‘MAKE LIFE YOUR LEGACY’
Summary of Soft Opt Out and Optforlife
1. The aim of optforlife is to put in place a state of the art organ donation system North and South. Our friends and neighbours are dying needlessly. We can put a stop to this.
2. In the North, a good infrastructure for organ donation/transplantation is already in place. All that is needed to bring the North into line with Europe’s leading donor rate countries is the new law. In the South, a proper infrastructure is needed as well as the new law.
3. On the 5th of February 2013, the NI Joint First Ministers announced that the NI Executive is moving towards the soft opt out proposal set out in this document. All of the parties in the NI Assembly support it. It is endorsed by the BMA (British Medical Association) and all of the NI patient groups. An all-party group comprising MLAs, doctors and leaders of the patients’ associations has been formed to spearhead the move towards the new law.
4. The Irish government has already held public hearings in relation to ‘soft opt out’ and is committed to bringing in the new law. TDs indicated their overwhelming support for the proposal in the course of a Dail debate on the 1st of May 2013.
5. The proposed new law – SOFT OPT OUT
a. In future, only those who do not wish to be a donor after death need to do anything. They can register their objection to donation by opting out online. Those who opt out will not then be considered for donation after death.
b. For the rest of the population, their families will make the decision in the hospital. The next of kin will always have to give their consent at the hospital before donation can proceed. No consent, no donation.
c. This is a system based on explicit family consent. CONSENT IS NOT PRESUMED. THE STATE PLAYS NO ROLE IN THE PROCESS. The decision whether to donate rests entirely with the family.
d. This approach reflects the fact that the overwhelming majority of people believe organ donation is a good thing.
e. The reason for the requirement of family consent is that we believe organ donation is a sacred gift from one family to another at a very difficult time. The new law will enshrine the principle that donation after death is a gift freely given.
6. Difference between the current ‘opt in’ system and the new ‘soft opt out’ system
I. Current opt in system
The current opt in system is based exclusively on family consent. People may carry a donor card in the ROI or be registered online as a donor in the North but this is not binding. Rather, it is a sign of support for organ donation by the individual. Before organ donation can proceed at the hospital, the family MUST consent. Unless the family consents, organs will NEVER be donated.
The family can decide to donate whether or not someone carries a donor card or is on the donor register. But unless the family consents, no donation will proceed.
II. Proposed soft opt out system
The proposed soft opt out system is based on an identical family consent. The difference is that under this system someone who for whatever reason does not wish to be a donor can opt out online. That decision is final. Under the current opt in system, this cannot be done and so the decision rests with the family.
7. This change will transform our organ donation system. Donation will become the norm and we will have a state of the art system similar to those in place in the world’s leading donation rate societies. Spain, Croatia, Belgium, Portugal and the other leading european donation rate societies operate a soft opt out system. In 2012, ROI had a donation rate of 20 donors per million
population (pmp). NI’s rate was 22 donors pmp. Spain meanwhile had 36 donors pmp. Spain’s long term rate runs from 35-40 donors pmp.
8. The North already has in place a state of the art organ donation infrastructure. The South would need to put in place a similar infrastructure in order to take full advantage of the new law.
9. Optforlife has worked closely with the leading experts in both jurisdictions, with patient groups, donors, recipients and doctors in putting together this proposal. All of us believe it will save many lives.