Advance care planning in Norwegian nursing homes - limited awareness of the residents' preferences and values? A qualitative study.

BACKGROUND: 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals' views on ACP is vital. The objective of this study is to explore nurses and physicians' aims and experiences with carrying out ACP in nursing homes. METHODS: Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. RESULTS: The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. CONCLUSION: Our study add insights into how ACP is practiced in nursing homes and the professionals' agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents' needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.

Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers.

Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

Improved patient participation through advance care planning in nursing homes-A cluster randomized clinical trial.

OBJECTIVE: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment. 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 using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate. 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 AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT 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 through advance care planning in nursing homes using a whole-ward approach. PRACTICE IMPLICATIONS: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning. TRIAL REGISTRATION: ISRCTN registry (ID ISRCTN69571462) - retrospectively registered.

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.

Implementing advance care planning in nursing homes - study protocol of a cluster-randomized clinical trial.

BACKGROUND: Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies. METHODS/DESIGN: This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group. DISCUSSION: This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

The significance of ethics reflection groups in mental health care: a focus group study among health care professionals.

BACKGROUND: Professionals 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. METHODS: In 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. RESULTS: Most 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. CONCLUSION: This 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.

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.

Advance care planning in Norwegian nursing homes. / 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.

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

BACKGROUND: As 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. METHODS: Participant 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. RESULTS: We 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. CONCLUSIONS: An 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.

The Norwegian national project for ethics support in community health and care services.

BACKGROUND: Internationally, clinical ethics support has yet to be implemented systematically in community health and care services. A large-scale Norwegian project (2007-2015) attempted to increase ethical competence in community services through facilitating the implementation of ethics support activities in 241 Norwegian municipalities. The article describes the ethics project and the ethics activities that ensued. METHODS: The article first gives an account of the Norwegian ethics project. Then the results of two online questionnaires are reported, characterizing the scope, activities and organization of the ethics activities in the Norwegian municipalities and the ethical topics addressed. RESULTS: One hundred and thirty-seven municipal contact persons answered the first survey (55 % response rate), whereas 217 ethics facilitators from 48 municipalities responded to the second (33 % response rate). The Norwegian ethics project is vast in scope, yet has focused on some institutions and professions (e.g., nursing homes, home-based care; nurses, nurses' aides, unskilled workers) whilst seldom reaching others (e.g., child and adolescent health care; physicians). Patients and next of kin were very seldom involved. Through the ethics project employees discussed many important ethical challenges, in particular related to patient autonomy, competence to consent, and cooperation with next of kin. The "ethics reflection group" was the most common venue for ethics deliberation. CONCLUSIONS: The Norwegian project is the first of its kind and scope, and other countries may learn from the Norwegian experiences. Professionals have discussed central ethical dilemmas, the handling of which arguably makes a difference for patients/users and service quality. The study indicates that large (national) scale implementation of CES structures for the municipal health and care services is complex, yet feasible.

Coercion in nursing homes: Perspectives of patients and relatives.

BACKGROUND: Studies have demonstrated the extensive use of coercion in Norwegian nursing homes, which represents ethical, professional as well as legal challenges to the staff. We have, however, limited knowledge of the experiences and views of nursing home patients and their relatives. OBJECTIVES: The aim of this study is to explore the perspectives of nursing home patients and next of kin on the use of coercion; are there situations where the use of coercion can be defended, and if so, under which circumstances? METHODS: The data are based on individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 60 relatives. ETHICAL CONSIDERATIONS: Participation was based on written informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. RESULTS: More than half of the patients and the majority of the relatives accepted the use of coercion, trusting the staff to act in the patient's best interest. However, the acceptance of coercion is strongly related to the patients' lack of understanding, to prevent health risks and to preserve the patient's dignity. CONCLUSION: The majority of nursing home patients and relatives accepted the use of coercion in specific situations, while at the same time they emphasised the need to try alternative strategies first. There is still a need for good qualitative research on the use of coercion in nursing homes, especially with a closer focus on the perspectives and experiences of nursing home patients.

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

BACKGROUND: Involving 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. METHODS: The 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. RESULTS: Few 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. CONCLUSION: Nursing 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.

BACKGROUND: Systematic 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. METHODS: A 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. RESULTS: We 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. CONCLUSIONS: Ethics 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.

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.