8 What matters most?: A longitudinal exploration of the end-of-life preferences of people over 85 living with frailty

<h3>Background</h3> Understanding how end-of-life preferences evolve over time is essential for dynamic and person-centred advance care planning. This is particularly important for older people living with frailty, who can have an unpredictable illness course or incompletely expressed preferences. Investigating how the wishes of older people with frailty develop over time will inform the future direction of advance care planning for this under-researched population. <h3>Methods</h3> Using constructivist grounded theory methods, this longitudinal qualitative interview study explored the end-of-life preferences of people aged over 85 living with frailty. Thirteen Primary Care patients were recruited using purposive and theoretical sampling. Participants were interviewed 1–3 times over 3–18 months. Two caregivers, who were bereaved during the study period, were also interviewed. Constant comparative analysis was used to develop theoretical categories, which were grounded in the qualitative interview data. <h3>Results</h3> This study found that contemplating, expressing and negotiating end-of-life preferences over time was a dynamic process, where preferences were held with uncertainty. Participants often envisaged their options narrowing to the point where they would ‘have no choice’ and rarely felt empowered to take part in healthcare decision making. People’s priorities for end-of-life care were influenced by a wish to maintain their individual identity for as long as possible. It was important to participants that this enduring sense of self was known and respected by those caring for them at end of life. <h3>Conclusions</h3> Our findings show that the predominant model of decision-based advance care planning is problematic for older people living with frailty. This study supports a growing call for a broader approach, shifting to preparation for end of life rather than planning. Focussing on an individual’s sense of self, and how this influences their wishes, will enhance this approach, promoting the delivery of truly person-centred end-of-life care.