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Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families., Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake., Methods: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018-2020). Thematic analysis was used., Results: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non-verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective., Conclusion: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs., Impact: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity., (© 2021 John Wiley & Sons Ltd.)

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made.

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.

Background: In the Netherlands, physician-assisted death (PAD) is allowed under certain conditions. Patients who suffer from mental illnesses are not excluded from this practice. In 2018, general practitioners (GPs) performed 20 out of a total of 67 cases of EAS for psychiatric suffering., Objective: More insight into GPs' experiences and views with regard to PAD in psychiatry., Design: The data for this study were obtained through a survey amongst 500 randomly selected Dutch GPs and by in-depth interviews with 20 Dutch GPs., Setting: A survey study and in-depth interviews., Subjects: Dutch GPs., Results: 86 out of 101 GPs found it conceivable to perform EAS in case of somatic disease, and 51 out of 104 GPs found it conceivable in the case a patient suffered from a mental illness only. The main reason given for refusing an PAD request was that the criteria of due care were not met. Reasons for supporting psychiatric PAD related to responsibility, self-determination, compassion, fairness, and preventing suicide. Reasons for not supporting psychiatric PAD were related to the scope of medicine, a perceived lack of experience, uncertainties regarding the criteria of due care and life-expectancy., Conclusion: GPs are less likely to perform PAD for suffering from a mental illness, compared to somatic suffering. Some GPs apply an extra criterion of 'life-expectancy' in case of PAD for suffering from a mental illness. Refusing PAD based on a long life expectancy keeps open the possibility of recovery, but may also just prolong the suffering and add to the unbearableness of it.KEY POINTSCurrently, there is no qualitative research on what the views are of general practitioners regarding the subject of physician-assisted death (PAD) for patients suffering from severe mental disorders.General practitioners are less likely to consider a request for physician-assisted death by a patient suffering from a psychiatric disorder, compared to somatic suffering. Reasons for supporting psychiatric PAD related to responsibility, self-determination, compassion, fairness, and preventing suicide.Reasons for not supporting psychiatric PAD were related to the scope of medicine, a perceived lack of experience, uncertainties regarding the criteria of due care and life-expectancy.Significance for the reader: Although allowed in the Netherlands, PAD in case of severe mental suffering remains a controversial topic. We need in-depth information about the actual practice of it to have an informed debate with regard to this subject.

Background: Previous studies show that teachers can feel disturbed by alarming cases brought up by students during their teaching activities. Teachers may feel uncertain about how to deal with these cases, as they might feel responsible to take action to prevent further harm. This study aims to explore how ethics teachers in medical schools would respond to a student report of unethical or unprofessional behaviour during the clinical training phase (clerkship) that is alarming and potentially harmful for patients or students themselves., Methods: This study used qualitative methods with purposive sampling. We conducted in-depth interviews with 17 teachers from 10 medical schools in Indonesia. We asked if they had heard any alarming and harmful cases from students and provided two cases as examples., Results: Four teachers shared their own cases, which they perceived as disturbing and alarming. The cases included power abuse, fraud and deception, violation of patient's rights and autonomy, and sexual harassment. Regarding teachers' responses in general, we found three main themes: (1) being assertive, (2) being careful, (3) barriers and facilitators. Most teachers were convinced of the need to take action despite numerous barriers, which they identified, leading to doubts and concerns in taking action. Our study shows that formal education in ethics might not necessarily influence how teachers respond to alarming cases, and that their responses are mainly influenced by how they perceive their role and responsibility as teachers., Conclusions: Our study suggests that teachers should carefully consider the risks and consequences before taking action upon alarming cases to prevent further harm, and that support from higher authorities might be crucial, especially in the Indonesian context. Our study also shows that taking action as a group might be appropriate in certain cases, while personal approaches might be more appropriate in other cases. Most importantly, school leaders and administrators should develop effective organisational culture and support students and teachers for their ethical responsibility commitment.

Background: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients., Methods: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically., Results: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life., Conclusion: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

Background: Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research., Methods: We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues., Results: Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients' data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives., Conclusions: Sudden cardiac arrest patients' donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants' data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.

