee. The potential applications of these committees are far-reaching and have the potential to enable a more effective COVID-19 health systems response in South Africa. (shrink)

We respond to Morgan and Feeley’s critique on our article “Mass Media in Organ Donation: Managing Conflicting Messages and Interests.” We noted that Morgan and Feeley agree with the position that the primary aims of media campaigns are: “to educate the general public about organ donation process” and “help individuals make informed decisions” about organ donation. For those reasons, the educational messages in media campaigns should not be restricted to “information from pilot work or focus groups” (...) but should include evidence-based facts resulting from a comprehensive literature research. We consider the controversial aspects about organ donation to be relevant, if not necessary, educational materials that must be disclosed in media campaigns to comply with the legal and moral requirements of informed consent. With that perspective in mind, we address the validity of Morgan and Feeley’s claim that media campaigns have no need for informing the public about the controversial nature of death determination in organ donation. Scientific evidence has proven that the criteria for death determination are inconsistent with the Uniform Determination of Death Act and therefore potentially harmful to donors. The decision by campaign designers to use the statutory definition of death without disclosing the current controversies surrounding that definition does not contribute to improved informed decision making. We argue that if Morgan and Feeley accept the important role of media campaigns to enhance informed decision making, then critical controversies should be disclosed. In support of that premise, we will outline: (1) the wide-spread scientific challenges to brain death as a concept of death; (2) the influence of the donor registry and team-huddling on the medical care of potential donors; (3) the use of authorization rather than informed consent for donor registration; (4) the contemporary religious controversy; and (5) the effects of training desk clerks as organ requestors at the Department of Motor Vehicles offices. We conclude that organ donation is a medical procedure subject to all the ethical obligations that the medical profession must uphold including that of transparency and truthfulness. (shrink)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions (...) with families facing a myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, (...) intrapersonal (attitudes and beliefs), interpersonal (behaviors), and system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care. (shrink)

Background: Nurses face challenges regarding professional identify. Being unaware of these challenges and not owning positive professional identify leads to a lack of self-confidence. Thus, nurses face problems in interpersonal communication and lose their attachment to their profession. Few studies have engaged with impediments to forming positive professional identity in relation to intensive care nurses. Objective: The purpose of this study is to investigate the impediments to forming positive professional identity in nurses working in intensive care (...) unit. Research design: In this study, the conventional content analysis method was used in order to obtain the impediments to forming positive professional identities in nurses. Data were collected through 15 semi-structured interviews and 2 focus group interviews from March 2015 to June 2016. Purposive sampling was used and participants were recruited until data saturation was reached; they were then analyzed using the conventional content analysis method. Participants and research context: In total, 24 intensive care unit nurses from one hospital in Northern Iran were selected through purposive sampling. Ethical consideration: This study was approved by the Ethics Committee of Shiraz University of Medical Sciences. Findings: Four main themes of professional identity challenges were extracted from the analysis of the data: neglect of professional status of nursing; distrust of nursing knowledge; unprofessional performance; and low professional attraction. Discussion and conclusion: Nurses stated that the neglect of the professional status of nursing and distrust of nursing knowledge have always been a hindrance in forming a positive professional identity. They also mentioned that unprofessional performance and low professional attraction are the other influencing factors in this regard. Thus, detecting these factors can guide nurses and their managers towards creating positive professional identity, and as a result, will improve their job satisfaction, professional advancement, and durability. (shrink)

The Organ Donation Act 2019 has introduced an opt-out organ donor register in England, meaning that consent to the donation of organs upon death is presumed unless an objection during life was actively expressed. By assessing the rights of the dead over their organs, the sick to those same organs, and the role of consent in their requisition, this paper interrogates whether such paradigms for deceased organ donation are ethically justifiable. Where legal considerations are applicable, I (...) focus on the recent changes in England as a case in point; however, this paper ultimately challenges the justifiability of opt-out systems in any form, concluding that ethical solutions to organ shortage do not lie in opt-out systems of deceased organ procurement. (shrink)

