Organ and tissue donation and transplantation: analysis of consultation responses

1. Introduction and background

1.1 Between 7 December 2016 and 14 March 2017, the Scottish Government undertook a public consultation to invite views about possible ways of increasing the numbers of successful organ and tissue donations. ^[1] This report presents the findings from an analysis of the responses to the consultation.

Policy context

1.2 Organ and tissue transplants can save people's lives and / or substantially improve their health and quality of life. Although Scotland has the highest proportion of people registered as organ donors in the UK (45%), there is still a shortage of organs, and around 500 people are waiting for a transplant at any one point. The Scottish Government is keen to explore ways of increasing the number of organs and tissue available for transplantation, particularly given that fewer than 1% of deaths in Scotland occur in circumstances where the person is able to donate their organs.

1.3 At present, in Scotland, in order to become an organ or tissue donor, a person must either express a wish to do so or one of their relatives can authorise donation on their behalf. This system is known as ' opt in'. In many cases, individuals make their wishes known by joining the NHS Organ Donor Register ( ODR). If an individual has not given authorisation and they could be a potential organ donor, their nearest relative will be asked to make a decision in the event of the individual's death. Having such sensitive conversations with families at the time an individual dies is very difficult, and, understandably, many families find it impossible to consider such requests with the urgency required at a time when they may be in shock or grieving. In such circumstances a significant minority of families (37% in 2016-17) do not give authorisation, although survey evidence suggests that the majority of people in Scotland support donation. ^[2]

1.4 Additionally, timely referral to a specialist nurse for organ donation ( SNOD) or a tissue donor coordinator by the clinical team caring for a potential donor is an important step in allowing a donation to proceed, as it allows specialist transplant staff to assess the suitability of the patient for becoming an organ or tissue donor, and to be involved in discussions with the patient's nearest relative. Research shows, however, that this does not always happen. Potential donors are not referred by the clinical team for a variety of reasons, and specialist staff are not always involved in discussions with families.

1.5 Thus increasing the number of people authorising donation, and increasing the number of referrals of potential donors by medical teams are both important way of maximising the number of organs and tissues available for donation. The current consultation explores how this might be done, and invites views on two main approaches which might be used to increase the number of successful deceased organ and tissue donations:

• By increasing the number of potential donors, primarily by introducing a system whereby a person is regarded as having authorised donation, unless they have expressed a wish not to be a donor - this is called a 'deemed authorisation', or 'opt out' system. A soft opt out system builds on deemed authorisation, but also incorporates additional safeguards and conditions which might include seeking authorisation from a person's nearest relative. Such a system has recently been introduced in Wales, where the Human Transplantation (Wales) Act 2013 came into effect on 1 December 2015. The consultation paper makes it clear that the Scottish Government is willing to consider a soft opt out system if this can be developed in a way which will not harm trust in the NHS or the safety of transplantation, but it also invites views on ways that the current opt in system might be made more effective.
• By increasing the number of potential donors referred to a SNOD or a tissue donor coordinator. The consultation recognises the importance of this step in the process and proposes two ways of increasing such referrals: (i) by the issuing of Chief Medical Officer ( CMO) guidance to encourage clinicians to refer dying or recently deceased patients for consideration as organ and / or tissue donors, and (ii) by making it a requirement to involve a specialist nurse or other individual with appropriate training in discussions with families about authorising donation.

The consultation

1.6 The consultation paper outlined current procedures regarding organ and tissue donation, and the options which might be considered in order to increase donations. The consultation paper was split into two sections. Section 1 considered ways of increasing potential donors, and had a particular focus on the option of a soft opt out system. Section 2 considered ways of increasing referrals by clinical teams to specialist transplant teams when they are caring for a dying or recently deceased patient. The consultation contained 18 questions (including 5 multi-part questions) which were a mix of closed (tick-box) questions and open questions asking respondents to provide written comment. Questions 1 to 15 asked for views on options for increasing potential donors, and Questions 16 and 17 asked for views on increasing referrals to specialist transplant teams. A final question, Question 18, asked for views on equality issues.

1.7 The consultation was launched by the Minister for Public Health and Sport on 7 December 2016. It was made available on the Scottish Government's online consultation hub, and was also sent to over 260 stakeholder groups. Respondents were able to respond to the consultation online or they could submit written responses by email or post.

About the analysis

1.8 Both quantitative and qualitative analyses of the responses were undertaken, with the emphasis on the latter. Frequency analysis was carried out in relation to all the closed questions and the results of this are presented in tables throughout the report. In relation to the qualitative analysis, analytical frameworks were developed for each of the questions. The focus of analysis was on identifying areas of agreement and disagreement between different groups of respondents, and the main themes and the full range of views submitted in response to each of the consultation questions. If respondents held different views in relation to a particular closed question, wherever possible, the reasons given for those different views were further explored in the qualitative analysis.

1.9 Not all respondents answered all questions, and some made comments in relation to a question without ticking a response at the relevant closed question. Where a respondent's answer to a closed question was clear from the comments they made, the response to the closed question has been imputed and included in the quantitative tables. Irrespective of whether it was possible to impute a response to the closed question, all respondents' comments were included in the qualitative analysis.

1.10 This report aims to provide a balanced account of the views submitted by respondents. However, the findings only provide a relatively high-level summary of a range of more detailed responses. Furthermore, given that those who took part in the consultation were self-selecting, the findings should not be taken as representing the views of the wider population.

About the report

1.11 This report contains 13 chapters. Chapter 2 describes the respondents and the responses received. Chapters 3 to 13 present the findings of the analysis for each of the consultation questions. Annexes to the report contain a list of organisational respondents to the consultation, and details of the number of responses to each question.