Ó Caoláin welcomes organ donation motion
Ó Caoláin welcomes organ donation motion
Sinn Féin Health Spokesperson Caoimhghín Ó Caoláin this evening spoke on the Private Members’ Motion on organ donation in the Dáil.
The following is Deputy Ó Caoláin’s speech:
Caoimhghín Ó Caoláin TD, Sinn Féin Health & Children spokesperson
I commend the fifteen deputies who tabled this motion on the very important issue of organ donation. It is a timely debate on a pressing health matter that requires concerted and early action on the part of Government.
We need to address the question of organ donation and transplant in its entirety. There is a severe shortage of organs for transplant. There is also a severe deficit in the infrastructure for delivering transplants, in terms of personnel, physical structures and funding. All of these shortfalls need to be addressed in a comprehensive manner.
Speaking last week at the Oireachtas Health & Children Committee, David Hickey, Director of the National Kidney and Pancreas Transplant Programme, identified the three big gaps in the current system. These are lack of organ donors, poor infrastructure in which our transplant patients are housed and a shortage of Transplant Surgeons. And he said these gaps must be filled by means of increased organ donation, investment and legislation.
This motion focuses on what is called ‘presumed consent’, a system where all persons are deemed to have opted in for organ donation and they opt out if they do not wish to be donors.
As a matter of party policy, first adopted by our Ard Fheis in 2008, Sinn Féin supports the ‘presumed consent’ or opt-out rather than opt-in system of organ donation. That reflects our desire to meet the need for greatly increased donations and transplants which, as the motion says, are life-saving and life-altering gifts. That desire is shared by all, whatever their views on the best model of consent for organ donation.
Underlying our position are a number of key principles which we believe should underpin the delivery of health services.
We believe that everyone has the right to enjoy the benefits of scientific progress and its application without discrimination.
We believe that it is necessary to use regulatory policy to protect the public good including the safeguarding of public health and safety.
Everyone has the right to participate in decisions affecting their health and to have their concerns heard. This means that individuals must be empowered to exercise control over their own health and to participate in the decision-making process around health law and policy.
And, very importantly, people should not be subjected to medical or scientific intervention without their informed consent.
We recall the pain inflicted and injustice done to families in the cases where the organs of children were removed without parental knowledge much less consent.
On this basis, we believe that a complete and comprehensive public consultation should take place on the issue of organ donation, in order to canvass clear public and professional support for a policy of presumed consent.
We have called on the Irish Government, British Government and Assembly Executive to ensure that:
• The principle of presumed consent will operate only with regard to organs available for donation to other patients and will not extend to reproductive organs, other tissues and organs for research.
• Presumed consent will operate based on the idea that ‘everybody carries a donor card’.
• All persons who have the ability under the current ‘Opt-In’ policy to provide consent shall have the ability to dissent from ‘presumed consent’, i.e. those who are over-16 and with legally recognised mental capacity.
• For children under 16 and those adults lacking legal capacity to consent, the next-of-kin should retain full control over consent, and the Opt-In requirement should remain in place.
• It should be the responsibility of the relevant health bodies to comprehensively inform the public of a presumed consent policy and an information booklet fully outlining the rights of potential donors and their families should be sent to every household and educational institution. This should include the ability to consent/dissent; how to officially register and ‘opt-out’ of donating; the legal position regarding children; how organ donation works; how the new process will work in practice; safeguards that will be put in place to protect the public.
• An all-Ireland National Register on Withholding Consent to Organ Donation should be established. This would be automatically accessible to the organ procurement service/s and managed by the health department/s.
This State currently operates under an Opt-In Scheme. There is no legal restriction on the age you can choose to donate organs in the event of your death but you must carry an organ donor card should you wish to donate, or otherwise register your willingness (to ‘opt-in’) with a voluntary organisation such as the Irish Kidney Association.
There is no legislation governing organ donations and the law regarding consent and who can provide it is therefore unclear.
There is currently no legal definition in this State of what constitutes ‘informed consent’. In some cases where there is no registered opt-in the medical team may request the next of kin to donate the organs of a deceased person but there is no law governing this practice. Generally, the consent of the next of kin is accepted as valid and a refusal by the next of kin is not contested.
Those over the age of 16 may consent to medical treatment and organ donation on their own behalf. Where a person is under this age a medical professional can take consent from the next-of-kin.
All organ donations are coordinated by the National Organ Procurement Service, Beaumont Hospital, Dublin under the authority of the Department of Health and Children.
An Opt-In system also operates in the 6 Counties. All organ transplantation within the North is governed by the British Human Tissue Act (2004). Transplant NI is accountable to the 6 Counties Minister for Health in the Assembly and to the British Parliament through the English Department of Health.
Transplantations occur when a person has died in hospital, usually when brain stem death is confirmed using strict criteria. Consent is needed – either given previously by the deceased making her or his wishes known or being a registered donor through the NHS Organ Donor Register – and a nominated person or ‘qualifying relative’ can also consent on the person’s behalf.
As in the 26 Counties a child of 16 will have capacity to consent to organ donation. Where they are under 16, they are governed by the Gillick Competency rule which stipulates that as a matter of law, the parental right to determine whether or not their minor child below the age of 16 will have medical treatment (or opt-in to organ donation) terminates if and when the child is able to fully understand what is proposed. However in practice it is generally the family of the child who have legal power to donate organs.
Research published in 2009 in the British Medical Journal found that donation rates do increase after the introduction of presumed consent systems. The same research showed that legislation, availability of donors, organisation and infrastructure of transplantation services, investment in health care and public attitudes to and awareness of organ donation all play a role.
This latter is an extremely important point. It is far from a one-dimensional issue. Changing the donor consent system is not by any means a panacea. It may form a key part – but still only a part – of a more comprehensive approach. It was put well by the leading transplant surgeon in the country, David Hickey, at the Health & Children Committee last week. He is worth quoting at some length: He said:
The other area that will certainly help increase donation rates has been Joe Brolly’s initiative re the so called ‘presumed consent’ or ‘opt out’ option. Much has been said about the unfortunate wording of presumed consent, and I believe that this has to be removed from the lexicology. The presumption should be that the medical and nursing staff bring the topic to the awareness of the potential donor family to allow them the opportunity to think about this process and decide whether it is suitable for them. It must also be remembered that this is a service to the donor family and immense consolation can be derived from donating. Conversely there is also immense desolation derived from not being afforded the opportunity…. However, it has to be accepted, that the countries that have seen significant increase in organ donation and this increase has been attributed to the adoption of presumed consent, in reality has been the result of massive investment in both physical and personnel infrastructure.
Another clinician, Liam Plant, stated:
In the absence of a robust organization and infrastructure to support this endeavour, any legislative framework is unlikely to achieve its maximum potential in increasing donation. Similarly, robust engagement with the public to minimize anxiety, misunderstanding and fear regarding any potential legislative changes must also be of the highest importance.
I again commend the proposers of this motion, which we support.
We must address all aspects of this issue, most especially the need for greater resources to be devoted to organ transplant by Government. It would result in significant long-term savings for the State but, far more importantly, it would save and enhance more lives.