Evert van Leeuwen

Radboud University Medical Centre (Radboudumc) · Medical Ethics Section

Background/objective: To gain insight into both patients' and relatives' experiences with spiritual care (SC) in the intensive care unit (ICU). Methods: Method used was qualitative interviewing. This was a thematic, topic-centered, biographical, and narrative approach, using semistructured interviews with thematic analysis. A purposive sampling...

Purpose: The aim of this study is to review the literature for three major domains in relation to spiritual care in the ICU, namely Quality of Life (QoL), Quality of Care (QoC), and Education (E). Method: An integrative literature research. Results: The 113 selected articles reveal that spirituality is an essential component of QoL and that co...

Although this chapter has its origins in the Dutch practice of palliative care at home, its message is relevant to all countries in which a considerable percentage of the population prefers to die at home. These people usually depend to a great extent on general practitioners to realize such a death at home. Although there are exceptions, many gene...

Since there are no scientific data available about the role of spiritual care (SC) in Dutch ICUs, the goal of this quantitative study was twofold: first, to map the role of SC as a part of daily adult ICU care in The Netherlands from the perspective of intensivists, ICU nurses, and spiritual caregivers and second, to identify similarities and diffe...

The interest in RDN for hypertension has fluctuated recently, with a flurry of initial enthusiasm followed by sudden loss of interest by researchers and device manufacturers, with an almost as sudden resurgence in clinical trials activity and device innovation more recently. There is widespread consensus that this therapeutic strategy can be effect...

Aim: The aim of this study was to examine the role and responsibilities of intensive care unit (ICU) nurses regarding the spiritual aspects of end-of-life care in the ICU, from the chaplains' perspectives. Method: An explorative study including inductive thematic analysis was used. Two focus group interviews with in total eleven chaplains workin...

Aim: The aim of this study was to examine the effectiveness of supporting intensive care units on implementing the guidelines. Background: Quality of care can be achieved through evidence-based practice. Guidelines can facilitate evidence-based practice, such as the guidelines 'End-of-life care in the intensive care unit, nursing care'. Before i...

Background End-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices. Methods We conducted a syste...

End-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices. We conducted a systematic review of empi...

The one-size-fits-all paradigm of drug development fails to address inter-individual variability in drug response. Pharmacogenetics research aims at studying the role of genotypic differences in drug response. Recently, the pharmaceutical industry has shown interest to embed pharmacogenetics studies in the process of drug development. Nevertheless,...

Background In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. Methods A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered...

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 provi...

Aim: The aim of this study was to explore how intensive care unit (ICU) nurses describe their role during End-of-Life Care (EOLC) in the ICU, related to the interaction between patient, family and professionals (care triad). Method: Three electronic databases, PubMed, CINAHL and EMBASE, and reference lists of included studies were searched for s...

Regelmatig 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.

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 sta...

Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services...

This qualitative study explores Nigerian health care professionals' concepts of good dying/a good death and how telemedicine technologies and services would fit the current Nigerian palliative care practice. Supported by the Centre for Palliative Care Nigeria (CPCN) and the University College Hospital (UCH) in Ibadan, Nigeria, the authors organized...

Approximately 8–18% of all patients with high blood pressure (BP) are apparently resistant to drug treatment.1,2 In this situation, new strategies to help reduce BP are urgently needed but the complex pathophysiology of resistant hypertension makes this search difficult. Not surprisingly in this context, the latest non-drug treatment which triggere...

The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine mig...

End-of-life policy reforms are being debated in many countries. Research evidence is used to support different assumptions about the effects of public policies on end-of-life practices. It is however unclear whether reliable international practice comparisons can be conducted between different policy contexts. Our aim was to assess the feasibility...

Heidegger’s understanding of death in terms of possibility has been debated for more than three decades. The main dispute is about the coherence of the concept of possibility. To advance the debate, we analyse the meaning of “death as a possibility” in three steps. Firstly, we delineate the notions of death and possibility in Heidegger’s fundamenta...

Background: Effectiveness of the donation request is generally measured by consent rates, rather than by relatives' satisfaction with their decision. Our aim was to elicit Dutch ICU staffs' views and experiences with the donation request, to investigate their awareness of (dis)satisfaction with donation decisions by relatives, specifically in the...

Palliative care involves the care for patients with a life threatening disease, often advanced cancer, aiming at an optimal quality of life for the patient and his/her family. Although many patients with advanced cancer live at home in the last phase of disease, hospital transfers are often performed increasing burdening of patients and families an...

