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

Dementia and assisted suicide and euthanasia

Abstract : The number of dementia patients requesting euthanasia in the Netherlands has increased over the past five years. The issue is highly controversial. In this contribution we discuss some of the main arguments: the nature of suffering, the voluntariness of the request and the role of the physician. We argue that society has a duty to care for patients who suffer from dementia and to make their lives as good and comfortable as possible. We also argue that it can be morally acceptable for those who do not want to continue their life with dementia to choose to die. The choice can be based on good reasons

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

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

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

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

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, especial

Ethical advice for an intensive care triage protocol in the COVID-19 pandemic: Lessons learned from the Netherlands

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care (IC) treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence

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