Response 70512717

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About You

What is your name?

Name
Anthony Horan

Are you responding as an individual or an organisation?

Please select one item
(Required)
Individual
Ticked Organisation

What is your organisation?

Organisation
Catholic Parliamentary Office

Questions

1. What do you think of the principle of a soft opt out system for Scotland?

Please select one item
I support the principle of a soft opt out system in Scotland
Ticked I do not support the principle of a soft opt out system

2. Are there any changes you would make to the current 'opt in' authorisation system, other than moving to opt out?

Are there any changes you would make to the current 'opt in' authorisation system, other than moving to opt out?
We would like to see the introduction of new initiatives to encourage people to donate, similar to those introduced in Spain in 1989. Spain has significantly higher rates of organ donation than Scotland, and although an opt-out system had been in operation since 1979, it wasn’t until Spain decided to proactively encourage organ donation in 1989 through a national public campaign and the creation of the Organización Nacional de Trasplantes (ONT) as part of the Spanish Ministry of Health that donor numbers increased. The ONT is a technical agency in charge of the coordination and oversight of donation and transplantation activities in Spain, and it created a model of coordination in deceased donation that made the country evolve from 15 donors per million population to more than 30 per million. It did this by relying on designated professionals and coordinators based in every hospital who were responsible for organ donation. This coincided with a greater focus on education and a massive advertising campaign to highlight the importance of organ donation. These changes worked and they thrust Spain to the forefront of organ donation across the world. As already stated, Spain had been operating a system of presumed consent (opt-out system) for a period of ten years prior to the changes detailed above without any significant effect on rates of donation. However, a significant increase in donations followed the practical, organisational changes made by the Spanish government (L Hitchen, 'No evidence that presumed consent incresases organ donation' BMJ 2008; 337). In the end it was the changes to the organisational structure of organ donation, rather than the formal introduction of a system of presumed consent, that brought about a greater increase in donations. Note also that Sweden switched to a system of presumed consent in 1996 but continues to have very poor rates of organ donation (15.8 per million), while the United States, which has an opt-in system, has an organ donation rate of 25.8 per million. There is clearly scope to explore the Spanish model and proceed to implement changes to the organisational structure around organ donation, including investment in education and advertising and ensuring donor coordinators are present in all hospitals. The principal concern with presumed consent is that it denies individuals the right to make an informed choice about organ donation. It is vital that those whose organs are removed are given all the information necessary to allow them to make a positive, well-informed choice about what they would like the state to do with their organs on their death. Presumed consent effectively means state ownership of citizens' organs until the citizen decides otherwise. It is a policy that seriously questions the need for the state to recognise the inherent dignity of each individual as, first and foremost, a human being and not just a statistic. It is also disappointing that the government has stated that it will not consider the mandated option as part of this consultation process. The mandated system has the potential to cover the entire population while protecting the basic principle that it is the citizen, and not the state, who should decide on whether or not they wish to donate their organs following death.

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?

Please select one item
Medical staff should still proceed with the donation
Ticked Medical staff should not proceed with the donation

4. If there was a soft opt out system, what do you think of the proposed checks set out in step 2?

Please select one item
These are sufficient to decide if a donation can be deemed to be authorised
Ticked These are not sufficient to decide if a donation can be deemed to be authorised
Don't know
If you think these are not sufficient, what other checks would be needed (apart from those covered in questions 6 to 8)?
We do not support the soft opt-out system. However, if adopted, any model should follow the Spanish system which makes opting out easy for the individual.

5. In any opt out system, what do you think should happen if a deemed authorisation donation was likely to distress the potential donor's family?

Please select one item
The donation should still proceed
Ticked The donation should not proceed
Don't know

6. If there was a soft opt out system, what do you think about the categories of people set out under step 3 for whom explicit authorisation would still be needed from the person themselves or family member?

Please select one item
The categories about are sufficient
Ticked The categories above are not sufficient
Don't know
If these are not sufficient, why do you think this?
We do not support the soft opt-out system. Explicit authorisation should be required in all cases. However, If adopted, any model should follow the Spanish system which makes opting out easy for the individual.

7. In what circumstances do you think an adult should be viewed as not having the capacity to make their own decisions about donation and therefore should not be subject to any deemed authorisation provisions?

In what circumstances do you think an adult should be viewed as not having the capacity to make their own decisions about donation and therefore should not be subject to any deemed authorisation provisions?
This question highlights one of the problems of the opt-out system. Retaining the existing system of opt-in would ensure that those without the requisite capacity would not be able to register.

8. Under what age do you think children should only be donors with explicit authorisation?

Please select one item
under 12
under 16
under 18
Ticked other (please specify)
If other, please specify.
It is important that only those who are able to fully understand the nature and consequences of organ donation should be able to give explicit authorisation.