Background: The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects., Methods: We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation., Results: Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies., Conclusion: Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

Clinical biobanks processing data of participants in the European Union (EU) fall under the scope of the General Data Protection Regulation (GDPR), which among others includes requirements for consent. These requirements are further specified by the Article 29 Working Party (WP29)-an EU advisory body currently known as the European Data Protection Board (EDPB). Unfortunately, their guidance is cause for some confusion. While the GDPR allows participants to give broad consent for research when specific research purposes are still unknown, the WP29 guidelines suggest that additional consent for specific uses should be obtained in addition to broad consent when this becomes applicable. This discrepancy elicits the question whether clinical biobanks can fail the requirement of consent if they obtain broad consent, but not a specific consent for each biomedical study. We analysed this discrepancy within the framework of contextual integrity, in order to describe the context-relative informational norms that govern information flows in clinical biobanks. However, our analysis demonstrates that there is no uniform set of norms that can be applied to all clinical biobanks. As such, neither the GDPR nor the WP29 guidance can act as a "one size fits all" approach to all clinical biobanks. Rather, differences between clinical biobanks-especially regarding the scientific aims and patient populations-make the case for context-relative norms that determine the appropriate type of consent.

Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.

Background: A transitional care pathway (TCP) could improve care for older patients in the last months of life. However, barriers exist such as unidentified palliative care needs and suboptimal collaboration between care settings. The aim of this study was to determine the feasibility of a TCP, named PalliSupport, for older patients at the end of life, prior to a stepped-wedge randomized controlled trial., Methods: A mixed-method feasibility study was conducted at one hospital with affiliated primary care. Patients were ≥ 60 years and acutely hospitalized. The intervention consisted of (1) training on early identification of the palliative phase and end of life conversations, (2) involvement of a transitional palliative care team during admission and post-discharge and (3) intensified collaboration between care settings. Outcomes were feasibility of recruitment, data collection, patient burden and protocol adherence. Experiences of 14 professionals were assessed through qualitative interviews., Results: Only 16% of anticipated participants were included which resulted in difficulty assessing other feasibility criteria. The qualitative analysis identified misunderstandings about palliative care, uncertainty about professionals' roles and difficulties in initiating end of life conversations as barriers. The training program was well received and professionals found the intensified collaboration beneficial for patient care. The patients that participated experienced low burden and data collection on primary outcomes and protocol adherence seems feasible., Discussion: This study highlights the importance of performing a feasibility study prior to embarking on effectiveness studies. Moving forward, the PalliSupport care pathway will be adjusted to incorporate a more active recruitment approach, additional training on identification and palliative care, and further improvement on data collection., Competing Interests: Competing interestsThe authors declare that there are no competing interests., (© The Author(s) 2020.)

Background: Using advance care planning (ACP) to anticipate future decisions can increase compliance with people's end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families., Objective: To explore older people's and their families' experiences with ACP in primary care., Methods: We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40-79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach., Results: We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners' (GPs') time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents' views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP., Conclusions: Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs' interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future., (© The Author(s) 2019. Published by Oxford University Press.)

