DonateLife Week: how to tell your family you want to be an organ donor, as donation consent rate drops @news.com.au

ByRahul

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Just over half of Australian families are saying ‘yes’ to their loved ones becoming organ donors when asked, with the consent rate plunging from pre-pandemic levels.

In 2022, 54 per cent of families nationally agreed to donation – down from 59 per cent in 2019, according to DonateLife.

Family consent is required for a person to donate their organs and tissue, regardless of whether they are on the Australian Organ Donor Register.

“A decrease in the consent rate means … fewer people having access to a transplant,” Organ and Tissue Authority chief executive Lucinda Barry said.

In 2022, 454 Australians donated organs to 1224 recipients, a decrease of about 15 per cent from pre-Covid figures.

Ms Barry said multiple factors could influence a family’s decision, including the grief and trauma of a loved one’s passing, perceived cultural or religious barriers, misunderstanding about the donation process and not knowing their loved one’s wishes.

The pandemic also had a “significant impact”, with hospital visitation restrictions forcing families to have difficult end-of-life conversations over phone or video calls.

“That can feel quite transactional,” she said. “Before Covid, DonateLife nurses would sometimes spend one to two days with families, answering their questions, supporting them and giving families the chance to comprehend what donation is about.”

A new YouGov poll – released exclusively to News Corp for DonateLife Week, from July 23-30 – also reveals 71 per cent of Australians who support organ donation have never raised the topic with their families.

Having this conversation was crucial to donation occurring, Ms Barry said, as nine in 10 families said yes when their loved one was registered and six in 10 if they had discussed donation with their loved one.

But only four in 10 agree when a loved one’s wishes aren’t known.

According to the poll of 1025 Aussies, the most common reasons for not having the conversation are: “I’m already registered” (24 per cent), “there is never a good time” for the “downer” of a conversation (21 per cent) and “my family will decide” (19 per cent).

About one in 10 also said the topic was “taboo” in their family, or they faced religious and cultural barriers.

Men were more likely than women, and the younger generations than Baby Boomers, to report concerns they “might jinx themselves by talking about death”.

Ms Barry said all major religions in Australia supported donation, and speaking about it

could be “as simple as having a conversation at the dinner table”.

OTA national medical director Helen Opdam said her experience as a senior intensive care specialist at Melbourne’s Austin Hospital showed “families want to honour the wishes of the person they love”.

“When donation is spoken about in ICU, families often say it came up as a brief mention – they were watching something on TV and their loved one said, ‘I registered as a donor, I think donation is a good thing’,” Dr Opdam said.

“(Discussing donation) it is a huge benefit to families who are in that situation none of us want to be in, to know they are doing the right thing by the person they love.”

Ms Barry expected consent rates to rise now most Covid hospital restrictions had been removed.

But she said the OTA aimed to further increase consent by encouraging all Australians aged 16-plus to register as donors and tell their families, and having a specialist nurse present in all donation conversations with families in ICU.

She said the latter currently occurred about 80 per cent of the time, with 260 DonateLife nurses covering 90 hospitals nationwide.

samantha.landy@news.com.au

To learn more about organ donation and registration, watch a Q&A with a donation specialist nurse on Herald Sun, Daily Telegraph, Courier Mail and The Advertiser Facebook pages from 7pm on July 26.

POLICE OFFICER’S FINAL SELFLESS ACT TRANSFORMS TWO LIVES

Sonya Leeding didn’t quite understand her husband would not survive the shotgun wound to his head when she was asked about the prospect of donating his organs.

So she will always be grateful that, in her grief, she made a decision that saved another person’s life.

It’s been 12 years since Detective Senior Constable Damian Leeding was shot at close range in a botched armed robbery, dying in hospital three days later.

Ms Leeding, also a detective, was on maternity leave and caring for a baby and a toddler when police knocked on her door to tell her the heartbreaking news.

At the hospital, after doctors had run tests to determine whether there was any activity in Damian’s brain, people began approaching a bewildered Sonya about important decisions that needed to be made.

