MARK TAYLOR STUFF NZ
Most New Zealanders say they would like to be an organ donor. But only very few of us will donate. Aaron Leaman explains why in the latest part of the Life out of Death series.
There are busy people, and then there’s Taupō Mayor David Trewavas.
As mayor of the popular lake-side town, Trewavas is often called on to attend weekend events or festivals.
It’s an aspect of the job the two-term mayor loves, especially given the challenges of the past 12 months.
Earlier this year, the 55-year-old was told he would need a kidney transplant.
* Potential organ donors being blocked by family and doctors, says audit
* Wellington man Steve Mexted talks about what it is like to wait for a kidney donor
* Organ donation – the gift of a lifetime
Years of taking blood pressure medication had worn out his kidneys.
Fortunately for Trewavas, his wife, Anna, is a compatible – and willing – kidney donor.
The transplant operation is set down for early 2018 , pending Anna passing the last of six medical tests.
Since going public with his condition, Trewavas has been inundated with messages of support.
“When I got the news I’d need a new kidney I was pretty nervous but my anxiety has gone away slightly because I’ve heard so many positive stories from people on the street, as well as family and friends,” he says.
About 463 New Zealanders are currently on the waiting list to receive a kidney. These organs can come from a living or deceased donor.
All up, 519 people are on an organ waiting list in New Zealand.
Trewavas lists himself as a donor on his driver’s licence but says he didn’t give the issue much thought until getting sick.
Waikato Hospital critical care specialist Dr Nick Barnes (DOMINICO ZAPATA/STUFF)
It’s a scenario that’s all too common, says Waikato Hospital intensivist (critical care specialist) Dr Nick Barnes.
“Because a driver’s licence is issued every so often, people might put donor on their licence but then might not give it much thought after that,” Barnes says.
“I think the reality is people go through life thinking it’s going to be pretty sweet, despite all the evidence around them.”
For a person to be a deceased organ donor, they have to be on a breathing machine in an intensive care unit, and usually have severe brain damage.
Only one per cent of deaths in hospitals is compatible with organ donation.
Because of people’s unfamiliarity with organ donation, it can be an issue shrouded in misunderstanding.
One of the most persistent myths is if a person identifies themselves as a donor on their driver’s licence, medical staff won’t work as hard to save them.
Such statements draw a subtle head shake from Barnes.
In reality, doctors and nurses rarely know what’s on a person’s driver’s licence, he says.
“We wouldn’t have a reason to ask if someone wished to be a donor until we think they’re dead or very near to it.
“The patient is the top priority but once they’ve died, or be it brain dead and still on a ventilator, I explain to the family we can’t help them anymore.”
Donor permission is always sought from families, even if a patient has stated their wish to be a donor on their licence.
Research shows families are more likely to give consent to organ donation if they know the wishes of loved ones.
The trends for organ donation in New Zealand over the past few years are heartening.
In 2016, there were 61 deceased donors – an increase of 69 per cent since 2013.
Those 61 donors provided 181 organs.
As of November 2017, 63 deceased patients have donated their organs.
A big reason for the rise in organ donation rates has been a quality improvement programme run across the country’s intensive care units.
Dr James Judson, pictured with Organ Donation New Zealand donor co-ordinator Janice Langlands (MARK TAYLOR/STUFF)
Organ Donation New Zealand medical specialist Dr James Judson says the programme has helped educate health professionals to the possibilities of organ donation in hospitals.
“What happens in intensive care units is vital to the whole organ donation process,” Judson says.
New Zealand rates of donation after brain death (DBD) now rank favourably alongside the United Kingdom and Australia.
In 2016, New Zealand’s DBD rate was 11.7 donors per million population (pmp), compared to 12 pmp in the United Kingdom and 15.5 pmp in Australia.
An obvious area where New Zealand can improve is organ donation after circulatory death (DCD) – a more challenging pathway to organ donation.
Last year, New Zealand’s DCD rate was 1.3 donors pmp, while Australia was 5.3 and the United Kingdom was 8.9.
“Our donation rate has gone up, it’s good, and we’ve done quite well in DBD,” Judson says.
“But where we’ve got more work to do is in DCD.”
Despite the good news, there are those who want to shake-up organ donation in New Zealand.
Campaigners such as Andy Tookey say life-saving donation opportunities are being missed due to the ability of families to override the wishes of would-be donors.
Tookey took up his campaign 15 years ago after he was told his daughter Katie would eventually need a liver transplant.
His call for a donor’s wishes to be respected above those of their family doesn’t sit well with Barnes and Judson who say it’s a simplistic approach to what is a complex and frequently tragic situation.
“Can you imagine vetoing a family’s wishes and what that would look like?” Barnes asks.
“Can you imagine pulling a relative off a body and wheeling the person out, because I can’t.”