Background: Palliative needs in older patients are often not timely identified. The Surprise Question (SQ) 'would I be surprised if this patient died in the next year?' is a well-researched tool that could aid in this effort. Most studies thus far involved physicians or specialist nurses, however the predictive value of the SQ when used by general nurses caring for hospitalized older patients is unknown., Objectives: To assess the predictive value of the SQ when used by general nurses and student nurses, in determining one year mortality in acutely hospitalized older patients., Design: Observational cohort study with an one year follow-up., Setting: One academic and one regional hospital in the Netherlands., Participants: Patients ≥70 years acutely hospitalized for at least 48 hours., Methods: Registered nurses and student nurses answered the SQ with 'No' (a positive SQ), 'Yes' or 'Don't know'. Data on student nurses was analysed separately. The sensitivity, specificity, negative- and positive predictive values were calculated. Furthermore, logistic regression was performed to determine the odds of death., Results: 66 registered nurses answered the SQ for 252 patients of whom 77 (30.6%) died in the year after inclusion. Respectively, 44%, 14% and 22% died within the 'No', 'Yes' and 'Don't know' group. 85% of patients who died during admission or in the first three months post-discharge were identified. The sensitivity and specificity were 76.7% and 56.6%. The positive and negative predictive values were 43.7% and 84.6 %. Compared to persons in whom the SQ was answered with yes, a no answer was associated with an 4.7 times increased odds of dying in the next 12 months (odds ratio 4.71, 95% CI 2.43-9.12, p<0.001). Additionally, 20 student nurses answered the SQ about 73 patients; sensitivity and specificity were 46.7% and 72.1%, with a positive and negative predictive value of 53.8% and 66.0% respectively., Conclusion: The usability of the Surprise Question in predicting 12-month mortality in older acutely admitted patients is limited, due to the high false positive rate. The SQ when used by non-specialized nurses identifies vulnerable patients with an increased mortality risk and can be used as a first step in assessing a patients' palliative needs, but has limited use as a single criterion for referral to specialist palliative care., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Context: Inadequate handovers between hospital and home can lead to adverse health outcomes. A group particularly at risk is patients at the end of life because of complex health problems, frequent care transitions, and involvement of many professionals., Objectives: To investigate health care providers' views and experiences with regard to the transition from hospital to primary care in palliative care., Methods: This was a descriptive qualitative study. Three focus group discussions were held with 28 nurses and two focus groups with nine physicians. Participants were recruited from primary and hospital care. The focus groups were audiorecorded, transcribed verbatim, and analyzed thematically., Results: The following themes emerged from the data: lack of identification of and communication about the last phase of life; incomplete and insufficient handover; and uncertainty about responsibilities. Professionals emphasize the importance of proper handovers and transitional processes in these vulnerable patients. The transition between hospital to primary care is hindered by a lack of identification of the palliative phase and uncertainties about patient awareness. Direct communication between professionals is needed but lacking. The handover itself is currently primarily focused on physical aspects where psychosocial aspects were also found necessary. Furthermore, uncertainties with regard to physicians' responsibility for the patient seem to further hinder professionals in the transitional process., Conclusion: Efforts should be made to enhance knowledge and skills around identification of palliative needs and communication with patients about the end of life, especially in the hospital setting., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants' death. This systematic review identifies studies examining stakeholders' perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants' death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased's previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

Rationale, Aims, and Objectives: The way in which care providers describe incapacitated elderly people is not without implications. The different ways in which they describe their patients-client, patient, or a sick human being-have consequences for their relationships with these patients and the decision-making processes. The aim of this study is to use insights from complexity thinking to understand the dynamic relations between various patient descriptions in decision-making., Method: We conducted a retrospective qualitative empirical study. Health care professionals were interviewed on how their decisions with the families of the patients were made during the course of the patients' illness. Transcriptions of interviews with physicians, residential practitioners, nurses, and head nurses were made regarding their contribution to the decision-making process. Methodologies of complexity thinkers can be helpful to not articulate the implications of individual patient descriptions, but also their interrelationships., Results: Instead of reducing their patients with the logic of the market to clients or with the logic of medicine to patients, health care providers learn in an emergent dialogic encounter to care for them as sick persons., Conclusions: Shared-decision-making favours the involvement of patients and their families in decision-making. However, due to a domination of the logic of the market and the logic of medicine, decision-making is problematic. As professional mediators, health care providers learn, however, to balance client demands, medical perspectives, and embodied dialogic care in decision-making for voiceless patients., (© 2020 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers., Competing Interests: No potential conflict of interest was reported by the author(s)., (© 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

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.

Previous studies show that medical students in clinical training face ethical problems that are not often discussed in the literature. In order to make teaching timely and relevant for them, it is important to understand what medical students perceive as ethical problems, as various factors may influence their perception, including cultural differences and working environment. The purpose of this qualitative study was to explore students' perceptions of what an ethical problem is, during their clinical training in the hospital, and compare the results from two different countries. We observed a total of eighteen ethics group discussions and interviewed fifteen medical students at two medical schools, in Indonesia and the Netherlands. Data were interpreted and analyzed using content analysis. We found that students in both settings encounter problems which are closer to their daily work and responsibilities as medical students and perceive these problems as ethical problems. Indonesian students perceived substandard care and inequity in healthcare as ethical problems, while Dutch students perceived that cases which are not matters of life and death are less worthy to discuss. Our study suggests that there might be a gap between ethical problems that are discussed in class with teachers, and problems that students actually encounter in practice . Teachers should be aware of the everyday situations in clinical training which may be perceived by students as ethically problematic and should acknowledge and discuss these ethical problems with students as part of the learning processes in ethics education., Competing Interests: Competing InterestsThe authors declare that they have no conflicts of interest., (© The Author(s) 2019.)

