End of Life Communication in Nursing Homes. Patient Preferences and Participation

This research project about preparatory conversations/advance care planning (ACP) in nursing homes started September 1st of 2013 and the final report was submitted 31st of Jan. 2019. The project consists of 3 subprojects. 1) A systematic literature review about these types of conversations (in collaboration with another project financed by the Reseach Council of Norway: the KOSMOS-Project, University of Bergen. They will also carry out a large intervention study in nursing homes where ACP is used.) This article has been published. 2.1) A survey sent to all Norwegian nursing homes regarding routines and practice of preparatory conversations. Data collection and analysis is complete, and an article has published. 2.2) A qualitative study (interviews and observation) of how preparatory conversations are carried out in a few select nursing homes. Data collection is complete, analysis is completed, and two papers have presenting the most important findings have been published. Yet another paper is likely to be published from this subproject. 3) The intervention part of the project is completed. Eight nursing homes were included in this mixed methods study study, and using so-called cluster randomization, four of these were selected for the intervention (training, implementation, supervision, before and after evaluation). We developed teaching material (written and film), information letters, and a documentation template. The implementation and intervention period is now finished, and the data for the evaluation has been gathered and analyzed. The four nursing homes that make up the control group have also been trained, as the intervention period and data gathering is now completed. One scientific paper has been published, and three others have been submitted for review. At least one other paper will be submitted in 2019. Several more popular scientific articles and book chapters have been published or submitted. Some main results: There is significant interest in the topic in Norwegian nursing homes, as in the rest of the Western world at the moment. Practice varies from nursing home to nursing home. Many patients and relatives are not offered this type of conversation, the patient's preferences is often neglected, and documentation in patient records and routines are often inadequate. There have been relatively few intervention studies, internationally, in the field, but several studies are underway now, both in nursing homes and in hospitals. Good preparatory conversations require competence and training. Several previous studies have focused on written preparatory wishes (advance directives, AD, for instance regarding DNR-orders), and have only included nursing home patients with capacity to consent. Our study is different than most studies also since it trains all relevant staff in the included wards (rather than using external experts/special facilitators) to do the conversations, and since the written guidance developed has been made publicly available for anyone. Preparatory conversations seem to be something that many patients and relatives want, but there is seemingly great variation in how and when they should take place. ACP and the implementation support provided seem to strengthen patient autonomy, both for patients with and without cognitive impairment, and to create trust and improved decision making processes. The end-conference for the project in February 2018 attracted a large audience and there is a big interest in the ACP-guide that we developed together with the nursing homes. This has been translated to English and made publicly available at the project?s English website: https://www.med.uio.no/helsam/english/research/projects/end-of-life-communication-in-nursing-homes/index.html The project has contributed to the development of teaching programs and training materials, eg. in a free online course in collaboration with ?Aldring og helse? ( https://www.aldringoghelse.no/ ) and another online course will be created in 2019 together with one of the development centers for nursing homes and home services. We have also established a national network for ACP in Norway (coordinated by Centre for Medical Ethics at the University of Oslo).

Prosjektet bidro til at de 8 sykehjemmene som deltok utviklet kompetansen til de ansatte og mer pasientsentrerte tjenester gjennom å ta i bruk såkalte forhåndssamtaler. Gjennom vitenskapelig og populærvitenskapelig formidling har prosjektet også bidratt til at andre sykehjem og andre deler av tjenestene har tatt i bruk de samme verktøyene. Guiden er også oversatt til engelsk. Myndighetene anbefalte nylig forhåndssamtaler skulle tas i bruk for alle alvorlig syke og døende pasienter. Dette prosjektet har bidratt til at tjenestene kan ta i bruk slike samtaler på en mer kunnskapsbasert måte, i alle fall i sykehjem. Prosjektet har også gitt bidrag til utdanningen av helsepersonell med bidrag til lærebøker, masteremner og gratis tilgjengelige e-læringskurs. Prosjektet har også bidratt til å utvikle nye modeller for implementering av forhåndssamtaler som trolig er mer bærekraftige enn mye av det som er utviklet tidligere, samt nye metoder for å evaluere slik implementering.

Almost half of all deaths in Norway occur in nursing homes. Nursing home residents are characterised by high age, frailty, chronic multiple diseases with dementia as the most frequent diagnosis. The high number of critical events, critical decision and de aths, make nursing homes places in which systematically eliciting the patients preferences and values regarding end-of-life care should be carried out. Advance care planning (ACP) is a process of exploring and communicating treatment preferences in advanc e of when decisions need to be made. We know, however that the ACP practices and routines in Norwegian nursing homes are insufficient. The importance of patients' right to self-determination is emphasised in health care legislation and conventions. Howe ver, due to the high prevalence of cognitive impairments among nursing homes residents, eliciting their preferences and wishes for end-of-life care have to be done before it is too late, and generally presupposes involving the patients' relatives in a goo d way. This project's aim is to improve end-of-life care for nursing home residents, through developing and implementing a method for eliciting the patients? preferences for end-of-life care. Using a combination of methods and approaches we plan to map, examine and enhance the existing practices and routines for advance care planning in Norwegian nursing homes. We will - in collaboration with national and international experts - first conduct a systematic review of the literature on advance care plannin g in nursing homes. The second part of the project comprise a survey of existing practices of ACP in Norwegian nursing homes and qualitative interviews with patients, relatives and nursing home staff to elicit their experiences with different ACP practice s. Based on these results, we will identify best practices and develop a guide for ACP. The ACP guide will be implemented and evaluated in a non-randomised controlled study in a sample of nursing homes.