Lillian Lillemoen

Ethical challenges and how to develop ethics support in primary health care

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.

A review of the implementation and research strategies of advance care planning in nursing homes.

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.

End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives

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 reflection groups in community health services: an evaluation study

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.

Ethics in Municipal Health Services: Working Systematically with, and Developing Competence in Ethics

The Norwegian Parliament has decided to give priority to ethics in municipal health services. This priority is supposed to raise competence in ethics within municipal health services. As part of the national project, the participating municipalities were encouraged to develop and carry out local projects. In this article, we present a local ethics project in one of the participating municipalities in central eastern Norway. The local project for raising competence in ethics was carried out in cooperation with researchers at the Centre for Medical Ethics (CME) at the University of Oslo. Most people agree that ethics are important in health services. However, there are many ways to increase competence in ethics and to stimulate ethical reflection. In this article we present a broad overview of this local ethics project, but special focus will be put on presenting the actions that have been used for increasing the level of ethical competence and stimulating ethical reflection among the participants. We describe our evaluation of the project and the research we carried out. Explanations will be given for the thought process behind the decisions that were made.

“I just think that we should be informed” a qualitative study of family involvement in advance care planning in nursing homes

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.

Ethics support in community care makes a difference for practice.

Background: Through the Norwegian ethics project, ethics activities have been implemented in the health and care sector in more than 200 municipalities. Objectives: To study outcomes of the ethics activities and examine which factors promote and inhibit significance and sustainability of the activities. Research design: Two online questionnaires about the municipal ethics activities. Participants and research context: A total of 137 municipal contact persons for the ethics project answered the first survey (55% response rate), whereas 217 ethics facilitators responded to the second survey (33% response rate). Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services. Findings: Around half of the respondents found the ethics project to have been highly significant for daily professional practice. Outcomes include better handling of ethical challenges, better employee cooperation, better service quality, and better relations to patients and next of kin. Factors associated with sustainability and/or significance of the activities were sufficient support from stakeholders, sufficient available time, and ethics facilitators having sufficient knowledge and skills in ethics and access to supervision. Discussion: This study shows that ethics initiatives can be both sustainable and significant for practice. There is a need to create regional or national structures for follow-up and develop more comprehensive ethics training for ethics facilitators. Conclusion: 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.

Forberedende samtaler i norske sykehjem

BACKGROUND Nursing home patients are often frail and have a number of chronic conditions. Increased risk of critical events, hospitalisations and death indicates the need for dialogue with patients and their next of kin about the future, how to agree on sound decisions and what should happen if the patient’s health condition deteriorates. Previous studies have shown that only a minority of nursing homes practise this type of advance care planning. MATERIAL AND METHOD In early summer 2014, a questionnaire was sent to all Norwegian nursing homes, containing questions about the prevalence and content of advance care planning. RESULTS A total of 57 % (486 nursing homes) responded to the survey. Approximately two-thirds reported that they «always’ or «usually’ undertook advance care planning and around one-third of them had written guidelines. The conversations primarily took place when the patient’s health condition deteriorated, when the patient entered the last phase of life, or in connection with the admission interview. Hospitalisation, pain relief and cardiopulmonary resuscitation (CPR) were the most frequent topics. Next of kin and the nursing home doctor participated most often in the interviews, while the patients participated more seldom. INTERPRETATION There were large variations between the nursing homes with regard to advance care planning. This may partly be explained by the lack of national guidelines, and partly by the fact that this is a relatively recent discussion in Norway. The infrequent participation by patients in the conversations is probably associated with the fact that among them a high proportion are cognitively impaired, the availability of medical resources is low, and a culture of patient participation is insufficiently developed.

Sykepleieren som moralsk aktør: Hvilke etiske dilemmaer beskriver sykepleiere at de står overfor i relasjon til den aldersdemente pasient? Hvordan vurderer og handler de for at praksis skal være moralsk?

The aim of this study was to explore the ethical knowledge nurses possessed and practiced in their interaction with demented patients. A qualitative, descriptive design, with a phenomenological — hermeneutical approach was used. The study was based on moral dilemmas in daily life with six nursing situations presented through narratives. The findings were discussed from an ethical perspective and in particular Kari Martinsens philosophy of moral practice. Analysis of data followed Kvales method of qualitative analysis. The findings indicated that nurses emphasised values as respect and the worth of the patient as a human being. The Golden Rule and acting in the patients best interest seemed to be a guide for nursing practice. Autonomy were estimated as important, but often a problematic approach. Interpretations of the behavioural cues of the demented patients, and the caregivers deep knowledge of the patients personal life story were emphasised.

How to succeed with ethics reflection groups in community healthcare? Professionals’ perceptions

Background: Healthcare personnel in the municipal healthcare systems experience many ethical challenges in their everyday work. In Norway, 243 municipalities participated in a national ethics project, aimed to increase ethical competence in municipal healthcare services. In this study, we wanted to map out what participants in ethics reflection groups experienced as promoters or as barriers to successful reflection. Objectives: To examine what the staff experience as promoters or as barriers to successful ethics reflection. Research design: The study has a qualitative design, where 56 participants in municipal healthcare participated in 10 different focus-group interviews. Ethical considerations: The data collection was based on the participants’ informed consent and approved by the Data Protection Official of the Norwegian Centre for Research Data. Results: The informants had different experiences from ethics reflection group. Nevertheless, we found that there were several factors that were consistently mentioned: competence, facilitator’s role, ethics reflection groups organizing, and organizational support were all experienced as promoters and as a significant effect on ethics reflection groups. The absence of such factors would constitute important barriers to successful ethics reflection. Discussion: The results are coincident with other studies, and indicate some conditions that may increase the possibility to succeed with ethics reflection groups. A systematic approach seems to be important, the systematics of the actual reflections, but also in the organization of ethics reflection group at the workplace. Community healthcare is characterized by organizational instabilities as many vacancies, high workloads, and lack of predictability. This can be a hinder for ethics reflection group. Conclusion: Both internal and external factors seem to influence the organization of ethics reflection group. The municipalities’ instabilities challenging this work, and perceived as a clear inhibitor for the development. The participants experienced that the facilitator is the most important success factor for establishing, carrying out, and to succeed with ethics reflection groups.