Organ and tissue donation and transplantation: analysis of consultation responses

11. Health service practices (Q16 and 17)

11.1 This chapter discusses respondents' views about two possible initiatives which could increase the number of people considered as organ or tissue donors by influencing practice within health care settings. These initiatives were: (i) the issuing of Chief Medical Officer ( CMO) guidance to encourage clinicians to refer dying or recently deceased patients for consideration as potential organ or tissue donors, and (ii) the introduction of a requirement to involve specialist staff in discussions with families about organ donation. Questions 16 and 17 invited views on these initiatives:

Question 16: What do you think about providing Chief Medical Officer ( CMO) guidance to encourage clinicians to refer almost all dying or recently deceased patients for consideration as a potential organ or tissue donor?

Question 17: What do you think about making it a procedural requirement for clinicians to involve a specialist nurse for organ donation, tissue donor coordinator or another individual with appropriate training in approaches to families about donation, wherever that is feasible?

Issuing of CMO guidance (Q16)

11.2 The consultation paper set out information and evidence on the current processes for considering potential organ donors, referral to specialist donation staff, and the incidence of 'missed' referrals (i.e. cases in which clinicians do not refer potentially suitable patients). Although referral rates have increased over recent years, Question 16 asked for views on whether CMO guidance might be helpful in bringing about further improvement.

11.3 A total of 792 respondents answered Question 16 - 760 individuals and 32 organisations - with almost nine out of ten agreeing that CMO guidance should be provided. (See Table 11.1.) Organisations were slightly less likely than individuals to agree with the proposal. Although only one organisation - a faith group - disagreed with the proposal, organisations were more likely to select 'other' and go on to explain their views.

Table 11.1: Q16 - What do you think about providing Chief Medical Officer ( CMO) guidance?

Respondent type	CMO guidance should be provided	CMO guidance should not be provided	Other (please specify)	Total
NHS and / or local authority	10	-	2	12
Charity, voluntary sector or patients' rights groups	9	-	-	9
Professional groups and regulatory bodies	4	-	2	6
Faith groups	3	1	1	5
Organisation total	26	1	5	32
Organisation percentage	81%	3%	16%	100%
Individual respondents	670	57	33	760
Individual percentage	88%	7%	4%	100%
Total (organisations and individuals)	696	58	38	792
Total percentage	88%	7%	5%	100%

11.4 A total of 76 respondents - 59 individuals and 17 organisations - provided additional comments on Question 16.

11.5 Those who supported the issuing of guidance gave two main reasons for their views:

• They felt that it was important that cases were passed on to specialist staff as not all clinicians were well placed to make decisions about organ donation, and they thought that CMO guidance would provide clarity about the referral process and the role of specialist staff, and would support and encourage good practice in this area of work. The potential benefits of a clear 'trigger' for referral were noted.
• They believed that all healthcare staff had a role to play in supporting organ donation and transplantation, and in facilitating the wishes of potential donors. As such, they thought that CMO guidance could be useful in emphasising this role, raising awareness about organ donation among healthcare staff, and contributing to education and training among the workforce in general.

11.6 It was, though, common, for respondents to qualify their support for the issuing of CMO guidance. Comments focused on the 'framing' of any guidance; the possible impact on the overall approach to organ donation; and possible resource implications. On each of these, respondents made the following linked points:

