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Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations.Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention.Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care.Conclusions: My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients. [ABSTRACT FROM AUTHOR]

A recurrent issue in the vast amount of literature on reasoning models in ethics is the role and nature of moral intuitions. In this paper, we start from the view that people who work and live in a certain moral practice usually possess specific moral wisdom. If we manage to incorporate their moral intuitions in ethical reasoning, we can arrive at judgements and (modest) theories that grasp a moral experience that generally cannot be found outside the practice. Reflective equilibrium (RE) provides a framework for balancing moral intuitions, ethical principles and general theories. Nevertheless, persisting problems associated with the use of intuitions need to be addressed. One is the objection that moral intuitions lack the credibility necessary to guide moral reasoning. Ethicists have tried to solve this problem by formulating criteria to separate the "bad" intuitions from the "good" ones at the beginning of the reasoning process. We call this the credible input-justified outcome strategy. An example is the appeal to the common morality by Beauchamp and Childress. We think this approach is unsuccessful. As an alternative, we outline the good reasoning-justified outcome strategy. It connects to a variant of RE in which intuitions from different sources are incorporated. We argue that the elements of RE have different levels of justificatory power at the start of reasoning. In our strategy, each element can gain or lose justificatory power when it is tested in a reasoning process that meets several criteria. [ABSTRACT FROM AUTHOR]

The practice of coercive measures in psychiatry is controversial. Although some have suggested that it may be acceptable if patients are a danger to others or to themselves, others committed themselves to eliminate it. Ethical, legal and clinical considerations become more complex when the mental incapacity is temporary and when the coercive measures serve to restore autonomy. We discuss these issues, addressing the conflict between autonomy and beneficence/non-maleficence, human dignity, the experiences of patients and the effects of coercive measures. We argue that an appeal to respect autonomy and/or human dignity cannot be a sufficient reason to reject coercive measures. All together, these ethical aspects can be used both to support and to reject a non-seclusion approach. The total lack of controlled trials about the beneficial effects of coercive measures in different populations however, argues against the use of coercive measures. [ABSTRACT FROM AUTHOR]

In April 2002 a new law regarding euthanasia came into effect in the Netherlands. This law holds that euthanasia remains a criminal offence unless it is (1) performed by a physician who (2) acts according to six specified rules of due care and (3) reports the case to a review committee. The six rules of due care are similar to those of the previous regulation and are largely based on jurisprudence. Completely new, however, is the article concerning a competent patient who has written an advance directive requesting euthanasia under certain circumstances. The law stipulates that a physician may act according to that written request, as long as he or she fulfils all other rules of due care. The author defends the view that these requests are neither feasible nor ethically justifiable, and presents both moral and practical arguments for this, claiming that for consistency reasons one cannot act on the basis of a written statement and fulfil the other rules of due care at the same time. The author also examines a difficult case of a demented, severely depressed woman who had written a living will requesting euthanasia before she became demented. [ABSTRACT FROM AUTHOR]

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians (oncologists, cardiologists, and nursing home physicians) and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld. [ABSTRACT FROM AUTHOR]

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants' ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of 'choice'. [ABSTRACT FROM AUTHOR]

The article presents the discussion on legalization of assisted suicide for persons with a death wish without severe illness. Topics include providing an analysis based on data from the empirical research for elaborating on respect for the autonomy of persons; and diminishing or vanishing often associated with an establishment or reestablishment of connections with other people society.

Aim: Narrative medicine has been promoted as an innovative and effective means of stimulating medical students' professional development by teaching them to approach their patients' experiences of illness with more understanding and compassion. This systematic literature review aims to answer the following question: what evidence of effect is available in the literature about models for teaching narrative medicine? Methods: We conducted a narrative review of 36 articles and used the Best Evidence in Medical Education (BEME) Global Scale and Kirkpatrick Scale for strength and importance of evidence to categorize reported assessment strategies and to evaluate the effectiveness of their narrative medicine programs. Results: We found evidence that narrative medicine is an effective pedagogic tool with a clear and replicable structure and methodology. We also determined that a positive impact could be measured when pertaining to participation and modification of attitudes, knowledge, and skills. However, unequivocal evidence of the effect of narrative medicine on students' behavior or ongoing interaction with colleagues and patients is still lacking. Conclusion: While many recent publications describe the goals and virtues of a narrative-based approach, more research is needed to determine whether or not there is an ideological consensus undergirding this approach. In addition, it is still unclear whether the long-term impact of narrative medicine classroom interventions are felt by patients, or whether such interventions positively impact patient care. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient. [ABSTRACT FROM AUTHOR]

