Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Abstract

Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved.

Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken.

Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back.

Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.

Keywords:

• Palliative care
• End of life care
• Severe mental illness (SMI)
• Common and persistent mental illness (CPMI)
• Patient experience
• Carer experience
• Psychosis
• Schizophrenia
• Dying

Acknowledgements

We gratefully acknowledge the time and energy given by the participants who took part and shared their experiences and views so generously and thoughtfully. We also thank the participating organizations, including individual clinicians, who gave access to, and helped identify, potential participants.

Disclaimer statements

Contributors No.

Conflicts of interest No.

Ethics approval Yes.

Additional information

Funding

This study was funded as part of a doctoral research grant to the lead author from Coventry University, with supplementary support from Birmingham and Solihull Mental Health Foundation Trust Research and Innovation Department. The writing of this paper was supported by the award of a West Midlands Higher Education England funded Writing Grant and the Nursing, Midwives and Allied Health Professional’s Integrated Clinical Academic Research Unit, Birmingham Health Partners.