Organ and tissue donation and transplantation: analysis of consultation responses

5. Taking account of the views of family members (Q3)

5.1 This chapter presents respondents' comments on taking account of the views of family members.

5.2 In the current opt in system, the donation is discussed with family members before a donation proceeds, even in cases where someone has stated a wish to be an organ donor. Although there is no statutory requirement to give precedence to the views of family members in this situation, a donation would not proceed if family members were opposed to it. The consultation explained that the support of the family is key to providing background information on the potential donor to enable the transplant surgeons to decide whether organs or tissue are likely to be safe for transplantation. Question 3 (a tick-box question with no space provided for additional comments in the online questionnaire) asked for views on whether a donation should or should not proceed in a situation where families oppose a donation even though the individual has indicated their wishes to be an organ donor:

Question 3: Where someone has joined the Organ Donor Register ( ODR) or indicated in another way that they wish to donate, what do you think should happen if the potential donor's family opposes the donation?

5.3 The chapter presents the response to Question 3 before going on to provide an analysis of relevant comments. Although there was no follow-up question asking for additional comment, respondents often did explain their answer to Question 3 (many doing so at Question 15) - organisations were particularly likely to do so. In addition, taking account of family views was a commonly raised issue at Question 2 (104 respondents discussed this issue at Question 2 - see Chapter 4). The analysis of views presented below therefore draws on comments made across a range of questions with regard to the role of families in authorising organ donation following the death of an individual.

5.4 A total of 800 respondents answered Question 3 - 772 individuals and 28 organisations. Table 5.1 shows that there was a clear difference in views between organisational and individual respondents. The majority of individual respondents (around four-fifths) were in favour of proceeding with the donation. In contrast, most organisations (around two-thirds) thought that the donation should not proceed. Among organisations, there were, though, some differences: most NHS / local authority and professional groups thought the donation should not proceed, whereas charities, voluntary sector or patients' rights groups and faith groups were split in their views.

Table 5.1 - Question 3: Where someone has joined the Organ Donor Register ( ODR) or indicated in another way that they wish to donate, what do you think should happen if the potential donor's family opposes the donation?

Arguments in favour of adhering to the individual's wishes

5.5 The role of the family in authorising organ donation in the current opt in system was a key issue discussed at Question 2 which asked for views on how the current opt in system might be changed if an opt out system were not introduced. Respondents often simply said that the views of the individual should always take priority, that a family should not be able to 'veto' the stated wishes of an individual, or that wishes expressed via the ODR or in other ways should be regarded as being legally binding. Some specifically suggested that there should be no requirement to consult with or seek authorisation from family members in the organ donation process. Individuals were particularly likely to offer this view. It was common among this group for respondents to say that, should an opt out system not be introduced, they would like to see the current opt in system changed so that family members could not overrule the wishes of individuals.

5.6 Organisational respondents who indicated support for adhering to the individual's wishes were less likely to express their views in black and white terms, but rather emphasised that the wishes of the potential donor should be given precedence, even if the family objected, if that individual's views were clear and / or they had made their views known in writing.

5.7 A few respondents provided fuller explanations of their views, and thought that there were moral, ethical or legal reasons for respecting the views of the potential donor, particularly where they could be said to have given 'informed consent'. It was pointed out that to do otherwise gave families rights over the individual which they would not have had if the person were still alive, or did not have in other matters (e.g. in relation to a person's will). Others pointed out that individuals and their families did not always share the same views or beliefs, and that allowing families to overrule the wishes of an individual might mean that, in death, an individual was subject to views or beliefs which they, themselves, may not have agreed with. Others commented that individuals may be estranged from their family, and it would not therefore be right for the families' views to take precedence.

5.8 Some recognised that this was inevitably a very difficult time for families, but did not think that that gave families the right to overturn a decision made by the potential donor. Indeed some thought that bereaved families were not well placed to make a decision on this issue because of the highly emotional situation they were in. It was also argued that families often took comfort following the death of a loved one from the fact that others had benefitted from an individual's organs, and sometimes regretted not agreeing to a donation proceeding.