“I remember looking at my dad and saying, ‘what are they all talking about? Is this no good? Is there no hope?’” she said.

“And he said, ‘look love, I don’t think it’s going to be a good outcome’.”

Ms Leeding had spoken to her husband about organ donation. She was a registered organ donor and carried the card in her wallet. It was important to her.

He was happy to go along, but the prospect of death to the full-of-life police officer had seemed an impossible thing.

“I’d always said, if I can’t use it, make sure someone else can live a full, happy life,” Ms Leeding said.

She never imagined he’d die before her, that she’d be left to make such decisions.

“We donated both kidneys. That was all they were able to use,” she said.

“I was always upset that Damian couldn’t donate more and that we could only save two people.

“But I’m happy with the decision we made, I’m at peace with it.”

HUSBAND HONOURS ‘GIVING’ WIFE’S MEMORY

For Brett Dalton, consenting to his wife, Tania, becoming an organ donor was “an easy decision”.

“Tania and I had both registered to be organ donors,” he said. “But it’s funny because when we did it, I remember thinking ‘who would want my 89-year-old organs?’

“And then Tan died at 49. You always think you’ll grow old together.”

Tania was able to donate all her major organs following her death last August, saving seven lives.

Mr Dalton has since endured a year of sad milestones. He has spent his first Christmas without his parter of 13 years, his first birthday alone and in May, he put on a party with family and friends for what would have been Tania’s 50th.

But he has no plans to mark the first anniversary of her death following surgery to remove a tumour behind her right ear. Instead, the 60-year-old wants to honour Tania’s memory by spreading the word about the benefits of organ donation.

An appointment with an audiologist for a hearing aid in June 2022 sparked a series of events that resulted in Tania being diagnosed as having a 3×1.5cm tumour behind her right ear.

She went into surgery on August 1 and appeared to come out of it well, talking with loved ones afterwards. But on August 3, as she was taken down to have a CT scan, she had a seizure and had to have a second surgery.

She was pronounced brain dead on August 5.

“I remember saying at her service that there are now seven other families that don’t have to suffer the grief we were feeling because she donated her organs,” Mr Dalton said.

“Tania was so giving in life, and I like to think that she is still giving in death.”

GRATEFUL LUNG TRANSPLANT RECIPIENT PAYS IT FORWARD

Most people in Bruce and Yvonne Mackintosh’s position would cry, “why us?” And with good reason.

Their daughter, Nicole, was diagnosed with cystic fibrosis at one month old and had two lung transplants as an adult, before succumbing to cancer in 2021.

Instead, the Ballarat couple are thankful the transplants gave them many valuable years with Nicole, who was able to donate her corneas when she died.

“She was rapt with her new lungs,” Mr Mackintosh said of Nicole’s first transplant. “She didn’t need her oxygen tank afterwards, she had a new freedom and was able to do so much more.

“She became a real advocate for transplants and organ donation then and would regularly talk to high school students, nursing students and even doctors on the benefits.”

But eight years after the surgery, Nicole’s body rejected her new lungs and she needed a second transplant. She took that in her stride too, making the most of her life and honouring the gift her donors gave her, even getting the word ‘Joy’ tattooed on her wrist.

In April 2021, the Mackintosh family was at a wedding when Nicole complained of a “tight tummy”. She was diagnosed with liver cancer after a doctor’s check up a few days later, and died just a month later at the age of 44.

“She talked to us about wanting to donate what she could, and as it turned out, her corneas were viable so they went to two different people,” Mrs Mackintosh said. “We had a beautiful letter from one (recipient) who said she could now read the bible where she couldn’t before.

“It is special for us to know that two people can now see because of Nicole. She had received the gift of a second chance from others, so she wanted to be able to give that gift too.”

‘IT’S IMPORTANT TO US TO KNOW SHE MAY HAVE SAVED SOMEONE’S LIFE’

Melinda Matthews was the epitome of health when she arrived at work one day in March and collapsed in the carpark.

