The Human Tissue (Authorisation) (Scotland) Act 2019: qualitative research - October 2019 to January 2020

Key Findings

• Most NHS staff interviewed were supportive of the move to an opt-out donation system, though a majority did not predict that the change would dramatically increase authorisation or donation rates. Instead, most felt that the law change would support current practices, which were described as in line with the goals and practices inherent in an opt-out system. Many felt confident that current practices allow for the facilitation of as many appropriate authorisations of donation and organ and tissue donations possible. ICU staff members in particular illustrate that they were largely “not worried” about the move to an opt-out authorisation system.
• By majority, the NHS staff members interviewed were very supportive of organ and tissue donation generally, while also recognising that donation is a challenging experience for all involved. Across the different staff groups, support for donation was grounded in the views that:
  • Organ and tissue donation can positively impact donor families’ lives.
  • Patient choice is supported with donation as a standardised option in end-of-life care.
  • Supporting a patient’s choice to pursue donation can save, or improve, the life of a transplant recipient.
• By majority, NHS staff members felt that the implementation of the Act could bring about positive impacts to the donation system in Scotland. Staff grounded their support in the views that:
  • The legislation’s publicity campaign could positively raise the profile of donation generally, and tissue donation more specifically.
  • Publicity of the law change could prompt more people to register their wishes on the Organ Donor Register, which could make conversations about donation with a patient’s family easier.
• NHS staff members also highlighted difficult aspects of donation and concerns about the implementation of an opt-out system. The main topics raised were:
  • Some NHS staff have concerns that potential donors and their families lack understanding about what donation entails, in that the donation process can be an emotionally exhausting experience for patients’ families.
  • Many staff were clear that a high priority in the move to a deemed authorisation system is maintaining patient and patient family trust in the NHS and donation processes.
  • Some staff were concerned that a deemed authorisation will diminish the voluntary ‘gift’ connotation of donation.
  • A small number of staff worried that implementation of an opt-out system could be counter-productive to aims of increasing donation numbers for reasons centring on members of the public feeling pressured to donate and so acting in the opposite way.
• Staff felt that successful early identification and referral of potential donors, and successful authorisation processes can best be supported in a number of ways:
  • Greater visibility of Specialist Nurses for Organ Donation (SNODs)^[1] and Clinical Leads for Organ Donation (CLODs)^[2].
  • Good relationship between a SNOD and clinical staff in charge of patients and who speak with patient families.
  • Consultants feeling that the rapport they have built with families is appreciated by SNODs as donation processes progress.
  • Increased and earlier education of staff involved in ICU (Intensive Care Unit) and ED (Emergency Department) settings about donation, such as within NHS sites via SNOD/CLOD/TDC activities and within medical training of younger consultants.
  • The experience of being a part of a ‘successful donation’ process can buoy staff confidence.
  • Getting positive feedback from NHSBT (NHS Blood and Tissue) about practice, such as rates of missed opportunities to refer to SNODs and letters from donor and transplant families.
• NHS staff identified key items to address in trainings/events aimed at NHS staff about the law change^[3]. These key items included:
  • Clarification of the legal stipulation of ‘deemed authorisation’.
  • A number of staff expressed an interest in about learning about the key messages in the public marketing campaign.
  • Consultants, in particular ICU consultants, were interested in ways in which more communication between ICUs could be supported so that ‘best practices’ and ‘problem solving’ techniques regarding donation developed within different health boards/other sites could be shared across different teams.
  • A large number of consultants suggested that signposting that ‘SNODs are the experts – it’s best to always refer to them when in doubt’ alongside case studies where working with SNODs has proved beneficial would be helpful in creating consistent inclusion of SNODs across sites. In line with this, a smaller number of consultants requested clarification about research showing that SNODs ‘in the room’ during end-of-life conversations correlates with higher authorisation rates, as a few mentioned conflicting evidence on this finding.
  • Consultants hoped for greater clarity on ‘duty to inquire’^[4] stipulations, expressing varying levels of confidence in their understanding of what this practice entailed and how it would affect families in practice. Some staff suggested the inclusion of a different ‘duty to inquire’ scenarios in the training sessions to remain confident that families’ wishes would be taken into account in authorisation conversations, and that trust in the ICU/NHS would not be damaged by deemed authorisation conversations.
  • ED and ICU consultants and nurses also highlighted the need for greater awareness raising of tissue donation among ED staff, with ‘clear, simple guidelines about how to speak with families’ of the recently deceased to increase ED staff’s confidence in raising this topic.