Double vision

Image of the eye

By Nigel Bartlett

Of all the human body parts a person can donate after their death, the corneas are the most likely to be used – and yet they are also the least likely to be donated. Now, though, we are able to understand the reasons for this. A University researcher has revealed why it is that even when families are happy to donate their loved one’s heart, kidneys, bones or lungs, many of those same people refuse when it comes to the eyes.

Ophthalmology fellow Mitchell Lawlor (MMed (OphthSc) ’07 PhD ’11), a clinical associate lecturer at the Sydney Eye Hospital, found that as many of 30 per cent of families refuse consent for a deceased person’s corneas to be transplanted, despite being happy to donate other bodily organs. So he interviewed these families to tease out their reasoning.

Lawlor found that people generally view the body in one of two ways. First, there’s the “medical body” view, which is the idea that once you’re dead, you’re dead, and your organs are just spare parts to be used. “That’s a very rational way of viewing the body,” Lawlor says.

Second, however, there’s the “social body”, in which the body is seen as the medium through which people communicate and form relationships. For example, a woman knows her mother through looking at her, talking to her and touching her.

Of all the organs, the eyes seem to be the most important in this respect ... we look at them all the time and tend to form relationships through them

“Of all the organs, the eyes seem to be the most important in this respect, probably because we look at them all the time and we tend to form relationships quite strongly through them,” says Lawlor. “So, at that moment of death, if you ask, ‘Can we remove your loved one’s eyes?’ then you’re potentially fracturing that relationship. For a lot of families that’s extremely confronting and challenging.”

What’s particularly interesting about Lawlor’s research is that it reveals that many people simultaneously hold both views. “In certain circumstances they might say, ‘Yes, I understand that this person is dead and it doesn’t really matter what we donate,’ but then they can flick back to the other view and decide, ‘Oh, I just really feel uncomfortable about removing the eyes,’” he explains.

Public awareness

Lawlor didn’t set out to raise donation rates, but his PhD paper does make suggestions about how the research could help. The main one is that while donation co-ordinators are often attuned to the social-body idea, public education tends to focus on the medical-body view. “In essence, those wishing to increase donation rates have engaged well with the ‘medical’ concept of the body but not so well with the ‘social’ perspective,” he says, and he suggests that policy-makers need to engage with both perspectives.

Without that taking place, he is sceptical about the benefits of public awareness campaigns as a means of raising donation rates, because his previous research has shown such initiatives can backfire.

“I looked at the data for what had happened over the 10 years that the Government had been encouraging people to tell their families about their donation decision. It revealed that the percentage increase of those people saying no to donation was substantially higher than the increase in those people saying yes,” he says. “This could potentially have a negative impact on donation, as families are much more unlikely to override the wishes of somebody who’s said no than somebody who’s said yes.”

Equally, he is not convinced that the decision to donate should be removed from families and left with the donor, as a NSW Government discussion paper has proposed. Many people are happy with the present system, according to a survey he carried out among 400 people indicating their wishes about donation at the RTA.

“That research showed a substantial minority want their family to make the final decision,” Lawlor says. “It’s clearly a complex issue.”