‘If I donate my organs it’s a gift, if you take them it’s theft’: a qualitative study of planned donor decisions under opt-out legislation

Abstract

BackgroundThere is a worldwide shortage of donor organs for transplantation. To overcome this, several countries have introduced an opt-out donor consent system. This system, soon planned for Scotland and England means individuals are automatically deemed to consent for organ donation unless they register an opt-out decision. This study was designed to explore the reasons underpinning donor choices for people who plan to actively opt-in to the register, take no action and be on the register via deemed consent, opt-out, and those who are unsure of their decision.MethodsThis study reports the analysis of free-text responses obtained from a large survey of intentions towards opt-out legislation in Scotland, England and Northern Ireland (n = 1202). Of the n = 1202 participants who completed the questionnaire, n = 923 provided a free text response explaining their views. Thematic analysis was used to explore the reasons why participants plan to: opt-in (n = 646), follow deemed consent (n = 205), opt-out (n = 32) and those who were not sure (n = 40).ResultsA key theme for people planning to opt-in is that it ensures one’s donor choice is explicitly clear and unequivocal. Some regarded deemed consent as unclear and open to ambiguity, thus actively opting-in was viewed as a way of protecting against family uncertainty and interference. For the deemed consent group, a key theme is that it represents a simple effortless choice. This is important from both a pragmatic time-saving point of view and because it protects ambivalent participants from making a challenging emotive choice about organ donation. Key themes for those planning to opt-out relate to fears around medical mistrust and bodily integrity. Notably, both participants who plan to opt-out and opt-in perceived presumed consent as “authoritarian” and a method of increasing Government control of organs. In response, registering an active decision protected their freedom of choice.ConclusionsThe findings highlight the importance of registering deliberate active consent for people who choose opt-in, due to concerns over possible family refusal under deemed consent. These findings could inform the development of communication campaigns that encourage family communication before the implementation of opt-out legislation.

Legal origins, religion and health outcomes: a cross-country comparison of organ donation laws

“…(2014). Although this result may seem surprising, experimental research suggests that opt-in policies portray donation as an active, altruistic act (Davidai et al ., 2012; Miller et al ., 2019). This portrayal aligns with the norm of giving as an active process that exists in countries where philanthropy is high (Shepherd et al ., 2014).…”

When Lone Wolf Defectors Undermine the Power of the Opt-Out Default

“…Being registered to donate organs under either an opt-in or opt-out system involves psychological costs 30,31 . These costs stem from considering one's morality, perceived violations of bodily integrity, medical mistrust at how one may be treated by the medical profession in life-threatening situations (e.g., harvesting organs before death), the 'ick' factor (i.e., donating organs feels disgusting), the 'jinx' factor (i.e., registering makes one more likely to die) and a preference for individual over state ownership.…”

‘To donate or not to donate? that is the question!’: an organ and body donation comic

“…In a recent survey of 1202 members of the UK public about their thoughts on the introduction of the 'opt-out' organ donation system, researchers from the University of Stirling found that current NHS myth-busting campaigns, which focussed principally on dissemination of facts, were less effective than 'narrative communication campaigns that employ fictional testimonies to refute organ donation myths'. Campaigns containing personal narratives have been shown to increase donor intentions (Miller, Currie, & O'Carroll, 2019b). Those who tend to have favourable attitudes towards organ donation are medical staff who have more insight into the subject of donation, but this is not representative of the general population (Coad et al, 2013;Flod en & Forsberg, 2009).…”

“…Organisations such as Hospice UK (https://www.hospiceuk.org/) are aiming to change public attitudes and behaviour around dying, death and bereavement through online campaigns such as 'Dying Matters' (https:// www.dyingmatters.org/) and 'Awareness Week' but the topic of donation is not included in their campaigns. Under the new opt-out organ donation system, it is the role of 'the families to confirm the deceased's objection to donation, otherwise consent is deemed' (Miller, Currie, & O'Carroll, 2019b). It is, therefore, increasingly important for people to discuss their wishes with their relatives (Coad, Carter, & Ling, 2013) especially with those who are fearful of the topic.…”