Are you in or out? The issue of opt-out organ donation

It’s something you don’t really think too much about. It’s something that will happen to someone else. That’s what Martina originally thought when she signed up for an organ donor card.

“For years I’ve carried a donor card. I just did. From the very first time I became aware organs were donated, I thought ‘that’s a brilliant idea’ and I just always carried a card.”

Although she didn’t give it too much thought, Martina did discuss donating her organs with her son, Éamonn, her only child. When discussing what she wanted, Martina says “I had always had a card and I had said it to Éamonn, if anything happens to me, you’ll know what to do, not thinking it would be the other way”.

Éamonn was killed in a car crash in the summer of 2006. Martina then had a decision to make, whether she wanted to donate her son’s organs or not. She says, for her, the decision was actually easier than it might have been. “It wasn’t a hard decision. To get the opportunity to give this gift, that is a very comforting thing for us.”

After donating her son’s organs, Martina Goggin decided to start the ‘Strange Boat’ foundation, which was originally done with the intention of keeping alive the memory of her son and now offers support to other donor families.

Regarding her decision, Martina said that “The altruistic side of it is very important. That you feel you are giving something that it’s not a taking”.

This is something she highlights as being crucially important to the current debate on whether opt-out organ donation should be legislated for.

Opt-out organ donation is where consent for donations after death is presumed, unless someone clearly says they don’t want to be a donor. At the moment, when a potential donor is identified their family is asked for consent for donation.

The system being proposed is a ‘soft’ opt-out system, where organs would not be removed against the wishes of the next of kin. This differs from a ‘hard’ system, where the consent of next of kin is not needed. This system was legislated in Brazil before being removed after just a year following a public backlash against organ donation.

Opt-out has been brought in for a large number of European counties, including Croatia, Austria and Spain, which boasts the highest rate of organ donation in Europe with 35 donors per million of population (PMP). This compares to Irelands rate of just over 20 pmp in 2012, still reasonably high by EU averages.

For the past few years the donor rates in Ireland have varied wildly. 2009 was a record year, the amount in 2010 saw the worst ever decline in donor rates, 2011 saw a new record high, while the number in 2012 saw the number of donors again fall by almost 20 per cent.

In October, an Oireachtas committee called for the introduction of an opt-out system, with chairman Jerry Buttimer saying “Countries that have changed to opt-out systems have seen significant increases in their rates of organ donation”.

Those in favour of opt-out argue that it could help increase the number of potential donors, and could provide organs for some of those on the transplant lists.

However, Head of the Irish Kidney Association Mark Murphy disagrees. “If you look at Europe, opt-out gets used nowhere in practise. There’s this misconception, largely regarding Spain. The law remains on the statute books, but has never been used.”

Murphy also points out that while opt-out legislation was on the books for years it was only after a decade, once Spain brought in additional measures to deal with organ donations, that levels began to rise.

“They were the ones who devised the donor coordinator role and set up a postgraduate study. They decided to set up the National Transplant Organisation. That was the core difference, they started to manage organ donation. Set up the courses, set up the practises, setup the studies.”

This view has been echoed by many, who argue that the numbers in Spain are not caused by opt-out, but rather by how organ donation is organised and handled by the authorities.

Writing in the British Medical Journal Professor John Fabre said, “In 1989 Spain introduced a comprehensive, nationally organised organ donation system.” This included “the placement of transplant coordinators at each donor hospital… [and] constructing a positive social climate for donations and generating trust in the donation system.

“Spain has shown that the highest level of organ donation can be obtained while respecting the anatomy of the individual and family, without presumed consent.”

What is also viewed by some as a problem in Ireland is a lack of a single body to manage organ donation, which the vast majority of EU countries have. The EU introduced a directive which allowed for more than one competent authority for Scotland, Wales and Northern Ireland, which was originally drawn up in the case of one of them leaving the United Kingdom. Ireland used this to divide competencies between the Health Service Executive (HSE) and the Irish Medicines Board (IMB).

“There is a lack of will in Ireland to have a transplant authority”, Murphy claimed. “Instead of creating an authority, they [the government] gave the competencies to the HSE and the IMB. The UK amendment was regional. No one in their wildest dreams thought that anyone would break up the competencies between two organisations, like the Irish did”.

Whatever the legislation is changed to organ donation can still have many positive effects, if handled correctly. Aside from the obvious benefits to those on transplant lists, Martina felt that being able to donate her son’s organs was a help for her, and urges people to discuss it with their family.

“What’s not highlighted enough [is] the involvement and benefit to the donor family to know that some aspect of their loved ones might benefit somebody, [which is] hugely important”, she said. “It was the one tiny chink of light that came in. The reason it wasn’t hard was because we had discussed it, and I would stress that to everybody”.

Paul O’Donoghue

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