In June, then Health Minister Jonathan Coleman released a national strategy aimed at increasing deceased organ donation and transplantation.
The strategy’s priorities include increasing public awareness of organ donation and expanding resources in hospitals for donation.
The strategy follows efforts to boost rates of live organ donation.
The Compensation for Live Organ Donors Act came into effect on December 5 and offers financial support to kidney and liver donors during their recovery from surgery.
Dr Nick Cross, clinical director of the National Renal Transplant Service, is encouraged by the strategy, saying the need to increase donor rates is as pressing as ever.
Each year, about 550 people develop kidney failure, requiring them to go on long-term dialysis or have a transplant.
Importantly, Cross says the national strategy is informed by happenings in Australia. The strategy’s aim to set up a national agency with a mandate to lift organ donation rates could see New Zealand end up with an organisation resembling Australia’s Organ and Tissue Authority (OTA).
“If we can end up with something similar to OTA then I think the strategy will prove very successful and it will result in further growth in deceased organ donation,” Cross says.
In 2008, then Australian Prime Minister Kevin Rudd introduced a national reform programme aimed at increasing organ and tissue donation.
The reform programme’s key objective is to increase the capacity and capability within hospitals to maximise donations and raise community awareness.
The activities of the reform are managed by OTA through Australia’s DonateLife Network.
As part of the reform, Rudd’s government committed $150 million to the organ and tissue donation sector over four years.
Rudd himself is the recipient of a heart valve transplant.
The reform has proved remarkably successful, with 503 Australians becoming deceased organ donors in 2016 – an increase of 104 per cent since 2009.
Leading the country has been the state of Victoria. In 2016, 140 Victorians became deceased organ donors.
OTA national training coordinator Bernie Dwyer says underlying Victoria’s success has been a willingness to “push the boundaries” and explore organ donation with patients other states wouldn’t consider.
“Victoria has always been open to exploring cases that maybe if you look at quickly you think they’re not a potential donor,” she says.
“In Victoria, we systematically work through organ by organ. For example, if someone’s got respiratory disease or heart disease we still look at whether they can donate their kidneys.”
For the past three years, Dwyer has travelled to New Zealand to help run a two-day workshop aimed at increasing health professionals’ understanding and skill in having conversations with potential donor families.
Driving the need to innovate and be bold is the fact Australia, like New Zealand, continues to have a shortfall in transplantable organs.
The need for transplants is expected to increase around the world.
In 2017, the Australian Government launched a new online register, allowing people to sign up as donors. The form takes about a minute to complete.
Research indicates being a registered donor, together with letting family members know about one’s donation decision, is associated with higher family consent rates.
A 2016 Australian audit found 88 per cent of families agree to organ donation when their loved ones is a registered donor.
The rate drops to 52 per cent when patients aren’t registered or share their donation wishes.
New Zealand’s organ donation national strategy discusses improving how people’s donor wishes are recorded, but doesn’t commit to any specifics.
Currently, in New Zealand, donor wishes are recorded on a person’s driver’s licence.
Australia’s Organ and Tissue Authority national medical director Dr Helen Opdam (MARK TAYLOR/STUFF)
Dr Helen Opdam, OTA’s national medical director, says lifting countries’ donation rates can only happen through incremental changes.
She points to Australia’s new online register as an example of an initiative that, in isolation, won’t have a dramatic impact on organ donation rates.
“Should New Zealand, for example, invest in a register is a complex decision to make because a register requires a lot of effort and resources,” Opdam says.
“Currently in Australia we’ve got 6.4 million people registered. There’s modelling that shows to get 10 additional organ donors in Australia it would require an extra one million people to register if that was the only thing we did. This year we spent millions in advertising and got an extra 140,000 to register. So you’ve got to say is that the best way to spend your money or should you put more energy into training doctors and nurses in hospitals.”
Judson shares the belief there is no single, quick solution to lifting a country’s organ donation rates.
Results of the past three years show New Zealand has a solid foundation to grow its donor numbers.
But with renewed focus on lifting donation rates, care should be given to ensuring the process is always respectful to the donor and their family, Judson says.
“Every deceased organ donation comes out of human tragedy and that can’t be ignored.
“It’s never a simple case of here’s a dead person, their organs are no good to them, so they should be used. It’s a very emotional time.”
For Trewavas, apprehension about his upcoming transplant operation is balanced by the anticipation of living life with a healthy kidney.
Waking up feeling good, having energy at the end of the day, and simple past-times, such as walking and swimming, are all things Trewavas has his mind set on.
Among his busy schedule there might also be time for a round of golf.
“I’ll be careful not to rush my recovery but, once I’m back to normal, I plan to get back out on the greens. Indications are that once they drop a new kidney in, I’ll feel like a new person.”