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

Area of Science:

• Gerontology
• Palliative Care
• Family Studies

Background:

• Advance directives aim to document patient wishes for end-of-life care.
• Challenges often persist beyond the completion of these documents.
• Family caregivers' experiences are significantly influenced by communication and caregiving dynamics.

Purpose of the Study:

• To investigate how communication and caregiving impact family caregivers' end-of-life experiences.
• To identify communication gaps and caregiving challenges not addressed by advance directives.

Main Methods:

• A non-dominant simultaneous mixed-methods (QUAL-QUAN) approach was employed.
• In-depth interviews were conducted with 108 family caregivers.
• Data collection occurred approximately 4 months post-hospice patient death.

Main Results:

• Most patients (84.9%) had end-of-life treatment wishes; many had advance directives (e.g., Health Care Proxy 93.3%).
• Despite having directives, most caregivers (76.9%) felt adequately informed.
• Key caregiver experiences included family conflict, patient/family-provider conflict, uncertainty, caregiving realities, and awareness/avoidance of dying.

Conclusions:

• Advance directives and care planning often fall short in providing necessary communication and preparation for caregivers.
• Caregivers frequently felt unprepared for decision-making and discussions despite the presence of advance directives.
• The process offers opportunities for enhanced teaching, learning, preparation, and support for families during end-of-life care.