Should minors and young adults qualify as potential live kidney donors? The views of international transplant professionals.

Although live kidney donation (LD) has become an increasingly common procedure, European and US transplant centres disagree as to whether minors and young adults should qualify as donor candidates. Therefore, we aimed to better understand the attitudes and viewpoints of transplant professionals. We conducted fourteen in-depth interviews with a purposive sample of international transplant professionals from various professional backgrounds. Data analysis was guided by QUAGOL, a systematic approach based on the constant-comparative method. Professionals expressed a cautionary view, worrying about the uncertain long-term medical and psychosocial consequences of LD at a young age. They also worried that young individuals' decisions are more likely to be influenced by their psychosocial developmental stage or family pressure. As these concerns were more significant for minors as compared to young adults, minors were deemed ineligible for LD except for in highly exceptional circumstances. Professionals' attitudes were also influenced by the expected benefits for the recipient and the availability of therapeutic alternatives, as well as the strength of the donor-recipient relationship. More prospective research on the long-term medical and psychological outcomes in young adult donors is likely to shed more light on the acceptability of LD by adolescents and young adults.

Psychosocial impact of pediatric living-donor kidney and liver transplantation on recipients, donors, and the family: a systematic review.

Living-donor kidney and liver transplantation intend to improve pediatric recipients' psychosocial well-being, but psychosocial impact in recipients strongly depends upon the impact on the donor and the quality of family relations. We systematically reviewed quantitative and qualitative studies addressing the psychosocial impact of pediatric living-donor kidney and liver transplantation in recipients, donors, and the family. In accordance with the PRISMA guidelines, we systematically searched the databases Medline, Web of Knowledge, Cinahl, Embase, ERIC, and Google Scholar. We identified 23 studies that satisfied our inclusion criteria. Recipients had improved coping skills and satisfactory peer relationships, but also reported anxiety and depressive symptoms, worried about the future, and had a negative body image. Similarly, donors experienced increased self-esteem, empowerment, and community awareness, but also complained of postoperative pain and a lack of emotional support. With respect to family impact, transplantation generated a special bond between the donor and the recipient, characterized by gratitude and admiration, but also raised new expectations concerning the recipient's lifestyle. As psychological problems in recipients were sometimes induced by feelings of guilt and indebtedness toward the donor, we recommend more research on how gift exchange dynamics function within donor-recipient relationships, enrolling donors and recipients within the same study.

Written institutional ethics policies on euthanasia: an empirical-based organizational-ethical framework.

As euthanasia has become a widely debated issue in many Western countries, hospitals and nursing homes especially are increasingly being confronted with this ethically sensitive societal issue. The focus of this paper is how healthcare institutions can deal with euthanasia requests on an organizational level by means of a written institutional ethics policy. The general aim is to make a critical analysis whether these policies can be considered as organizational-ethical instruments that support healthcare institutions to take their institutional responsibility for dealing with euthanasia requests. By means of an interpretative analysis, we conducted a process of reinterpretation of results of former Belgian empirical studies on written institutional ethics policies on euthanasia in dialogue with the existing international literature. The study findings revealed that legal regulations, ethical and care-oriented aspects strongly affected the development, the content, and the impact of written institutional ethics policies on euthanasia. Hence, these three cornerstones-law, care and ethics-constituted the basis for the empirical-based organizational-ethical framework for written institutional ethics policies on euthanasia that is presented in this paper. However, having a euthanasia policy does not automatically lead to more legal transparency, or to a more professional and ethical care practice. The study findings suggest that the development and implementation of an ethics policy on euthanasia as an organizational-ethical instrument should be considered as a dynamic process. Administrators and ethics committees must take responsibility to actively create an ethical climate supporting care providers who have to deal with ethical dilemmas in their practice.

Could minors be living kidney donors? A systematic review of guidelines, position papers and reports.

