TY - JOUR

T1 - Potential donor family behaviours, experiences and decisions following implementation of the Organ Donation (Deemed Consent) Act 2019 in England

T2 - A qualitative study

AU - McLaughlin, Leah

AU - Mays, Nicholas

AU - Al-Haboubi, Mustafa

AU - Williams, Lorraine

AU - Bostock, Jennifer

AU - Boadu, Paul

AU - Noyes, Jane

N1 - Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.

PY - 2024/8/31

Y1 - 2024/8/31

N2 - BACKGROUND: In May 2020, England implemented "deemed consent" legislation, to make it easier for individuals to donate their organs and convey their decision when alive. Families are supposed to support the decision but can still override it if they disagree. We aimed to learn more about this changed role when families were approached about organ donation.METHODS: A qualitative study using semi-structured interviews with families, feedback from nurses, comparisons with audit data, and public involvement. We used framework analysis with a health systems perspective and utilitarian theory to explore if the law worked.FINDINGS: 103 participants were interviewed representing 83 potential donation cases. In 31/83 (37%) cases donation was fully supported, in 41/83 (49%) cases families supported retrieval of some organs, tissues and procedures, and in 11/83 (13%) cases families declined completely. Themes explaining why the law was not (yet) working included: Understanding and agreeing the family's role, confusion about deemed consent, not supporting the deceased expressed decisions, organ donation as too much of a harm, the different experiences of donation pathways, transition from end-of-life to organ donation discussions, experiences of 'consent', paperwork and processes. Families frequently questioned if their relative wanted to have a surgery rather than supporting the person who died to save lives.CONCLUSION: Families use the unique experience of their relative dying in intensive care to create alternate narratives whereby the outcome satisfies their own utility and not necessarily those of the potential donor. New public ongoing media campaigns crafted to be more supportive of organ donation as a benefit to transplant recipients could help families overcome the many difficulties they encounter at the bedside.IMPLICATIONS FOR CLINICAL PRACTICE: The soft opt-out policy has not empowered nurses to help families at their most vulnerable to increase their support for and consent to deceased organ donation.

AB - BACKGROUND: In May 2020, England implemented "deemed consent" legislation, to make it easier for individuals to donate their organs and convey their decision when alive. Families are supposed to support the decision but can still override it if they disagree. We aimed to learn more about this changed role when families were approached about organ donation.METHODS: A qualitative study using semi-structured interviews with families, feedback from nurses, comparisons with audit data, and public involvement. We used framework analysis with a health systems perspective and utilitarian theory to explore if the law worked.FINDINGS: 103 participants were interviewed representing 83 potential donation cases. In 31/83 (37%) cases donation was fully supported, in 41/83 (49%) cases families supported retrieval of some organs, tissues and procedures, and in 11/83 (13%) cases families declined completely. Themes explaining why the law was not (yet) working included: Understanding and agreeing the family's role, confusion about deemed consent, not supporting the deceased expressed decisions, organ donation as too much of a harm, the different experiences of donation pathways, transition from end-of-life to organ donation discussions, experiences of 'consent', paperwork and processes. Families frequently questioned if their relative wanted to have a surgery rather than supporting the person who died to save lives.CONCLUSION: Families use the unique experience of their relative dying in intensive care to create alternate narratives whereby the outcome satisfies their own utility and not necessarily those of the potential donor. New public ongoing media campaigns crafted to be more supportive of organ donation as a benefit to transplant recipients could help families overcome the many difficulties they encounter at the bedside.IMPLICATIONS FOR CLINICAL PRACTICE: The soft opt-out policy has not empowered nurses to help families at their most vulnerable to increase their support for and consent to deceased organ donation.

U2 - 10.1016/j.iccn.2024.103816

DO - 10.1016/j.iccn.2024.103816

M3 - Article

C2 - 39217721

VL - 86

JO - Intensive & critical care nursing

JF - Intensive & critical care nursing

SN - 0964-3397

M1 - 103816

ER -