Organ and tissue donation and transplantation: analysis of consultation responses

13.Other comments (Q15)

13.1 This chapter presents a summary of other comments made by respondents to the consultation. It presents an overview of comments provided at Question 15 which have not been covered in previous chapters, as well as other comments not relevant to any one individual question. It also draws together comments relating to a number of recurring themes identified across the consultation questions.

13.2 Question 15 asked for any other comments on what should be taken into account in relation to an opt out system:

Question 15: Do you have any other comments which you think should be taken into account in relation to any Scottish opt out system?

13.3 In replying to Question 15, it was common for respondents to reiterate comments made at other questions, and to state or restate their overall views towards organ donation and transplantation and opt in and opt out donation systems.

13.4 The main themes in respondents' comments are summarised below. These often concentrated on the implementation of a soft opt out system, and the factors which respondents thought would be important to the successful introduction of such a system. The main points made included the following:

• Information and publicity about an opt out system: The introduction of any opt out system would need to be accompanied by sufficient general and targeted advertising and publicity and clear understandable information to ensure that everyone was aware of the change and its implications. This would help encourage conversations, change attitudes and create new norms. However, being able to reasonably assume that those who had not opted out had been aware of that option and had made a conscious decision not to do so would also be crucial to 'public and professional confidence' in the system, and to its ethical integrity. This would be important in avoiding the perception that organs are being taken without permission and ensuring that opting out or not is a properly informed decision.
• Opting out: The right to opt out would have to be promoted and respected, and the process for doing so would have to be simple and readily accessible. It would need to be easy for people to check their details and update them at any point.
• Ethos: Respondents stressed that patient welfare should be paramount, and that organ donation should be approached sensitively at all times.
• Safeguards: There would need to be thorough safeguards built into the system, which protected all individuals and took account of the needs of vulnerable groups, and the fact that people may change their minds. The need for an accurate and up-to-date central register of opt in / out wishes that was easily accessible to healthcare staff was highlighted. There would also be a need to maintain current practices with regard to (a) keeping the treatment of patients separate from the organ donation process in order to avoid blurring of roles, and (b) the requirement for sign off by two doctors after cardiac death. There were also calls for effective monitoring arrangements to be put in place.
• Moving towards an opt out system: There was acceptance that the introduction of an opt out system would be controversial, and suggestions that it should proceed only if there is clear public support, and clear evidence of the benefits that might be achieved. It was common for respondents to recognise the complexity of the issue under discussion in their comments, and to acknowledge the need to balance pros and cons and to weigh up benefits and risks. Respondents also stressed the need for continued dialogue with stakeholder organisations and groups likely to be affected, including those opposed to, or with reservations about, a soft opt out system. It was also suggested that any legislation should include enabling provisions to take account of future developments in medical science / practice.
• Implementation: The system would have to be implemented as part of a package of measures including staffing, workforce-wide information, guidance and training, support for families, and public promotion, and this would need proper resourcing. Respondents also offered a range of specific suggestions regarding more operational aspects of an opt out system.
• Cross- UK implications: Any implementation of a soft opt out system in Scotland would have cross-border implications. Respondents highlighted the need for advertising on both sides of the border, and some suggested that potential organ or tissue recipients in Scotland should be given priority.
• Promotion of organ donation: Regardless of the donation system in place, respondents argued for increased advertising and promotion of organ donation. There needed to be a focus on positive stories of the benefits that transplantation can bring, and the difficulties faced by those in need of transplants. People should be encouraged to consider donation from the perspective of their own family.

13.5 In addition to the points above, personal stories from families of donors and those who had received donated organs were a common feature of the comments provided by individual respondents at Question 15 and elsewhere in the consultation. These stories were offered by those in favour of a soft opt out system as well as those opposed to it. Respondents were keen to highlight the positive aspects of having been involved in a decision to authorise a donation, and the very great benefits that could result from being a transplant recipient. And, while some valued the anonymity embodied in the current system, others said they would like to have the opportunity to get feedback about what had happened following a transplant.