Background and PurposeMany critically ill patients in intensive care units (ICUs) are unable to communicate their wishes about goals of care, particularly about the use of life-sustaining treatments. Surrogates and clinicians struggle with medical decisions because of a lack of clarity regarding patients’ preferences, leading to prolonged hospitalizations and increased costs. This project focused on the development and implementation of a tool to facilitate a better communication process by (1) assuring the early identification of a surrogate (...) if indicated on admission and (2) clarifying the decision-making standards that the surrogate was to use when participating in decision making. Before introducing the tool into the admissions routine, the staff were educated about its use and value to the decision-making process.Project and MethodsThe study was to determine if early use of a simple method of identifying a patient’s surrogate and treatment preferences might impact length of stay (LOS) and total hospital charges. A pre- and post-intervention study design was used. Nurses completed the surrogacy information tool for all patients upon admission to the neuroscience ICU. Subjects (total N=203) were critically ill patients who had been on a mechanical ventilator for 96 hours or longer, or in the ICU for seven days or longer. The project included staff education on biomedical ethics, critical communication skills, early identification of families and staff in crisis, and use of a simple tool to document patients’ surrogates and previously expressed care wishes. Data on hospital LOS and hospital charges were collected through a retrospective review of medical records for similar four-month time frames pre- and post-implementation of the assessment tool.ResultsSignificant differences were found between pre- and post-groups in terms of hospital LOS (F=6.39, p=.01) and total hospital charges (F=7.03, p=.009).ConclusionsProject findings indicate that the use of a simple admission assessment tool, supported by staff education about its completion, use, and available resources, can decrease LOS and lower total hospital charges. The reasons for the difference between the pre- and post-intervention groups remain unclear. Further research is needed to evaluate if the quality of communications between patients, their legally authorized representatives, and clinicians—as suggested in the literature—may have played a role in decreasing LOS and total hospital charges. (shrink)

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring of (...) dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

Normal 0 false false false MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} This article discusses a series of ethical and religious elements that occur in the debate concerning altruistic living unrelated organ donation. Our main focus is on the ethical attitude of altruist donation. In order to illustrate the connections between ethics and religion we use as a case study (...) the group of the so-called “Jesus Christians”. It is evident that this group, as a case study, is more important for the ethical and religious issues than for the medical issues related to organ donation and transplantation. However, it suggests the potential that, in certain cultural contexts, ethics and religion may have in promoting the idea of altruist donation. (shrink)

This paper examines questions concerning elective ventilation, contextualised within English law and policy. It presents the general debate with reference both to the Exeter Protocol on elective ventilation, and the considerable developments in legal principle since the time that that protocol was declared to be unlawful. I distinguish different aspects of what might be labelled elective ventilation policies under the following four headings: ‘basic elective ventilation’; ‘epistemically complex elective ventilation’; ‘practically complex elective ventilation’; and ‘epistemically and practically complex elective ventilation’. (...) I give a legal analysis of each. In concluding remarks on their potential practical viability, I emphasise the importance not just of ascertaining the legal and ethical acceptability of these and other forms of elective ventilation, but also of assessing their professional and political acceptability. This importance relates both to the successful implementation of the individual practices, and to guarding against possible harmful effects in the wider efforts to increase the rates of posthumous organ donation. (shrink)

We anticipate a further decline of patients who eventually will become brain dead. The intensive care unit (ICU) is considered a last resort for patients with severe and multiple organ dysfunction. Patients with primary central nervous system failure constitute the largest group of patients in which life-sustaining treatment is withdrawn. Almost all these patients are unconscious at the moment physicians decide to withhold and withdraw life-sustaining measures. Sometimes, however competent ICU patients state that they do not (...) want to live anymore because of the severity of their illness or the poor prognosis and ask for withdrawal of life-sustaining measures like mechanical ventilation. Do we consider the unconscious patient as potential organ donor before withdrawal of mechanical ventilation? This is paradoxically rare in the case of the conscious ICU patient. Is it practically possible and ethically feasible to obtain consent for organ donation from this group of patients? (shrink)

