Marlene Bevern: The story of Australia’s first VAD organ donor
Most organ donors do not choose when their liver or lungs are donated, but Marlene Bevern was a special case.
After being diagnosed with an aggressive form of motor neurone disease, the nurse from Ballarat chose to end her life under Victoria’s voluntary assisted dying (VAD) laws.
She asked her VAD doctor, Associate Professor James Hurley, about organ donation.
Of Professor Hurley’s 100 VAD patients, Marlene was the first to ask about organ donation who was actually eligible, so the Ballarat physician launched into making it happen.
Initially, Marlene planned to die at home.
But donating her organs required her to die in an ICU bed.
Scott Bevern told AusDoc that his mother had no doubts about dying in hospital for the sake of donating her organs and “would have gone to Sydney if she had to”.
He said she was a proud organ donor.
“Anytime a news story like that came up, Mum would say, ‘I’m an organ donor.’
“When she was a nurse in the 1980s at the hospital in Ballarat, she would donate blood every couple of months while she was at work.
“She didn’t make a fuss about it.
“She didn’t tell other people they should do it; it was just her choice.”
Marlene had been active throughout her life, playing basketball and golf.
But as she entered her 60s, her right cheek and mouth stopped moving properly.
“She kept saying her tongue felt heavy and lazy and wasn’t working properly,” Scott said.
“Then maybe four or five months later, there was a little weakness in the limbs.
“She was struggling to open doors or jars of food.”
Marlene would eventually receive a diagnosis of bulbar-onset motor neurone disease.
“By the time we got the diagnosis, it was pretty bad. She was on a walking stick and really having to hold my arm just to cross the road,” Scott said.
“For 18 months, she was going through the process of eliminating all other things. Another symptom would pop up, and she would have to go for another test and see another specialist.
“It wasn’t until the motor neurone symptoms really came to the fore that she finally got in with a neurologist.
“As soon as he looked at her, he pretty much knew what was wrong.”
The news was devastating for the family.
“Mum was pissed off that it took that long to get the diagnosis and then to get that as the diagnosis … Within around five minutes, she basically said, ‘I don’t want to live like this.’”
Two weeks later, Scott was watching a documentary about VAD in the Netherlands and, for the first time, realised it was an option for his mother.
“As soon as I said it was available here in Victoria, her eyes lit up and she said, ‘Get it done.’”
To set up organ donation, Professor Hurley spent weeks co-ordinating with the hospital’s organ donation navigator and ICU staff.
He had to book an ICU bed, despite knowing it could be taken over on the day given the pressure on rural hospitals.
They also checked none of the ICU staff or members of the organ retrieval team, who travelled 100km from Melbourne, were conscientious objectors to VAD.
Marlene’s DonateLife co-ordinator said she was a likely candidate for donating her lungs, liver and kidneys, pending chest X-rays, CT scans and blood tests to screen for infections or cancer.
According to DonateLife Victoria, 10-15% of VAD patients are likely to be eligible organ donors compared with just 1-2% of patients who die in hospital.
Marlene completed her own organ donation paperwork, the forms completed by the patient’s next of kin in almost all other circumstances.
On the day of his mother’s death, Scott accompanied her to the hospital along with his wife, his sister and his aunt.
They were taken to the far end of the ICU, where nobody else would walk past the room and they could step into an adjacent waiting room if they needed time alone.
They played CDs chosen by Marlene, including Elvis Presley hits.
Scott held Marlene’s right hand and his sister, Justine, held Marlene’s left hand.
“We were just sitting around, laughing and joking, and Mum was relaxing,” Scott said.
“It was what Mum wanted, so we didn’t make it morbid.
“She wasn’t scared; she wasn’t nervous.
“All she kept saying was, ‘I’m gonna go and play golf with Bob,’ her late husband.
“They had played golf together for years.”
In the last few minutes of Marlene’s life, DonateLife co-ordinater Lana revealed how many people were going to receive Marlene’s organs.