Scientific progress and the development of new technologies often incite enthusiasm, both in scientists and the public at large, and this is especially apparent in discussions of emerging medical technologies, such as tissue engineering (TE). Future-oriented narratives typically discuss potential applications with much hype and expectations. In thi...

The interdisciplinary discipline of bioethics in the Netherlands has grown without shocking revelations of unethical behavior but in response to the growth of medical technology and the ensuing confrontations with ethical issues of its limits and the position of patients’ rights. Societal developments stressed the space for individual choice, espec...

Does suffering from a disease come from natural cause, does it imply personal guilt, or is it a token of God’s Will that has to be obeyed? These questions are at the heart of many denominations of Protestant Christian Religion. The question is also relevant to UNESCO’s declaration on Bioethics and Human Rights. Are those rights fundamental or are t...

Appropriate palliative care communication is pivotal to optimizing the quality of life in dying patients and their families. This review aims at describing communication patterns in palliative care and discussing potential relations between communication patterns and upcoming telecare in the practice of palliative care. This review builds on a syst...

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 p...

Background: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This pa...

Incidental findings in prenatal diagnostic testing may or may not have clear prognostic significance for the phenotype. We studied experts' opinions of the benefit and disadvantage of an incidental prenatal diagnosis of a sex chromosomal aneuploidy (SCA). We interviewed 16 experts in the field of counseling and treatment of people with SCA and aske...

In their 2007 paper, Swierstra and Rip identify characteristic tropes and patterns of moral argumentation in the debate about the ethics of new and emerging science and technologies (or "NEST-ethics"). Taking their NEST-ethics structure as a starting point, we considered the debate about tissue engineering (TE), and argue what aspects we think ough...

Tissue engineering-part of regenerative medicine-is a promising technology that could potentially offer elegant solutions to urogenital defects, but so far, it has fallen short of its potential. Within experimental studies for bladder and urethra reconstructions, two clinical applications have been described, but extension of these techniques to th...

Background: Deciding about the organ donation of one's brain-dead beloved often occurs in an unexpected and delicate situation. We explored the decision making of the relatives of potential brain-dead donors, its evaluation, and the factors influencing decision making. Methods: We used the integrative review method. Our search included 10 databa...

Background: in debates around prenatal screening, it is frequently argued that responsible parenthood implies the acquisition of all available medical information about the health of a fetus, and use of this information to benefit the future child. Objective: to analyse whether an offer of a prenatal test leads women to believe that they are mor...

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediat...

This article is part of the EuroSTEC project, which aims at developing tissue engineering-based treatments for structural disorders present at birth. EuroSTEC is positioned at the intersection of three areas with their own ethical issues: (1) regenerative medicine, (2) research with pregnant women and fetuses, and (3) research with neonates. Becaus...

To 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). Exploratory qualitative interview study. We conducted 16 semi-structured interviews with parents who decided to continue pregnancy...

Appeals to the moral authority of nature play an important role in ethical discussions about the acceptability of prenatal testing. While opponents consider testing a dangerous violation of the moral inviolable course of nature, defenders see testing as a new step in improving dominion over nature. In this study we explored the meaning of appeals t...

The AGREE collaboration has introduced a new research-based version of its instrument to assess the quality of clinical guidelines and the reporting of the underlying development process.1,2 This version maintains the same six quality-defining domains that underpinned the original AGREE approach: scope and purpose; stakeholder involvement; rigour...

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...

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and h...

van der Vorm A, van der Laan AL, Borm G, Vernooij-Dassen M, Rikkert MO, van Leeuwen E, Dekkers W. Experts' opinions on ethical issues of genetic research into Alzheimer's disease: results of a Delphi study in the Netherlands. Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences be...

In paediatric oncology, the risk of infertility due to treatment constitutes an important problem. For sexually mature male adolescents, sperm cryopreservation is an option, but discussing the topic is complex because of the sensitive nature and the limited time frame. In this article, we determined attitudes and preferred roles of physicians and p...

In contrast to most Western countries, routine offer of prenatal screening is considered problematic in the Netherlands. The main argument against offering it to every pregnant woman is that women would be brought into a moral dilemma when deciding whether to use screening or not. This paper explores whether the active offer of a prenatal screening...

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...

Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. (1) To identify and compare the five ethical issues considered most important by surveyed expert panell...

Solidarity is one of the four values in European healthcare. Solidarity has resulted from a long lasting process governed by the moral experiences of people who suffer and need support. Developments in the modern health care system defy that concept of solidarity in propagating individualized care and insurance. In the long run this might change th...