Background Ethical decision making in intensive care is a demanding task. The need to proceed to ethical decision is considered to be a stress factor that may lead to burnout. The aim of this study is to explore the ethical problems that may increase burnout levels among physicians and nurses working in Portuguese intensive care units . A quantitative, multicentre, correlational study was conducted among 300 professionals.Results The most crucial ethical decisions made by professionals working in (...) ICU were related to communication, withholding or withdrawing treatments and terminal sedation. A positive relation was found between ethical decision making and burnout in nurses, namely, between burnout and the need to withdraw treatments , to withhold treatments and to proceed to terminal sedation . This did not apply to physicians. Emotional exhaustion was the burnout subdimension most affected by the ethical decision. The nurses' lack of involvement in ethical decision making was identified as a risk factor. Nevertheless, in comparison with nurses , it was the physicians who more keenly felt the need to proceed to ethical decisions in ICU.Conclusions Ethical problems were reported at different levels by physicians and nurses. The type of ethical decisions made by nurses working in Portuguese ICUs had an impact on burnout levels. This did not apply to physicians. This study highlights the need for education in the field of ethics in ICUs and the need to foster inter-disciplinary discussion so as to encourage ethical team deliberation in order to prevent burnout. (shrink)

Background Moral distress is a serious problem for health care personnel. Surveys, individual interviews, and focus groups may not capture all of the effects of, and responses to, moral distress. Therefore, we used a new participatory action research approach—moral conflict assessment (MCA)—to characterize moral distress and to facilitate the development of interventions for this problem. Aim To characterize moral distress by analyzing responses of intensive care unit (ICU) personnel who participated in the MCA process. Research Design (...) In this qualitative study, we invited all ICU personnel at 3 urban hospitals to participate in individual or group sessions using the 8-step MCA tool. These sessions were facilitated by either a clinical ethicist or a counseling psychologist who was trained in this process. During each session, one of the researchers took notes and prepared a report for each MCA which were analyzed using qualitative content analysis. Participants and Research Context A total of 24 participants took part in 15 sessions, individually or in groups; 14 were nurses and nurse leaders, 2 were physicians, and 8 were other health professionals. Ethical Considerations This study was approved by the Providence Health Care/University of British Columbia Behavioural Research Ethics Board. Each participant provided written informed consent. Results The main causes of moral distress related to goals of care, communication, teamwork, respect for patient’s preferences, and the managerial system. Suggested solutions included communication strategies and educational activities for health care providers, patients, family members, and others about teamwork, advance directives, and end-of-life care. Participants acknowledged that using the MCA process helped them to reflect on their own thoughts and use their moral agency to turn a distressing situation into a learning and improvement opportunity. Conclusions Using the MCA tool helped participants to characterize their moral distress in a systematic way, and to arrive at new potential solutions. (shrink)

Background Since 2010 the People’s Republic of China has been engaged in an effort to reform its system of organ transplantation by developing a voluntary organ donation and allocation infrastructure. This has required a shift in the procurement of organs sourced from China’s prison and security apparatus to hospital-based voluntary donors declared dead by neurological and/or circulatory criteria. Chinese officials announced that from January 1, 2015, hospital-based donors would be the sole source of organs. This paper examines the (...) availability, transparency, integrity, and consistency of China’s official transplant data. Methods Forensic statistical methods were used to examine key deceased organ donation datasets from 2010 to 2018. Two central-level datasets — published by the China Organ Transplant Response System and the Red Cross Society of China — are tested for evidence of manipulation, including conformance to simple mathematical formulae, arbitrary internal ratios, the presence of anomalous data artefacts, and cross-consistency. Provincial-level data in five regions are tested for coherence, consistency, and plausibility, and individual hospital data in those provinces are examined for consistency with provincial-level data. Results COTRS data conforms almost precisely to a mathematical formula while Central Red Cross data mirrors it, albeit imperfectly. The analysis of both datasets suggests human-directed data manufacture and manipulation. Contradictory, implausible, or anomalous data artefacts were found in five provincial datasets, suggesting that these data may have been manipulated to enforce conformity with central quotas. A number of the distinctive features of China’s current organ procurement and allocation system are discussed, including apparent misclassification of nonvoluntary donors as voluntary. Conclusion A variety of evidence points to what the authors believe can only be plausibly explained by systematic falsification and manipulation of official organ transplant datasets in China. Some apparently nonvoluntary donors also appear to be misclassified as voluntary. This takes place alongside genuine voluntary organ transplant activity, which is often incentivized by large cash payments. These findings are relevant for international interactions with China’s organ transplantation system. (shrink)

