Experiences with advance care planning: older people and family members’ perspective

Abstract

The aim of this study is to report the findings of a case study that explored the phenomenon of advance care planning and advanced care directives in residential care settings in Australia. In particular, this study focuses on the experiences of residents' and family members'. Understanding the phenomenon of advance care planning and advanced care directives is vital to end of life decision making. There are few studies that report the experiences of older people and family members in relation to advance care planning and advanced care directives. A case-study research was conducted and data was collected over 7 months involving participant observation, field notes, semi-structured interviews and document analysis. The participants' early experiences with advance care planning were expressed in unpleasant, hostile and negative ways. However, those emotions and concerns were transformed to more stable, amenable and positive attitudes and feelings as issues were resolved. The factors that enhanced or inhibited the transition were described. Older people and families view the end of life with broader psychosocial and spiritual meanings shaped by a lifetime of experiences. Advance care planning led to a different level of appreciation of personal entity and transcendence. However, advance care planning demands concerted action and support by everyone involved.