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Out-of-hospital cardiac arrest is a major health problem, and immediate treatment is essential for improving the chances of survival. The development of technological solutions to detect out-of-hospital cardiac arrest and alert emergency responders is gaining momentum; multiple research consortia are currently developing wearable technology for this purpose. For the responsible design and implementation of this technology, it is necessary to attend to the ethical implications. This review identifies relevant ethical aspects of wearable-based out-of-hospital cardiac arrest detection according to four key principles of medical ethics. First, aspects related to beneficence concern the effectiveness of the technology. Second, non-maleficence requires preventing psychological distress associated with wearing the device and raises questions about the desirability of screening. Third, grounded in autonomy are empowerment, the potential reidentification from continuously collected data, issues of data access, bystander privacy, and informed consent. Finally, justice concerns include the risks of algorithmic bias and unequal technology access. Based on this overview and relevant legislation, we formulate design recommendations. We suggest that key elements are device accuracy and reliability, dynamic consent, purpose limitation, and personalization. Further empirical research is needed into the perspectives of stakeholders, including people at risk of out-of-hospital cardiac arrest and their next-of-kin, to achieve a successful and ethically balanced integration of this technology in society. [ABSTRACT FROM AUTHOR]

The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake. [ABSTRACT FROM AUTHOR]

Aim: To investigate the main factors which facilitate or hinder end‐of‐life decision‐making (EoLDM) in neonates and children. Methods: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end‐of‐life decisions mainly concern decisions to withhold or withdraw life‐sustaining treatment. Results: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician‐related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. Conclusions: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children. [ABSTRACT FROM AUTHOR]

Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL. Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way. The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation. [ABSTRACT FROM AUTHOR]

Background: Moral distress is associated with job dissatisfaction, turnover and early retirement. Because of these negative consequences moral distress should be reduced. Little research has been done on what job factors contribute to whether or not a situation causes moral distress. Objective: To identify individual and job characteristics associated with moral distress in nursing staff. Design: This is a cross sectional correlational study. Nursing staff members completed two survey questionnaires with a time-interval of 3 months. In the first survey questions were asked about job characteristics and job satisfaction. Three months afterwards the respondents answered questions on moral distress. Participants: 365 nursing staff members employed in nursing homes, homes for the elderly, home care and acute care hospitals completed both questionnaires. Results: High moral distress levels were related to lower job satisfaction. Moral distress is higher when nurses perceive less time available to give care to patients. If satisfaction with the consultation possibilities within the team is low and when an instrumental leadership style exists, nursing staff members are also more likely to experience moral distress. Nursing staff members working 30-40 h per week experience less moral distress than colleagues working fewer hours per week. Multivariate analyses showed no relations with other individual characteristics measured. Conclusion: Job characteristics that contribute to moral distress should be an issue for managers because it is related to job satisfaction. Interventions to reduce moral distress should target at organisational issues. The way a team is supported can raise or decrease moral distress levels. [ABSTRACT FROM AUTHOR]

Summary: Background: The high costs of new disease-modifying, but non-curative, treatments in advanced cancer are increasingly regarded as problematic. Little is known about oncologists’ beliefs regarding their ethical obligations for cost considerations about these types of treatments. Participants and Methods: This study used in-depth interviews to explore how physicians in The Netherlands view their role regarding the cost of potentially beneficial but expensive drugs, especially for new disease-modifying treatments in advanced cancer. Thirty-six physicians, 19 physicians caring for patients with advanced cancer and 17 physicians participating in four national oncology guideline committees, were interviewed. Results: Physicians identified cost considerations on three levels: individual patient care, hospital policies and national guideline development. Generally, physicians were reluctant to consider costs in individual patient care, believing this compromised their ethical obligations. They did consider costs relevant at the level of hospital policies regarding coverage for drugs. They were divided regarding the role of cost considerations in national practice guideline development. Conclusions: The distinctive levels of decision-making were understood to be morally relevant as physicians separated their role as direct care provider from that of taking part in decisions about coverage. Because of the fundamental tension between the physician obligation to act in the best interest of the individual patient, the vulnerability of having a life-threatening illness and the inevitability of sharing resources in modern health care, cost considerations will always be problematic for physicians. The roles physicians play at different levels, especially at the levels of hospital policies and national practice guidelines, should further be developed and explicated. [Copyright &y& Elsevier]