Duncan Smith (Dublin Fingal, Labour) | Oireachtas source

We welcome this Bill and will be supporting it. We had been assured that this Bill would come before the Dáil several times last year and it was a cause of great distress for many that it had been delayed for so long. Yet, it is here before us now and there is no doubt that it is a highly technical and sensitive Bill that required a lot of time.

The Bill does a number of important things. It puts into practice the recommendations that had been made in the Madden report concerning post-mortem practices and procedures. This is a positive step in ensuring our bodily autonomy and integrity in death and in providing families with some peace of mind with the tragic passing of loved ones. It is fair to say that we were all devastated by reports from last year that found that the organs of 20 deceased babies were sent abroad for incineration without the knowledge or consent of their bereaved parents. Losing a child is every parent’s worst nightmare, but then to have had this additional pain inflicted upon them is unconscionable. While it will be of little comfort to the parents of those babies, this legislation will at least ensure that such appalling incidents will never happen again.

The Bill allows us to increase our pool of candidates to provide potentially life-saving organ donations and transplants. It provides families with some sense of peace of mind on the tragic passing of their loved ones. Crucially, it does this without impinging on our ability to choose what happens to our bodies when we pass and our ability to consent to it, which should be of the utmost importance in matters as sensitive as those that are addressed in the Bill.

We know that an opt-out system of organ donation will save lives if it is properly resourced. At the same time, the Bill also respects the wishes of those who are not comfortable with donating their organs for various reasons, for example, cultural, religious or the wishes of the deceased’s family members.

I am glad to see the Bill provides for the establishment of a centralised opt-out register. It is unfeasible to expect every person’s next of kin to know their consent status. I am an organ donor, but I just checked my wallet and my card is not there. I do now know where my card is, and I am not necessarily sure if my own next of kin are aware of my wishes. It is a lesson to us all that we need to be clear where we can be about our wishes in this regard. However, it is unfeasible to expect everyone to know their consent status. While it is right, as outlined in the Bill, that the final say in donation should lay with the next of kin, regardless of whether or not an individual has opted in or out, the national register will at least remove some of the burden on those closest to the deceased having to make that decision, should they find themselves in that tragic circumstance.

It is vitally important that this register is well maintained. We cannot overstate this enough. This will be a live list and one that needs to constantly be maintained and well-resourced. Turnaround times for organ donation and transplants are often extremely short, so it is crucial that information regarding potential donors and their consent status can be accessed in the most practical and time efficient manner possible.

I urge the Government and the HSE to put measures in place to ensure the register will be well maintained, accurate and effectively bulletproof in terms of the efficiency of its administration. This matter is extremely sensitive and personal and, therefore, information security and confidentiality must be held in the highest regard.

I am glad to see that, as per recently released HSE figures, our organ donation rate is recovering following disruptions caused by Covid in 2020 and 2021. Last year, 250 organ transplants took place from 119 donors. That is still 24 shy of the 274 transplants carried out in 2019, pre-Covid, but it is encouraging to see that figure bounce back from where we saw a 32% reduction. That is 250 people who otherwise would probably not be here with us today, or who would at least be living in continued poor and diminishing health - mothers, fathers, brothers, sisters, friends. It is 250 people who have been given a second chance at life thanks to the parting gift of deceased donors and the altruism and selflessness of living donors.

We can do better, however. Ireland has a comparatively low rate of donation among our European neighbours. Our rate of donation is 18 per million people, whereas in Britain, for example, the equivalent figure is 25. While implementing an opt-out model of donation is a welcome and progressive move, it will also, I hope, help to improve our rate of donation. This legislation is not a catch-all solution to increasing the number of available donors in Ireland. As I said earlier, it has the potential to save lives if properly resourced, and I emphasise those three words "if properly resourced". The Spanish model is often cited as showing the considerable potential of implementing an opt-out system. Spain consistently has some of the highest donation rates in the world per head of population. When it initially moved to an opt-out model, however, the increase in donation levels was marginal, and it was not until it had introduced a network of specialised transport co-ordination teams that significant improvement could be seen. This means the real difference will be made in the organisation model that follows the Bill.

I see no provisions in the Bill concerning increased funding for transplant co-ordinators in Ireland, and I urge the Government to consider this aspect seriously in order for the legislation to be as effective as possible. Transplant co-ordinators cannot be confined to a small number of hospitals, as they are at present. Organ donation nurse managers are attached to each hospital group but not to each hospital. We need to go beyond that. Dr. Alan Gaffney, clinical lead for organ donation in the RCSI Hospitals Group, has said having specialist personnel in every ICU department in the country is crucial to increasing levels of organ donation. The Irish Medical Organisation, IMO, has also called for an increase in the number of transplant co-ordinators who would, independently of the transplant team, serve to liaise with the potential donor and his or her family to talk through the process and provide any necessary assistance.

I urge the Government also to engage in a sustained public awareness campaign. The legislation deals with a difficult but important matter and people can, understandably, be uncomfortable talking about it. We have an opportunity both to inform people of the facts and processes relating to organ donation and to prompt families to have a conversation about whether they will be comfortable donating their organs when they pass. It would also provide an opportunity to assure people that their consent or that of their family will be of the utmost importance. We do not want family members to object to a loved one's organs being donated because they are unsure as to what that person would have wanted. Research has shown public awareness played a significant role in increasing donation in Wales when that country implemented the opt-out model in 2015, and now is the time for us to encourage people to have that conversation.

In the discussions and preparations relating to the Bill, we have focused on those who might have issues with organ donation and how uncomfortable they may be with it, but we need also to shine a light on those families who have got great comfort, solace and hope when the tragedy of the passing of their loved one has been followed by the donation of that loved one's organs. I have personal experience of great comfort being given to families when that has occurred. In the darkest of times, the gift of extending life for other people through organ donation can give families greater comfort than, perhaps, religion, solace or anything else. They know that their loved one is, in some fashion, living on and providing hope to another family. That is a positive, hopeful message we need to get out there, and it is something the Bill will have the capacity to do once implemented and, as I said, properly resourced.

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