The purpose of this study is to systematically review guidelines, position papers, and reports on living kidney donation by minors. We systematically searched the databases such as Medline, Embase, ISI Web of knowledge, Google scholar as well as the websites of various bioethics committees, transplant organizations and societies. Guidelines were included if they provided recommendations for or against living kidney donation by minors. Data were analyzed using qualitative content analysis. We included 39 documents in this study. Twenty seven of these endorse an absolute prohibition of living kidney donation by minors, because of concerns regarding the decision-making capacity of minors, the impartiality of parental authorization, the best interests of the minor, and the necessity of the donation. Twelve guidelines, however, would exceptionally allow living kidney donation by minors, provided that adequate safeguards are put in place, including an assessment of the minor's autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restriction to situations of last resort. A more adequate medical and psychosocial follow-up of living kidney donors may likely contribute to a more unified approach towards living kidney donation by minors.

Lung transplant outcome following donation after euthanasia.

BACKGROUND: Organ transplantation is hampered by shortage of suitable organs. In countries with a legal framework, organ donation following euthanasia is an option labeled "donation after cardio-circulatory death category V" (DCD-V). We describe our experience with lung transplantation (LTx) after euthanasia and evaluate post-transplant outcome using a matched comparison to DCD-III (withdrawal from life-sustaining therapy) and donation after brain death (DBD). METHODS: All bilateral LTx between 2007 and 2020 were retrospectively analyzed. Matching was performed for recipient age and gender, indication for LTx, mean pulmonary artery pressure, extracorporeal life support, and donor age, which resulted in 1:2 DCD-III and 1:3 DBD matching. Primary graft dysfunction (PGD), chronic lung allograft dysfunction (CLAD), and patient survival were analyzed. RESULTS: A total of 769 LTx were performed of which 22 from DCD-V donors (2.9%). Thirteen women and 9 men expressed their wish to become organ donor after euthanasia. Euthanasia request was granted for irremediable neuromuscular (N = 9) or psychiatric (N = 8) disorder or unbearable and unrecoverable pain (N = 5). PGD (grade 3, within 72 hours post-transplant) was 23.8% in the DCD-V cohort, which is comparable to DCD-III (27.9%; p = 1.00) and DBD (32.3%; p = .59). CLAD-free 3- and 5-year survival were 86.4% and 62.8%, respectively, and comparable to DCD-III (74.4% and 60.0%; p = .62) and DBD (72.6% and 55.5%; p = .32). Five-year patient survival was 90.9%, not significantly different from both DCD-III (86.0%; p = 1.00) and DBD (78.1%; p = .36). CONCLUSIONS: We observed that LTx with DCD-V allografts is feasible and safe, yielding no evidence for differences in short- and long-term outcome compared to matched cohorts of DCD-III and DBD.

Content analysis of euthanasia policies of nursing homes in Flanders (Belgium).

OBJECTIVES: To describe the form and content of ethics policies on euthanasia in Flemish nursing homes and to determine the possible influence of religious affiliation on policy content. METHODS: Content analysis of euthanasia policy documents. RESULTS: Of the 737 nursing homes we contacted, 612 (83%) completed and returned the questionnaire. Of 92 (15%) nursing homes that reported to have a euthanasia policy, 85 (92%) provided a copy of their policy. Nursing homes applied the euthanasia law with additional palliative procedures and interdisciplinary deliberations. More Catholic nursing homes compared to non-Catholic nursing homes did not permit euthanasia. Policies described several phases of the euthanasia care process as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and procedures for handling advance directives. CONCLUSION: Our study revealed that euthanasia requests from patients are seriously considered in euthanasia policies of nursing homes, with great attention for palliative care and interdisciplinary cooperation.

Ethics policies on euthanasia in nursing homes: a survey in Flanders, Belgium.

