BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ (...) and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)

United Kingdom Transplant reported that, during 2007—2008, a total of 7655 people were awaiting a transplant; however, only 3235 organs were available via the current `opt in' approach. To address this shortfall, new UK legislation sought to increase the number of organs available for donation. The Chief Medical Officer for England and Wales supports the adoption of `presumed consent' legislation, that is, an `opt out' approach, as used in much of Europe. Little research, however, has explored the impact on bereaved (...) relatives, nurses and medical staff of introducing presumed consent legislation. Adopting a phenomenological approach, this study used responses to an initial questionnaire combined with selected interviews with health care professionals to capture their direct experience of presumed consent legislation in three European countries: Portugal, Norway and Belgium. (shrink)

Moral distress has received much attention in the international nursing literature in recent years. In this article, we describe the evolution of the concept of moral distress among nursing theorists from its initial delineation by the philosopher Jameton to its subsequent deployment as an umbrella concept describing the impact of moral constraints on health professionals and the patients for whom they care. The article raises worries about the way in which the concept of moral distress has been portrayed in some (...) nursing research and expresses concern about the fact that research, so far, has been largely confined to determining the prevalence of experiences of moral distress among nurses. We conclude by proposing a reconsideration, possible reconstruction and multidisciplinary approach to understanding the experiences of all health professionals who have to make difficult moral judgements and decisions in complex situations. (shrink)

Next SectionThe present investigation looks for a solution to the problem of the influence of feelings and emotions on our ethical decisions. This problem can be formulated in the following way. On the one hand, emotions (fear, pity and so on) can alter our sense of discrimination and lead us to make our wrong decisions. On the other hand, it is known that lack of sensitivity can alter our judgment and lead us to sacrifice basic ethical principles such as autonomy, (...) beneficence, non-maleficence and justice. Only emotions can turn a decision into an ethical one, but they can also turn it into an unreasonable one. To avoid this contradiction, suggest integrating emotions with the decisional factors of the process of “retrospective thinking”. During this thinking, doctors usually try to identify the nature and impact of feelings on the decision they have just made. In this retrospective moment of analysis of the decision, doctors also question themselves on the feelings they did not experience. They do this to estimate the consequences of this lack of feeling on the way they behaved with the patient. (shrink)

In 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. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives 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. Healthcare 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. (shrink)