Digital Advance Decision Making with Severe Mental Illness: A retrospective observational cohort analysis of the use of an Electronic Palliative Care Coordination System

Background: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Decision Making (ADM) is widely recommended by palliative care experts and could reduce inequalities. However, implementing palliative care ADM with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to increase ADM uptake and improve care quality in the general population. This study explores the use of CMC amongst those with SMI and aims to describe the cohort of people with a primary diagnosis of SMI who have used CMC for ADM, how this cohort uses the service and make recommendations for future research and policy. Method A retrospective observational cohort analysis was completed of CMC records created 01/01/2010 - 31/09/2021. Descriptive statistics were used to report on characteristics including: age, diagnosis, prognosis and resuscitation status. Thematic analysis was used to report on the content of patients’ statements of preference. Results There were 1826 records where the service user had a primary diagnosis of SMI. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of ‘years’ and most (63.1%) wanted full CPR. Statements of preferences contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity. This suggests that compared to usual CMC users the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. However, only a minority contained statements of patient wishes and where recorded these were often brief, and many did not obviously reflect authentic patient voice. Conclusions This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have found a digital tool is helpful to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.