9. For children who are in care, what are your views on allowing a local authority which has parental responsibilities and rights for a child to authorise donation for the child if no parent is available?

Please select one item
They should be allowed to authorise donation of a child's organs or tissue in those circumstances
Ticked They should not be allowed to authorise donation of a child's organs or tissue
Don't know

14. What do you think about allowing people to appoint one or more authorised representatives to make decisions for them?

Please select one item
Ticked This should be allowed
This is not necessary
Don't know
If you think this should be allowed, in what circumstances do you think an authorised representative would be useful?
This may be acceptable, however, the appointed authorised representative must be explicitly and legitimately appointed and authorised by the individual and this must be done in accordance with the law to ensure no uncertainty following death.

15. Do you have any other comments which you think should be taken into account in relation to any Scottish opt out system?

Q Do you have any other comments which you think should be taken into account in relation to any Scottish opt out system?
As per our answer to question 2, the government should seriously consider introducing new initiatives to encourage people to donate, similar to those introduced in Spain in 1989. There must be scope to explore the Spanish model and implement the positive changes to the organisational structure around organ donation, including investment in education and advertising and ensuring donor coordinators are present in all hospitals. Here in Scotland we could take the best of the Spanish system and to use it to the advantage of those most in need. Starting from the basis of the existing opt-in system, we can develop the way we manage organ donations, ensuring that there are suitably qualified personnel in every hospital committed to organ donation as well as undertaking a positive, eye-catching public awareness campaign through the media. If we do this, then there is no reason why we cannot experience the same significant increases enjoyed in Spain. Obviously, high profile awareness campaigns and organ coordinators cost money, while simply switching to an opt-out system doesn’t, but with lives at stake, we should be willing to invest in proven models which lead to the outcomes we’d all support. Presumed consent denies individuals the right to make an informed choice about organ donation. It is vital that those whose organs are removed are given all the information necessary to allow them to make a positive, well-informed choice about what they would like the state to do with their organs on their death. Presumed consent effectively means state ownership of citizens' organs until the citizen decides otherwise. We repeat, it is a policy that seriously questions the need for the state to recognise the inherent dignity of each individual as, first and foremost, a human being and not just as a statistic. The Catholic Church acknowledges the need for more organs to be donated to allow those who are suffering the opportunity to enjoy a better quality of life. Indeed the Church sees organ donation after death as a 'noble and meritorious act' to be encouraged as an 'expression of generous solidarity'. It is a gift and a sign of great love for one another. However, in order for this to be a true gift, it must be freely given and that is why the Church also teaches that 'it is not morally acceptable if the donor or his/her proxy has not given explicit consent.' We repeat our disappointment that the government has stated that it will not consider the mandated option as part of this consultation process. The mandated process has the potential to cover the entire population while protecting the basic principle that it is the citizen, and not the state, who should decide on whether or not they wish to donate their organs following death. We have not responded to questions 10, 11, 12 and 13 due to a lack of space provided for answers. However, we would like to use this space to respond to those particular questions: Question 10 - There should be explicit authorisation in all cases. Question 11 - We do not support the soft opt-out system. Tests should only be undertaken where a donor has already given explicit consent for organ donation and for tests that are appropriate to achieve that end. Question 12 - Please see answer to question 11. Question 13 - Provided it is done in the operation of an opt-in system, treatment should not hasten death or cause unnecessary suffering. Note again that we do not support the soft opt-out system. However, if adopted, any model should follow the Spanish system which makes opting out easy for the individual.

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?

Please select one item
Ticked CMO guidance should be provided to encourage more referrals
CMO guidance should not be provided
Other (please specify)
If other, please specify.
Provided there is no undue pressure applied to the individual patient there is no reason why this cannot be introduced, provided that it operates within an opt-in system which respects the dignity of people as human beings and not simply as citizens of the state.

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?

Please select one item
Ticked This should be a requirement
This should not be a requirement
Don't know

18. Do you think there are particular impacts or implications for any equalities groups from any of the proposals in this consultation, either positive or negative?

Please select one item
Ticked Yes
No
Don't know
If yes, please provide details.
First and foremost, the integrity of the human person is seriously impacted as a result of the State assuming control over each individual person's organs. As a result, citizens are at serious risk of falling foul of arbitrary and discriminatory choices made on their behalf. Not everyone will have the organisational or intellectual ability to challenge the State and/or the medical profession, and we have particular concerns that some groups will be poorly placed to do so, for example, the disabled, those in care of the State, the old/sick/infirm, and those who are from disadvantaged socio economic backgrounds.