Organ and tissue donation and transplantation: analysis of consultation responses

10.Involvement of authorised representatives (Q14)

10.1 This chapter discusses respondents' views on the option to allow people to nominate a representative (or proxy) to make decisions for them about donation when they die. It is currently possible to do this in England and Wales, but not in Scotland.

10.2 The consultation paper noted that if a person is capable of nominating a representative to make this decision for them, then, in most cases, the individual would also be able to decide for themselves whether or not they wished to donate (and could register that preference). Thus, it was unlikely that such a representative would be needed. Involving proxies in the decision-making process could also result in making the process more complex and lengthy. Finally, it was noted that very few people in England and Wales had appointed such a representative as of 31 March 2016, and that they had not yet ever been used. Therefore, the Scottish Government proposed not to include provision for authorised representatives in any revised legislation; however, respondents were invited to give their views on this issue.

Question 14: What do you think about allowing people to appoint one or more authorised representatives to make decisions for them? [This should be allowed / This is not necessary / Don't know]

Question 14a: If you think this should be allowed, in what circumstances do you think an authorised representative would be useful?

10.3 Altogether, 804 respondents answered Question 14 - 33 organisations and 771 individuals. There were different views among organisations and individuals about whether people should have the option to appoint one or more authorised representatives to make decisions for them about donation when they die. A small majority of organisations (52%) said that this is not necessary, while a small majority of individuals (53%) said that this type of proxy authorisation should be allowed ( Table 10.1).

Table 10.1: Q14 - What do you think about allowing people to appoint one or more authorised representatives to make decisions for them?

10.4 If respondents indicated that provision for authorised representatives should be allowed, they were asked a follow-up question about the circumstances in which an authorised representative might be useful.

10.5 Altogether, there were 305 responses to this question. This includes 33 from those who answered 'this is not necessary', 12 from those who answered 'don't know' and two who did not tick any of the choices at Question 14. The comments made by these latter groups are discussed at the end of this section. However, the comments of those who thought that authorised representatives should be allowed are discussed first.

Circumstances in which an authorised representative might be useful

10.6 Respondents identified a range of circumstances (some of them discussed in the consultation paper) where an authorised representative might be useful. These included:

• Where an individual was in unstable social circumstances (e.g. breakdown in family relationships; a child in and out of local authority care; those in long term hospital care; where the individual has no family; those in custody; etc.)
• Where the individual was an adult with incapacity - however, some respondents commented that Power of Attorney arrangements could (and may already, in some cases) fulfil this purpose
• Where they would prefer not to burden their family with the decision about donation
• Where they believe their family is likely to oppose their wishes to donate.

10.7 This group of respondents also identified some benefits of appointing a proxy for this purpose:

• It would provide peace of mind to the donor: Having an authorised representative might be particularly important for certain ethnic or religious communities. For example, some groups may have no objection to organ or tissue donation, and may choose to opt in, but would have very specific concerns about the manner in which the organs were removed from the body. Having an authorised representative to communicate those issues and ensure that the donation was carried out in the correct manner would be helpful.
• The authorised representative would be someone trusted by the donor: Some respondents thought that there could be cases where an individual did not feel comfortable making a decision about organ donation themselves, and so had not expressly opted in or out (thus a deemed authorisation situation). In such cases, or in any case where the individual had not made their wishes clear, it might be preferable to have someone other than a family member, who was trusted by the individual, to make the decision for them.
• Helps to clarify the person's wishes: Other respondents thought that the process of appointing a proxy would in itself help the individual to clarify their own wishes.

10.8 The following views were also expressed by respondents in this group (usually by just one or two individuals):

• In relation to the mechanism for appointing an authorised representative, there was a view that any individual taking on this role must be explicitly and legitimated appointed and authorised by the individual to ensure there is no uncertainty at the time of the individual's death. However, there was also an alternative view that the arrangement could be a rather informal one based on verbal instruction alone.
• Part of the role of the authorised representative should be to ensure that the deceased person was aware of the authorisation system, had not objected to having his / her organs donated, and had recently shared their wishes with the authorised representative.
• There may be benefit in allowing people to appoint two representatives (as in England and Wales).

Views of other respondents

10.9 Respondents who thought that the provision of authorised representatives was not necessary, who did not know if it was necessary, or who did not indicate a view made the following points:

• Some had no objection in principle in allowing people to appoint authorised representatives, but agreed with the consultation paper that it was likely to be an unnecessary and potentially very time-consuming complication.
• A concern about providing for the nomination of authorised representatives is that it potentially complicates messages to people about how the opt out system would work. There was a view that in order for an opt out system to work, the messages to people must be clear and must be able to be understood.
• There were concerns about the possibility of representatives being chosen, and then relationships changing over a number of years, without the relevant paperwork being updated.
• Some believed that, irrespective of whether a person had appointed a representative, medical staff would still wish to involve the person's family in the decision, and where there was conflict between the two, it was unlikely that the donation would proceed.
• Some respondents commented that they could not form a view on this question without further information about how the use of authorised representatives would work in practice.

10.10 There was also a general view among this group that if a person had the ability to appoint a representative to make this decision for them, they should simply make the decision in their own terms by expressly opting in or opting out. Some were unclear about the purpose of such a representative if an individual had expressly made their wishes known. Some went further and argued that in an opt out system, the burden of responsibility for opting out lies entirely with the individual, and other individuals (whether appointed representatives, or family members) should not be able to prevent a donation going forward.