Background: Euthanasia and physician-assisted suicide (EAS) in psychiatry are permitted in the Netherlands under certain legal conditions. Doctors may help patients who suffer unbearably and who have no prospect of improvement from psychiatric illnesses. Although this practice is permitted, it remains controversial, and the acceptability of EAS and the conditions under which it should be allowed are still debated. As the number of psychiatric patients requesting EAS is increasing, Dutch psychiatrists are becoming more reluctant to consider EAS., Objective: This study aims for a better understanding of Dutch psychiatrists' considerations for supporting or rejecting EAS for psychiatric patients., Methods: The data for this qualitative study were collected through 17 in-depth interviews with Dutch psychiatrists. These interviews were held from January until June 2016 as a part of the Third Evaluation of the Dutch Termination of Life on Request and Assisted Suicide Act., Results: Irrespective of their own position in the debate, most Dutch psychiatrists consider reasons for and against EAS, including moral (justice and equality, professional responsibility, compassion), epistemologic (how can one ever know the suffering is without prospect), practical, and contextual (mental health care provisions) reasons., Conclusions: The variation in views on EAS in psychiatry seems to be related to a difference in views on the nature of psychiatric diseases. Some psychiatrists stress the similarity between psychiatric and somatic diseases, whereas others stress the fundamental difference. These opposing views could be bridged by a pragmatic view, such as a 2-track approach to EAS., (© Copyright 2019 Physicians Postgraduate Press, Inc.)

Background: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus., Methods: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument., Results: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument., Conclusions: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Background: Patient-reported outcomes (PROs) are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients' response shifts (changes in interpretation) and dispositions (stable characteristics)., Main Text: We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution., Conclusion: If influences of response shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used.

Background: Early start of palliative care improves the quality of life of eligible patients and their relatives. However, in hospital, patients who could benefit from palliative care are often not identified timely. The aim of this study is to assess how hospital-based nurses and physicians define the palliative phase, how they identify the palliative phase and what difficulties they face., Methods: Semi-structured interviews were held with ten nurses and 18 physicians working at seven hospitals in the Netherlands. Data was analysed using thematic analysis., Results: Nurses and physicians feel insecure about how to define the palliative phase and differentiate between an acute and extended phase. Great variation existed in what life expectancy is attributed to each phase. A variety of ways to identify the palliative phase were described: 1) Prognostication. 2) Treatment trade-off. 3) Assessment of patients' preferences and needs. 4) Interprofessional collaboration. Professionals base prognostication on their experience but also search for clinical indicators. When benefits of treatment no longer outweigh the negatives, this was considered an, albeit late, identification point. To start a conversation on a patients' palliative care needs was found to be difficult. Therefore, some respondents wait for patients to vocalize preferences themselves. Many professionals rely on interprofessional collaboration for identification, however uncertainty exist about responsibilities. Difficulties in identification occurred because of variance in definitions, unpredictability of non-oncological diseases, focus on treatment and difficulties in communication and collaboration., Conclusion: These results provide insight into the challenges and difficulties hospital-based professionals experience in timely identification of patients with palliative care needs.

