Shining a light on organ donation after death : on various aspects influencing organ donation

Abstract: Introduction: The willingness to donate organs after death is widespread in our country, Sweden. Nevertheless, the donation rate is rather low and patients still die while waiting for an organ. One of the obstacles to organ donation is that people tend not to tell anyone about their decision. Consequently, the relatives of a potential donor are often unaware of the intention of the deceased and the decision is seldom found in the National Donor Registry. Adding to the complexity is the fact that an organ donation is such a rare event within the intensive care units (ICU) and this leads to staff lacking experience and knowledge of how to handle the donation process appropriately. Thus we believe that the reasons behind the low donation rates are multifactorial – this thesis will explore some of these factors. Aim: The general aim of this thesis is to improve knowledge and understanding of various aspects influencing organ donation after death. Methods: To explore the impact of information campaigns targeting the general public, three opinion polls were conducted: before and after a short term information campaign, and after a long term information campaign (Paper I). Furthermore, the impact of donation specialised nurses (DOSSes) on donation rates was assessed through reviews of medical records from three different periods (before the first DOSS, during an initial local project and during a permanent service covering the whole county). In addition, the ICU staff’s views on the impact of the DOSS function was evaluated through questionnaires to ICU staff (during project and permanent service) (Paper II). Finally, the donor relatives’ experiences of the medical treatment enabling organ donation was explored through in-depth interviews as was the donor relatives’ own decision-making process, and whether their personal experiences of the donation process had influenced their own inclination to donate organs (Paper III). Results: The short term information campaign had no impact on the general public. After the long term campaign, however, some changes were observed – these were most clearly pronounced in the group of middle-aged women. Through the introduction of the DOSS function the donation rate increased significantly and it was maintained at a high level after the transition into the permanent DOSS service. Furthermore, the ICU staff stated that the DOSS function clearly improved the working conditions during the donation process as well as the information given to the donor relatives. Finally, though brain death and organ donation proved to be hard to understand for many donor relatives, and though the comprehension of the medical treatment enabling organ donation was rather low, the donor relatives’ personal experience of the donation process seems to inspire a willingness to donate. Conclusion: Firstly, in order to inspire the general public to talk about and also to formally inform about their decision on organ donation, there is a need for continuous information targeted at different subgroups of the general public. Secondly, the rare occurrence of organ donation within the ICUs renders the involvement of specialised staff – such as the DOSSes – of great value for donation rates as well as for the quality of the handling of the acute donation process and the situation for donor relatives. Thirdly, in order to help donor relatives better comprehend the circumstances surrounding an organ donation, there is a need for a greater transparency and clarity regarding all the steps taken during the donation process. However, having experienced the donation process closely did not discourage the donor relatives from donating their own organs – but rather inspired a willingness to donate. This indicates an acceptance of the medical procedures necessary in order to enable organ donation after death. Hence, our studies indicate that there are various ways of influencing and also optimising organ donation after death.