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

Abstract

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.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0869-1) contains supplementary material, which is available to authorized users.

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

“…In order to provide the health services with a knowledge-based approach to ACP, to give patients a better opportunity to express their values and preferences, and to give health care personnel competence and routines in doing ACP, we planned an ACP implementation study that introduced an educational program for nursing homes 20. We had a “whole-ward” or “whole-system” approach,21,22 which meant: Regular staff at the ward performed ACP since we wanted the staff involved in ACP as much as possible and considered this more sustainable than external facilitators,Managers should endorse the project and participate in the local project team,We encouraged participation also of patients with cognitive impairment,We encouraged the next of kin to participate together with the patient or alone when the patient could not participate,Using a sustainable train-the-trainer model with limited out-of-site training time and a freely available ACP-guide (see below),ACP is viewed as a process consisting of more than one conversation and that ACP may be supplemented by more informal conversations or “windows of opportunities” – ie, spontaneous conversations on matters of importance to the patient – for example, existential aspects or end-of-life issues typically discussed between health care personnel and patient during daily activities and initiated by the patient,23 andACP should be voluntary.…”

“…Furthermore, together with the project teams, we developed an ACP guide28 and a documentation template. For more information about implementation support, the background of the study, and design, we refer to our protocol article 20…”

Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation

“…knowledge of ACP, satisfaction with care, hospitalisation admission rates, number of ADs) [3]. None evaluated the effects of ACP on the level of nursing home staff, while almost all current ACP interventions in nursing homes are educational programmes targeting the knowledge, attitudes or confidence in ACP of professionals [3,37,39]. Given that one of the main and most consistently reported factors potentially hindering the completion of ACP is in fact insufficient knowledge of and self-efficacy in ACP among healthcare professionals [8,40], studying whether and how these educational ACP interventions affect staff outcomes is highly necessary.…”

Parenteral ernæring i livets sluttfase

“…Informantene beskrev at det kom brått på pasientene og de pårørende å skulle avslutte den parenterale ernaeringen, fordi de hadde manglende kunnskap. Det ble sjelden opprettet en plan før oppstart av parenteral ernaering, slik Saevareid og medarbeidere foreslår på generelt grunnlag tidlig i livets sluttfase (22). Liknende funn er også beskrevet i tidligere studier, som avdekker at pasienter og pårørende får lite informasjon som kan lede dem til å ta beslutninger (20,23).…”