“At the Foot of a Very Long Ladder”: Discussing the End of Life with Older People and Informal Caregivers

Abstract 

Context

International policy advocates the development of approaches to raise public awareness about end-of-life-care issues, so that when people face a final illness, they may better articulate their needs for care. This article reports findings from one approach of engaging older members of the general public and informal caregivers in discussions about end-of-life care.

Objectives

To increase understanding of the concerns many older people have around end-of-life issues and provide advice and information to address these.

Methods

Listening events were delivered across the United Kingdom using principles of focus group conduct to facilitate discussions among older people, informal caregivers, and representatives from community groups (n=74) in four workshops. Participants discussed their feelings, experiences, and concerns about the end of life, guided by the booklet Planning for Choice in End-of-Life Care, which was piloted in an earlier study.

Results

After framework analysis, three themes arose: communicating about end-of-life issues, factors that influence individuals’ concerns about death and dying, and advance care planning. The heterogeneity of stories told not only illustrates how people’s responses and needs at the end of life vary greatly but also reveals shared reactions, experiences, and some confusion. The stories also demonstrate people’s willingness to engage with concerns associated with the end of life and their conviction that this is an important area of community action and development.

Conclusion

Further community-based solutions to questions of quality of death need to be found, encouraged by programs of public education.

Key Words: Older people, informal caregivers, end-of-life care, palliative care, death and dying, public awareness