Caring for children with cancer involves complex ethical challenges. Ethics Case Reflection (ECR) rounds can be offered to support teams to reflect on challenges and what should be done in patient care. A training course, for facilitators of ECR rounds, has been offered to healthcare professionals (HCPs) in childhood cancer care by a Nordic working group on ethics. During/after the course, the trainees implemented and facilitated ECR rounds in their clinical setting. The aim was to explore the trainees’ experiences of (...) implementing ECR rounds in childhood cancer care. HCPs, who participated as trainees in the course, participated in 3 focus group interviews (n = 22) and 27 individual interviews (n = 17). Interview data were analysed concurrently with data collection following classic grounded theory. Positioning ethics is the core category in this study, used to resolve the main concern of doing ethics in a context where direct patient care is prioritized. Being able to take time for ethics reflections, not perceived as the key priority, was considered a luxury in the clinical setting. Strategies for positioning ethics include allying, promoting ethics reflection, scheduling ethics reflection, and identifying ethical dilemmas. These strategies can be more or less successful and vary in intensity. The prioritisation of direct patient care is not surprising, but polarisation between care and ethics needs to be questioned and ethics reflection need to be integrated in standard care. Ethical competence seems to be central in doing ethics and more knowledge on the promotion of ethical competence in practice and education is needed. (shrink)

BackgroundIn paediatric oncology, healthcare professionals face moral challenges. Clinical ethics support services, such as moral case deliberation, aim to assist them in dealing with these challenges. Yet, healthcare professionals can have different expectations and goals related to clinical ethics support services.MethodsIn this study, the perceptions held by healthcare professionals regarding the importance of possible outcomes of MCDs, prior to implementation of MCDs, were investigated. A multisite, cross-sectional, quantitative study was performed at all six Paediatric Oncology Centres in Sweden. Healthcare professionals (...) answered the Euro-MCD instrument with 26 potential MCD outcomes using a scale from Not important to Very important. Descriptive and comparative statistical analyses were carried out.ResultsAll outcomes were rated high, i.e., between 3.12 and 3.78. More open communication, developing skills to analyse ethically difficult situations, better mutual understanding, and deciding on concrete actions were rated as most important. Understanding of ethical theories and critical examination of policies were rated less important. Most often nursing assistants rated higher and physicians lower than the other professions did. Women and participants without previous experience of MCDs perceived outcomes as more important. There were differences between centres as one centre had significantly higher, and one centre had significantly lower ratings compared to the others.ConclusionIt is clear that healthcare professionals want MCDs to improve teamwork and skills in order to analyse and manage ethically difficult situations. When comparing to previous research about important MCD outcomes, there were similarities in what healthcare professionals consider to be important when handling moral challenges regardless of country and potential differences in healthcare settings and systems, such as paediatric vs. adult care. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less standard. While (...) PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people with (...) intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support inspired by Habermas’ theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the aim of this (...) study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved. (shrink)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how a case (...) was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA. (shrink)

Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The (...) aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers’ experiences and perceived importance of outcomes of Moral Case Deliberation. (shrink)

Background: Ethics rounds are one way to support healthcare personnel in handling ethically difficult situations. A previous study in the present project showed that ethics rounds did not result in significant changes in perceptions of how ethical issues were handled, that is, in the ethical climate. However, there was anecdotal evidence that the ethics rounds were viewed as a positive experience and that they stimulated ethical reflection. Aim: The aim of this study was to gain a deeper understanding of how (...) the ethics rounds were experienced and why the intervention in the form of ethics rounds did not succeed in improving the ethical climate for the staff. Research design: An exploratory and descriptive design with a qualitative approach was adopted, using individual interviews. Participants and research context: A total of 11 healthcare personnel, working in two different psychiatry outpatient clinics and with experience of participating in ethics rounds, were interviewed. Ethical considerations: The study was based on informed consent and was approved by one of the Swedish Regional Ethical Review Boards. Findings: The participants were generally positive about the ethics rounds. They had experienced changes by participating in the ethics rounds in the form of being able to see things from different perspectives as well as by gaining insight into ethical issues. However, these changes had not affected daily work. Discussion: A crucial question is whether or not increased reflection ability among the participants is a good enough outcome of ethics rounds and whether this result could have been measured in patient-related outcomes. Ethics rounds might foster cooperation among the staff and this, in turn, could influence patient care. Conclusion: By listening to others during ethics rounds, a person can learn to see things from a new angle. Participation in ethics rounds can also lead to better insight concerning ethical issues. (shrink)