This article focuses on the ethical aspects of medically-induced sedation and pain relief in intensive care medicine. The study results reported are part of a larger investigation of patients’ experiences of being sedated and receiving pain relief, and also families’ experiences of having a close relative under controlled sedation in an intensive care unit. The study is based on qualitative in-depth interviews with nine nurses and six doctors working in intensive care and surgical units (...) in a major Norwegian hospital. The textual data are interpreted according to Kvale’s method for analyzing qualitative data. There are ethical problems regarding how to achieve an acceptable balance between a patient’s subjective well-being and the medical need for reduced sedation. The authors discuss whether some medical reasons for reduced sedation are ethically justifiable, given the actual medical knowledge available. The study also addresses the ethical consequences of reducing medically-induced sedation and the demands it puts on interdisciplinary co-operation and communication, as well as the importance of improving the quality of medical and nursing care. (shrink)

There are not enough solid organs available to meet the needs of patients with organ failure. Thousands of patients every year die on the waiting lists for transplantation. Yet there is one currently available, underutilized, potential source of organs. Many patients die in intensive care following withdrawal of life-sustaining treatment whose organs could be used to save the lives of others. At present the majority of these organs go to waste.In this paper we consider and evaluate a (...) range of ways to improve the number and quality of organs available from this group of patients. Changes to consent arrangements (for example conscription of organs after death) or changes to organ donation practice could dramatically increase the numbers of organs available, though they would conflict with currently accepted norms governing transplantation.We argue that one alternative, Organ Donation Euthanasia, would be a rational improvement over current practice regarding withdrawal of life support. It would give individuals the greatest chance of being able to help others with their organs after death. It would increase patient autonomy. It would reduce the chance of suffering during the dying process. We argue that patients should be given the choice of whether and how they would like to donate their organs in the event of withdrawal of life support in intensive care.Continuing current transplantation practice comes at the cost of death and prolonged organ failure. We should seriously consider all of the alternatives. (shrink)

Background:Ethical conflict and subsequent nurse moral distress and burnout are common in the intensive care unit (ICU). There is a gap in our understanding of nurses’ perceptions of how organizational resources support them in addressing ethical conflict in the intensive care unit.Research question/objectives/methods:The aim of this qualitative, descriptive study was to explore how nurses experience ethical conflict and use organizational resources to support them as they address ethical conflict in their practice.Participants and research context:Responses to two (...) open-ended questions were collected from critical care nurses working in five intensive care units at a large, academic medical center in the Midwestern region of the United States.Ethical considerations:This study was approved by the Institutional Review Board at the organization where the study took place.Findings:Three main interwoven themes emerged: nurses perceive (1) intensive care unit culture, practices, and organizational priorities contribute to patient suffering; (2) nurses are marginalized during ethical conflict in the intensive care unit; and (3) organizational resources have the potential to reduce nurse moral distress. Nurses identified ethics education, interprofessional dialogue, and greater involvement of nurses as important strategies to improve the management of ethical conflict.Discussion:Ethical conflict related to healthcare system challenges is intrinsic in the daily practice of critical care nurses. Nurses want to be engaged in discussions about their perspectives on ethical conflict and play an active role in addressing ethical conflict in their practice. Organizational resources that support nurses are vital to the resolution of ethical conflict.Conclusion:These findings can inform the development of interventions that aim to proactively and comprehensively address ethical conflict in the intensive care unit to reduce nurse moral distress and improve the delivery of patient and family care. (shrink)

Organ transplant shortages are ubiquitous in healthcare systems around the world. In response, several commentators have argued for the adoption of an opt-out policy for organ transplantation, whereby individuals would by default be registered as organ donors unless they informed authorities of their desire to opt-out. This may potentially lead to an increase in donation rates. An opt-out system, however, presumes consent even when it is evident that a significant minority are resistant to organ donation. In (...) this article, we defend a mandated choice framework for consent to deceased organ donation. A mandated choice framework, coupled with good public education, would likely increase donation rates. More importantly, however, a mandated choice framework would respect the autonomous preferences of people who do not wish to donate. We focus in particular on the Australian healthcare context, and consider how a mandated choice system could function as an ethical means to increase the organ donation rate in Australia. We make the novel proposal that all individuals who vote at an Australian federal election be required to state their organ donation preferences when voting. (shrink)

