HOW ADVANCE CARE PLANNING INFLUENCES THE END-OF-LIFE EXPERIENCE: BEREAVED CAREGIVERS’ PERSPECTIVES

摘要

Advance Care Planning (ACP) facilitates the expression of a dying person’s wishes and guides decision-making. Yet, in near-death moments, caregivers are confronted with difficult realities. The purpose of this study was to investigate bereaved caregivers’ perspectives on how ACP influenced outcomes at the end of a loved one’s life. In-depth interviews were conducted with 108 bereaved caregivers 4 months after the death. The results indicated that 104 (96%) hospice patients had an advanced directive and 73 (68%) had spoken about their wishes with a healthcare provider. However, 42 (40%) caregivers did not discuss death with their loved one; 26 (25%) did not say goodbye, reporting significantly poorer physical health (t[104]=-2.9, p <.05) and more frequent grief (t[103] =-1.9, p<.10). Three themes illustrated the end-of-life experience: Peaceful-Expected; Difficult-Uncertain; and Shocking-Unexpected. The results suggest that ACP is not an event but a process and families need continuing preparation for what they experience.