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.

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.

Level of consciousness in dying patients. The role of palliative sedation: a longitudinal prospective study.

BACKGROUND: Patients suffering from a terminal illness often are confronted with severe symptoms during the last phase of their lives. Palliative sedation, although one of the options of last resort, remains a much debated and controversial issue and is often referred to as a form of slow euthanasia or euthanasia in disguise. METHODS: A prospective longitudinal and descriptive design was used. Each patient admitted in one of the 8 participating units was included if they met the inclusion criteria and gave written informed consent. RESULTS: 266 patients were included. The incidence of palliative sedation was 7;5%. For the group of sedated patients results show that 90% entered the palliative care unit being fully conscious. Two patients were comatose upon arrival. 90% of the patients remained fully conscious up to the day palliative sedation was started. When looking at the effect of palliative sedation on the level of consciousness the analysis strongly suggest that the palliative sedation - as expected- has an impact on the GCS score. Irrespective of the dichotomization of the score the probability of having a lower GCS increases substantially once sedation is initiated. Additionally, results show that once palliative sedation is administered, the level of consciousness gradually goes down up until the day of death. CONCLUSION: Palliative sedation is nor slow euthanasia nor an ambivalent practice. It is an intentional medical treatment which is administered in a proportional way when refractory suffering occurs. It occurs in extraordinary situations and at the very end of the dying process.

Development and validation of a modified version of the Edmonton Symptom Assessment Scale in a Flemish palliative care population.

Palliative cancer patients are faced with multiple symptoms that threaten their quality of life. To manage these symptoms, a reliable and valid way of registration is crucial. In this study, the Edmonton Symptom Assessment Scale (ESAS) has been translated, modified, and tested on content, face, criterion, construct validity, and internal consistency for patients admitted to Flemish palliative care units. These aspects are tested in a descriptive, comparative, longitudinal study based on 3 convenience samples. The first consisted of 8 palliative care experts. The second sample checked the face validity and consisted of 4 patients, 5 family members, and 5 nurses. The last sample involved 23 patients admitted to 3 Flemish palliative care units. Heedful of the "new-wave" vision on validity, the translated and altered ESAS seemed a suitable instrument for the symptom assessment of patients with cancer admitted to a palliative care unit.

Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units.

CONTEXT: Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. OBJECTIVES: The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. METHODS: A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. RESULTS: Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. CONCLUSION: This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect.

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.

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.

Palliative sedation: a review of the research literature.

The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the criteria of Hawker et al. (2002). The search yielded 130 articles, 33.8% of which were peer-reviewed empirical research studies. Thirty-three research papers and one thesis were included in this systematic review. This review reveals that there still are many inconsistencies with regard to the prevalence, the effect of sedation, food and fluid intake, the possible life-shortening effect, and the decision-making process. Further research to clarify all of this should be based on multicenter, prospective, longitudinal, and international studies that use a uniform definition of palliative sedation, and valid and reliable instruments. Only through such research will it be possible to resolve some of the important ethical issues related to palliative sedation.

A relational ethical dialogue with research ethics committees.

The aim of this article is to take relational ethics concepts and apply them to the context of application to research ethics committees for approval to carry out research. The process of a multinational qualitative research application is described. The article suggests that a relational ethics approach can address two issues: how qualitative proposals are interpreted by research ethics committees and how this safeguards potentially vulnerable respondents. In relational terms, the governance of a research project may be enhanced by shared ownership and willingness to engage in mutual dialogue. This challenges both researchers and research ethics committees to reframe their understanding of roles and functions in the assessment of research protocols, particularly those of a qualitative nature and those that address end-of-life issues.

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.

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.

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.

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.

Towards a conceptual evaluation of transience in relation to palliative care.

AIM: This paper is a report of a concept evaluation of transience and its relevance to palliative care. BACKGROUND: A qualitative study into palliative care patients' experiences of transition revealed a gap between current definitions of transition and their expression of the palliative care experience. Transience appears to offer a better definition but remains conceptually weak, with limited definition in a healthcare context. METHODS: A qualitative conceptual evaluation of transience was undertaken using two case examples, interview data and the literature. Multiple sources were used to identify the literature (1966-2006), including a search on Cumulative Index to Nursing and Allied Health Literature Medline, and Ovid and Arts and Humanities Index using the keywords 'transience' and 'palliative care'. Thirty-one papers related to transience were retrieved. Analysis and synthesis formulated a theoretical definition of transience relative to palliative care. FINDINGS: Transience is a nascent concept. Preconditions and outcomes of transience appear contextually dependent, which may inhibit its conceptual development. Transience depicts a fragile emotional state related to sudden change and uncertainty at end-of-life, exhibited as a feeling of stasis. Defining attributes would seem to include fragility, suddenness, powerlessness, impermanence, time, space, uncertainty, separation and homelessness. CONCLUSIONS: Transience is potentially more meaningful for palliative care in understanding the impact of end-of-life experiences for patients than current conceptualizations of transition as a process towards resolution. As a nascent concept, it remains strongly encapsulated within a framework of transition and further conceptual development is needed to enhance its maturity and refinement.