A recent joint study by the Council of Europe and the United Nations focused on the criminality surrounding organ donations. Published in October 2009, it points out the various violations of the international prohibition on the trafficking of organs. This paper will first analyze this study and then contextualize it in the current discourse about organ donation in the Philippines. Finally, the issue of organ donation will be put in the wider discourse of justice in organ (...) transplantation.Organ donation and trafficking are much debated issues in medical ethics. This paper will discuss this problematic in three specific dimensions. After an explanation of the general lines of the debate on organ transplantation , it will analyze the recently published joint report of the Council of Europe and the United Nation on the trafficking of organs . The discussion afterwards will be situated in the concrete cultural, ethical and legal framework of the Philippines as a test case for the validity and applicability of the reports recommendation . Lastly, it will conclude with some ethical considerations on the horizon of an elaborate concept of justice. (shrink)

With the gap between the number of transplantable organs and the number of people needing transplants widening, many have argued for moving from an opt-in to an opt-out system of deceased organ donation. In the first system, individuals must register their willingness to become donors after they die. In the second system, it is assumed that individuals wish to become donors unless they have registered an objection to donation. Opting out has also been described as presumed consent. Spain (...) has had the most successful presumed consent policy, resulting in a substantial increase in the donation rate. 1 Despite support for an opt-out system from the British Medical Association and other groups since 1999, the report of a task force delivered in November 2008 recommended that the current opt-in system in the UK be retained. 2 The USA has also retained an opt-in system.3 Two prominent American bioethicists, Tom Beauchamp and James Childress, claim that an opt-out policy “would not likely be adopted in the United States, and if it were adopted, it probably would not increase the number of organs for transplantation because so many citizens would opt out.”4Offering financial incentives such as paying funeral expenses for a deceased donor’s family is one way of increasing the number of organs. A regulated market in organs is another.5 In the UK at least, there is broader support for presumed consent. Among the alternatives to opting in, this system has the best prospect of eventually being adopted. Presumed consent would not obviate but retain the basic idea of consent, because individuals would still have the right to opt out and choose not to donate. 6One argument for presumed consent is that it would reduce the incidence of free riding. For a free rider, it is not rational …. (shrink)

A man of twenty‐two is admitted to an intensive care unit (ICU)after intentionally overdosing on Tylenol. The nurse asks the intensivist on call if someone from the local organ procurement organization should be called in to speak to the family, given a worsening clinical picture and the likelihood that the patient will progress to brain death. The patient's condition is such that multiple organs, including his heart and lungs, could be donated. The intensivist instructs the nurse not (...) to call, as he wishes to have an end‐of‐life discussion with the parents. He believes that the parents should know that death is imminent and that further interventions will not save their son. He argues that introducing the OPO at this point will cause the family more distress. He wants the parents to be able to give their son a peaceful death without additional stressors. What are the broader implications of not calling the OPO at this juncture? Does the nurse involved have an ethical obligation to override the intensivist's instructions by calling the OPO? Should the fact that multiple healthy organs could be harvested from this patient's body have any bearing on the decision to call the OPO? (shrink)

Background Moral distress has negative effects on physical and mental health. However, there is little information about nurses’ coping strategies reducing moral distress. Aim The purpose of this study was to investigate the coping strategies of intensive care unit nurses reducing moral distress in Iran. Study design This is a qualitative study with a content analysis approach. Participants and research context The research sample consisted of nurses working in intensive care units of teaching hospitals affiliated to (...) Tehran University of Medical Sciences. Samples were selected among eligible nurses by purposive sampling. Data were obtained through 17 in-depth, individual, and semi-structured interviews with 17 nurses. Graneheim and Lundman’s (2004) 6-step content analysis method was used to analyze the data. Data management was also performed by MAXQDA software version 20. The COREQ checklist was used to report the study. Ethical considerations This project was approved by the Ethics Committee of Tehran University of Medical Sciences. All ethical guidelines in research were followed. Finding The data analysis resulted in the formation of two main categories of desirable coping strategies (with two subcategories of compensation and rejuvenation) and less desirable coping strategies (with three subclasses of indifference over time, escape and concealment). Discussion The intensive care unit nurses in dealing with ethical problems first try to solve the problem through discussion, but when they fail to resolve it peacefully, they resort to several coping strategies. Factors, such as increasing experience, lack of support from hospital managers and officials, poor communication between colleagues, the need to maintain hierarchy, fear of reprimand, and a sense of powerlessness, changed the nurses’ preferred strategies. It is important for managers to provide a blame/punishment-free atmosphere for expression of ethical experiences; a supportive atmosphere in which staff can engage in ethical discussions without fear of punishment. They should also provide opportunities for rest, rejuvenation, and adequate training for their employees. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec professionals’ (...) perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