Tests later revealed the 46-year-old had suffered an intracranial haemorrhage and she was placed on life support.

While she was in the Intensive Care Unit of Newcastle’s John Hunter Hospital, Melinda’s family and loved ones gathered to say their final farewells and have a tragic conversation.

“A nurse … told us Mel was (registered as) an organ donor and asked if we would like to honour her wishes,” Melinda’s sister, Leanne Holloway, said. “We didn’t know Mel was a donor but it was a no-brainer for us (to say yes).”

Melinda’s lungs, liver and both kidneys were viable donor organs, and two heart valves were stored for possible donation.

Ms Holloway said the family received a pack from DonateLife following the donation telling them non-identifying details of who her sister’s organs had gone to, along with a card asking them if they would like to be contacted if recipients were willing.

“We would love to hear from the people who received Mel’s organs,” Ms Holloway said. “It’s important to us to know that she may have improved the life of someone, or even saved someone’s life.

“We were told one of her kidneys went to an adult and another to a teenager, both of whom had been on dialysis. There have also been lots of conversations with friends who have told us they will make it a priority to register for organ donation.”

Leanne wants her sister to be remembered as a creative person who painted, drew and made pottery, as a crazy cat lover, and as someone who was friends with people from a range of different backgrounds and who never judged anyone.

MATCH PROMOTES ‘OPPORTUNITY TO GIVE SOMEBODY A BETTER LIFE’

In a heartwarming tribute to the transformative power of organ donation, two NT football teams took to the field Saturday night for the annual Theodore Kassaras Memorial Cup.

The match between University Azzuri and Hellenic Athletic Club kicked off the start of DonateLife Week, a period of personal significance for Azzuri president and event creator John Kassaras.

The cup was inspired by Kassaras’ late father, Theodore, a former Hellenic team member whose life was forever changed by a kidney transplant in the early 90s.

“My father was in his 30s when he developed kidney failure and basically survived by doing dialysis three times a week for about 10 years,” Kassaras said.

“Back in those days, dialysis was pretty full on, my father had to insert needles into his arm, those big chunky needles, and often needed help, so it would be me or my mum helping put his needles in, taking them off, responding to power outages, all sorts of things.”

Theodore was placed on the organ donor waitlist in the NT but due to lack of availability, his chances of being approved were low.

“The biggest barrier to him getting an organ was the lack of donors in Darwin. So in 1988, his kidney specialist told him that unless he moved to another major city in Australia, his chances of receiving a donor organ were very, very low,” Mr Kassaras said.

“Our whole family, my mum, myself and my two sisters all relocated and (Dad) continued doing dialysis for about three years.

“Then one day in the early ’90s, he got the phone call that his turn had come to receive a kidney.”

The operation not only freed Theodore from the restraints of dialysis, but gave him and his family a new lease on life.

Despite the challenges of post-transplant medication and the need for constant monitoring, Theodore savoured the freedom to live fully.

Mr Kassaras moved back to Darwin after his dad died in 2013 from an aneurysm. He went on to establish the annual Cup fixture as a way to not only honour his father’s legacy, but promote the positive impacts of organ donation.

Of the 454 deceased organ donors in Australia last year, only one was from the NT, resulting in two transplant recipients from the country’s total of 1224, according to DonateLife.

The NT also had the lowest consent rate, with 91 per cent of families who were asked to consent to a loved one becoming an organ donor declining last year.

“My father wouldn’t have lived until he was 67 without his new kidney,” Mr Kassaras said.

“(Beforehand) he was getting to the point where he was thinking this is never going to end and there’s no quality of life.

“(Organ donation) is a very personal thing and there’s no judgment around it. I just think people should at least have a think about it, consider it and chat with their family, because as unfortunate as it is when someone passes away, it is an opportunity to give somebody a better life.”

Originally published as Concern as fewer Australian families say ‘yes’ to organ donation



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