Scotland

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BMA Scotland briefing paper

A ‘soft’ opt-out system

Repeated surveys show that the majority of the public say that they support organ donation. Up to 90% of people support organ donation but, for various reasons, less than half of Scotland’s population is registered on the NHS Organ Donor Register (ODR).

We believe that genuine choice over organ donation can be facilitated through a soft opt-out system whereby adults – who have been well informed of the options – can choose to opt-out of organ donation during their lifetime, rather than having to opt into donation, as is the status quo. A culture in which donation is discussed more openly and perceived as the norm would fit better with what most people claim to support. Rigorous safeguards are imperative to such a system, in order to ensure genuine choice is protected. We would emphasise the need for a wide-ranging publicity campaign to inform the public prior to any legislative change and we believe relatives should retain a role in the organ donation process.

This is how we envisage that a soft opt-out system would work:

  • Before the new system is introduced there would be extensive and high profile publicity to ensure all members of society were aware of the forthcoming change and to encourage them to consider their own wishes about donation after their death.
  • A database would be established with mechanisms for people to easily and quickly opt out if that is their wish.
  • Once implemented, when someone over the age of 16 dies and donation is a possibility, the opt-out register must, by law, be checked and if the individual had opted out, donation could not proceed.
  • As an extra safeguard, if the individual had not opted out, family members would be asked if they were aware of any unregistered objection.
  • If the relatives were not aware of any objection, they would be informed that donation would proceed. There would, however, be scope not to proceed if it became evident that to do so would cause severe distress to the relatives.

Those under the age of 16 and those who have not had capacity since the system was introduced, and therefore would not have had the opportunity to opt out, would be excluded from the system and specific authorisation from the young person, person with parental responsibility or the nearest relative would to be required.

 

Ethical and practical considerations

Any system that has the potential to increase the number of organs available for donation, and therefore the number of lives that can be saved, has strong moral arguments to support it but there are other factors that need to be taken into account.

The central principle behind opt-out is that the default position should be to save lives. If people do not object, it is right that their organs should be used for the benefit of others. That is not to say that we have a moral obligation to donate, or that we have no interest or rights in relation to what happens to our bodies. Rather, if individuals have not indicated any objection to donation, it is appropriate to assume they would want to act in an altruistic manner and help others.

 

The gift of donation

The organ donation system in Scotland is based on altruism and the notion of a gift relationship.

The ‘gift’ element of donation can be important to those families who give authorisation to donation, and to those who receive organs. It has been suggested that if the individual does not personally, or via his or her family, pro-actively ‘volunteer’ the organ, it is no longer a gift. Under an opt-out system, however, individuals go through exactly the same thought process to decide not to opt out as they do in deciding to opt in. Given the option to donate or not, a decision is made to act to help others, by not opting out of donation; this is no less of a gift than an organ donated under an opt-in system. Undoubtedly some will think more about this than others and some people will choose not to think about it at all.

Under an opt-out system, there is no way of knowing which of those who have not opted out would have taken positive steps to donate under an opt-in system. Some people will see the loss of this positive action to donate as a cause for concern. Whilst it may be seen as preferable for individuals – or their families – to take active steps to give organs, we need to acknowledge that under the current system, organs are being lost that could have saved lives when that would not have been the wish of potential donors. In the BMA’s view families should be encouraged to see the whole process of organ donation as a ‘gift’ which has the potential for very significant benefit to another person.

 

Autonomy

A central question around opt-out systems for organ donation is whether they enhance or reduce autonomy. Those who oppose such schemes suggest that the decision is being taken out of the hands of individuals and the government is taking and using organs without authorisation. Individuals, and their families, are thus denied the right to make a personal decision and so their autonomy is undermined. It is important to recognise, however, that under an opt-out system individuals have exactly the same decision to make – to donate or not to donate – and so the decision clearly still rests with the individual.