Background:Maintaining patient’s dignity in intensive care units is difficult because of the unique conditions of both critically-ill patients and intensive care units.Objectives:The aim of this study was to uncover the cultural factors that impeded maintaining patients’ dignity in the cardiac surgery intensive care unit.Research Design:The study was conducted using a critical ethnographic method proposed by Carspecken.Participants and research context:Participants included all physicians, nurses and staffs working in the study setting. Data collection methods included participant (...) observations, formal and informal interviews, and documents assessment. In total, 200 hours of observation and 30 interviews were performed. Data were analyzed to uncover tacit cultural knowledge and to help healthcare providers to reconstruct the culture of their workplace.Ethical Consideration:Ethical approval for the study from Ethics committee of Isfahan University of Medical Sciences was obtained.Findings:The findings of the study fell into the following main themes: “Presence: the guarantee for giving enough attention to patients’ self-esteem”, “Instrumental and objectified attitudes”, “Adherence to the human equality principle: value-action gap”, “Paternalistic conduct”, “Improper language”, and “Non-interactive communication”. The final assertion was “Reductionism as a major barrier to the maintaining of patient’s dignity”.Discussion:The prevailing atmosphere in subculture of the CSICU was reductionism and paternalism. This key finding is part of the biomedical discourse. As a matter of fact, it is in contrast with dignified care because the latter necessitate holistic attitudes and approaches.Conclusion:Changing an ICU culture is not easy; but through increasing awareness and critical self-reflections, the nurses, physicians and other healthcare providers, may be able to reaffirm dignified care and cure in their therapeutic relationships. (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)

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses’ concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in (...) the caring situation, the interpretive phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing—here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children’s needs unmet; parent-oriented nursing care—here, the nursing care emphasizes the parents’ needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation—here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit. (shrink)

Most donated organs in the United States come from brain dead donors, while a small percentage come from patients who die in “controlled,” or expected, circumstances, typically after the family or surrogate makes a decision to withdraw life support. The number of organs available for transplant could be substantially if donations were permitted in “uncontrolled” circumstances–that is, from people who die unexpectedly, often outside the hospital. According to projections from the Institute of Medicine, establishing programs permitting “uncontrolled donation after circulatory (...) determination of death,” or uDCDD, throughout the United States has the potential to provide 22,000 more donation opportunities annually. In contrast, U.S. controlled donation after circulatory determination of death, or cDCDD, cases have increased progressively over the past decade from 87 to 848 donors, but currently account for only 10.6 percent of all deceased donors. Following the IOM recommendations, several projects exploring the feasibility of uDCDD were funded by the federal government, including a grant from the Health Resources and Services Administration that supported a pilot project in New York City in which the authors of this article participated.A key feature of our protocol, and indeed of many uDCDD protocols, is the initiation of preservation methods such as chest compressions and extracorporeal membrane oxygenation shortly after death in order to perfuse and preserve the donor's organs. Critics of uDCDD argue that the means of determining death deviates from generally ascribed principles. They assert that reinstituting circulation in order to preserve organs has the effect of “undoing” the prior determination of death. The result is that cDCDD is widely accepted and practiced routinely even though it only marginally increases the number of organs available for transplantation, and uDCDD is widely considered unacceptable despite being ethically embraced and proven to significantly increase organ donation opportunities in other countries. This article explores the evolution of this counterintuitive state of affairs and calls for a policy that, in line with the IOM report, allows for both cDCDD and uDCDD protocols. (shrink)

Relatives’ presence in connection with cardiopulmonary resuscitation and sudden death at the intensive care unit Within Norwegian intensive care units it is common to focus on the needs of the next of kin of patients undergoing end‐of‐life care. Offering emotional and practical support to relatives is regarded as assisting them in the initial stages of their grief process. It has also become usual to encourage relatives to be present at the time of death of (...) close relatives. How can dignified end‐of‐life care coexist with the sometimes turbulent and dramatic character of intensive care in the highly technological environment of intensive care units? This paper describes a case study based on an incident that took place at the intensive care unit (ICU) of Trondheim University Hospital, Norway, in which the relatives of a newly deceased patient voiced unusually strong dissatisfaction with the way they were excluded in connection with cardiopulmonary resuscitation (CPR). The next of kin's criticism highlights an important paradox as well as a degree of inconsistency in lifesaving and end‐of‐life care at the ICU. I argue that an investigation of the multiple identities within medical practice can illuminate the potential for clashes between lifesaving and end‐of‐life care, as described and analysed in this paper. (shrink)

