Family perspectives on declining organ donation: A qualitative study

Area of Science:

• Medical Sociology
• Healthcare Communication
• Organ Donation Studies

Background:

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

Purpose of the Study:

• To explore the lived experiences of families who declined organ donation after a relative's death.
• To identify factors influencing these decisions and family interactions with the healthcare system.

Main Methods:

• Qualitative study employing in-depth interviews with recently bereaved families.
• Purposive sampling of 33 families approached for organ donation; analysis focused on 9 families who declined.
• Inductive thematic analysis of interview data.

Main Results:

• Families reported inconsistent communication, limited agency, and perceived lack of care, often linked to social, economic, or racial marginalization.
• Supportive interactions like clear communication and personalized care were valued, but often interspersed 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.
• Families experiencing social disadvantage may decline donation as a form of resistance.
• Enhancing end-of-life care requires addressing institutional exclusion, building trust, and improving communication for families of potential organ donors.