To progress on the organ transplant front we need to be ready to talk about death

When the word “transplant” is mentioned for the first time it lights a fire beneath you. After years of degenerative illness there is suddenly a new goal: it means waiting for someone to die so that you can live. It’s confusing, it’s devastating, it’s enlightening and immediately you are propelled to do everything, and then nothing.

You swing like a pendulum between action and inaction until the reality sets in. Waiting. Waiting is the reality and you have no choice in the matter. You have to wait and work hard enough to be well to get on the list, then you wait and work hard enough to stay there.

You get angry at people. People who smoke, people who don’t take care of their bodies, people who take things for granted. You want to scream “You have one body. One. Mind it.” Then you get peace, you realise it’s all temporary anyway and control is impossible.

This might also be how it feels in that moment a family member is asked to decide whether to donate the organs of their loved one. Right now Ireland needs a proper, respectful public dialogue on organ donation and not a merely reactive one that underestimates the issues. We can all agree that more donations need to happen. What is less obvious is that we need to talk about death.

Organic life cycle
When you die, you don't need your organs; giving them away should be a natural part of the life cycle. Sometimes it takes watching a loved one die slowly to jolt people into this reality but we need to talk about our death and donation before this happens. The ultimate act of giving is to give without expectation or hope of return and that is what organ donation is. It needs to be normalised.

In Ireland, 650 people are waiting for transplants; some will die waiting. The problem for some potential donors is the thought of being cut open and having organs removed after one’s death is a gruesome one, an image from pop culture or horror movies. We need to think seriously about this and consider donation rather as a type of civic duty.

The greatest gift
For those with cystic fibrosis and other long-term illnesses the idea of transplant is deeply imbedded in the psyche. Waiting, you become more dependent on other people and you miss things. You miss life. But you gain things too. There is a rhythm to the world that has nothing to do with the hustle of the daily grind. It reminds you that everything is temporary. The other thing you realise, when dealing with a slow and steady decline in health, is that the greatest gifts are the ones you give away. When you remove ego, the satisfaction is in knowing that you have given.

Dwelling on the technicalities of the legislation doesn’t help the current debate. Everyone can agree on the need for an increase in transplants but the path to achieving this seems to be unclear.

Here's what works: Spain, Croatia and Belgium are the top-performing countries in transplants as measured by the Council of Europe. In these countries, every citizen is a donor unless they choose otherwise. There is an independent transplant authority to monitor the system.

Ireland has neither of these things but has attempted to deal with this issue over the past week with a bizarre emergency debate over an EU directive and a sudden waving of the long-awaited Human Tissue Bill. Awareness is a positive step. However the divisions in opinion and the tiresome political football make a drama out of something that is sensitive – and for the wrong reasons.

To change the rates of transplant in this country we need a change of thinking on the subject, together with proper resources. Last year in Ireland, 78 organs were successfully donated from 244 organs that had been retrieved. This reflects a complex reality: organs can be found unsuitable for many reasons.

We need more organ donor co-ordinators in our intensive care units and we need to move to a “soft” opt-out system. We need a committed independent body to monitor the situation, not one pulled together in response to publicity. The system is the problem. And the way we think about it is too.