Organ and tissue donation and transplantation: analysis of consultation responses

9.Pre-death tests and treatments for potential donors (Q11 - Q13)

9.1 This chapter presents an analysis of respondents' views in relation to the proposals set out in the consultation paper about pre-death tests for potential donors.

9.2 The consultation paper noted that if a soft opt out system were introduced, it was necessary to determine whether deemed authorisation of donation should (or should not) allow certain tests to be carried out on a potential donor to help facilitate the donation in cases of Donation after Circulatory Death ( DCD). If such tests were not allowed, or if they were only permitted with explicit authorisation from the patient or their family, then this would in most cases prevent successful organ donation from proceeding, even in cases of deemed authorisation.

9.3 If it were agreed that such tests could proceed, they would be carried out before life-sustaining treatment was withdrawn from a DCD patient. The tests proposed were the following:

• Blood tests (for tissue typing to find a good recipient match, to identify any infections, and to test the patient's blood gases to check lung function)
• Urine tests (to check for infections)
• X-rays (to check for any undiagnosed medical problems)
• Tests on a sample of chest secretions (to test lung function)
• Tests on the heart (to check heart function).

9.4 Respondents were asked for their views in relation to all five of these tests. Two further follow up questions were also asked. First, if respondents answered 'no' regarding any of the five proposed tests, they were then asked if there were any circumstances when particular tests could be permitted. Second, all respondents were asked whether it should be permitted - if a potential donor's condition is unsurvivable and it will not cause them discomfort - for medical staff to provide medication to improve the chances of their organs being successfully transplanted.

Question 11: Which tests do you think medical staff should be able to carry out on a potential donor before they withdraw life-sustaining treatment? Blood tests? Urine tests? X-rays? Tests on a sample of chest secretions? Tests on the heart? [Yes / No / Don't know]

Question 12: If you answered no to some or all options in Question 11, are there any circumstances when particular tests could be permitted? [If the person had previously made clear they wished to be a donor / If the donor's family provided consent on the donor's behalf / Such tests should never be permitted before death]

Question 13: Where it is agreed a patient's condition is unsurvivable and it will not cause any discomfort to them, what do you think about medical staff being allowed to provide any forms of medication to a donor before their death in order to improve the chances of their organs being successfully transplanted, such as providing antibiotics to treat an infection or increasing the dose of a drug the patient has already been given?

Views on pre-death tests (Q11 and Q12)

9.5 In relation to Question 11, between 789 and 795 respondents replied in relation to each of the five proposed tests. In every case, the vast majority of respondents agreed that such tests should be able to be carried out. The proportion of respondents agreeing ranged from 84% to 93% (See Table 9.1 below).

Table 9.1: Q11 - Which tests do you think medical staff should be able to carry out on a potential donor before they withdraw life-sustaining treatment?

	Organisations		Individuals		Total
	n	%	n	%	n	%
Blood tests?
Yes	24	86%	717	93%	741	93%
No	2	7%	34	4%	36	5%
Don't know	2	7%	17	2%	19	2%
Total	28	100%	768	100%	796	100%
Urine tests?
Yes	25	89%	696	91%	721	91%
No	1	4%	36	5%	37	5%
Don't know	2	7%	31	4%	33	4%
Total	28	100%	763	100%	791	100%
X-rays?
Yes	24	86%	639	84%	663	84%
No	1	4%	62	8%	63	8%
Don't know	3	11%	60	8%	63	8%
Total	28	100%	761	100%	789	100%
Chest secretions?
Yes	25	89%	689	90%	714	90%
No	1	4%	42	5%	43	5%
Don't know	2	7%	36	5%	38	5%
Total	28	100%	767	100%	795	100%
Tests on heart?
Yes	24	86%	695	91%	717	91%
No	1	4%	40	5%	41	5%
Don't know	3	11%	30	4%	33	4%
Total	28	100%	765	100%	793	100%

Circumstances in which pre-death tests could be permitted (Q12)

9.6 Altogether 66 respondents (1 organisation and 65 individuals) answered 'no' in relation to one or more of the tests listed above. These 66 respondents were then asked (in Question 12) whether there were any circumstances when particular tests could be permitted. Just over half (53%, 35 out of the 66) said that tests could be permitted if the person had previously made it clear that they wished to be a donor. The next most common view among this group, indicated by almost a third (29%, 19 out of 66) was that such tests should never be permitted before death ( Table 9.2).