Background: There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. However, it remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Our aim was to study ACP in the tertiary ALS center Amsterdam and to investigate patients' reflections on it. Subsequently we used this knowledge to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases., Methods: Non-participating observations of all appointments of patients with amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) with the treating physician, in various stages of disease, during 6 consecutive months, followed by single in-depth interviews, and an inductive analysis., Results: Twenty-eight Dutch patients participated, varying in age, gender, disease onset and severity of physical decline. ACP started directly when the diagnosis was given, by means of a general outlook on the future with progressive disability and immediate introduction to a customized multidisciplinary team. During follow-up ACP was realized by regular appointments in which monitoring of the patient's status and clear communication strategies formed the basis of tailor-made discussions on treatment options. Patients accepted this policy as careful professional guidance., Conclusions: ACP is a professional communication process throughout the whole course of progressive disease. It is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, we argue that such a well-structured approach would also enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Background: Few older people benefit from advance care planning (ACP), due to several barriers related to primary care professionals, such as insufficient knowledge, negative beliefs and a lack of time. Information on overcoming these barriers is limited. We assumed primary care professionals experienced in ACP with older patients are likely to have learned how to overcome these barriers., Objective: To investigate how Dutch primary care professionals experienced in ACP with older patients overcome these barriers., Methods: A qualitative study, based on semi-structured interviews, among a purposive sample of 14 Dutch primary care professionals experienced in ACP with older people. Transcripts were thematically analysed., Results: We interviewed eight general practitioners (GPs), three nurses and three elderly care physicians, experienced in ACP with older people. Respondents overcame their own insufficient knowledge and skills, as well as their negative attitudes and beliefs by gaining experience through practicing ACP in their daily practices, exchanging and reflecting on those experiences with peers, pursuing continuing education, teaching and participating in research. To overcome patients' and families' lack of initiative and openness to ACP, respondents prepared them for further steps in ACP. To overcome a lack of time, respondents used tools and information communication technology, delegated parts of ACP to other primary care professionals, acquired financing and systematized documentation of ACP., Conclusion: Primary care professionals can overcome barriers to ACP with older patients by practicing, reflecting on experiences and pursuing continuing education, by preparing patients and involving family and by investing in support to approach ACP more efficiently., (© The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Breaking bad news should be fine-tuned to the individual patient, contain intelligible information, include emotional support and offer a tailor-made treatment plan. To achieve this goal in motor neuron disease (MND), neurologists of the amyotrophic lateral sclerosis (ALS) centre Amsterdam deliver the message on 2 separate visits within 14 days., Aim: To evaluate how patients with MND react to and view disclosure of the diagnosis, in this 2-tiered approach., Methods: Non-participating observations and in-depth interviews with patients were conducted in 1 tertiary ALS referral centre. Qualitative analysis consisted of inductive analysis of observation reports and verbatim typed out interviews., Results: 10 2-tiered appointments were observed and 21 Dutch patients with MND interviewed. They experienced the straightforward message to be suffering from a fatal disease as devastating, yet unavoidable. The prospect of a short-term second appointment offered structure for the period immediately following the diagnosis. The time between appointments provided the opportunity for a first reorientation on their changed perspective on their life. The second appointment allowed for detailed discussions about various aspects of MND and a tailor-made treatment plan., Conclusions: The 2-tiered approach fits well with the way in which Dutch patients with MND process the disclosure of their diagnosis, gather information and handle the changed perspective on their life. It may serve as a model for other life-limiting diseases., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions. Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.

Objectives: Advance care planning (ACP) with older people needs to be approached differently than ACP with patients with a terminal illness. ACP is still used with only a minority of older patients due to a lack of knowledge regarding appropriate approaches to ACP with older people. General practitioners (GPs) may play a key role in ACP with older people. Therefore, we explored their experiences with and views on approaches to ACP with older patients in daily practice., Design, Setting and Participants: A qualitative study among a purposive sample of 19 Dutch GPs based on semistructured interviews., Results: Approaches to ACP with older patients can be divided into two categories: systematic and ad hoc. Systematic approaches consisted of discussing a fixed combination of topics with community-dwelling older patients who are frail, cognitively impaired or are aged >75 years, and with older patients living in residential care homes during group information meetings, intakes, comprehensive geriatric assessments and periodic assessments. Meetings were aimed at making agreements in anticipation of future care, at providing information and encouraging older people to take further steps in ACP. With ad hoc approaches, respondents discussed only one or two topics related to the near future. Ad hoc ACP was mainly done with deteriorating patients or when patients or family initiated ACP. Systematic and ad hoc approaches were used simultaneously or sequentially and were both used for initiating and following up on ACP. Due to a lack of time and knowledge of other occasions and topics than the ones respondents used, respondents seemed to underuse many occasions and topics., Conclusions: Awareness of appropriate systematic and ad hoc approaches for ACP, and the focus on providing information and encouraging older people to take further steps in ACP reported in this study can support GPs and improve older patients' access to ACP., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Sudden cardiac arrest (SCA) accounts for half of all cardiac deaths in Europe. In recent years, large-scale SCA registries have been set up to enable observational studies into risk factors and the effect of treatment approaches. The increasing scale and variety of data sources, coupled with the implementation of a new European data protection legal framework, causes researchers to struggle with how to handle these 'big data'. Data protection in the SCA setting is especially complex since patients become at least temporarily incapacitated, and are thus unable to provide prospective informed consent, and because the majority of patients do not survive. A narrative review employing a systematic literature search was conducted to thematically analyse ethical aspects of non-interventional emergency medicine and critical care research. Although the identified issues may apply to a wider patient population, we describe them within the context of SCA research. Potential harms were found to include: privacy breaches, genetic discrimination and issues associated with the disclosure of individual findings, study design and application of research results. Measures proposed to mitigate harms were: alternative informed consent models including deferred or waived consent and data governance approaches promoting data security, responsible sharing and public engagement. The themes identified in this study may serve as a basis for a much-needed ethical framework regarding research with data from patients with acute and critical illness such as SCA.

