Healthcare professionals' experiences in applying presumed consent legislation in organ donation in three European countries: a phenomenological study

The crisis in the numbers of donated organs has featured strongly in the U. K. literature highlighting the growing gap between those waiting for a transplant currently 6,698 and the numbers of organs available for transplant in 2006 numbering 2,195 (UKT, 2006). To address this the new Human Tissue (Scotland) Act 2006 and the Human Tissue Act 2004 (England and Wales) have sought to increase the numbers of organs available for donation, whilst upholding the principle of informed consent to the donation of one's organs contained within the previous legislation. Critics of this "opt in" system however, suggest the adoption of presumed consent legislation or "opt out" as is the case in much of Europe. Little research exists that explores impact on the health care professionals (HCPs), the bereaved relatives, the health care system and society overall of any change to presumed consent legislation. The aim of this study was to explore the views and experiences of the HCPs who utilise this legislation in their practice, identifying implications for these professionals, the bereaved relatives and the health care system of using presumed consent legislation.MethodsAdopting a phenomenological approach this study utilised the responses to an initial quantitative survey using a questionnaire and combined this with qualitative semi- structured interviews with HCPs who had experience of organ donation in three European countries, Portugal, Norway and Belgium thus capturing the "lived experiences" of the professionals who use this approach to organ donation. A phenomenological framework first identified by Heidegger (1962) and Gadamer (1976) was adopted to structure these interviews and analyse the data developed from these sources.Results and DiscussionThe initial survey of HCPs in the three countries yielded 31 responses (10.6% n=300) from Portugal, 47 (10.4% n=450) from Norway and 44 (35.7% n=123) from Belgium, providing data relating to their experiences in applying presumed consent legislation in organ donation, together with the benefits and challenges of their particular organ donation system. Subsequently, semi-structured interviews undertaken with 14 HCPs in Portugal, 13 HCPs in Norway and 15 HCPs in Belgium demonstrated different approaches to the application of this legislation in these three countries, as a result of varying infrastructures utilised to underpin organ donation. Additionally, there was a dissonance between the requirements of the legislation and the application of this by HCPs within the individual counties resulting from ethical, cultural and professional practice considerations identified by these professionals. Key amongst these considerations was the need to respect the wishes of the donor and involve the bereaved relatives in the organ donation decision-making process.ConclusionImplications exist for HCPs, bereaved relatives, NHS and society of any change to presumed consent legislation from ethical, cultural and professional practice perspectives. These require to be explored in more detail and addressed, should this approach to organ donation be considered in the U. K