The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based (inductive) rather than principle-based (deductive) method. By discusing the (...) advantages and disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues. (shrink)

Health care professionals often face moral dilemmas. Not dealing constructively with moral dilemmas can cause moral distress and can negatively affect the quality of care. Little research has been documented with methodologies meant to support professionals in care for the homeless in dealing with their dilemmas. Moral case deliberation is a method for systematic reflection on moral dilemmas and is increasingly being used as ethics support for professionals in various health-care domains. This study deals with the question: What is the (...) contribution of MCD in helping professionals in an institution for care for the homeless to deal with their moral dilemmas? A mixed-methods responsive evaluation design was used to answer the research question. Five teams of professionals from a Dutch care institution for the homeless participated in MCD three times. Professionals in care for the homeless value MCD positively. They report that MCD helped them to identify the moral dilemma/question, and that they learned from other people’s perspectives while reflecting and deliberating on the values at stake in the dilemma or moral question. They became aware of the moral dimension of moral dilemmas, of related norms and values, of other perspectives, and learned to formulate a moral standpoint. Some experienced the influence of MCD in the way they dealt with moral dilemmas in daily practice. Half of the professionals expect MCD will influence the way they deal with moral dilemmas in the future. Most of them were in favour of further implementation of MCD in their organization. (shrink)

A systematic literature review on evaluation of clinical ethics support services in mental healthcare is presented and discussed. The focus was on (a) forms of clinical ethics support services, (b) evaluation of clinical ethics support services, (c) contexts and participants and (d) results. Five studies were included. The ethics support activities described were moral case deliberations and ethics rounds. Different qualitative and quantitative research methods were utilized. The results show that (a) participants felt that they gained an increased insight into (...) moral issues through systematic reflection; (b) there was improved cooperation among multidisciplinary team members; (c) it was uncertain whether clinical ethics support services led to better patient care; (d) the issue of patient and client participation is complex; and (e) the implementation process is challenging. Clinical ethics support services have mainly been studied through the experiences of the participating facilitators and healthcare professionals. Hence, there is limited knowledge of whether and how various types of clinical ethics support services influence the quality of care and how patients and relatives may evaluate clinical ethics support services. Based on the six excluded ‘grey zone articles’, in which there was an implicit focus on ethics reflection, other ways of working with ethical reflection in practice are discussed. Implementing and evaluating clinical ethics support services as approaches to clinical ethics support that are more integrated into the development of good practice are in focus. In order to meet some of the shortcomings of the field of clinical ethics support services, a research project that aims to strengthen ethics support in the mental health services, including patients’ and caregivers’ views on ethical challenges, is presented. (shrink)

There is an increasing body of research on what kind of ethical challenges health care professionals experience regarding the quality of care. In the Netherlands the Dutch Health Care Inspectorate is responsible for monitoring and regulating the quality of health care. No research exists on what kind of ethical challenges inspectors experience during the regulation process itself. In a pilot study we used moral case deliberation as method in order to reflect upon inspectors’ ethical challenges. The objective of this paper (...) is to give an overview of the ethical challenges which health care inspectors encounter in their daily work. A thematic qualitative analysis was performed on cases that were collected from health care inspectors in a moral case deliberation pilot study. Eight themes were identified in health care regulation. These can be divided in two categories: work content and internal collaboration. The work of the health care inspectorate is morally loaded and our recommendation is that some form of ethics support is provided for health care inspectors. (shrink)

