Promoting Early Engagement and a Life Course Approach to Advance Care Planning: Findings from a Multi-Stakeholder Participatory Action Research Study

Abstract Background Complex physical and mental health comorbidities, including cognitive impairment, can impact upon decision-making capabilities in later life. Therefore, the opportunity to receive timely information, engage actively in decision-making, and express preferences about future care is crucial1. Despite universal recognition of the benefits of engaging older adults and persons living with dementia in advance care planning (ACP), evidence indicates that ACP happens infrequently. This timely study sought to collaboratively explore ACP from the perspective of older persons, their family carers, and inter-disciplinary health care professionals within Older Persons Mental Health Services, considering the commencement of the Assisted Decision-Making (Capacity) Act 2015. Methods This participatory action research study utilised mixed methods with multi-stakeholders; encompassing a local survey (n=19), national survey (n=50), focus groups (n=22), a co-operative inquiry group (n=9), and stakeholder dialogue (n=18), iteratively across three stages. Results The integrated findings of the study identified the importance of timeframe, highlighting the tension between giving individuals time to adjust to a diagnosis, versus ‘a window of opportunity’ for engagement in ACP. Receiving timely information was underscored as facilitating better understanding for older persons and their family carers, and increased capacity to cope later in the illness trajectory. The study identified the need for a multi-pronged life-course policy approach to normalise ACP that would transcend healthcare, and the discourse of death and dying. Furthermore, a life-course approach with associated public campaign(s), may also serve to combat ageism at a societal level, perhaps linking to the National Positive Ageing Strategy. Conclusion A pro-active approach to ACP, including the provision of timely information and engagement, and identifying emotional readiness were highlighted. A life-course policy approach to ACP, with associated public campaign(s) to normalise ACP and combat ageism is recommended. Reference 1. World Health Organisation. Assessing the development of palliative care worldwide: a set of actionable indicators. Geneva: WHO, 2021.