Family perspectives on declining organ donation: A qualitative study

Area of Science:

• Medical Sociology
• Grief and Bereavement Studies
• Healthcare Communication

Background:

• Australian organ donation consent rates are low (53%), with families declining donation more frequently than in other high-income nations.
• Limited research has explored the experiences of families who opt against organ donation.

Purpose of the Study:

• To investigate the experiences of families who declined organ donation after a relative's death.
• To understand the factors influencing decisions to decline organ donation in bereaved families.

Main Methods:

• Qualitative study utilizing in-depth interviews with recently bereaved families.
• Purposive sampling of 33 families approached for organ donation; analysis focused on nine families who declined.
• Inductive thematic analysis of interview data.

Main Results:

• Families reported inconsistent communication, limited agency, and perceived lack of care, often intersecting with social, economic, and racial marginalization.
• Supportive interactions like clear communication and personalized care were helpful but often coexisted with confusion and powerlessness.
• These experiences significantly shaped families' trust in the healthcare system and their views on organ donation.

Conclusions:

• The decision to decline organ donation is influenced by social, emotional, and institutional factors, not just personal preferences.
• Declining donation can be an act of resistance for socially disadvantaged families.
• Improving care requires addressing institutional exclusion, building trust, and enhancing communication for bereaved families.