Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives

Abstract

BackgroundIn the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.MethodsA content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.ResultsRelatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.ConclusionHealthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0120-6) contains supplementary material, which is available to authorized users.

A narrative review of family members’ experience of organ donation request after brain death in the critical care setting

“…The available data suggest that having the donation conversation before the declaration of death is associated with authorization to donation [19,31] and that separating discussions about EOL care and donation can decrease consent rates [32]. FDMs are also less likely to authorize donation if they feel "surprised" by the request [15,33].…”

A mixed-methods study of organ donation in the intensive care unit: 22 actionable practices to improve organ donation

“…Organ donation rates vary across comparable intensive care units (ICUs), 1 suggesting that donation processes differ between ICUs, despite the existence of clinical guidelines for donor care, 2,3 and the coordination efforts of organ donation organizations (ODOs). Aiming to improve donation rates, many studies have examined donor family [4][5][6][7][8][9] and ICU staff [10][11][12] experiences with donation decision-making. Comparatively fewer studies have examined the wider process of donor care in the ICU.…”

The effectiveness of an interactive organ donation education intervention for Dutch lower-educated students: a cluster randomized controlled trial

“…Only 42% of the Dutch population has registered their preference regarding organ donation, of which 58% registered as a donor [1]. This results in long waiting lists [2], but also places a high burden on family members and medical professionals [3][4][5]. In case someone dies without being registered, family members are asked for consent.…”

“…In case someone dies without being registered, family members are asked for consent. This if often an overwhelming experience in sad circumstances [5]. Moreover, medical professionals expressed having difficulties talking to families about organ donation [3].…”

“…This all leads to a high refusal rate (67%) in cases where no consent or objection is registered [5].…”