Background: Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide (EAS) with their physicians and the way physicians experience the practice of EAS., Aim: To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS., Methods: We conducted a secondary analysis of in-depth interviews with 28 Dutch physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN (Support and Consultation for Euthanasia in the Netherlands) as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed., Results: Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what (family of) patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched., Conclusions: The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

The concept of dignity is often used in palliative care, and, in particular, as a concept to illustrate what is important to those involved. However, philosophers, ethicists and laypersons cannot agree on what dignity actually is. In this paper, we analyse what caregivers told us about situations in which they thought dignity was at stake. From two focus group meeting of health care professionals concerning the end of life, we learned that dignity could mean different things, but that there were also shared themes. Dignity was at stake where the situation of the patient threatened the deeply felt values of the caregivers. The caregiver engages him or herself to support the dignity of their patient while simultaneously honouring their own sense of dignity. We recommend that care organisations support caregivers' engagement with dignity by creating time and space for its analysis.

Rationale, Aims, and Objectives: How to clarify the implications of complexity thinking for decision making in the intensive care unit (ICU)?, Method: Retrospective qualitative empirical research. Practitioners in an ICU were interviewed on how their decisions were made regarding a particular patient in a difficult, clinical situation. Transcriptions of these interviews were coded and retrieved in Maxqda, a software program. Assisted by complexity thinking, researchers focused on the decision-making process and the shift from analytic approaches to complex approaches., Results: Originally, practitioners took their decisions with negligible transdisciplinary interactivity, drawing on analytical knowledge. Later on, they shifted to transdisciplinary practices, paying attention to more participation in their decision-making processes within their complex environment., Conclusions: Complexity thinking demonstrates that this is a better model towards understanding transdisciplinary decision making then most analytical methodologies., (© 2017 John Wiley & Sons, Ltd.)

Background: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown., Aims: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands., Methods: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years., Results: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS., Conclusions: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Objective: To identify the types of care that patients and relatives perceive as appropriate or inappropriate in the last phase of life., Design: Questionnaire survey., Method: By means of an internet questionnaire with open questions, we asked patients and relatives about their experiences of care in the last phase of life and if they found it appropriate or inappropriate, and why. We recruited via e-mails, Twitter, Facebook, newsletters and links on homepages of patient organisations. Members of a Dutch large organisation for older people (Unie KBO) received the questionnaire on paper., Results: Forty-five patients and 547 relatives described received one or more cases. We found 429 cases of appropriate care and 309 different cases of inappropriate care. We identified five common dimensions of appropriate and inappropriate care, i.e., supportive care, treatment decisions, location of care, following the patient's wishes and communication. In the cases of appropriate care, all five dimensions were regularly mentioned; supportive care being most-frequently mentioned. In cases of inappropriate care, the dimensions treatment decisions, supportive care and communication were most often mentioned. Descriptions of appropriate care more frequently concerned patients with cancer, and descriptions of inappropriate care more frequently concerned patients with other somatic conditions or psychiatric conditions. Nurses or carers and general practitioners were more often mentioned in descriptions of appropriate care, and medical specialists more often mentioned in descriptions of inappropriate care., Conclusion: Appropriate care appears to be a wide-ranging term covering supportive care, treatment decisions, communication, following the patient's wishes, and the location where care is provided. Inappropriate treatment decisions and communication problems are the main threats to appropriate care in the last phase of life.

