bosy parts - organs

Opt-out organ system will not work

4th Sep 2018 - Rachael Adams

The Scottish Government should drop plans to move to an opt-out system of organ donation and focus on measures which have been proven to work, CARE for Scotland said today.

The Health and Sport Committee have been holding a public consultation on the Human Transplant (Authorisation) (Scotland) Bill and the deadline for submissions is today.

If the legislation becomes law, it would see Scotland becoming the second part of the UK to introduce an opt-out system after Wales.

But in its response to the Committee, CARE for Scotland warned that the evidence from Wales over whether the shift to an opt-out system was working, was still far from conclusive.

Even the Scottish Government’s own policy memorandum on international evidence for organ donation says that the move to opt-out in Wales has had a largely limited impact on deceased organ donation there.

The charity also pointed out that under the current opt-in system, Scotland is currently the UK leader in organ donation with 50 per cent of Scots now opted into the Organ Donor Register (ODR).

By comparison, despite operating an opt-out system, in Wales only 40 per cent of the population is opted into the ODR. Both England and Northern Ireland, neither of which operate an opt-out system have also seen significant increases in deceased donor transplants.

It is also hugely significant that the introduction of an opt-out system of organ donation in Wales has coincided with a significant increase in the number of people opting out of the ODR. Over 180,000 of the Welsh population has now opted out of the ODR in comparison to just 5,943 people in Scotland.

The charity also warned that recent court rulings on end of life care raise the alarming prospect that under an opt-out system in cases where life sustaining treatment is withdrawn, clinical decisions may in part be influenced by organ transplant considerations.

Instead of pursuing a shift to an opt-out system, CARE for Scotland is calling on the Scottish Government to spend scarce resources on measures proven to work and in particular the Government should focus on increasing the availability of specialist organ donation nurses.

The Nuffield Council has shown that investing in specialist organ donation nurses dramatically increases the number of organ donations. Their research found that the rates of family consent were 68.6 per cent when a specialist nurse in organ donation approached the family, but just 27.5 per cent when the approach was made by other staff without the specialised training.

 CARE for Scotland Parliamentary Officer, Dr Gordon Macdonald said:

“Scotland has been much more successful than other parts of the UK in encouraging people to opt-in to donate their organs.

“It does not make any sense why the Scottish Government is proposing to introduce an opt-out system when it has made significant progress in increasing the rates of deceased organ transplants and the claimed benefit of an opt-out system is unproven.

“Changing our organ donation system is a complete waste of resources and an expensive distraction. It diverts money away from measures that have been proven to work in increasing the number of organs available for transplantation.

“Instead of spending millions of pounds on introducing presumed consent or 'deemed authorisation' (as the Scottish Government refers to it), where there is little or no evidence of success, the Scottish Government should increase the number of specialist nurses in organ donation. This has been proven to increase organ donations.

“Keeping an opt-in system would also safeguard vulnerable patients in the future from any significant changes in legislation that come about in relation to end of life care.

"The Scottish Government should not recklessly cast aside the need to obtain consent before the state intervenes in the lives of patients and families." 

Ends

Notes to the editor:

For more information please contact Rachael Adams on 020 7227 4731 / 07581 153 693 or rachael.adams@care.org.uk

More information on the Human Tissue (Authorisation) (Scotland) Bill

CARE has repeatedly warned that an opt-out system may not work:  CARE on BBC Radio Scotland talking about why an opt-out organ donation system may not lead to an increase in organ donations.

The Nuffield Bioethics Council said last year that there should be an increase in specialist organ donation nurses: http://nuffieldbioethics.org/news/2017/ethics-tank-calls-discussion-wishes-organ-donation-death

Additional end of life concerns:

Supreme Court case on withdrawal of food and fluids sets dangerous precedent

Recent court rulings must be considered before laws are dramatically altered. The Supreme Court’s judgement to allow doctors to withdraw food as fluid from brain-damaged patients with persistent-vegetative state (PVS) and minimally conscious state (MCS) without a court judgement could have a serious impact on organ donation. There is a danger that in cases where life sustaining treatment is withdrawn of clinical decisions being influenced, in part, by organ transplant considerations. The risk of financial pressures and the pressure to meet transplantation demand is something that should concern us all.

Concerns exist also in relation to places in which assisted suicide and euthanasia have been legalised, in which a lack of explicit consent being obtained prior to patients being euthanised is a far too common occurrence and organ donation is practised in relation to euthanised patients. As a Cross Party Group in the Scottish Parliament is considering whether to bring forward another Bill to legalise assisted suicide in Scotland, how this issue would interact with an opt-out organ donation system should not be overlooked by MSPs.

Scottish Government’s own policy memorandum:

Paragraph 30 of the Scottish Government’s policy memorandum on international evidence of organ donation says: "International evidence suggests that opt-out legislation can be effective as part of a package of measures to increase organ donation, however, there is insufficient robust evidence to conclude that opt-out legislation alone will increase deceased donation. The evidence highlights the importance of a range of non-legislative measures, which can work effectively in their own right to increase donation and transplantation and which are often associated with successful optout systems. International evidence highlights that there is an association between countries with opt-out legislation and people‘s increased willingness to donate their organs, as well as an association with increased deceased donation.  Despite this association, there is limited robust evidence that shows soft opt-out organ donation causes increases in deceased donation." Para 30

On Opt-out system in Wales:

"The Human Transplantation (Wales) Act 2013 brought a soft opt-out system into force in Wales in December 2015. There is now recent evidence of the impact of the opt-out system in Wales, published in November 2017, which is of particular relevance given the similarities in the context. The evaluation found that there has largely been limited impact on deceased donation, although it suggests that a longer time is needed to draw firmer conclusions about the impact of the change in the law in Wales."  Para 31

"The evaluation found that there was high awareness of and support for the soft opt-out system among the general public and NHS staff. Awareness has generally increased over time, although there has been a slight drop in public awareness recently as awareness-raising had eased off. This suggests that campaigning needs to be maintained continuously. The evaluation of the Welsh system also examines understanding about the role of the family in the opt-out system. It concluded that there was a need to improve understanding among the public and NHS staff of the role of the family in decision making as there was some misunderstanding about the overall role, what happens if the family is distressed, family ability to ―override‖ and the family providing evidence of a known objection held by the deceased." Para 32 

"The evaluation found that there was an increase in consent rates for donation, but that routine data did not show any consistent change in deceased organ donation in Wales. Given the increase in levels of consent, the evaluation suggests that either a lower number of eligible donors (i.e. those who die in circumstances where donation could proceed and who do not have known medical conditions which mean donation is known not to be feasible) or fewer families being approached about donation have been factors in there not being an increase in the number of donors. There has also been an increase in the proportion of people on the ODR. Whilst this is encouraging, the evaluation also concluded that a longer period of time is needed to draw firmer conclusions about the law and other associated changes." Para 33 

Organ Donation Transplants table:  

Deceased Organ Donor Transplants 2014/15-2017/18

  2014/15 2015/16 2016/17 2017/18
Wales 128 168 135 139
Scotland 300 332 348 375
England 2,834 2,931 3,155 3,411
Northern Ireland 79 100 75 115

Source NHS Blood and Transplant[1]

[1] https://www.organdonation.nhs.uk/supporting-my-decision/statistics-about-organ-donation/

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