Papers by Evert van Leeuwen
Dimensions of Critical Care Nursing
Niets uit deze uitgave mag worden vermenigvuldigd en/of openbaar worden gemaakt middels druk, fot... more Niets uit deze uitgave mag worden vermenigvuldigd en/of openbaar worden gemaakt middels druk, fotokopie, microfilm, geluidsband of op welke andere wijze dan ook, zonder voorafgaande schriftelijke toestemming van de copyrighthouder. Vormgeving en opmaak: Nies en Partners bno, Nijmegen Drukwerk: Thieme MediaCenter Nijmegen
Ajob Primary Research, Apr 1, 2013
ABSTRACT Background: In pediatrics, the “best interest” standard has become the prevailing standa... more ABSTRACT Background: In pediatrics, the “best interest” standard has become the prevailing standard in decision making even though it proves difficult to apply in practice. Differences in values can lead to different views by families and physicians of what is in the interest of a child. Our aim was to gain insight into the views of parents, children, and physicians in a pediatric oncology setting. Methods: We conducted a qualitative multicenter study, using in-depth semistructured interviews, with 21 children aged 8–18 years undergoing cancer treatment, 26 parents, and 15 pediatric oncologists. Results: At the onset of treatment, parents, children, and physicians had the same views on what is in the interest of the child: survival by following the treatment protocol. In the course of treatment, however, a transition takes place. For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a normal life, having control over certain aspects of treatment, and maintaining one's identity (e.g., through religion). These aspects sometimes collide with medical aspects, leading to different professional and familial views about what course of action is appropriate. Conclusions: In order to recognize personal views and avoid conflicts, physicians should explicitly discuss parent and family concerns and opinions in the course of treatment. We present a model of “communicative ethics” to make these issues a subject of discussion. The role of the family in determining what is in the best interest of the child should only be limited when it implies a substantial medical risk of (irreversible) harm to the child.
Pediatric Blood & Cancer, 2010
Background.Various regulations and guidelines stipulate the importance of involving adolescents i... more Background.Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. Methods. A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. Results. Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. Conclusions. Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.
Archives of Disease in Childhood, Nov 1, 2008
Objective Consent is an important issue in paediatric research ethics. In the case of adolescents... more Objective Consent is an important issue in paediatric research ethics. In the case of adolescents (children >12 years of age), Dutch law requires that physician-investigators ask true informed consent (instead of only assent) from both child and parents. Especially in the paediatric oncology research setting, this informed consent seems difficult to attain, as extensive literature confirms. The oncology setting has distinctive features, such as the integration of research and treatment in standard protocols, which limit the participation of adolescents in discussions concerning research. Our aim was to establish how physicians deal with this limited participation. Methods In-depth semi-structured interviews with 15 paediatric haemato-oncologists at two oncology institutions. Results Physicians deem poor informed consent from adolescents acceptable because of three arguments: (1) they consider most adolescents not capable of giving “adult” consent; (2) they have proxy consent from parents; (3) investigator integrity: they know the ins and outs of the study (eg, risks, burdens) and think it is safe to include a child. Conclusion Discussion should focus on the appropriateness in the research setting of the model used by the physicians, in which attention to the best interests of the adolescent (by proxy consent and investigator integrity) functions as a substitute for the adolescent’s consent. This model needs to be balanced with the moral weight of the principle of autonomy. Because of the fundamental differences between the research and treatment relationship, we claim that, although sometimes acceptable for treatment decisions, informed consent by adolescents in the research setting can never be ignored.
Bioethics, Apr 21, 2009
In ethics, the use of empirical data has become more and more popular, leading to a distinct form... more In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This 'empirical turn' is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached.