Background: Timely end-of-life (EOL) discussions between patients and physicians are considered essential for high-quality EOL care, but research shows that these discussions frequently do not occur or occur late. In oncology, one barrier for timely EOL discussions is poor collaboration between oncologic specialists and GPs., Objective: To explore interprofessional communication and coordination between oncologic specialists and GPs on EOL discussions., Methods: We conducted in-depth interviews with 16 GPs and 14 oncologic specialists. Interviews were recorded, transcribed verbatim and analysed using qualitative content analysis., Results: EOL discussions were primarily considered the role of the GP, but oncologists' perceptions of their own roles in discussing EOL issues varied. Interprofessional coordination on who discusses what and when was mostly absent. Interprofessional communication of EOL issues usually proceeded using the patient as intermediary. This functioned well but only if three essential conditions were met: the specialist being realistic to patients about limits of treatment, informing the GP adequately and the GP being proactive in initiating EOL issues in time. However, when these conditions were absent, timely EOL discussions did not seem to occur., Conclusions: EOL discussions are rarely a subject of direct interprofessional communication and mainly proceed through the patient as intermediary. For implementation of EOL discussions into regular care, earlier interprofessional communication and coordination is needed, particularly if barriers for such discussions occur., (© The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions., Aims: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD., Methods: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years., Results: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept., Conclusion: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Aim of this study was to explore which characteristics of nursing home residents relate to factors influencing their dignity. Questionnaires containing the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) were administered to 95 nursing home residents, residing on the general medical wards of six nursing homes in the Netherlands. Associations between residents' characteristics and each MIDAM-LTC item as well as the total number of items considerably influencing dignity were calculated. Results showed that not being optimistic, being male and/or being heavily dependent predispose nursing home residents to have their dignity undermined. Residents with these characteristics should therefore be given special attention in the provision of dignity-conserving care. Age, cultural background, religion, length of stay and socioeconomic status were very rarely related to individual MIDAM-LTC items. Knowledge of associations between characteristics and factors undermining dignity can be used to raise nursing home staff's sensitivity toward these factors., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Objective: This article examines how dementia affects personal dignity in individuals with mild to moderate dementia from their perspective., Method: In this qualitative cross-sectional study, in-depth interviews were carried out with 14 individuals, aged 50-94, with mild to moderate dementia who lived at home. Verbatim transcripts were analyzed making use of the principles of thematic analysis., Results: Although mild to moderate dementia resulted in a diminished sense of personal dignity, in general participants still felt reasonably dignified. The decline in personal dignity was generally caused by cognitive impairments resulting in diminished autonomy and changes to the individual's former identity. However, the intensity with which the decline in personal dignity was experienced depended to a large degree on the social context of the individual, with a marked difference between the private sphere of the home and the external, social environment. The study gives recommendations how others can help to sustain personal dignity in people with mild to moderate dementia., Conclusion: Given the considerable impact the social environment has on the personal dignity of people with mild to moderate dementia, it is important in caregiving not to confine attention to health-related or even any individual aspects alone, but also to take interpersonal aspects into consideration., (© The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background and Aims: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions., Methods and Procedures: We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made., Outcomes and Results: We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive., Conclusions and Implications: Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

In 2012 the Dutch Dying with Dignity Society (NVVE) founded the End-of-life Clinic, which provides euthanasia or help with assisted suicide at the request of people whose own doctor will not carry out euthanasia if the legal requirements of due care can been fulfilled. As part of an independent evaluation, we looked at the applications received by the End-of-life Clinic during its first year and at the outcomes of these applications. We wrote an extensive article on this subject which was published in JAMA Internal Medicine. One of the most important outcomes is that the End-of-life Clinic rejected a large percentage of the requests for its services, mainly as these came from people with psychiatric conditions. This means that the fears that some people have concerning the alleged End-of-life Clinic policy 'you ask, we comply', appear to be unfounded. On the other hand, the End-of-life Clinic is certainly not the solution for all those people whose requests to their own doctor fall on deaf ears.

Background: Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients' sense of dignity during the progression of illness., Aim: This longitudinal qualitative study investigates patients' experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses)., Method: Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis., Results: Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances., Conclusion: While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignity., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Importance: Right to Die NL, an organization in the Netherlands that advocates for the option of euthanasia, founded the End-of-Life Clinic in 2012 to provide euthanasia or physician-assisted suicide for patients who meet all legal requirements but whose regular physicians rejected their request. Many patients whose requests are rejected have less common situations, such as a psychiatric or psychological condition, dementia, or being tired of living., Objective: To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with granting or rejecting requests., Design: Analysis of application forms and registration files from March 1, 2012, to March 1, 2013, the clinic's first year of operation, for 645 patients who applied to the clinic with a request for euthanasia or physician-assisted suicide and whose cases were concluded during the study period., Main Outcomes and Measures: A request could be granted, rejected, or withdrawn or the patient could have died before a final decision was reached. We analyzed bivariate and multivariate associations with medical conditions, type of suffering, and sociodemographic variables., Results: Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their requests. Patients with a somatic condition (113 of 344 [32.8%]) or with cognitive decline (21 of 56 [37.5%]) had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living., Conclusions and Relevance: Physicians in the Netherlands have more reservations about less common reasons that patients request euthanasia and physician-assisted suicide, such as psychological conditions and being tired of living, than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.