With the aging of the general population and the ability of intensivists to support patients using ventilator support, tracheostomy has become a vital tool in the medical management of critically ill patients. While much of the medical literature on tracheostomy has focused on the optimal timing of and indications for performing this procedure, little is written on the ethical tensions that can revolve around decisions by patients, surrogates, and physicians on its use. This article will elucidate the ethical (...) dilemmas that can arise surrounding the use of tracheostomy in critically ill patients and how ethics consultants and committees can approach these cases to allow resolution. (shrink)

When making end-of-life decisions in intensive care units (ICUs), different staff groups have different roles in the decision-making process and may not always assess the situation in the same way. The aim of this study was to examine the challenges Danish nurses, intensivists, and primary physicians experience with end-of-life decisions in ICUs and how these challenges affect the decision-making process. Interviews with nurses, intensivists, and primary physicians were conducted, and data is discussed from an ethical perspective. All three (...) groups found that the main challenges were associated with interdisciplinary collaboration and future perspectives for the patient. Most of these challenges were connected with ethical issues. The challenges included different assessments of treatment potential, changes and postponements of withholding and withdrawing therapy orders, how and when to identify patients’ wishes, and suffering caused by the treatment. To improve end-of-life decision-making in the ICU, these challenges need to be addressed by interdisciplinary teams. (shrink)

The paediatric intensive care unit is a high-stress environment for parents, families and health care professionals alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical (...) class='Hi'>care and compromise patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit. (shrink)

Background: The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses’ involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation (...) generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. Objective: To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Research design: Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Participants and research context: Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse’s experience in exercising autonomy relating to end-of-life decision-making. Ethical considerations: Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. Findings: The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Conclusion: Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude that inserts them into the decision-making process. (shrink)

Background:The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought.Objectives:This study explored nurses’ care practices at the end (...) of life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity.Research Design and context:Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated.Ethical Considerations:Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals.Findings:A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting.Discussion:Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members.Conclusion:Despite the avoidance of death talk and nurses’ lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values. (shrink)

Withdrawing Artificial Nutrition and Hydration in the neonatal intensive care units has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders’ experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals perspectives, after they experienced WAHN for a newborn. The study included 25 (...) cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby’s appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant’s death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices—that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby’s death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby’s comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby’s death. (shrink)

Background Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. Methods Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should (...) be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). Results After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. Conclusion Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia. (shrink)

Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care (...) units. Clinicians who were members of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

Background: Theoretically, the principle of justice is strong in healthcare priorities both nationally and internationally. Research, however, has indicated that questions can be raised as to how this principle is dealt with in clinical intensive care. Objective: The objective of this article is to examine how significant others may affect the principle of justice in the medical treatment and nursing care of intensive care patients. Method: Field observations and in-depth interviews with physicians and nurses (...) in intensive care units (ICU). Emphasis was placed on eliciting the underlying rationale for prioritisations in clinical intensive care with particular focus on clinicians’ considerations when limiting ICU treatment. Results: Significant others could induce an unintentional discrimination of ICU patients. Family members who were demanding received more time and attention for both the patient and themselves. Patients’ and families’ status and position and/or an interesting medical diagnosis seemed to govern the clinicians’ priorities of patients and families—consciously as well as unconsciously. The clinicians emphasised that patient information given through families was important. However, patients’ preferences and values conveyed to clinicians through their families were not always taken seriously. This even applied in cases with very serious prognoses and an explicit patient wish to forego life-prolonging treatment. Conclusion: The principle of justice was violated when qualified attention was given to significant others, and through this also to patients. Attention given to significant others was influenced by the healthcare workers’ professional and personal values, attitudes and interests. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and (...) medicine, truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (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: ICU patients’ family members are in a new, uncertain, and vulnerable situation due to the patient’s critical illness and complete dependence on the ICU nurses and physicians. Family members’ feeling of being cared for is closely linked to clinicians’ attitudes and behavior. Aim: To explore ICU nurses’ and physicians’ bedside interaction with critically ill ICU patients´ families and discuss this in light of the ethics of care. Research design: A qualitative study using participant observation, focus groups, and (...) thematic narrative analysis. Participants and research context: Data were gathered from July 2017 to August 2019, in four ICUs in Norway through 270 h of fieldwork and seven focus groups with ICU nurses and physicians. Ethical considerations: The Regional Committee for Medical and Health Research Ethics and the Norwegian Centre for Research Data approved the study. Findings: Quality of ICU family care depends on nurses’ and physicians’ attitudes, behavior, and personality traits. Three main themes were identified: being attentive, an active approach, and degree of tolerance. Discussion: The findings are discussed in light of the ethics of care and empirical research from the intensive care environment. Conclusions: This study shows that attentive, active, and tolerant clinicians represent a culture of ethical care that gives families greater freedom of action and active participation in patient care. Clinicians must not bear sole responsibility for this culture; it must have a firm basis in the hospital and ICU and be established through training, interprofessional reflection, and support of clinicians. (shrink)