Pediatric Blood & Cancer, Sep 1, 2009
Archives of Disease in Childhood, Nov 1, 2008
Objective Currently, an intensive debate regarding extending medical research involving children ... more Objective Currently, an intensive debate regarding extending medical research involving children is taking place in The Netherlands and elsewhere. This presentation aims at contributing to this debate from an ethical point of view. Discussion Ethical approval of research involving children is based on two pillars: review of the scientific merit of the research and the risks and burdens for participants by an institutional or national review board, and obtaining informed consent from the child or its legal guardians. Discussions on the ethical acceptability of a study generally focus on the first pillar, especially on the assessment of risks and burdens. The second pillar, obtaining informed consent, is often neglected. This presentation will discuss some of the pitfalls in obtaining informed consent, focusing on the criteria of a valid informed consent: knowledge, competence and voluntariness. Special emphasis is placed on the concept of the “therapeutic misconception”, ie, the misconception that participating in a study is the same as receiving individualised treatment. This concept is assessed in light of the fundamental difference between the research relationship (investigator–participant) and treatment relationship (physician–patient). Understanding the concept of therapeutic misconception is essential to explaining why it is often difficult to obtain valid informed consent for medical research. Conclusion If extension of medical research with children will be permitted, the quality of the informed consent procedure needs special attention. Adequate training of physicians involved in the informed consent procedure to avoid pitfalls seems a necessary condition to be fulfilled before extending research involving children.
Research in Social and Administrative Pharmacy, 2022
This is a PDF file of an article that has undergone enhancements after acceptance, such as the ad... more This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Leerboek medische ethiek, 2013
Prenatal Diagnosis, 2011
ObjectiveTo investigate the parental perspectives of being confronted with an unforeseen fetal se... more ObjectiveTo investigate the parental perspectives of being confronted with an unforeseen fetal sex chromosomal aneuploidy (SCA), in light of the fact that this accidental finding is avoidable by rapid aneuploidy detection (RAD).MethodsExploratory qualitative interview study. We conducted 16 semi‐structured interviews with parents who decided to continue pregnancy after the unforeseen finding of a fetal SCA.ResultsThe communication of the unforeseen finding of SCA; the informed decision‐making process concerning the pregnancy follow‐up and the child and its future were the extracted themes. Parents were not prepared to accidental findings in routine prenatal diagnostics. All started an unguided search on the Internet. It is not at all clear whether parents have preference for an RAD test with X and Y probes Parents were satisfied with the post‐test professional information they received to make an informed decision, whereas after birth questions still remained to be answered.Conclusi...
International Journal of Clinical Pharmacy, 2019
Background Moral reasoning competency is essential in healthcare practice, especially in situatio... more Background Moral reasoning competency is essential in healthcare practice, especially in situations of moral dilemmas when a professional has to choose a morally justifiable action among several suboptimal action options. The Australian Professional Ethics in Pharmacy test (PEP test) measures moral reasoning among pharmacists. In Australia three levels of moral reasoning (schemas) were measured (1) business orientation (2) rules and regulations, and (3) patient rights (i.e. most advanced schema). Objective To test the applicability of the PEP test to pharmacists working in the Netherlands. Setting Dutch community pharmacy. Methods The PEP test consists of 36 statements (items) accompanying 3 moral dilemma scenarios. It was translated into Dutch and completed by 390 pharmacists. Principle component analysis (PCA) was used to investigate construct validity and Cronbach's Alpha was used to indicate internal consistency of the Dutch version of the PEP test. The eligible grouped statements and perceived possible moral reasoning schemas were compared to the Australian findings. Main outcome measure Moral reasoning schemas. Results The PCA analysis resulted in 3 components (i.e. possible moral reasoning schemas) that together accounted 27% variance in the data. The statements that represented the moral reasoning schemas 'business orientation' and 'rules and regulations' were somewhat similar when comparing these with the statements that represented these schemas in the PEP test study. The most advanced moral reasoning schema identified in Dutch pharmacists contained different statements compared to the statements that represented that schema among Australian pharmacists. This schema was labelled 'professional ethics'. Conclusion The PEP test needs further adaptation to the Dutch pharmacy practice context: especially the statements that should reflect the most advanced moral reasoning schema, need more accurate representations of professional pharmacy ethics that guide pharmacists in the Netherlands. Moral reasoning tests for a specific professional setting or country should be developed and adapted by experts who share the same professional values and practice as the respondents.