Purpose: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation.Methods: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted.Results: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced.Conclusion: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly. [ABSTRACT FROM AUTHOR]

The article focuses on a framework and criteria developed to make obligatory the inclusion of a controversial risk in the model informed consent document while avoiding the need to list every possible harm that could inflict a person. It discusses research integrity that relies on government regulations and foundational documents, an overview of a study on the Action to Control Cardiovascular Risk in Diabetes (ACCORD) and a proposed example of the items to be included in a consent document.

The article focuses on consent bias in bioethical research and on the article "Does Consent Bias Research?" by Mark A. Rothstein and Abigail B. Shoben. In the article the authors offer their opinions on consent and consent bias in bioethical research and on several points that are raised in Rothstein and Shoben's article.

Background: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation.Methods: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes.Results: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script.Conclusions: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients' preferences while staying attuned to patients' needs.Trial Registration: International Standard Randomised Controlled Trial Number registry 63110516 ( ISRCTN63110516 ) per 10/3/2014. [ABSTRACT FROM AUTHOR]

Background: Within the EU, regulators are obliged to take ethical issues into consideration during marketing authorization deliberation. The goal of this manuscript is to identify what kinds of ethical issues regulators encounter during marketing authorization application deliberations, and the incidence of these ethical issues.Methods: This study used an EMA-provided Excel file that contains all the GCP non-compliance findings from all inspection reports from 2008-2012. There were 112 medicinal products and a total of 288 clinical trial sites. There were a total of 4014 GCP non-compliance findings. The findings that were ethically relevant were extracted using NVivo 10.0 and categories for the ethically relevant findings (ERFs) were created. Note was taken of the incidence of ERFs for each category and the inspectors' gradings of these findings were extracted. This study also looked at the mean and the maximum number of ERFs per grading per medicinal product application, as well as the number of medicinal products with at least one ERF and those with at least major ERFs.Results: With multiple coding, there were 1685 ERFs. ERFs were present in almost all of the medicinal products (97.3%). The majority of ERFs were graded as major. At least major ERFs were present in almost all medicinal products with ERFs. The categories with the highest number of ERFs were protocol issues, patient safety, and professionalism issues. In terms of the density of combined critical and major findings, monitoring and oversight, protocol issues, and respect for persons top the list. This study also showed that, on average, there were 7.54 major and 2.95 critical ERFs per medicinal product application, although ERFs can increase to 30 major and 12 critical.Conclusion: Regulators regularly encounter ERFs that at least "might adversely affect the rights, safety or well-being of the subjects". It remains to be explored how regulators respond to these ethical issues. [ABSTRACT FROM AUTHOR]

Objectives: To investigate why physicians label end-of-life acts as either 'euthanasia/ending of life' or 'alleviation of symptoms/palliative or terminal sedation', and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three 'standard' cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician's intention, (3) type of patient request, (4) patient's life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician's labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as 'euthanasia/ending of life' were the administration of muscle relaxants (99% of these cases were labelled as 'euthanasia/ending of life') or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as 'euthanasia' (87%) or 'ending of life' (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians' label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not. [ABSTRACT FROM AUTHOR]

Although guidelines restrict the use of continuous deep sedation to patients with refractory physical symptoms and a short life-expectancy, its use is not always restricted to these conditions. A focus group study of physicians was conducted to gain more insight in the arguments for and against the use of continuous deep sedation in several clinical situations. Arguments in favour of continuous deep sedation for patients with a longer life-expectancy were that the overall clinical situation is more relevant than life-expectancy alone, and that patients' wishes should be followed. Continuous deep sedation for patients with predominantly emotional/existential suffering was considered appropriate when physicians empathize with the suffering. Further, some physicians indicated that they may consider the use of sedation in the context of a euthanasia request. Arguments were that the option of continuous deep sedation is a better alternative; it may comfort some patients when their thoughts about potential future suffering become unbearable. Further, some considered continuous deep sedation as less burdening or a bother to perform. We conclude that physicians' decision-making about continuous deep sedation is characterized by balancing the interests of patients with their own feelings. Accordingly, the reasons for its use are not unambiguous and need further debate. [ABSTRACT FROM AUTHOR]