Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End

Abstract

ContextThe premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed ObjectivesThe overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers’ experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented. MethodsNon-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care. ResultsA majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will–43 (39.8%); Do Not Resuscitate orders (DNR)–82 (75.9%) and Medical Orders for Life Sustaining Treatment–40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had “enough” or “just the right amount” of information to prepare for the patients’ death. Five themes illustrated caregivers’ experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying. ConclusionA majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.