New legislation would be the starting point for increasing organ donation rates in Scotland, but bringing about real change needs a multifaceted approach, including investment in public education.
The Scottish Government’s Human Tissue (Authorisation) (Scotland) Bill contains new provisions to introduce more flexibility in the timing of the authorisation process, as well as clarity about authorisation for pre-death procedures. In an attempt to increase the likelihood of successful transplantation, it includes tests to ascertain if the person’s organs/tissue are suitable for donation. It also makes changes for authorising donation by, and on behalf of, children.
Based on the bill’s proposals, the “soft opt-out” system would mean people can still actively opt in to donate or opt out from donating. If they do neither, deemed authorisation, commonly known as “presumed consent”, would take effect allowing the persons organs to be donated – unless the person’s family are aware that they have previously expressed wishes not to donate.
Authorisation is arguably the most important revision, as each year a significant proportion of families refuse to authorise donation of their relative’s organs. In 2017-18, in 44 per cent of cases in Scotland where family members were approached, authorisation was not given or the family overrode the consent previously given.
It is important, therefore, to ensure the individual’s wishes are paramount. The Scottish Government has said the move to a soft opt-out system is a way to do this, but it will take effective communication and considerable joint working as the process is complex and often operating to time pressures. Family members will still have a role, for example in providing medical history, but the bill does not provide for an override by them.
However, where the potential donor has opted in or out, it will be possible for that person’s most recent views to be expressed by the relatives, thus determining whether donation proceeds or not. Similarly, in deemed authorisation cases the bill provides for family members or others to advise of any objection to donation which the potential donor held, but not to impose their own views.
Family involvement will also still be crucial for elements of authorisation for those in excepted categories, for purposes other than transplantation and for less common types of organ/tissue. In line with the approach in the 2006 Act, the nearest relative will be able to authorise donation as long as it was not against the person’s wishes.
The bill follows similar legislation passed in Wales in 2015, where an early assessment shows that while the number of donors has not increased across its first two years, the effects on family refusal rates has been positive, it has not affected living donation negatively and overall activity in the registry has been much improved.
In Spain, proportionately more organs are donated than anywhere else, in part due to the use of highly effective transplant co-ordinators and including education on donation as part of the school curriculum.
The Scottish Government has given assurances that a public awareness campaign will run the year prior to the system coming into force, and continuing after the date of introduction. The Scottish Parliament will be considering the legislation over the coming months.
If implemented, with adequate resources and supported by a high profile public campaign, an opt-out system could be very effective.
However, changing the law should not be viewed as the sole answer – all systems and processes need integrated action to continue to drive improvement.
Amanda Ward is a PhD candidate in medical law at Strathclyde University, and member of the Law Society of Scotland’s health & medical law subcommittee