Opt-out organ donation
In August last year a nine-year-old boy named Max Johnson had a heart transplant. The soccer-loving youngster from Cheshire in Britain had been waiting eight desperate months for a suitable donor organ to become available. He told reporters at the Freeman Hospital in Newcastle that he couldn’t thank the donor family enough. “You’ve saved my life,” he said.
In the weeks that followed Max and his family got behind a campaign to change the way organ donations work in Britain. At present, organs can only be donated if explicit approval is given, either by signing a register or if the deceased person told their family they wanted to become an organ donor.
But a new system, named in honour of Max, is on the brink of becoming law. Under Max’s Law, it would be presumed that everyone consents to becoming an organ donor unless they take active steps to opt out. It is thought that the scheme, which has bipartisan support, will save as many as 500 lives a year. A private member’s bill, passed unopposed in the lower house earlier this year, is being reviewed before being debated in the House of Lords.
Here in Australia, there are currently 1400 people on organ transplant waiting lists and a further 12,000 people on dialysis. For some, the wait is excruciating; their lives hang in the balance. It is a feeling 34-year-old Patricia Scheetz knows all too well.
“My health was deteriorating quite rapidly from many different angles, and there were days where I really did wonder if ‘the call’ would come through – my heart would always skip a beat when I heard my phone ring from a private number,” Scheetz says.
Patricia faced complications from a lifetime of managing type 1 diabetes and urgently needed a lifesaving double organ transplant. “I was on dialysis at the time and it felt like my life was one continuous stay at the hospital. I dialysed four days a week, and then had at least one hospital admission every two or three weeks.
“I’d spend my non-dialysis days going from bed to couch and back to bed again, not having the energy to do much more,” she says.
Thankfully the call did come and seven years later Patricia is thriving. “To say that I’m grateful for each and every day is an understatement,” she says.
Given that she owes her life to an organ donor, you would think Patricia would be in favour of Australia adopting an opt-out or “presumed consent” system such as the one now proposed in Britain. But she’s not. “I think suddenly being forced to become a donor creates a knee-jerk reaction and mistrust and misunderstanding,” she says.
Some in the medical profession agree. Dr Helen Opdam is the national medical director of the Organ and Tissue Authority and a member of the Australian and New Zealand Intensive Care Society’s Death and Organ Donation Working Party. She doesn’t believe a system of presumed consent will result in more organ donors.
Opdam says the risk of a presumed consent system is that by taking the responsibility of signing the register away from families they will stop having conversations about donation. People’s wishes will become less clear. It may also lead to some feeling suspicious or coerced, resulting in many taking the steps to opt out.
It is a complex issue, but currently one of the biggest hurdles is getting consent from the deceased person’s family. This is because even when a person has been vocal about becoming a donor and signed the organ donor register, their next of kin still has the final say.
“It is an intensely emotional time for that person’s family,” says Opdam. “We know through the surveys we undertake and the data we collect whenever we talk about donation, the thing that most supports families in making the decision to donate or not is whether they know their loved one’s wishes.”
It is a crucial piece of information. Ninety per cent of suitable deceased people who had told their family they wanted to become an organ donor – especially those who also signed the register – actually became donors. However, in circumstances where the family don’t know how their loved one felt about becoming a donor there is only a 44 per cent consent rate.
It’s also worth remembering that circumstances in which organ donation is possible are actually quite rare. “It’s only possible in about 1200 people a year in Australia,” Opdam says.
There are two scenarios in which organs can be removed from a donor for transplant. The first is when a person is on a ventilator in hospital, probably in intensive care or the emergency department. All efforts to save the person’s life have failed – they’re “brain dead” – but their heart is still beating. Organ donation is also possible when a person is on life support but it’s clear that they’re not going to survive.
In addition to these circumstances, there is also a lengthy list of criteria that assess whether a donor’s organs are suitable – for example, not just their blood group, but the size of the organ and whether the person has had cancer. It’s a thorough process for obvious reasons.
For families trying to come to terms with their loved one’s death, the decision to consent to organ donation is further complicated by the logistics involved in the process. “There’s a lot of information gathering that’s required about the donor. There are further tests that need to be undertaken. Once families understand all of this, some of them feel that they just can’t go through with it,” Opdam says.
Nonetheless, most families want to uphold the wishes of the person they love, which is why Opdam is so passionate about Australia’s organ donation register.
“The most powerful and strongest way we get families to agree to donate to donation is through opting in,” she says. “[A system of presumed consent] may actually cause more distrust in the community. People may be less willing to donate than if we had a different strategy and positive messaging about donation.”
So how can we increase organ donation in Australia? Opdam is clear about the answer. “By encouraging people to register on the Australian organ donor register, their willingness to be a donor – they’re putting their hand up, and telling their family they’re willing to be a donor. That is highly effective at increasing our consent rate.”
In addition Opdam would like more work done to improve the organ donation systems that are in place in Australian hospitals. In particular, she notes that training staff to more effectively communicate with families in the throes of grief can make an enormous difference.
“It’s important that those families hear information about what donation and transplantation is in a very compassionate, skilled way. The family needs support to make that decision because, ultimately, it’s a decision that they’ll have to live with.”
Michelle Seccull, a 37-year-old nursing and paramedic student, understands the emotion behind organ donation better than she would like to. In 2011, her three-year-old son, Ethan, was struck by a passenger train after scaling the family’s back fence to wave at the passing trains.
Ethan was flown to the Royal Children’s Hospital in Melbourne where surgeons did everything they could to revive him, but the brain damage he sustained was too great for his recovery.
When the topic of organ donation came up, the Secculls knew that their caring little boy would want to help others. Their decision to donate Ethan’s organs led to life-saving surgery for three people – an adult male and two young children. “It is very humbling to know that our little boy has touched three people’s lives in the way that he has,” says Michelle.
The Seccull family set up the Ethan “Jimmy” Seccull Foundation to help raise awareness of organ and tissue donation. The key message of the foundation is to encourage people to talk to their families about organ donation and, if they are happy to become donors, to sign the register.
“If a family knows that their loved one wanted to donate their organs, then nine times out of 10 the family will say yes,” Michelle says. “The most important thing anyone can do for organ donation is to have that conversation.”
This article was first published in the print edition of The Saturday Paper on Jun 2, 2018 as "Elective organ". Subscribe here.