24 Exploring how and why older people’s end of life care preferences change over time: a scoping review

Background

Understanding how end of life care preferences evolve over time is important for valid and dynamic Advance Care Planning. This is particularly relevant for older people whose preferences may be uncertain and subject to change. A scoping review was conducted to map the literature on this complex and heterogenous topic.

Review question

What is the nature of the current evidence about how and why the end of life care preferences of older people change over time?

Methods

Searches of four databases (October 2023) identified articles focusing on an older population which either measured preferences longitudinally or analysed factors influencing change or stability of preferences. Characteristics of the included studies were summarised using descriptive statistics and key concepts categorised with content analysis.

Results

16405 titles and abstracts and 212 full texts were screened to identify 52 articles, reporting on 40 studies from 13 different countries. The majority of studies were longitudinal studies collecting quantitative data about how specific treatment preferences change over time. Other end of life care preference categories studied were; euthanasia, balancing quality of life and length of life, general goals of care, preferred place of death, decision making preferences and spiritual preferences. Factors influencing preference change or stability mostly focussed on treatment preferences but included physical, psychological, social and spiritual factors.

Conclusions

This review focuses on a fast growing and under researched section of society. It provides a comprehensive overview of how changing end of life care preferences are conceptualised in the current literature and identifies several areas for further research. To inform patient-centred end of life care there is a need for longitudinal qualitative studies exploring what matters most to older people at end of life, and the complex experience of negotiating these preferences over time.