The ethics of ethics conferences: Is Qatar a desirable location for a bioethics conference?

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights - including the treatment of migrant workers and the rights of women - corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with.

Feeling Seen, Being Heard: Perspectives of Patients Suffering from Mental Illness on the Possibility of Physician-Assisted Death in the Netherlands.

Physician-assisted death (PAD) for patients suffering from a mental illness is allowed in the Netherlands under certain conditions but is a very controversial topic, mainly discussed by ethicists and physicians. The voice of the patient is rarely included in the debate, so we know little about what their views on the topic are. We aim to understand the views of patients with mental illness and wish to die with regard to the possibility of PAD in the Netherlands. The data for this qualitative study were collected through 21 in-depth interviews with Dutch patients who have a wish for PAD as a result of suffering from a mental illness. We identified four themes in relation to the meaning of PAD for the patients suffering from mental illness and wish to die. These themes are (1) Autonomy and self-determination, (2) ending the suffering, (3) recognition, and (4) a dignified end-of-life. The option of PAD for patients suffering from mental illnesses was considered of great importance to the patients who have a wish to die. We highlight the importance of 'recognition' for the situation of the patient, as this could lead to new perspective. We argue that psychiatrists need to reflect on providing this recognition in earlier phases of treatment, taking seriously and discussing a wish for PAD in treatment is beneficial to patients. It provides space for the patient to discuss their wishes and could cause them not wanting to die anymore.

Do Doctors Differentiate Between Suicide and Physician-Assisted Death? A Qualitative Study into the Views of Psychiatrists and General Practitioners.

Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: 'impulsive suicidality,' 'chronic suicidality,' and 'rational death wishes.' To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a 'rational suicide,' as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient's suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering.

First prosecution of a Dutch doctor since the Euthanasia Act of 2002: what does the verdict mean?

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia.

Physicians' experiences with euthanasia: a cross-sectional survey amongst a random sample of Dutch physicians to explore their concerns, feelings and pressure.

BACKGROUND: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide. METHODS: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide. RESULTS: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was ≥80 years, had a life-expectancy of ≥6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide. CONCLUSIONS: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.

Are Concerns About Irremediableness, Vulnerability, or Competence Sufficient to Justify Excluding All Psychiatric Patients from Medical Aid in Dying?

Some jurisdictions that have decriminalized assisted dying (like Canada) exclude psychiatric patients on the grounds that their condition cannot be determined to be irremediable, that they are vulnerable and in need of protection, or that they cannot be determined to be competent. We review each of these claims and find that none have been sufficiently well-supported to justify the differential treatment psychiatric patients experience with respect to assisted dying. We find bans on psychiatric patients' access to this service amount to arbitrary discrimination. Proponents of banning the practice ignore or overlook alternatives to their proposal, like an assisted dying regime with additional safeguards. Some authors have further criticized assisted dying for psychiatric patients by highlighting allegedly problematic practices in those countries which allow it. We address recent evidence from the Netherlands, showing that these problems are either misrepresented or have straightforward solutions. Even if one finds such evidence troubling despite our analysis, other jurisdictions need not adopt every feature of the Dutch system.

Considerations on requests for euthanasia or assisted suicide; a qualitative study with Dutch general practitioners.

Background: In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the patient nor a duty of the physician. Beside the legal requirements, physicians can weigh their own considerations when they decide on a request for EAS. Objective: We aim at a better understanding of the considerations that play a role when physicians decide on a request for EAS. Methods: This was a qualitative study. We analysed 33 interviews held with general practitioners (GPs) from various regions in the Netherlands. Results: The considerations found can be divided in three main types. (i) Perceived legal criteria, (ii) individual interpretations of the legal criteria and (iii) considerations unrelated to the legal criteria. Considerations of this 3rd type have not been mentioned so far in the literature and the debate on EAS. Examples are: the family should agree to EAS, the patient's attitude must reflect resignation, or conflicts must be resolved. Conclusions: Our study feeds the ethical discussion on the tension that can arise between a physician's own views on death and dying, and the views and preferences of his patients. When considerations like 'no unresolved conflicts' or 'enough resignation' influence the decision to grant a request for EAS this poses questions from an ethical and professional point of view. We hypothesise that these considerations reflect GPs' views on what 'good dying' entails and we advocate further research on this topic.

To stop or not to stop: dissent and undue burden as reasons to stop participation in paediatric research.

Children participating in clinical research may show signs of discomfort, discontent, dissent and so on, that cannot be solved by comforting the child. When, and on what ground, should such signs lead to the decision to withdraw the child from the trial? In order to adequately protect children participating in clinical research, it is important to know how to determine during the course of a trial whether participation is still justified. Yet to date, legislation, ethical guidelines and medical ethical literature do not provide sufficient guidance. Therefore, in this paper we aim to provide the required clarity. We identify two types of reasons for taking signs of discomfort, discontent, dissent and so on, very seriously: (1) the principle of respect for the growing autonomy of the child, in those cases where a child expresses a clear, explicit and persistent wish to be withdrawn from the study; and (2) the principle of non-maleficence, in those cases where for an individual child, the research burden appears to be higher than acceptable. We recommend to closely monitor each child during the course of the study, thereby being vigilant to whether the child still wants to continue and to whether the actual burden the child experiences is still acceptable in relation to the permitted levels of burden.