De problematiek van kinderen met een stoornis in de seksuele ontwikkeling trekt de laatste jaren veel aandacht. De ethische rechtvaardiging van de behandeling zoals die is ontstaan na de Tweede Wereldoorlog staat daarbij ernstig ter discussie. In plaats van die traditionele behandeling krijgt de keuzevrijheid van de betrokkene meer aandacht. Deze b...

The treatment of children with disorders of sexual development has lately been subject of many debates. The ethical consensus on treatment that originated fifty years ago is severely questioned. Instead, much emphasis is given to freedom of choice and the principle of informed consent. This article focuses on the ethical controversy. It is argued t...

Anaesthetists are members of the operating team. Although the surgeons usually consider themselves to be the leaders of the team, all members, including the anaesthetist, have their own legal, ethical and professional responsibilities. Good communication and sharing responsibility are characteristics of teamwork. Many factors can affect team functi...

--Ethical approval of research involving human beings is based on two pillars: supervision of the scientific merit of the research and the risks and burdens for participants by an institutional review board (IRB) or the Dutch Central Committee on Research Involving Human Subjects (CCMO), and obtaining informed consent from the participant or his or...

Prenatal screening for Down's syndrome and other chromosomal anomalies has become common obstetrical practice. The purpose of this intervention is to provide women with the information needed to make informed reproductive choices. It is assumed that the ethical beliefs of parents play an important role in decision-making about whether to undergo te...

Answering the question: Does the offer of prenatal screening impede women in making autonomous choices? Semi-structured interviews with 59 women to whom a prenatal screening test was offered and who were in the process of taking a decision. Women described the offer as confronting but expressed a positive attitude towards screening and considered t...

Background: Objection by relatives is the main cause of loss of potential donors. Many proxies regret their refusal. We examine if support during decision making can contribute to a more satisfactory outcome for them and as side effect yield more organs. Methods: We are conducting a prospective qualitative study by interviewing relatives of potenti...

The complexity of the decision-making process regarding life-sustaining medical treatment was illustrated by the single case of a 12-year-old boy with severe meningococcal septicaemia. When his clinical condition deteriorated, necessitating haemodialysis and multiple amputations of the extremities, questions about the futility of treatment and the...

To gain insight into the standards of rationality that physicians use when evaluating patients' treatment refusals. Qualitative design with in depth interviews. The study sample included 30 patients with cancer and 16 physicians (oncologists and general practitioners). All patients had refused a recommended oncological treatment. Patients base thei...

The approach to AIDS as a disease and a threat for social discrimination is used as an example to illustrate a conceptual thesis. This thesis is a claim that concerns what we call a medical issue or not, what is medicalised or needs to be demedicalised. In the friction between medicalisation and demedicalisation as discursive strategies the latter...

This article evaluates whether providing hypothetical or realistic information influences the assessment of decision-making capacity in elderly patients with (and without) cognitive impairment. Decision-making capacity was assessed by means of a clinical vignette that presented a choice about whether to undergo an endoscopic procedure. The followin...

The main objective of this article is to evaluate and describe instruments for assessing decision-making capacity in psychiatry and psychogeriatrics, and to evaluate them for use in daily practice. The instruments were selected in Medline articles. We focus on the relationship between these instruments and the concept of competence, represented in...

The moral acceptability or non-acceptability of the use of human embryos in research raises questions on several philosophical levels. The mixing-up of these levels results in strongly defended and endless debates. In this contribution, arguments on three levels will be discussed, the ontological, the practical and instrumental and the level of hum...

A case of a Suriname female occipito-parietal to occipito-parieto-temporal craniopagus twins is described. The girls were transferred to the VU University Medical Center (VUmc) in Amsterdam, the Netherlands, for further diagnostics and to analyze whether surgical separation was feasible and ethically justifiable. The multifactorial aspects of diffe...

The objective of this study was to clarify the term ‘palliative’ in clinical oncology. A qualitative study design with in-depth interviews was applied. The study sample included 30 cancer patients and 16 physicians.In clinical oncology, the use of the term ‘palliative’ to describe both anticancer treatments and palliative care may cause confusion a...

In absence of a gold standard of methods to assess competence, three judgements of competency of geriatric patients are evaluated: the judgements of a physician, the judgement of a family member, and the judgement of an instrument. Competence of 80 geriatric patients was judged both by a physician and a family member. Decision making capacity was a...

The idea that patients should take up an autonomous position in the decision-making process is generally appreciated. However, what patient autonomy means in the case of patients who refuse a recommended oncological treatment has not been investigated. This study aims to clarify how the concept of patient autonomy can be applied to patients who ref...

