Impressions of the end of life: Engagement and empowerment of older people in advance care planning

This thesis investigates the process of advance care planning (ACP) among older adults. Its objectives were to: (1) enhance understanding of the ACP process both conceptually, through the application of behaviour change theory, and empirically, by identifying ACP subgroups and trajectories of engagement; and (2) evaluate information meetings as interventions to promote ACP. Chapter 1 introduces the topic. Chapter 2 examined the ACP process within the context of the Stages of Change in the Transtheoretical Model, identifying several challenges in its application to ACP. In response, the Advance Care Planning – Applied Stages of Change (ACP-ASC) model was developed, which integrates ACP actions without presupposing a fixed sequence, and incorporates various levels of action. This model more accurately reflects the contemporary understanding of ACP as an iterative and ongoing process. Chapter 3 identified four distinct groups based on ACP engagement: inactive (60% of the sample), relatives-oriented (27%), documentation-oriented (7%), and comprehensive (5%). These groups differed in the ACP actions undertaken, topics addressed, as well as their demographic, health, and care-related characteristics. Chapter 4 explored the development of ACP engagement over a five-year period, demonstrating that distinct engagement trajectories exist and vary according to the type of ACP action. For discussions with family and friends, individuals followed one of three trajectories: consistently unengaged (53%), increasingly engaged (6%), or consistently engaged (42%). For discussions with a physician, individuals followed trajectories of consistently unengaged (82%), increasingly engaged (8%), or decreasingly engaged (10%). Chapter 5 assessed older adults' awareness of, and actual knowledge regarding, palliative care. Although the vast majority were familiar with the term ‘palliative care’ (90%), significant misconceptions persisted. For instance, only a minority recognised that palliative care can be provided alongside life-prolonging treatment (30%), or that it is not solely reserved for individuals with a prognosis of only a few weeks (24%). Chapter 6 addressed the extent to which older adults are interested in information meetings on end-of-life care, and their preferences concerning the content and organisation of such meetings. One-third indicated willingness to attend an information meeting if invited that week, and another third expressed interest in future participation. Furthermore, interest was observed across a broad and diverse group of older adults. Chapter 7 evaluated the effectiveness of information meetings in promoting ACP engagement among older adults, including meetings led by GPs compared to those organised by other bodies (e.g., hospices). Information meetings regarding end-of-life care encouraged older adults to engage in ACP: one in four attendees discussed their preferences with their GP following the meeting, with no significant difference between meeting types. Chapter 8 reflects on these findings. Although ACP is increasingly recognised as an ongoing process, many older adults either do not engage or fail to maintain engagement, while policy presumes regular engagement. Information meetings are a valuable intervention, promoting both first and maintained engagement by addressing knowledge gaps and empowering older adults to discuss end-of-life preferences.