Orla Tinsley: I am deeply concerned about education around the organ donation opt-out system

After more than a decade of waiting, the opt-out system of organ donation Bill has been passed in Ireland. This is a signal of progressive and future-thinking politics that seek to honour donors and support those who work to give the gift of life, and the person receiving it.

The soft opt-out policy we are introducing can bring complications and there is scant evidence to support it works better than our current practice. It means, in the past and new legislation, the family has the final say. The soft part relates to your wishes as a donor being ignored and disregarded if your family declines to agree to donate your organs. It’s not a hard and binding decision you have made, because your family has the final say. The opt-out relates to everyone automatically being a donor unless you choose, explicitly by registration, to opt-out.

This situation, I imagine, happens often. How could it not? When a family is introduced to the idea that their loved one will not survive, it is insurmountably difficult to make a determination about donation when you are already losing so much. If it felt impossible, what could anyone say? It takes as long as it takes and we cannot measure another person’s pain.

But there is time pressure.

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One person can save up to eight people by donating their organs and that is just solid organ transplant we are talking about – there are even more lives to save when tissue and blood donation come into play. But it must happen within a short amount of time.

As someone who has been through one of the toughest transplant journeys, I am so grateful for my donor and their family for their decision, I think about them often and especially this month as I approach my fifth transplant anniversary or, as we say in transplant circles, my lungiversary. The way the approach is made to the family, who it is made by, the level of preparation those being tasked with the decision are given, and the timing of the question are crucial components as to whether the answer is an emphatic yes or a resounding no. There are multiple factors that must manifest in order for the gift of life to occur. In the United States, where I had my transplant, you will hear the words “gift of life” being used a lot.

The person who is dying and waiting for the transplant must be well enough and sick enough to accept the organ

As a double lung transplant recipient, I can tell you that a transplant is the greatest legacy a person can leave – it is the greatest gift.

But in the US it is also, quite literally, a gift in legal terms. If you opt-in to be an organ donor, even though the family is consulted, they cannot overrule your own wishes which are enshrined in law as a gift.

[ Orla Tinsley: We cannot have fully resourced national transplant programmes unless all aspects of care are covered ]

With this legislation your family can override your wishes but what soft opt-out could potentially do in Ireland is increasing the opportunity for organ donation by reminding you of this. By automatically being an organ donor and being forced to think about it, the window arises for you, in full health, to discuss your wishes with your family and make certain that they know are willing to donate or not. But we must know. This is a once-in-a-lifetime opportunity to save lives.

Most people waiting for transplants get one chance and some get none.

The person who is dying and waiting for the transplant must be well enough and sick enough to accept the organ. They are living in what is called a “transplant window”. Furthermore, this wellness must be related not just to physical health but also to mental health. And they must have an active and present support system. Then there is the donor, the miracle worker, whose organs can only survive for availability to save lives with the right resources and within a precious window of time. Nothing can happen without enough transplant coordinators, trained organ procurement nurses in the hospital, surgical and ICU space, extracorporeal membrane oxygenation (ECMO) machines, and procurement protocols. We also need access to post-transplant care.

What else is needed? Education from the ground up starting in primary school. One model that is already available is the remarkable package put together by TY students in Bodie Eureka Secondary School in Kells. Bring Organ Donation Into Education was the name of their powerful organ donation awareness campaign. The short film captured the importance of organ donation and they partnered with the Irish Kidney Association to bring it into schools. These young women were visionaries and Young Social Innovators of the Year in 2013. We need more of this. I remember shooting with them in Outhouse in Dublin, admiring their commitment and focus as they directed, interviewed, filmed and produced. There they were, in transition year, doing the job of our governments and NGOs in such an articulate and helpful way. Heart, lungs, liver, kidney, pancreas it said at the bottom of the fact sheet and accompanied the video where people spoke about organ donation and how it affected them. This is a practical resource that can help people understand the process, and I was honoured to be part of it.

[ Orla Tinsley: Returning to Covid-19 Ireland after my lung transplant ]

The documentary I made with RTÉ about my double lung transplant, Warrior, is another such source which tells one person and their family’s experience. Similarly, Aquinas Diocesan Grammar School in Belfast have been championing an organ donation pilot programme for years now and are active with awareness-raising efforts around organ donation. In 2021, England introduced a teaching model on organ, blood and stem cell donation and it is free to access on the Irish Kidney Association site. These efforts were established in the hopes that people would become organ donors and have the conversation with their loved ones so that their wishes are known. Unless we actively invite a continuing public conversation and awareness campaign around this in Ireland, this legislative change will not have the benefit that it should. The goal is: to save more lives and honour the donors who make it possible. In order for this to happen infrastructure is needed in all hospital settings ready to facilitate the families of the donor and the recipient during that devastating time. We need co-ordinations available at all times to be able to identify potential donors.

What is happening in that transplant window when the organs are available, what is happening on the ground in the hospitals?

And we must be able to access and understand the data. At what times in the past year has a potential donor been evaluated but not then considered suitable. What were the reasons around this? When was someone deemed suitable but the transplant window was not made possible because of lack of resources? One of the greatest comforts undergoing my double lung transplants in the United States was the ability to log on to UNOS and see, in real time, how my transplant journey was doing.

As someone who understands how scarce organs are and how complicated and precise donation must be, I am grateful opt-out is happening, but I am deeply concerned about the educational infrastructure needed around it and the physical infrastructure needed within the transplant system.

The human tissue bill was something I first talked about publicly over ten years ago. When I had my double lung-transplant, five years ago this month, this conversation began again publicly and the hope faded after the bill was shelved again. It is something we should praise Stephen Donnelly for doing when many others kicked it to touch so often. Although, we are the last country in Europe to introduce soft opt-out and our transplant services are on their knees. And our transplants fell by 32 per cent in 2020 with lung transplants suffering the most falling by over 50 per cent. Lung transplants, along with the heart, are some of the most difficult transplants because of the location in the body.

Communication, support and published data are the ways to move forward. We must understand why we have low rates of donation some years and higher rates in other years. What is happening in that transplant window when the organs are available, what is happening on the ground in the hospitals?

We cannot fix the problem unless we can see it clearly, explicitly and publicly.