In many European countries there is a public debate about the acceptability and regulation of euthanasia. In 2002, Belgium became the second country after the Netherlands to enact a law on euthanasia. Although euthanasia rarely occurs, the complexity of the clinical-ethical decision making surrounding euthanasia requests and the need for adequate support reported by caregivers, means that healthcare institutions increasingly need to consider how to responsibly handle euthanasia requests. The development of written ethics policies on euthanasia may be important to guarantee and maintain the quality of care for patients requesting euthanasia. The aim of this study was to determine the prevalence, development, position, and communication of written ethics policies on euthanasia in Flemish nursing homes. Data were obtained through a cross-sectional mail survey of general directors of all Catholic nursing homes in Flanders, Belgium. Of the 737 nursing homes invited to participate, 612 (83%) completed the questionnaire. Of these, only 15% had a written ethics policy on euthanasia. Presence of an ethics committee and membership of an umbrella organization were independent predictors of whether a nursing home had such a written ethics policy. The Act on Euthanasia and euthanasia guidelines advanced by professional organizations were the most frequent reasons (76% and 56%, respectively) and reference sources (92% and 64%, respectively) for developing ethics policies on euthanasia. Development of ethics policies occurred within a multidisciplinary context. In general, Flemish nursing homes applied the Act on Euthanasia restrictively by introducing palliative procedures in addition to legal due care criteria. The policy was communicated to the consulting general practitioner and nurses in 74% and 89% of nursing homes, respectively. Although the overall prevalence of ethics policies on euthanasia was low in Flemish nursing homes, institution administrators displayed growing awareness of bearing responsibility for stimulating dialogue and reflection about how to deal with euthanasia requests within their institution.

How do hospitals deal with euthanasia requests in Flanders (Belgium)? A content analysis of policy documents.

OBJECTIVE: To describe the form and content of ethics policies on euthanasia in Flemish hospitals and the possible influence of religious affiliation on policy content. METHODS: Content analysis of policy documents. RESULTS: Forty-two documents were analyzed. All policies contained procedures; 57% included the position paper on which the hospital's stance on euthanasia was based. All policies described their hospital's stance on euthanasia in competent terminally ill patients (n=42); 10 and 4 policies, respectively, did not describe their stance in incompetent terminally and non-terminally ill patients. Catholic hospitals restrictively applied the euthanasia law with palliative procedures and interdisciplinary deliberations. The policies described several phases of the euthanasia care process--confrontation with euthanasia request (93%), decision-making process (95%), care process in cases of no-euthanasia decision (38%), preparation and performance of euthanasia (79%), and aftercare (81%)--as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and practical examples of professional attitudes and communication skills. CONCLUSION: Euthanasia policies go beyond summarizing the euthanasia law by addressing the importance of the euthanasia care process, in which palliative care and interdisciplinary cooperation are important factors. PRACTICE IMPLICATIONS: Euthanasia policies provide tangible guidance for physicians and nurses on handling euthanasia requests.

Donation after uncontrolled cardiac death (uDCD): a review of the debate from a European perspective.

Presumed consent alone will not solve the organ shortage, but it will create an ethical and legal context that supports organ donation, respects individuals who object to organ donation, relieves families from the burden of decision making, and can save lives.

Ethics policies on euthanasia in hospitals--A survey in Flanders (Belgium).

OBJECTIVE: To determine the prevalence, development, stance, and communication of written institutional ethics policies on euthanasia in Flemish hospitals. METHODS: Cross-sectional mail survey of general directors of all hospitals (n=81) in Flanders, Belgium. RESULTS: Of the 81 hospitals invited to participate, 71 (88%) completed the questionnaire. Of these, 45 (63%) had a written ethics policy on euthanasia. The Belgian Act on Euthanasia and centrally developed guidelines of professional organisations were the most frequently mentioned reasons for and sources used in developing ethics policies on euthanasia in hospitals. Up to one-third of hospitals reported that they developed the policy upon request from physicians or nurses, or after being confronted with a euthanasia request. Development and approval of institutional ethics policies occurred within a multidisciplinary context involving clinicians, ethicists, and hospital administrators. The majority of hospitals restrictively applied the euthanasia law by introducing palliative procedures in addition to legal due care criteria. Private Catholic hospitals, in particular, were more likely to be restrictive: euthanasia is not permitted or is permitted only in exceptional cases (in accordance with legal due care criteria and additional palliative care procedures). The majority of hospitals took the initiative to communicate the policy to hospital physicians and nurses. CONCLUSIONS: Since the enactment of the Belgian Act on Euthanasia in 2002, the debate on how to deal with euthanasia requests has intensified in Flemish hospitals. The high prevalence of written institutional ethics policies on euthanasia and other medical end-of-life decisions is one possible outcome of this debate.

