BackgroundInvolving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients’ and next-of-kin’s experiences with- and perspectives on end-of-life care conversations, information and shared decision-making.MethodsThe study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a “bricolage” approach”. Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics.ResultsFew patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients’ opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient’s health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives’ opinions of the patient’s preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions.ConclusionNursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in opinions and the timing for such conversations. As the popularity of advance care planning increases in many Western countries, discussions of patients’ and relatives’ perspectives will be of great interest to a broader audience.

Ethics support in primary health care has been sparser than in hospitals, the need for ethics support is probably no less. We have, however, limited knowledge about how to develop ethics support that responds to primary health-care workers' needs. In this article, we present a survey with a mixture of closed- and open-ended questions concerning: How frequent and how distressed various types of ethical challenges make the primary health-care workers feel, how important they think it is to deal with these challenges better and what kind of ethics support they want. Five primary health-care institutions participated. Ethical challenges seem to be prominent and common. Most frequently, the participants experienced ethical challenges related to scarce resources and lack of knowledge and skills. Furthermore, ethical challenges related to communication and decision making were common. The participants welcomed ethics support responding to their challenges and being integrated in their daily practices.

BackgroundNursing home (NH) patients have complex health problems, disabilities and needs for Advance Care Planning (ACP). The implementation of ACP in NHs is a neglected research topic, yet it may optimize the intervention efficacy, or provide explanations for low efficacy. This scoping review investigates methods, design and outcomes and the implementation of ACP (i.e., themes and guiding questions, setting, facilitators, implementers, and promoters/barriers).MethodsA systematic search using ACP MESH terms and keywords was conducted in CINAHL, Medline, PsychINFO, Embase and Cochrane libraries. We excluded studies on home-dwelling and hospital patients, including only specific diagnoses and/or chart-based interventions without conversations.ResultsSixteen papers were included. There were large variations in definitions and content of ACP, study design, implementation strategies and outcomes. Often, the ACP intervention or implementation processes were not described in detail. Few studies included patients lacking decision-making capacity, despite the fact that this group is significantly present in most NHs. The chief ACP implementation strategy was education of staff. Among others, ACP improved documentation of and adherence to preferences. Important implementation barriers were non-attending NH physicians, legal challenges and reluctance to participate among personnel and relatives.ConclusionACP intervention studies in NHs are few and heterogeneous. Variation in ACP definitions may be related to cultural and legal differences. This variation, along with sparse information about procedures, makes it difficult to collate and compare research results. Essential implementation considerations relate to the involvement and education of nurses, physicians and leaders.

BackgroundSystematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health (including nursing homes and residency), - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.MethodsA mixed-methods design with qualitative focus group interviews, observations and written reports were used to evaluate. The study was conducted at two nursing homes, two home care districts and a residence for people with learning disabilities. Participants were employees, facilitators and service managers. The study was guided by ethical standard principles and was approved by the Norwegian Social Science Data Services.ResultsWe found support for ethics reflection as a valuable measure to strengthen clinical practice. New and improved solutions, more cooperation between employees, and improved collaboration with patients and their families are some of the results. No negative experiences were found. Instead, the ethics reflection based on experiences and challenges in the workplace, was described as a win-win situation. The evaluation also revealed what is needed to succeed and useful tips for further development of ethics support in community health services.ConclusionsEthics reflection groups focusing on ethical challenges from the participants’ daily work were found to be significant for improved practice, collegial support and cooperation, personal and professional development among staff, facilitators and managers. Resources needed to succeed were managerial support, and anchoring ethics sessions in the routine of daily work.

BackgroundProfessionals within the mental health services face many ethical dilemmas and challenging situations regarding the use of coercion. The purpose of this study was to evaluate the significance of participating in systematic ethics reflection groups focusing on ethical challenges related to coercion.MethodsIn 2013 and 2014, 20 focus group interviews with 127 participants were conducted. The interviews were tape recorded and transcribed verbatim. The analysis is inspired by the concept of ‘bricolage’ which means our approach was inductive.ResultsMost participants report positive experiences with participating in ethics reflection groups: A systematic and well-structured approach to discuss ethical challenges, increased consciousness of formal and informal coercion, a possibility to challenge problematic concepts, attitudes and practices, improved professional competence and confidence, greater trust within the team, more constructive disagreement and room for internal critique, less judgmental reactions and more reasoned approaches, and identification of potential for improvement and alternative courses of action. On several wards, the participation of psychiatrists and psychologists in the reflection groups was missing. The impact of the perceived lack of safety in reflection groups should not be underestimated. Sometimes the method for ethics reflection was utilised in a rigid way. Direct involvement of patients and family was missing.ConclusionThis focus group study indicates the potential of ethics reflection groups to create a moral space in the workplace that promotes critical, reflective and collaborative moral deliberations. Future research, with other designs and methodologies, is needed to further investigate the impact of ethics reflection groups on improving health care practices.

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences.

It is both possible and potentially important to implement clinical ethics support activities in community health and care services systematically on a large scale. Future ethics initiatives in the community sector should be designed in light of documented promoting and inhibiting factors.

To investigate how implementing advance care planning with a whole-ward approach impact patient participation in nursing homes. Methods This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support fostering the advance care planning with patient and next of kin. Results In intervention group wards the patients participated more often in end-of-life treatment conversations (p<0.001). Moreover, the patient's preferences, hopes or worries (p=0,006) were more often documented, and concordance between treatment provided and patient preferences (p=0,037) and next of kin participation in advance care planning with the patient (p=0,056) increased. Conclusion Improved patient participation-also when cognitively impaired-is achievable when regular staff perform advance care planning in nursing homes. Next of kin can have a key role. Practice implications Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be more sustainable than other approaches. Trial registration ISRCTN registry (ID ISRCTN69571462)-retrospectively registered.