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Culture change needed, not organ donor register - Coleman

10:40 am on 29 July 2016 

Health Minister Jonathan Coleman has ruled out an organ donation register for improving New Zealand's low donor rates, but there is a clear way forward, he says.

Person in hospital bed.

Photo: 123RF

When Katie Tookey was born 14 years ago, her father, Andy Tookey, was told she would be dead within a year unless she had a liver transplant.

"The doctor said, 'don't worry, because with a liver transplant she'll have a 97 percent chance of having a normal life.' I went home and looked it up and thought, 'yes, that's correct, but her chances of getting one are pretty much nil'."

Mr Tookey's experience prompted him to found GiveLife - a lobby group for organ donation reform in New Zealand, where demand for organ transplants vastly outstrips supply.

About 700 people are on the waiting list for kidney transplants, with dozens more waiting for lung, liver, and heart transplants.

But New Zealand's rate of donation is low: 30th out of 47 measured countries around the world, with fewer than 12 donors per million people.

The UK's rate is nearly double that, and Spain's is nearly four times higher than New Zealand's.

To try to boost donor numbers, this year the Ministry of Health began a review of organ donation practices.

Public submissions close today, and the Health Minister, Jonathan Coleman, said there was a clear way forward.

Read the Ministry's initial report here.

"Essentially, it's around changing the culture around organ donation - having a coherent and cohesive national strategy, making the information on the drivers' licence more readily available, but really importantly encouraging people to have those conversations with family."

Currently, drivers' licences were the only way people could declare themselves for organ donation, but a deceased person's family could override that at any time - and they do.

An initial report prepared by the Ministry of Health showed about 55 percent of eligible donors' families choose not to allow their loved ones' organs to be donated.

Mr Tookey said there needed to be a change in the way doctors approached families.

"They're being asked at the worst possible time because there's no preconditioning, and possibly because there's no organ donor register and no way of families knowing what their loved ones' wishes were."

"So I think their default position is to say 'no' - it's almost like a reflex action."

A doctor from Wellington hospital's intensive care unit, Chris Poynter, said he had those conversations with families a few times a year.

He said it was always difficult knowing what to say - especially when the conversations were so rare - but specialised, trained teams of people could help.

"All of those processes, all of those difficulties ... they become easier when you've got passionate people around to help solve those problems."

"It's exhausting. Organ donations are exhausting. Not just for families, but for staff."

"Support which can come in from outside, I think, is a valuable thing to do."

The UK and Australia have both introduced donor registers, which allow people to opt-in to becoming donors, in addition to the declaration on their drivers' licences.

The policy has been effective: in Australia, 93 percent of registered donors' families allow their organs to be used.

Mr Coleman ruled out a register, saying there was no proof it improved donation rates, but Mr Tookey said it could make life easier for both families and doctors.

Further information will be provided to the Minister of Health later this year.

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