Institutional ethics policies on medical end-of-life decisions: a literature review.

OBJECTIVES: The responsibility of healthcare administrators for handling ethically sensitive medical practices, such as medical end-of-life decisions (MELDs), within an institutional setting has been receiving more attention. The overall aim of this paper is to thoroughly examine the prevalence, content, communication, and implementation of written institutional ethics policies on MELDs by means of a literature review. METHODS: Major databases (Pubmed, Cinahl, PsycINFO, Cochrane Library, FRANCIS, and Philosopher's Index) and reference lists were systematically searched for all relevant papers. Inclusion criteria for relevance were that the study was empirically based and that it focused on the prevalence, content, communication, or implementation of written institutional ethics policies concerning MELDs. RESULTS: Our search yielded 19 studies of American, Canadian, Dutch and Belgian origin. The majority of studies dealt with do-not-resuscitate (DNR) policies (prevalence: 10-89%). Only Dutch and Belgian studies dealt with policies on pain and symptom control (prevalence: 15-19%) and policies on euthanasia (prevalence: 30-79%). Procedural and technical aspects were a prime focus, while the defining of the specific roles of involved parties was unclear. Little attention was given to exploring ethical principles that question the ethical function of policies. In ethics policies on euthanasia, significant consideration was given to procedures that dealt with conscientious objections of physicians and nurses. Empirical studies about the implementation of ethics policies are scarce. CONCLUSIONS: With regard to providing support for physicians and nurses, DNR and euthanasia policies expressed support by primarily providing technical and procedural guidelines. Further research is needed whether and in which way written institutional ethics policies on MELDs could contribute to better end-of-life care.

Transition towards end of life in palliative care: an exploration of its meaning for advanced cancer patients in Europe.

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.

Multilingual translation issues in qualitative research: reflections on a metaphorical process.

Focus on the translation and validation of measurement instruments has left a gap in the discussion on how to construct multilingual qualitative tools, such as interviews. Traditional methods of forward and backward translation have been criticized for weak conceptual equivalence, a crucial issue when multiple language interview methods are used. Through a creative arts metaphor of weaving, the authors describe an alternative process of multicentric translation used in the development of an interview guide designed to explore the impact of transition on palliative care patients in six European countries. Four identified core constructs illuminate this multicentric process: Cohesion, Congruence, Clarity, and Courtesy. Mutual reciprocity between researcher and translator offers greater possibility for construction of nuance and meaning, particularly where cultural parameters influence the collection and meaning of sensitive data from vulnerable populations. The translator therefore becomes a collaborator in the research process, which strengthens the rigor of language-based inquiry.

Carrier testing in minors: a systematic review of guidelines and position papers.

The objective of this article is to review all published normative ethical and clinical guidelines concerning the genetic carrier testing of minors. The databases Medline, Philosopher's Index, Biological Abstracts, Web of Science, and Google Scholar were searched using keywords relating to the carrier testing of children. We also searched the websites of the national bioethics committees indexed on the websites of WHO and the German Reference Center for Ethics in the Life Sciences, the Human Genetics Societies of various nations indexed on the website of the International Federation of Human Genetics Societies and related links, and the national medical associations indexed on the website of the World Medical Association. We retrieved 14 guidelines emanating from 24 different groups. All guidelines advanced the following preferences: (1) carrier testing should not be performed in children, and (2) testing should be deferred until the child can give proper informed consent to be tested. The guidelines varied in three areas: (a) the role of genetic services in ensuring that children are informed about their carrier status and associated risks when they are older; (b) exceptions to the general rule of withholding or deferring carrier testing; and (c) the communication of incidentally discovered carrier status. In the absence of compelling reasons, carrier testing of a child can reasonably be deferred until the child has the intellectual capacity needed to discern if and when to be tested.

Prevalence and content of written ethics policies on euthanasia in Catholic healthcare institutions in Belgium (Flanders).

