Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’?

Sque, Magi; Long, T.; Payne, Sheila; Allardyce, Diana

doi:10.1111/j.1365-2648.2007.04491.x

Cited by 112 publications

(117 citation statements)

References 26 publications

(30 reference statements)

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“…Whereas prior UK research had involved both consenting and non-consenting families (Sque M, Walker W, Long-Sutehill T, Morgan M, Randhawa G, Warrens A. Bereaved Families' Experiences of Organ and Tissue Donation, and Perceived Influences on their Decision Making. University of Wolverhampton; 2013, unpublished), 109,122 NHSBT's governance procedures and protocols do not allow retention of the details of non-consenting families. These families could not, therefore, be identified retrospectively and approached for the study.…”

Section: Recruiting For the Bereaved Family Studymentioning

confidence: 99%

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Morgan

Kenten

Deedat

et al. 2016

Programme Grants Appl Res

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BackgroundBlack, Asian and minority ethnic (BAME) groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks.ObjectiveTo identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent.MethodsThree-phase programme comprising (1) community-based research involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; (2) hospital-based research examining staff practices and influences on family consent through ethics discussion groups (EDGs) with staff, a study on intensive care units (ICUs) and interviews with bereaved ethnic minority families; and (3) development and evaluation of a training package to enhance cultural competence among ICU staff.SettingCommunity focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts (three in London and two in Midlands).Participants(1) Community studies: 228 focus group participants; (2) hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and (3) evaluation: 66 health professionals.Data sourcesFocus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation.Review methodsSystematic review and narrative synthesis.Results(1) Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. (2) Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation (SNOD) reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory (or cardiac) death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. (3) Evaluation: professional development package – a digital versatile disc-based training package was developed to promote confidence and skills in cross-cultural communication (available at:www.youtube.com/watch?v=ueaR6XYkeVM&feature=youtu.be). Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation.LimitationsParticipants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families.ConclusionsThe research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS.Future workGreater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

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Section: Recruiting For the Bereaved Family Studymentioning

confidence: 99%

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Morgan

Kenten

Deedat

et al. 2016

Programme Grants Appl Res

Self Cite

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“…First, much pro-donation activism and many campaigns have drawn on a gift of life discourse that sets the gift of the organ apart from other gifts as the invaluable gift of life (see Siminoff & Chillag, 1999;Sque et al, 2008;Shaw, 2010). This is a main feature of what here is labelled the heroic gift-giving framework, and other defining features are the generosity of donors who donate without any financial benefits and the heroism within this caring act that saves lives without requiring anything in return.…”

mentioning

confidence: 99%

Neither property right nor heroic gift, neither sacrifice nor aporia: the benefit of the theoretical lens of sharing in donation ethics

Zeiler

2013

Med Health Care and Philos

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Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between four frameworks for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations.

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“…Here a parallel can perhaps be drawn to the analogy of the use of the phrase 'a gift of life' that, according to Shildrick (2015), originates in the notion of the sacred heart of Christ that represents both the actual physical heart of Christ and a spiritual offering, conceived of as a gift to humanity. Research conducted in the United Kingdom shows that grieving relatives may view organ donation as a sacrifice, rather than a gift of life, and that to them the wish to protect the integrity of the deceased's body may override the will to do good (Sque et al 2008; see also Shaw 2010). Donor kin may not necessarily express an objection to donation, but instead be concerned with not meddling with the integrity of the human body.…”

Section: Relinquishing the Bodymentioning

confidence: 99%

Solidarity beyond the grave: Yielding organs in a Nordic welfare state

Ådahl¹

2020

MAT

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According to a survey carried out in 2009, Finnish citizens are exceptionally willing to donate their organs after death, an attitude that paved the way for a 2010 amendment to the Tissue Law that introduced an 'opt-out' consent policy. Reactions to the legislative change ranged from taking a highly utilitarian stance on the issue to expressing indignation over the welfare state meddling with citizens' right to self-determination and ownership of the body. In this article I consider how willingness to donate is linked to the notion that donation is a civic obligation, as well as a means to distribute the valuable national resource that organs are deemed to be. I explore how the welfare state relates to national attitudes towards donation, and I discuss culturally specific terms for donation as a way of understanding the emotions that surround it. By examining the rhetorical moves that turn the body into a community resource, I analyse the specifics of bodily citizenship in Finland, and particularly how the notion of solidarity can be used to explain citizens' motivation to donate their bodies after death. A key finding is that solidarity is not only needed in order to bring about donation but also produced as a result of donation.

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Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’?

Cited by 112 publications

References 26 publications

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Neither property right nor heroic gift, neither sacrifice nor aporia: the benefit of the theoretical lens of sharing in donation ethics

Solidarity beyond the grave: Yielding organs in a Nordic welfare state

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