Professionals within the mental health services face many ethical dilemmas and challenging situations regarding the use of coercion. The purpose of this study was to evaluate the significance of participating in systematic ethics reflection groups focusing on ethical challenges related to coercion. In 2013 and 2014, 20 focus group interviews with 127 participants were conducted. The interviews were tape recorded and transcribed verbatim. The analysis is inspired by the concept of ‘bricolage’ which means our approach was inductive. Most (...) participants report positive experiences with participating in ethics reflection groups: A systematic and well-structured approach to discuss ethical challenges, increased consciousness of formal and informal coercion, a possibility to challenge problematic concepts, attitudes and practices, improved professional competence and confidence, greater trust within the team, more constructive disagreement and room for internal critique, less judgmental reactions and more reasoned approaches, and identification of potential for improvement and alternative courses of action. On several wards, the participation of psychiatrists and psychologists in the reflection groups was missing. The impact of the perceived lack of safety in reflection groups should not be underestimated. Sometimes the method for ethics reflection was utilised in a rigid way. Direct involvement of patients and family was missing. This focus group study indicates the potential of ethics reflection groups to create a moral space in the workplace that promotes critical, reflective and collaborative moral deliberations. Future research, with other designs and methodologies, is needed to further investigate the impact of ethics reflection groups on improving health care practices. (shrink)

This study is an analysis of surrogate-focused ethics consultations in the Intensive Care Unit (ICU) and the general wards (Ward) of a large community hospital in Northern California. We identified the major themes of surrogate-focused ethics consultations to better understand the root cause of surrogate conflicts, and identified the similarities and differences between surrogate-based conflicts in the two settings. Consults requested because the surrogate had desires that conflicted with the physicians medical opinion of ‘best interest’, or cases (...) involving surrogates not upholding a patient’s known values reflected the root cause of the majority of surrogate conflicts (72.7% ICU, 83.3% Ward). (shrink)

Objective To evaluate the modes of death and treatment offered in the last 24 h of life to patients dying in 10 Brazilian intensive care units (ICUs) over a period of 2 years. Design and setting Cross-sectional, multicentre, retrospective study based on medical chart review. The medical records of all patients that died in seven paediatric and three adult ICUs belonging to university and tertiary hospitals over a period of 2 years were included. Deaths in the (...) first 24 h of admission to the ICU and brain death were excluded. Intervention Two intensive care fellows of each ICU were trained in fulfilling a standard protocol (κ=0.9) to record demographic data and all medical management provided in the last 48 h of life. The Student t test, Mann–Whitney U test, χ2 test and RR were used for data comparison. Measurements and main results 1053 medical charts were included (59.4% adult patients). Life support limitation was more frequent in the adult group (86% vs 43.5%; p<0.001). A ‘do not resuscitate’ order was the most common life support limitation in both groups (75% and 66%), whereas withholding/withdrawing were more frequent in the paediatric group (33.9% vs 24.9%; p=0.02). The life support limitation was rarely reported in the medical chart in both groups (52.6% and 33.7%) with scarce family involvement in the decision making process (23.0% vs 8.7%; p<0.001). Conclusion Life support limitation decision making in Brazilian ICUs is predominantly centred on the medical perspective with scarce participation of the family, and consequently several non-coherent medical interventions are observed in patients with life support limitation. (shrink)