29 Lean in, don’t step back: the views and experiences of people, and their carers, with mental illnesses and incurable physical health conditions, of palliative and end of life care

Background People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population. They also experience poor physical health and higher rates of many life-limiting conditions. Research on the specific needs of people with SMI in palliative and end of life care is extremely limited and focuses on describing barriers to care from clinician´s perspectives. The limited research that has been carried out originates outside the UK in the USA, Canada and New Zealand. The views of patients with both SMI and a life limiting and carers have not been included in previous research studies. Methods Eight participants were interviewed using a semi-structured interview format. Five were patients with mental illnesses and incurable physical conditions and three were, or had been, carers of people with mental illness and incurable conditions. Interviews were transcribed and a reflexive thematic analysis carried out. A conceptual framework of themes was developed from the interview analysis and is presented in the paper. Results Four overarching themes were developed from the analysis of the data. Stigma and Prejudice – ‘See me not my diagnosis’ Hesitancy and Avoidance – ‘Treading on eggshells’ Collaborators in Care – ‘the ignored experts’ and Connections ‘Leaning in, not stepping back’. Each will be discussed and illustrated with participant views. Conclusions This study offers novel understanding of the views, experiences and expectations of a group of patients often marginalised and excluded from palliative and end of life care - people with SMI and terminal conditions. The themes developed from the interview data offer valuable insights into how access to, and quality of, palliative and end of life care can be improved for people with SMI. The findings are of interest to clinicians, policy makers, patients and carers.