Table 9.2: Q12 - If you answered no to some or all options in Question 11, are there any circumstances when particular tests could be permitted?

Respondent type	Organisations	Individuals	Total	%
If the person had previously made clear they wished to be a donor	1	34	35	53%
Such tests should never be permitted before death	-	19	19	29%
If the donor's family provided consent on the donor's behalf	-	12	12	18%
Total	1	65	66	100%

Views relating to pre-death tests

9.7 A small number of respondents (18) provided comments in relation to carrying out pre-death tests on potential donors. In the main those commenting were organisations that were broadly in favour of an opt out system and content for tests to be carried out. Some respondents offered reasons for their views indicating that they saw authorisation of organ donation - explicit or deemed - as including authorisation to carry out any care which would facilitate a successful donation; and that the proposed tests were 'standard practice', and justified given the minimal harm involved and likely benefit achieved. More often, however, respondents offered qualifications to their agreement to pre-death tests being carried out, and made the following points:

• That the conduct of pre-death tests should be done with full respect for the potential donor and their family
• That families should be informed of the test(s) to be carried out and / or they should only be carried out with family consent
• That tests should be carried out sensitively, within set limits and with minimal invasion and interference with the individual (e.g. the test should not require moving the patient)
• That the possibility of pre-death tests being carried out should be covered in an appropriate way in public information about any opt out system.

9.8 It was also suggested that any 'rules' in this respect would have to be based on principles, with the option of updating to reflect changes in medical practices, and that thought would have to be given to the ethical considerations of carrying tests for conditions including infectious diseases such as HIV, which may have implications for family members.

9.9 There were a few comments from respondents who were opposed to or had reservations about carrying out pre-death tests. Their opposition was linked to general concerns about an opt out system, and they thought that pre-death tests should only proceed within the context of an opt in system and / or where the individual had given explicit consent to the test. There was also a specific concern about the impact on grieving families, and the possibility that increased distress may lead to the withdrawal of consent.

9.10 Additionally, a few respondents highlighted the need for any proposals for pre-death tests to be considered alongside other existing legislation and protocols (e.g. the Adults with Incapacity (Scotland) Act 2000; the Organ Donation and the Emergency Department Strategy).

Provision of transplant-related medication before death (Q13)

9.11 Question 13 asked respondents to consider whether medication could be administered to a patient before their death to improve the chances of successful transplantation - if their condition is unsurvivable and the treatment would not cause them discomfort.

9.12 Altogether, 798 respondents replied to this question - 27 organisations and 771 individuals. Both organisational and individual respondents generally agreed that medical staff should be able to provide such treatment to a donor to improve the chances of a successful transplant. However, two of the three faith groups and one of the five professional / regulatory bodies responding to this question thought that treatment just to help the donation should not be permitted ( Table 9.3).

Table 9.3: Q13 - Where it is agreed a patient's condition is unsurvivable and it will not cause any discomfort to them, what do you think about medical staff being allowed to provide forms of medication to a donor before their death in order to improve the chances of their organs being successfully transplanted?

Respondent type	They should be able to provide such forms of treatment	They should be able to provide such treatment, but only where the donor's family provides consent	They should not be able to provide any such treatment just to help the donation	Total
NHS and / or local authority	9	2	-	11
Charity, voluntary sector or patients' rights groups	5	3	-	8
Professional groups and regulatory bodies	3	1	1	5
Faith groups	1	-	2	3
Organisation total	18	6	3	27
Organisation percentage	67%	22%	11%	100%
Individual respondents	556	156	59	771
Individual percentage	72%	20%	8%	100%
Total (orgs and individuals)	574	162	62	798
Total percentage	72%	20%	8%	100%

9.13 Again, this was a closed question with no space for further comment. Those who did comment (one individual and eight organisations) did so within offline responses, or at Question 15 in the online questionnaire. The points made were similar to those at Questions 11 and 12, with respondents largely noting caveats and qualifications to their support for the proposal, in particular: the need to prioritise the welfare of the patient and the family; the need to inform the family and ensure they understood the treatment being proposed; the need for any treatment to be carried out in accordance with existing guidelines and practices; and the need for some treatments to only be given once progression to death was certain.

9.14 Those expressing opposition or reservations had ethical concerns about carrying out treatment on one person for the benefit of another, or which extended the life of someone who was not going to survive, particularly within an opt out system. The importance of compatibility with existing legislation and practices was also again noted.