5.9 The following points were also made, all on a less frequent basis:

• Some respondents argued that there was no legal basis for allowing families to overrule the views of individuals in the current opt in system. (There was also a related call for clarity on this issue.)
• Some thought that respecting the wishes of individuals was important for the integrity of the donor system.
• It was suggested that public opinion favoured precedence being given to the wishes of the individual.

Arguments in favour of allowing families to override the wishes of individuals

5.10 As shown in Table 5.1, organisational respondents were more likely than individuals to think that a donation should not proceed if it is opposed by the donor's family. Organisations were also more likely than individuals to explain the reasons for this view. Across both groups however, respondents thought that proceeding with a donation against the wishes of a family would:

• Exacerbate the distress of families involved in such situations, and compromise the duty of care which healthcare professionals had to families as well as patients
• Risk alienating families, and damaging public confidence in the medical profession and public support for organ donation and the organ transplantation programme
• Risk patient safety as family cooperation was important in establishing medical history and suitability to proceed with a donation.

5.11 More generally, some thought that families had a right to express their views, and that it was appropriate for families to be involved in decisions about organ donation. Indeed, it was argued that to do otherwise would be out of step with expectations within society. It was also suggested that proceeding with a donation in these situations would have little impact on overall donations, and that there were other, more effective ways of achieving the objective of increased donations.

5.12 Some thought that the stated views of the individual should generally take priority, but they highlighted specific circumstances where they thought that the views of families should be given precedence. This included situations where proceeding with a donation would cause extreme distress to the family (e.g. because of religious beliefs), or where the family believed that the person had changed their mind about wanting to be an organ donor - it was noted that family members were the people most likely to know this - although there was a view that proof of a change of heart should be required to overturn the stated wishes of an individual.

5.13 Some respondents - organisations in particular - did not think that donations should proceed against the wishes of families, but did think that every effort should be made to encourage families to respect the wishes of individuals, and to support families as they made their decision on this difficult issue. It was suggested that discussions should focus on whether families had any reason to believe that the individual's stated views were no longer valid, rather than being presented as an opportunity for families to make their views known. It was further suggested that families should be explicitly informed of the wishes of the potential donor; should be encouraged to respect stated wishes; should be informed of the legal framework which does not require family authorisation; should be made aware of the positive effect of transplantation; and should be required to formally sign their decision to overrule the wishes of the deceased as a way of highlighting the significance of such a decision. (It was noted by some that such practices were, in fact, already being followed.)

Other comments

5.14 A range of further points were made by respondents in discussing the issue of taking account of the views of families. These included the following:

• Situations in which families oppose donation were complex and there was a need to balance the importance of respecting the views of the individual with the need to consider the wellbeing of the family and the likelihood of significant distress.
• Professional judgement played a part in decisions regarding organ donation, and there was existing guidance for healthcare staff which was relevant to dealing with this situation.
• It was important that specialist organ donation staff and appropriately senior staff were involved in discussions with families.
• Different factors were at play in situations where the donor's wishes were not clear - indeed, it was noted that a significant proportion of donations currently proceed on the basis of family authorisation in the absence of clear information on the views of the potential donor. A few respondents suggested that, in this way, the proposed opt out system was in fact little different to the current system. While some endorsed this situation, others felt that this was not acceptable in that it risked violating the rights of individual to have their (unknown) wishes respected. Such respondents advocated the importance of explicit authorisation by individuals.

5.15 Others discussed the wider organ donation system and made the following points:

• Publicity campaigns should emphasise the importance of individuals discussing their wishes with their family as a way of ensuring that these are not overruled.
• The process of joining the ODR might be changed in some way to avoid the situation of families overruling the wishes of individuals. Suggestions included following:
  • Making explicit opt in to the ODR legally binding - it was argued that this would reduce stress on bereaved families by avoiding the situation whereby they are asked to authorise a donation.
  • Amending the process for signing up to the ODR so that it incorporates an indication of family awareness / family authorisation, or a requirement for witnesses (one of whom could be a family member).
  • Including a notification in the ODR sign up process to ensure people are aware that their family will be asked to authorise a donation in the event of their death.
  • Regular updating of ODR entries.
• Research should be undertaken to investigate the reasons families overrule the wishes of individuals and to explore ways of reducing the likelihood of this happening, as well as to find out more about the longer term feelings of families involved in organ donation discussions with various outcomes.