 

Respecting the deceased’s wishes

In practice, although the current system is referred to as an opt-in system, the majority of people who donate organs have not given authorisation. In 2010/11, 33% of donors in the UK had signed up to the Organ Donor Register; in the remaining cases authorisation was given by family members. Some family members will have known what their relative wanted from previous discussions, but the majority of decisions will have been based on their ‘best guess’ of the views of the deceased. This makes the process particularly difficult for families who may struggle to make the ‘right’ decision at a time of immense pressure and distress. It is possible that in some of those cases where the families gave authorisation, the individual – had he or she expressed a view – might have objected to donation, and vice versa. Under an opt-out system this is less likely to happen because there is a formal mechanism for those who oppose donation to record their wishes and for ensuring that those wishes are respected. The publicity that will precede the change is also very likely to increase discussions within families about donation. Where the individual’s views are known the situation is less difficult for the family.

 

Public support

One of the major concerns about introducing an opt-out system is the risk of a backlash; the fear that people will object to the new system and opt out of donation as a means of protest. There is a precedent for this. Brazil introduced an opt-out system in 1998 without public support and against a background of public mistrust in the government. The system had to be abandoned after large numbers of people opted out. The BMA has always argued that an opt-out system must have public support before it is introduced. If there is widespread support for the system, the chance of people opting out in protest is significantly reduced; other countries that have introduced such systems have not experienced this problem.

 

Implementation

The success of an opt-out system depends to a very large extent on the way in which it is implemented. It is essential that there is widespread, high-profile publicity, well in advance of the new system coming into effect. Particular efforts must be made to contact hard-to-reach groups and the publicity will need to be repeated at regular intervals. There must be quick, simple and convenient ways for people to opt out, if that is their wish, and a robust and accurate database must be maintained. The database would need to give people the option of opting out of donating different types of organs, such as heart or corneas, or the option to opt out completely. This could be based on the current opt-in register which is already established and tested, with the names of those who wish to opt in replaced by those who wish to opt out. Because it is so important to the success of the venture that this work is undertaken properly, sufficient time would need to be built into the proposals for this preparatory work.

 

Medical conflicts of interest

During the Taskforce review of opt-out, some intensivists raised concerns that patients might be afraid that efforts would not be made to save their own lives if they were considered to be potential organ donors. This is a concern that we know is already held by some people under the current system, and so it is not exclusive to opt-out. It could equally be argued that if people are on the Organ Donor Register – and thus indicate a willingness to donate – they might be seen as potential donors rather than as patients. The important point – irrespective of the authorisation system in place – is to ensure that patients and the public are aware of the clear separation between the treating team and the transplant team and that patients and relatives are given sufficient information about what is happening and why, to reassure them that all treatment decisions are made in patients’ best interests.

 

Conclusion

The main reasons that we support a move to an opt-out system can be summarised as follows:

  • We believe that, as one part of a broader strategy, a shift to an opt-out system will have a positive effect on donation rates.
  • Studies show that a large majority of people would be willing to donate but less than half of the Scottish population are on the NHS Organ Donor Register or carry a donor card. While this level of apathy exists despite people’s good intentions, people will continue to die while waiting for donor organs.
  • We support the principle behind an opt-out system – that if people do not object to their organs being used after death, they should be used to save lives.
  • Under an opt-out system individuals have exactly the same choice as in an opt-in system – to donate or not to donate.
  • The decision not to opt out of donation is as much of a gift as a decision to opt in.
  • An opt-out system gives added protection to those who do not wish to donate and makes it more likely that those who are willing to donate will be able to do so.
  • One important impact of a change in the system would be that over time, the introduction of an opt out system would change the overall philosophy within society so that donation becomes the norm when someone dies in a situation where donation is possible. This represents a more positive view of organ donation which is to be encouraged, and could help towards a societal shift where organ donation becomes a part of the fabric of our national life.
  • Overall an opt-out system is better for recipients (because more organs will be available) better for donors (because it is more likely their wishes will be respected) and better for relatives (because it is more likely that the individual’s own wishes will be known).

 

For more information contact:

Helen Reilly
Public Affairs Officer
BMA Scotland
T: 0131 247 3050 
M: 07825193617
E: [email protected]