BACKGROUND: Euthanasia is performed worldwide, regardless of the existence of laws governing it. Belgium became the second country in the world to enact a law on euthanasia in 2002. Healthcare institutions bear responsibility for guaranteeing the quality of care for patients at the end of life, and for ensuring support for caregivers involved. Therefore, institutional ethics policies on end-of-life decision-making, especially on euthanasia, may be useful. METHODS: A cross-sectional mail survey of general directors of Catholic hospitals and nursing homes in Belgium was used to describe the prevalence and content of written ethics policies for competent terminally ill, incompetent terminally ill, and non-terminally ill patients. RESULTS: Of the 298 targeted institutions, 81% of hospitals and 62% of nursing homes returned complete questionnaires. Of these, 79% of hospitals and 30% of nursing homes had a written ethics policy on euthanasia. Of hospitals 83% and of nursing homes 85% permitted euthanasia for competent terminally ill patients only in exceptional cases in accordance with legal due care criteria and provisions outlined by the palliative filter procedure. Euthanasia for incompetent terminally ill patients was prohibited by 27% of the hospitals and by 60% of the nursing homes. For non-terminally ill patients, these figures were 43 and 64%, respectively. CONCLUSIONS: Catholic healthcare institutions in Belgium (Flanders) made great efforts to develop written ethics policies on euthanasia. Only a small group of institutions completely prohibited euthanasia. Most of the institutions considered euthanasia to be an option if all possible alternatives (e.g., palliative filter procedure, which contains more rigorous criteria than those in the Belgian Euthanasia Act), have been thoroughly investigated.

How international is bioethics? A quantitative retrospective study.

BACKGROUND: Studying the contribution of individual countries to leading journals in a specific discipline can highlight which countries have the most impact on that discipline and whether a geographic bias exists. This article aims to examine the international distribution of publications in the field of bioethics. METHODS: Retrospective quantitative study of nine peer reviewed journals in the field of bioethics and medical ethics (Bioethics, Cambridge Quarterly of Healthcare Ethics, Hastings Center Report, Journal of Clinical Ethics, Journal of Medical Ethics, Kennedy Institute of Ethics Journal, Nursing Ethics, Christian Bioethics, and Theoretical Medicine and Bioethics). RESULTS: In total, 4,029 articles published between 1990 and 2003 were retrieved from the nine bioethical journals under study. The United States (59.3%, n = 2390), the United Kingdom (13.5%, n = 544), Canada (4%, n = 160) and Australia (3.8%, n = 154) had the highest number of publications in terms of absolute number of publications. When normalized to population size, smaller affluent countries, such as New Zealand, Finland and Sweden were more productive than the United States. The number of studies originating from the USA was decreasing in the period between 1990 and 2003. CONCLUSION: While a lot of peer reviewed journals in the field of bioethics profile themselves as international journals, they certainly do not live up to what one would expect from an "international" journal. The fact that English speaking countries, and to a larger extent American authors, dominate the international journals in the field of bioethics is a clear geographic bias towards the bioethical discussions that are going on in these journals.

Evidence-based medicine and its role in ethical decision-making.

The recent emergence of evidence-based medicine (EBM) presents medical ethics with the challenge of analyzing what is the current best medical evidence in ethical decision making. This article concludes that the use of the best available, most recently published research findings is a primary moral obligation. However, this does not automatically mean that the use of these research findings will lead to better ethical decision making. Research data can be distorted by methodological failings in the design and reporting of experiments, or by technical and commercial bias. Moreover, the introduction of norms, values, principles and ethical theories can lead to other choices than those proposed by empirical research findings. Ethical decision making must be informed and legitimated by the best available medical research. Nevertheless, ethical decision making is still primarily a choice based on values and norms.

Pluralism and ethical dialogue in Christian healthcare institutions: the view of Caritas Catholica Flanders.

In this article, the place and the nature of an ethical dialogue that develops within Christian healthcare institutions in Flanders, Belgium is examined. More specifically, the question is asked how Christian healthcare institutions should position themselves ethically in a context of a pluralistic society. The profile developed by Caritas Catholica Flanders must take seriously not only the external pluralistic context of our society and the internal pluralistic worldviews by personnel/employees and patients, but also the inherent inspiration of a Christian healthcare institution. This article concludes with ten general orientations that could shape the ethical dialogue from a Christian inspiration in a pluralistic context.