• Most frequently respondents commented on the way the proposed guidance might be framed (e.g. in terms of referring ' almost all dying or recently deceased patients for consideration as a potential organ or tissue donor'). They thought that any guidance should focus on ensuring that all appropriate cases were referred to specialist staff. The guidance, therefore, needed to be framed in such a way as to allow clinical staff to consider the circumstances in any individual cases and exercise professional judgement in deciding whether to make a referral. It was argued that to do otherwise would place unreasonable demands on healthcare resources (specialist staff, ITU staff and facilities, etc.), and would also increase stress on families as not all cases would ultimately prove suitable for donation.
• Respondents were also concerned that CMO guidance did not unintentionally bring about a shift in the general approach towards organ donation. They stressed that the guidance should continue to respect the rights of individuals to make their own decisions about organ donation and should not result in pressure being put on individuals or families by suggesting a presumption in favour of donation. Respondents were clear that families should continue to be dealt with sensitively - a specific suggestion was that referrals should only be made after families had been made aware of a terminal prognosis.
• Additionally respondents were concerned about the resource implications of complying with CMO guidance. As noted above, some respondents were concerned that inappropriate referrals would increase the burden on specialist and non-specialist staff and facilities, and would represent a waste of resources; others simply called for any new guidance to be appropriately resourced.

11.7 In addition, a few respondents who nevertheless indicated support for the idea of CMO guidance also queried (i) whether it was really required given existing good practice in this area, and (ii) the impact the guidance would have.

11.8 A number of more specific suggestions were made by those who supported the introduction of CMO guidance. These included that:

• The guidance should be part of a wider package of measures designed to facilitate organ donation.
• Written guidance should be accompanied by visible CMO leadership on this issue.
• Individual staff should be given the right to opt out of the referral process.
• The guidance should be publicised so that families would be aware of practice.
• The impact of any guidance - on the number of successful donations made and on the 'ethos' of the organ donation system - should be monitored, and that non-referrals should be reviewed so that lessons could be learned at a local level.

11.9 Those who did not think CMO guidance should be issued often made very similar points to those made by those who supported the guidance. For this group, however, the qualifications noted above were articulated as reasons why guidance should not be introduced. The following points were particularly emphasised by this group:

• They felt that the proposed CMO guidance was unnecessary or unhelpful. They thought that effective good practice was already followed in relevant healthcare settings, or that it would be inappropriate to refer all (or nearly all) cases. These respondents stressed the importance of exercising professional judgement - taking account of the full medical and family circumstances - in making referrals, and that any guidance which required or encouraged additional referrals would risk undermining trust in the transplant system, and would place an unnecessary burden on specialist resources.
• They had 'ethical' concerns about the guidance, suggesting that it could give too much power to the medical profession, put pressure on families and undermine the principle of organ donation as a voluntary 'gift'. These respondents were keen that a personal decision not to sign up to the ODR should be respected. It was also suggested that the introduction of guidance could in fact be counterproductive in alienating both healthcare staff and members of the public.
• They were concerned that adhering to the guidance would represent a poor use of resources for minimal gain.

11.10 However, among those who did not think that CMO guidance should be issued, there were some who made it clear that they did not support the guidance as described in the consultation paper - this group argued instead for more focused guidance which would target cases involving patients who were on the ODR or cases where donation was a realistic prospect.

11.11 Around half of those commenting on this proposal did not indicate clear support for or opposition to the proposal (this includes respondents who ticked 'other' at Question 16). The points made by this latter group largely reflected the qualifications and concerns highlighted by those indicating support or opposition to the issuing of CMO guidance, and are therefore covered in the sections above. A small number of additional points were, however, made by this group, as follows:

• The proposed guidance was addressing the wrong issue - CMO guidance would be better directed at encouraging healthcare professionals to encourage people to sign up to the ODR.
• The proposed guidance should not be necessary if hospitals had effective protocols and practices in place.
• Further evidence was needed about the scope to increase successful donations from missed referrals.
• The proposed guidance would not be practical in all settings (e.g. in the community, or in dealing with terminally ill cancer patients).
• The impact the guidance would have was unclear.

11.12 It should be noted that the comments made indicated that respondents had not all interpreted this question in the same way. In particular, some respondents thought the proposal presumed the continuation of an opt in system, while others thought it was intended to apply to a possible new opt out system for organ donation. Among this latter group of respondents, some were opposed to the guidance as they were opposed to an opt out system, while others did not think the proposal was relevant to an opt out system.

