Decisions in end-of-life care: perspectives from family caregivers.

Abstract

Background: Making healthcare decisions on behalf of loved ones can be highly stressful for family members to act as surrogate decision makers, especially when decisions are relevant to terminal care.

Aim: To understand the challenges that caregivers face when making decisions for family members at the end of life.

Methods: A descriptive phenomenological approach using semi-structured interviews with seven family caregivers recruited from two palliative care institutions in Amman.

Results: Family caregivers mentioned several reasons to avoid participating in decisions near their relative's end-of-life, such as holding on to hope that their family member would recover and fearing loss. Others expressed that they felt their relationship to the patient impaired their ability to make reliable judgments and they found it hard to know what the right decisions were. They were worried about being held responsible for the result of decisions and were concerned about felling guilty.

Conclusion: To conclude, caregivers do not feel prepared to make decisions about their relative's care and feel that they are too emotional and attached to the patient, or are afraid of the consequences of their decisions.