Are positive experiences of children in non-therapeutic research justifiable research benefits?

BACKGROUND: Conducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6-18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits. METHODS: We used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using 'thematic' analysis. RESULTS: The interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff. CONCLUSIONS: Our study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk-benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children.

Motivations of children and their parents to participate in drug research: a systematic review.

UNLABELLED: Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a "guinea pig" and fear of risks were most mentioned as discouraging factors by children. CONCLUSION: Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent. WHAT IS KNOWN: • This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research. • The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary. What is new: • This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.

The implausibility of response shifts in dementia patients.

Dementia patients may express wishes that do not conform to or contradict earlier expressed preferences. Our understanding of the difference between their prior preferences and current wishes has important consequences for the way we deal with advance directives. Some bioethicists and gerontologists have argued that dementia patients change because they undergo a 'response shift'. In this paper we question this assumption. We will show that proponents of the response shift use the term imprecisely and that response shift is not the right model to explain what happens to dementia patients. We propose a different explanation for the changed wishes of dementia patients and conclude that advance directives of dementia patients cannot be simply put aside.

Treatment-resistant major depressive disorder and assisted dying.

Competent patients suffering from treatment-resistant depressive disorder should be treated no different in the context of assisted dying to other patients suffering from chronic conditions that render their lives permanently not worth living to them. Jurisdictions that are considering, or that have, decriminalised assisted dying are discriminating unfairly against patients suffering from treatment-resistant depression if they exclude such patients from the class of citizens entitled to receive assistance in dying.

End-of-life decisions for children under 1†year of age in the Netherlands: decreased frequency of administration of drugs to deliberately hasten death.

OBJECTIVE: To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. METHODOLOGY: This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was derived from the central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). FINDINGS: In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision-a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. DISCUSSION AND CONCLUSION: There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death.

Morally Relevant Similarities and Differences Between Children and Dementia Patients as Research Subjects: Representation in Legal Documents and Ethical Guidelines.

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines.

Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public.

BACKGROUND: The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia. METHODS: In this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opinions about a vignette on euthanasia based on an AED in a patient with advanced dementia. RESULTS: Members of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients' autonomous wishes and the unbearableness of their suffering. CONCLUSION: Legally, an AED may replace direct communication with patients about their request for euthanasia. In practice, physicians are reluctant to forego adequate verbal communication with the patient because they wish to verify the voluntariness of patients' request and the unbearableness of suffering. For this reason, the applicability of AEDs in advanced dementia seems limited.

Beyond competence: advance directives in dementia research.

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients' gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to decide offers a valuable opportunity to authorize research, by using an advance research directive (ARD). Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects.

Frequency of self-directed dying in the Netherlands: research protocol of a cross-sectional mixed-methods study.

INTRODUCTION: In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician's help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying. METHODS AND ANALYSIS: This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents' experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software. ETHICS AND DISSEMINATION: The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. Results of the study will be disseminated through publications in scientific journals and conference presentations. TRIAL REGISTRATION NUMBER: NCT06186791.

What if your research is suddenly affiliated with a tobacco manufacturing company?

The tobacco industry is accountable for an annual global death toll of approximately 8 million people and cigarette smoking is the foremost risk factor for several types of cancer. In addition, the tobacco industry has a long and controversial history of trying to influence scientific research and of engaging in other morally problematic practices. In September 2021, the respiratory community was alarmed by the takeover of Vectura Group (Vectura) by Philip Morris International. As a reaction to this acquisition, strict measures were imposed by the International Respiratory Societies to prohibit the involvement of Vectura in respiratory research and its participation in societies' activities. International Respiratory Societies argued that Vectura had become part of the tobacco industry due to this takeover and is, therefore, subject to the same rules and restrictions. From a healthcare and historical perspective, the reaction and imposed measures are very understandable. However, for researchers that were already affiliated with Vectura through long-standing agreements and for research that was funded by Vectura, the imposed measures have serious consequences. With this article, we provide an example of these consequences. By reflecting on this issue, we would like to start a conversation regarding the current measures and to encourage the respiratory community to begin thinking of a way to avoid these consequences in the future. In addition, we hope that with this conversation the Respiratory Societies can set an example for other medical societies on how to cope with possible morally tainted affiliations (eg, fast food companies, alcohol manufacturing companies) in the future.

Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: a mixed methods approach.

BACKGROUND: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. AIM: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. DESIGN: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. RESULTS: Most respondents agreed with the requirement of a patient request (64-88%) and the absence of a requirement concerning life expectancy (48-71%). PAS was thought acceptable by 24-39% of respondents for patients requesting it because of mental suffering due to loss of control, chronic depression or early dementia. In the case of severe dementia, one third of physicians, 58% of nurses and 77% of the general public agreed with performing euthanasia based on an advance directive. Interviewees illustrated these findings and supported the Act. CONCLUSIONS: Health care professionals and the general public mostly support the legal requirements for euthanasia and PAS. The law permits euthanasia or PAS for mental suffering but this possibility is not widely endorsed. The general public is more liberal towards euthanasia for advanced dementia than health care professionals. We conclude that there is ample support for the law after eight years of legal euthanasia.