11.13 Finally, among individuals in particular, there was uncertainty about how such guidance would sit with either an opt in or opt out system, and what difference it would make.

Involving specialist staff in approaches to families (Q17)

11.14 The consultation paper presented information on the involvement of specialist staff in discussion with families about possible organ donation and noted the positive impact such involvement had on authorisation. Question 17 asked respondents for their views on whether it should be a requirement to involve specialist staff in approaches to families.

11.15 A total of 797 respondents - 765 individuals and 32 organisations - answered Question 17. Table 11.2 shows that around four-fifths of all respondents agreed that this should be a requirement, with a similar pattern of responses across both individuals and organisations. Among organisations, charities were unanimous in their support for the proposal, with a majority of all other types of organisations also indicating support.

Table 11.2: Q17 - What do you think about making it a procedural requirement for clinicians to involve a specialist nurse for organ donation, tissue donor coordinator or another individual with appropriate training in approaches to families about donation, wherever that is feasible?

Respondent type	This should be a requirement	This should not be a requirement	Don't know	Total
NHS and / or local authority	8	2	2	12
Charity, voluntary sector or patients' rights groups	9	-	-	9
Professional groups and regulatory bodies	4	1	-	5
Faith groups	5	1	-	6
Organisation total	26	4	2	32
Organisation percentage	81%	13%	6%	100%
Individual respondents	596	96	73	765
Individual percentage	78%	13%	10%	100%
Total (orgs and individuals)	622	100	75	797
Total percentage	78%	13%	9%	100%

11.16 There was no open question asking respondents for additional comments on this proposal. However, a small proportion of respondents (around 20 in total), provided relevant comments at Question 16 or Question 15, and these comments form the basis of the analysis presented below. It should be noted that there was a good deal of cross-over in the comments made by those who agreed and those who disagreed with the proposal.

11.17 In general respondents who supported the proposal did so because they believed that involving specialist staff in discussion with families about organ donation increased the chances of authorisation being granted, and had a positive impact on the wellbeing of families. Some referred to evidence in support of this stance, while others said that doing this was in line with existing good practice, and with the recommendations of existing guidance, and that a new requirement would provide further reinforcement of this. It was also suggested that, while all staff had a responsibility to facilitate the wishes of a dying person, clinical staff were not always best placed to undertake sensitive discussions with families.

11.18 However, respondents often qualified their support for the proposal, as follows:

• The requirement would have resource implications which needed to be considered. In particular, it was suggested that the requirement should be accompanied by a duty for a SNOD to be available within a certain timeframe. Particular implications for more rural areas were also noted.
• The emphasis should be on involving a SNOD or other person with appropriate knowledge and training 'where feasible ' - the fact that a SNOD was not available should not be seen as a reason for not discussing organ donation with families. (Other respondents, however, highlighted the apparent contradiction in having a 'requirement' which only needed to be fulfilled 'where feasible'.)
• The most appropriate person to be involved in discussions with the family would depend on circumstances but may not always be a SNOD or other organ donation specialist.

11.19 Those who did not support the introduction of a new requirement did not often comment on this issue specifically, but in most cases they voiced concerns about demands on SNOD staff. One respondent, however, argued that the evidence did not in fact show a positive link between SNOD involvement and family authorisation for organ donation - they referred to research carried out by John Radcliffe Hospital which found no increase in consent rates for organ donation when discussions with families were conducted by a clinician and a specialist as opposed to just a clinician.

Other comments

11.20 Across both Questions 16 and 17, there were a number of other more general points made. These included the following:

• That a package of measures was required to improve the health service infrastructure with regard to organ donation and transplantation
• That there were other, more important issues which might be addressed within the health service which would increase donation and transplantation rates - these included addressing the time it could take to process the offering and accepting of donated organs, and the variability in acceptance and refusal by individual transplant units, given that delays in confirming use can be a factor in withdrawal of family authorisation
• That it was important to learn from cases in which potential donors were not referred to specialist donation staff.