Lisbeth Thoresen

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.

Lived Observations Linking the Researcher’s Personal Experiences to Knowledge Development

As researchers in palliative care, we recognize how involvement with seriously ill and dying persons has an impact on us. Using one’s own senses, emotional and bodily responses in observations might open intersubjective dimensions of the research topic. The aim of the article is to highlight how phenomenological theories on intersubjectivity can be useful to develop rich and transparent data generation and analysis. We present three field note examples from observation in a hospice ward, which illuminate how researcher awareness of aspects of intersubjectivity can add valuable insights to data and analysis. Out of the examples, we elaborate on three arguments: (a) how the researcher’s lived experience of time and space during fieldwork triggers new research questions, (b) how observations as an embodied activity can bring new insights and open new layers of meaning, and (c) the value of observations in gaining insight into relational aspects in a hospice.

The significance of lifeworld and the case of hospice

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed.

“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.

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

BackgroundClose 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/designThis 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.DiscussionThis 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.

O-32 Developing, implementing and evaluating advance care planning (ACP) in norwegian nursing homes (NHS) – a mixed methods study

Background There are an increasing number of publications on ACP in NHs. However, few studies use mixed-methods design, few include all stakeholders as informants, and few describe the process of implementation and tools developed in detail. Aim The aim of this abstract is to describe and discuss the design and methods of an on-going ACP-study in Norwegian NHs. It is the final part of the larger study «End-of-life Communication in Nursing Homes – Patient Preferences and Participation». The first two parts of the larger study were a systematic literature review, and a study of practice and experiences with ACP in NHs. Methods This project has a mixed-methods design, using both quantitative (e.g. baseline registrations) and qualitative (e.g. interviews with all stakeholders, and logs from conversations) methods. 6 NHs were pair-matched, 1 of each pair randomised to systematic implementation of preparatory conversations. Results/discussion One of the strengths of this study is the inclusion of all stakeholders, also patients without competence to consent and their next of kin. The main focus of this study is the process that ACP entails, and not how many advance directives filled in. This lack of standardisation may increase the possibility to elicit and listen to what is most important to patients when it comes to end of life care. However, the documented patient preferences with regard to future treatment will be less clear. Mixed methods give a more in-depth exploration of the complexities of reality. However, generating both quantitative and qualitative data is demanding, often limiting the size of the study.

P-29 Implementation strategies and research of advance care planning in nursing homes. An integrative, systematic review of the literature

Background Nursing home (NH) patients have complex health problems, disabilities and needs for Advance Care Planning (ACP). No previous reviews have investigated the methods and strategies for implementation of ACP in NHs. Aim This systematic review investigates methods, design and outcomes and the implementation of ACP (i.e., themes and guiding questions, setting, facilitators, implementers, and promoters/barriers). Methods A search using ACP MESH-terms and key words were conducted in CINAHL, Medline, PsychINFO, Embase and Cochrane libraries. We excluded studies on home-dwelling and hospital patients; only including specific diagnoses and/or chart-based interventions without conversations. Results 16 papers were included. There were large variations in definitions and content of ACP, study design, implementation strategies, and outcomes. Often the ACP or implementation processes were not described. Few studies included patients lacking decision-making capacity – who are numerous in most nursing homes. 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. Discussion Variation in ACP definitions may be related to cultural and legal differences. This variation, together with sparse information about procedures, makes collation and comparison of research results challenging. Conclusion ACP intervention studies in NH are few and heterogenous. Key information is sometimes lacking. Thus, comparing results and replicating studies is challenging. Essential implementation considerations relate to the involvement and education of nurses, physicians and leaders.