Talking about the end - involving service users in an end-of-life care quality improvement initiative in a residential care setting

Abstract

Introduction: Staff members in a residential setting for older people participated in a quality improvement initiative to improve end of life care practices within their facility. As part of this initiative, staff members sought to create a genuine culture of involvement for service users, and staff. Talking about end of life care is a difficult topic. It is recognised that in practice, there is generally very poor communication around end of life issues and care (Quinlan & O'Neill, 2013). This is particularly true where service users have cognitive impairment or dementia. A novel approach to involving service users was required in this setting to ensure that their views were accurately represented. Objectives: The purpose of this project was to adopt an integrated care approach to a quality improvement initiative in a residential setting, putting service user outcomes and experience at the centre of the change process. Specifically: - To involve service users, particularly those whose voices are seldom heard, in the review and development of end of life care practices - To empower service users to develop and own a unique vision for good end of life care in their residential centre Method: A focus group consisting of 9 service users was convened. Participants were considered for inclusion based on the following criteria: - Alert enough to attend group session - Adequate health and ambulatory ability (walking; in wheelchair/high support chair) - Participants were not automatically excluded on the basis of cognitive status or communication impairment. Where communication could be supported in the group by a skilled moderator (as predicted by specialist Speech & Language Therapy assessment), service users were invited to participate The group was facilitated by a Senior Grade Speech & Language Therapist (SLT), and SLT Assistant. Results: Service users with dementia, cognitive impairment and communication impairments were successfully supported to directly communicate their views on end of life care. The focus group method served to empower service users, as evidenced by: - Service users developing their own unique end of life symbol - Service users requesting that the focus group meetings continue on a regular basis to allow them to explore other topics relevant to their care. Service users will determine and direct themes for future meetings. Discussion: The Irish National Strategy for Service User Involvement highlights service user input as a key element in the delivery of patient centred care. It is vital that the needs and preferences of residents who have difficulty communicating are actively sought, and every effort is made to support them to communicate their views directly (HIQA, 2016). With the appropriate methods and communication facilitation strategies, service users with dementia and cognitive impairment can be supoorted to express their views, even with regard to more challenging topics. A focus group method can create an accepting, non-threatening environment for service users. The need for skilled facilitators is of paramount importance in supporting individuals with dementia and cognitive impairment. As specialists in communication, SLTs are ideally placed to adapt, modify and support communication.