Abstract
Advance care planning (ACP) is a process which involves the consideration of end-of-life wishes, communication about them with family and providers and their written documentation. ACP can both clarify and facilitate a person’s end-of-life wishes. Yet, caregiving for a dying person remains one of life’s most distressing experiences. Beyond treatment decision-making, ACP has the potential to relieve distress, assist older people with life closure and ease the transition to bereavement. The purpose of this study was to investigate how ACP and provider communication influenced end-of-life care and caregivers’ adaptation in bereavement. This mixed-methods longitudinal study involved in-depth interviews with 67 caregivers at 4 and 10 months after a loved one died in hospice care. Quantitative data was collected using the Core Bereavement Items (CBI) and categorical questions about health and coping. Qualitative data was collected from open-ended questions about the caregiver’s perceptions of the illness trajectory, experiences with end-of-life care and bereavement. CBI scores decreased over time (T1M=18.23; T2M=15.76); Self-reported health improved (T1M=2.57; T2M=2.63); Overall coping improved (T1M=2.05; T2M=2.30). However, 18% (T1) and 6% (T2) reported coping “Not too well” or “Not well at all.” Qualitative data analysis yielded a theme of Indelible Memories with stories repeated at T1 and T2 about the intense recall of: (a) Unresolved misunderstandings, (b) Unexpected transitions; and (c) Undesired locations at death. These findings suggest the importance of ACP that is enhanced to encompass caregivers’ needs and the opportunity to begin preparing for the dying process, loss and resulting grief.