In healthcare practice, care providers are confronted with tragic situations, in which they are expected to make choices and decisions that can have far-reaching consequences. This article investigates the role of moral case deliberation in dealing with tragic situations. It focuses on experiences of care givers involved in the treatment of a pregnant woman with a brain tumour, and their evaluation of a series of MCD meetings in which the dilemmas around care were discussed. The study was qualitative, focusing on (...) the views and experiences of the participants. A case study design is used by conducting semi-structured interviews with health care professionals who both played a role in the treatment of the patient and attended the MCD. The results show that MCD helps people to deal with tragic situations. An important element of MCD in this respect is making explicit the dilemma and the damage, demonstrating that there is no simple solution. MCD prompts participants to formulate and share personal experiences with one another and thus helps to create a shared perception of the situation as tragic. The article concludes that MCD contributes to the sharing of tragic experiences, and fosters mutual interaction during a tragedy. Its value could be increased through explicit reflection on the aspect of contingency that characterises tragedy. (shrink)

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe (...) the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (shrink)

Background On a daily basis, healthcare professionals deal with various ethical issues and it can be difficult to determine how to act best. Clinical ethics support (CES) has been developed to provide support for healthcare professionals dealing with complex ethical issues. A long-term perspective of participating in inter-professional dialogue and reflective-based CES sessions is seemingly sparse in the literature. Research aim The aim was to describe experiences of impact of Inter-professional Ethics Communication in groups (IEC) based on Habermas’ theory of (...) communicative actions, after 6 months from the perspective of an inter-professional team. Research design A qualitative inductive approach was chosen, and individual interviews ( n = 13) were conducted. Interview data were analysed using qualitative content analysis. Participants The participants, 10 females and two males, represented assistant nurses, registered nurses, physicians, occupational therapists, physiotherapists, welfare officers and psychologists. Each had attended at least four IEC sessions. Ethical considerations The study was approved by the Regional Ethical Review Board in Umeå, Sweden, and it has been undertaken in accordance with the Helsinki Declaration. Findings Overall, the descriptions expressed a perceived achievement of a deepened and integrated ethical awareness that increased the participants’ awareness of ethically difficult situations as well as their own ethical thinking, actions and approaches in daily work. Perspectives were shared and the team become more welded. They carried the memories of the reflections within them, which was perceived as supportive when encountered new ethically situations. Discussion Putting words to unarticulated thoughts may stimulate repeated reflections, leading to new insights and alternative thoughts. Conclusion The outcome of IEC sessions 6 months following the last session can be described as an incorporated knowledge that enables actions in ethically difficult situations based on an ethical awareness both at a ‘We-level’ and an ‘I-level’. (shrink)

Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling (...) of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient’s loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

Health care professionals often face moral dilemmas. Not dealing constructively with moral dilemmas can cause moral distress and can negatively affect the quality of care. Little research has been documented with methodologies meant to support professionals in care for the homeless in dealing with their dilemmas. Moral case deliberation is a method for systematic reflection on moral dilemmas and is increasingly being used as ethics support for professionals in various health-care domains. This study deals with the question: What is the (...) contribution of MCD in helping professionals in an institution for care for the homeless to deal with their moral dilemmas? A mixed-methods responsive evaluation design was used to answer the research question. Five teams of professionals from a Dutch care institution for the homeless participated in MCD three times. Professionals in care for the homeless value MCD positively. They report that MCD helped them to identify the moral dilemma/question, and that they learned from other people’s perspectives while reflecting and deliberating on the values at stake in the dilemma or moral question. They became aware of the moral dimension of moral dilemmas, of related norms and values, of other perspectives, and learned to formulate a moral standpoint. Some experienced the influence of MCD in the way they dealt with moral dilemmas in daily practice. Half of the professionals expect MCD will influence the way they deal with moral dilemmas in the future. Most of them were in favour of further implementation of MCD in their organization. (shrink)