In many western cultures nowadays, the law requires that competent patients make their own decisions in healthcare. Incompetent patients need special protection and care, especially when it comes to medical research. In dealing with cognitively impaired, demented patients, however, clinical experience shows that these patients can still have moral...

This article focuses on the assessment of competence of elderly persons both with and without cognitive impairment. In total 113 patients of a geriatric clinic were interviewed. Competence was assessed by using two clinical vignettes, representing respectively a hypothetical treatment situation with mild consequences (endoscopy) and one with severe...

Moral and social attitudes towards medical treatment and research rapidly changed during the last four decades of the Twentieth Century. In the Netherlands these changes are reflected in three laws adopted in the 1990s. The Law on Medical Treatment Agreement (Wet Geneeskundige BehandelOvereenkomst, WGBO, 1992) reflects the respect for autonomy and...

On April 10, 2001, after extensive committee deliberations, the Second Chamber of the Dutch Parliament passed a bill that was introduced in August 1999 legalizing physician-assisted death. The bill is officially called It was passed by a majority vote in the Second Chamber of Parliament and was supported by the majority parties constituting the pre...

This pilot study explores the reasons patients have for refusing chemotherapy, and the ways oncologists respond to them. Our hypothesis, generated from interviews with patients and oncologists, is that an ethical approach that views a refusal as an autonomous choice, in which patients are informed about the pros and cons of treatment and have to de...

To identify ethical issues that interns encounter in their clinical education and thus build a more empirical basis for the required contents of the clinical ethics curriculum. The authors analyzed a total of 522 required case reports on ethical dilemmas experienced by interns from September 1995 to May 1999 at the medical school of Vrije Universit...

Le domaine medical des pays de l'Ouest est actuellement marque par differentes formes de pratiques medicales. Se cotoient la medecine traditionnelle et des medecines alternatives engendrant souvent des problemes et prejudices en raison, notamment, d'un manque de langage et de taxonomie communs. L'A. cherche ici a combattre ces problemes en developp...

EvL: It seems that our society has now come to terms with a tremendously difficult issue in accepting euthanasia. How do you explain how we have been able to reach a consensus on such a conflicting issue? HK: The basis of the Dutch health care system is the traditional family doctor, who in most cases knows his or her patient very well, and is even...

Euthanasia and physician assisted suicide remain controversial in the United States of America, in the Netherlands, and in other western countries. Debates involve highly abstract and technical problems, situated at the intersection of ethics, law, and medicine; nevertheless, they have a very public character. The issues are broadly discussed in th...

Hospital ethics committees in the Netherlands have had the unique responsibility of developing euthanasia policies for their institutions. Although each policy necessarily reflects a particular facility, family resemblances necessarily remain. Because ethics committees outside the Netherlands may soon face the same challenge, two such policies are...

In spite of the seminal work A Philosophical Basis of Medical Practice, the debate on the task and goals of philosophy of medicine still continues. From an European perspective it is argued that the main topics dealt with by Pellegrino and Thomasma are still particularly relevant to medical practice as a healing practice, while expressing the need...

In spite of the seminal work A Philosophical Basis of Medical Practice, the debate on the task and goals of philosophy of medicine still continues. From an European perspective it is argued that the main topics dealt with by Pellegrino and Thomasma are still particularly relevant to medical practice as a healing practice, while expressing the need...

From a Dutch Perspective: Response to “Rights of the Terminally Ill Act of the Australian Northern Territory” by Robert L. Schwartz (CQ Vol 5, No 1) - Volume 5 Issue 2 - Gerrit K. Kimsma, Evert van Leeuwen

Hospital ethics committees in The Netherlands have had the unique responsibility of developing euthanasia policies for their institutions. Although each policy necessarily reflects a particular facility, family resemblances necessarily remain. In the interest of ethics committees outside The Netherlands that may soon face the same challenge, two su...

The chapter presents a study of one of Descartes' most important works: the Discourse on Method. In many respects, the Discourse contains the outline of modern philosophy. Philosophically speaking, the Discourse even appears to determine the position of modern philosophy with respect to science. Discourse seeks to persuade people in possession of t...

KIE Recent legal and ethical developments in Dutch neonatology are summarized. In 1988, a surgeon published an account of the death of a newborn [Baby Ross] with Down syndrome when he, the surgeon, concurred with the parents' refusal of surgery to correct atresia of the duodenum and small intestine. When the story became public, the physician was p...

Dutch developments on euthanasia have drawn much attention over the years. Defenders and opponents have been telling very different stories about the practice of euthanasia and the frequency of cases, and the Dutch government has been struggling with the legal and moral problems involved. Concern about the procedures followed by physicians as well...