Treatments and interventions used to care for children in emergencies should be based on strong evidence. Well-designed clinical trials investigating these interventions for children are therefore indispensable. Parental informed consent is a key ethical requirement for the enrollment of children in such studies. However, if time is limited because of an urgent need for intervention, there are additional ethical challenges to adequately support the informed consent process. The acute situation and associated psychological impact may compromise the ability of parents to give informed consent. Little evidence exists to guide the process of consent seeking for a child's research participation when time is limited. It is also unclear in what circumstances alternatives to prospective informed consent could be applied. This article describes possible options to manage the informed consent process in an appropriate, practical, and, we believe, ethical way when time is limited., (Copyright © 2015 by the American Academy of Pediatrics.)

Background: Euthanasia and physician-assisted suicide (EAS) in patients with psychiatric disease, dementia or patients who are tired of living (without severe morbidity) is highly controversial. Although such cases can fall under the Dutch Euthanasia Act, Dutch physicians seem reluctant to perform EAS, and it is not clear whether or not physicians reject the possibility of EAS in these cases., Aim: To determine whether physicians can conceive of granting requests for EAS in patients with cancer, another physical disease, psychiatric disease, dementia or patients who are tired of living, and to evaluate whether physician characteristics are associated with conceivability. A cross-sectional study (survey) was conducted among 2269 Dutch general practitioners, elderly care physicians and clinical specialists., Results: The response rate was 64% (n=1456). Most physicians found it conceivable that they would grant a request for EAS in a patient with cancer or another physical disease (85% and 82%). Less than half of the physicians found this conceivable in patients with psychiatric disease (34%), early-stage dementia (40%), advanced dementia (29-33%) or tired of living (27%). General practitioners were most likely to find it conceivable that they would perform EAS., Conclusions: This study shows that a minority of Dutch physicians find it conceivable that they would grant a request for EAS from a patient with psychiatric disease, dementia or a patient who is tired of living. For physicians who find EAS inconceivable in these cases, legal arguments and personal moral objections both probably play a role., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family members in decision-making. Their reports revealed that they ascribed 3 different, yet tightly interwoven roles to families: (1) informants about values and preferences of patients, (2) participants in care and care planning, and (3) sufferers themselves. Neurologists regarded decision-making as an integral part of end-of-life care rather than an isolated process, changing the meaning of what decision-making entails. All different roles of family members were important in end-of-life care and decision-making, instead of the single one of legal surrogate. Neurologists need to support family members in these various roles.

Background and Objective: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process., Methods: We conducted a prospective exploratory study in 2 Dutch University Medical Centers., Results: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision., Conclusions: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer., (Copyright © 2015 by the American Academy of Pediatrics.)

Background: Increasing medical possibilities, ageing of the population and the growing number of people with chronic illness appears to make advance care planning (ACP) inevitable. However, to what extent and how primary care providers (PCPs) provide ACP in daily practice is largely unknown., Objective: To provide an overview of the actual practice of ACP in primary care., Methods: We searched MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane Library for empirical studies that described the practice of ACP with patients in primary health care. Studies focussing on non-adult patients, and hospital or nursing home settings were excluded., Results: Ten articles met the inclusion criteria. The content of the ACP varied from discussing to refrain from cardiopulmonary resuscitation to existential issues. The prevalence ranged from 21% of PCPs having ACP discussions with the general elderly population to 69% having ACP discussions with terminal patients and 81% with patients with mild to moderate Alzheimer's disease. ACP was more common among cancer patients than among patients with non-cancer patients. Whether health care professionals or patients initiated ACP varied greatly. Advance directives and the Gold Standard Framework were perceived as helpful to guide ACP., Conclusions: ACP does not seem to have a systematic place in the care for all community-dwelling older people. Rather, it is used for specific groups, like patients with terminal disease, cancer and Alzheimer's Disease. Whether ACP might have beneficial effects for a broader primary care population, in terms of future care planning, is yet to be investigated., (© The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents., Objective: To discuss who can best protect a child's interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership., Methods: We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians., Conclusions: Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)