Exploring Family Decisions to Refuse Organ Donation at Imminent Death

• Published in: Qualitative health research 2020-03, Vol.30 (4), p.572-582
• Main Authors: Darnell, Whittney H., Real, Kevin, Bernard, Andrew
• Format: Article
• Language: English
• Subjects: Adult; Aged; Biological organs; Blood & organ donations; Communication; Death & dying; Decision Making; Donations; Donors; Family - psychology; Female; Health education; Health information; Health technology assessment; Humans; Male; Middle Aged; Motivation; Proxy - psychology; Qualitative research; Refusal to Participate - psychology; Relatives; Right to Die; Tissue and Organ Procurement; Young Adult
• ISSN: 1049-7323; 1552-7557
• DOI: 10.1177/1049732319858614

Communication about organ donation at the time of imminent death is a meaningful, yet less understood, area of health communication. We employed a multiple goals framework to explore family normative perceptions of organ donation and the conversational goal tensions experienced during a family member’s imminent death. Semi-structured interviews were conducted with 14 family members who refused to donate when approached by an organ procurement coordinator (OPC) upon the imminent death of a family member. Thematic analysis revealed that family members described their decisions to refuse donation as (a) last acts of love, (b) responses to unnecessary requests, and (c) consistent with the known beliefs of the patient. Participants described several goal tensions operating within the organ donation conversation itself, including (a) the management of frequent requests, (b) pressure to donate, and (c) enduring unwanted requests from the OPC. Communication goals frameworks offer practical insights for improving organ-related conversations.