Journal of Hospice & Palliative Nursing, 2016
The role of intensive care unit (ICU) nurses during end-of-life care (EOLC) is not always clear. ... more The role of intensive care unit (ICU) nurses during end-of-life care (EOLC) is not always clear. Therefore, insight into their experiences and perspectives is warranted. The aim of this study was to determine how EOLC could be improved, by knowing the differences in the current EOLC according to ICU nurses and the way ICU nurses would like to provide EOLC. A qualitative study of 20 ICU nurses was performed. They were interviewed about their experiences with and perspectives on EOLC. Intensive care unit nurses were quite satisfied with the care they provided, but their description of the ideal situation differed from the current situation. The interviews resulted in 5 themes: (1) collaboration with other professionals; (2) communication between ICU nurses, ICU patients, and relatives; (3) nursing care for ICU patients; (4) nursing care for relatives of ICU patients; and (5) organizational aspects of EOLC. According to ICU nurses, EOLC is performed reasonably well, but some aspects are lacking that hinder optimal EOLC. The following issues for ICU nurses were identified: (1) need for an active role in multidisciplinary decision making, (2) sufficient knowledge of EOLC, (3) a checklist for nursing activities in EOLC, and (4) more time for caring for the patient and family. If those issues can be resolved, EOLC would improve according to the ICU nursing professionals.
Pallium, 2015
SamenvattingRegelmatig wordt onderzoek gedaan naar palliatieve zorg binnen de niet-acute zorgsett... more SamenvattingRegelmatig wordt onderzoek gedaan naar palliatieve zorg binnen de niet-acute zorgsetting, bijvoorbeeld bij oncologische patiënten of patiënten in de thuiszorg. Onderzoek naar zorg rond het levenseinde in de acute setting, zoals de intensive care (ic), is beperkt.
Human Reproduction, 2020
STUDY QUESTION What is the standpoint of an international expert panel on ovarian tissue cryopres... more STUDY QUESTION What is the standpoint of an international expert panel on ovarian tissue cryopreservation (OTC) in young females with Turner syndrome (TS)? SUMMARY ANSWER The expert panel states that OTC should be offered to young females with TS, but under strict conditions only. WHAT IS KNOWN ALREADY OTC is already an option for preserving the fertility of young females at risk of iatrogenic primary ovarian insufficiency (POI). Offering OTC to females with a genetic cause of POI could be the next step. One of the most common genetic disorders related to POI is TS. Due to an early depletion of the ovarian reserve, most females with TS are confronted with infertility before reaching adulthood. However, before offering OTC as an experimental fertility preservation option to young females with TS, medical and ethical concerns need to be addressed. STUDY DESIGN, SIZE, DURATION A three-round ethical Delphi study was conducted to systematically discuss whether the expected benefits excee...
Topics for the interviews. (DOCX 14Â kb)
BMC Medical Ethics, 2015
Background: This article is part of a study to gain insight into the decision-making process by l... more Background: This article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives. Methods: A content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision. Results: Three themes were identified: 'conditions', 'ethical considerations' and 'look back'. Conditions were: 'sense of urgency', 'incompetence to decide' and 'agreement between relatives'. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased's body, especially when they do not know his/her preference. Donor families respect the deceased's last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during decision-making. Discussion: The discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased's wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families. Conclusion: Discrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.
Nederlands Tijdschrift voor Tandheelkunde, 2019
Textbook of Palliative Care, 2019
Author's response to reviews: see over Reviewer's report Answer to reviewer/editor Reviewer: Nich... more Author's response to reviews: see over Reviewer's report Answer to reviewer/editor Reviewer: Nichon E Jansen Discretionary revision 1. I personally prefer to use the word 'potential organ donor' instead of 'patient'. This makes clear that there is a patient phase and a donor phase. In most cases, we used the word 'eligible (organ) donor' and occasionally the word 'patient'. We have followed your suggestion and replaced the word 'patient' with potential organ donor. Minor essential revision 2. I have a comment regarding sentences 282-284. The study underscores the importance of decoupling ('waiting with the donation request and giving relatives the time to realize that their beloved has died'). In The Netherlands (and other European countries (1) in practice the moment of approaching families for organ donation is more and more before final confirmation of neurological death in the DBD donor, but after treatment is futile. So the suggestion of the authors for decoupling does not match the situation in practice.
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Papers by Evert van Leeuwen