“About 10-15 minutes before Mum passed away, Lana came in and Mum held up three fingers to say, ‘Three people, I’m helping three people,’” said Scott.
“Lana held up four fingers and said, ‘No, you’ve got two kidneys. You’re helping four people.’
“It was amazing to see the reaction on Mum’s face.
“I think it did bring her a lot of comfort.”
Marlene’s eye tissue was also donated to motor neurone disease research.
Scott said organ donation helped bring comfort to the family. After Marlene died, they went home and held a toast to her.
“Losing a close family member is terrible under all circumstances, but knowing this was going to happen made a difference, not just the organ donation but her eyes being donated to research,” he said.
“It really makes me proud that Mum was able to do that.”
| Earlier this year AusDoc asked both Professor Hurley and retired renal physician Dr Harley Powell about the logistical, ethical and financial questions of organ donation after VAD. This is what they said at the time. AD: Is the lethal substance used in VAD an impediment to the organ donation process? Professor Hurley: There is no choice between VAD drugs — you can only use what’s been deemed appropriate by the law and regulation. The only difference is route of administration. If the patient takes the VAD drug orally, this would make it difficult for organ donation purposes because the timing of death is harder to predict. It might be within minutes but sometimes it’s longer. With practitioner administration, it’s almost like a sedative and the timing of death is more predictable. Dr Harley Powell: Normally with organ donation, retrieval happens when the patient is brain dead. Cessation of all brain function, brain death, is the criteria for most organ donations from deceased donors. But once a patient undergoing VAD has been given the drugs, which include higher doses of well-known anaesthetic drugs, it’s difficult to determine brain death. Loss of life signs — the patient not breathing, not having a response to stimuli or their pupils aren’t reacting — are obscured by sedatives. The only reliable measure of death after being given VAD drugs would be cardiac arrest. Once the heart has stopped, the operation can begin. AD: If you were discussing VAD with a patient, would you feel comfortable prompting the organ donation conversation? Professor Hurley: I’d have the VAD application done and out of the way before asking in a general way, like ‘by the way, are you an organ donor?’ I would not ask those with cancer or who are otherwise too high risk for transplantation purposes. Dr Powell: Mentioning to a potential VAD patient the possibility of organ donation too early could be seen as providing an incentive for VAD to some people. It would be best if organ donation is not discussed until the patient has made their third and final request for VAD. AD: Other countries have established systems where the doctor providing VAD is siloed off from the organ donation process. Do you think there should be that degree of separation? Professor Hurley: Some countries in Europe have been proactive and they’ve been doing VAD for longer. It’s still relatively early days here. With Victoria reviewing its legislation after five years in operation, I would imagine that people would be keen to keep VAD and organ donation separate, not to blur the two. But if you have a VAD patient who wishes to donate their organs and they might be suitable, they have to be linked to a hospital system where that can be done. At this stage, it just can’t be done in the community, which is where VAD will usually happen. AD: What compensation is available for doctors organising organ donation in a patient undergoing VAD? Dr Powell: There is currently no remuneration to encourage VAD doctors to arrange organ donation. Donation after VAD is more complicated than co-ordinating organ donation after brain death in hospital, where it all runs very smoothly and DonateLife handles everything. But if you’re a GP or other specialist with a patient who wants to undergo VAD, you essentially have to yourself. You would have to speak to a lot of separate people to organise it, including co-ordinating with the hospital where the patient will be admitted as well as the organ donation service. It is a huge undertaking for the VAD practitioner and takes many hours of work, for which there is no remuneration except the gratification of having provided a very valuable service. I’ve communicated with the Victorian Minister for Health and have told her and her department many times that if there was a financial incentive, then more doctors would assist suitable patients. AD: Are there economic benefits to making organ donation available to patients undergoing VAD? Dr Powell: Saving two patients with two kidneys who would otherwise be on dialysis, that’s at a cost at around $50,000 each or $100,000 in total per year to the health budget. Compared to this, the cost to the state would be trivial if VAD doctors were encouraged to ask suitable VAD patients to consider being organ donors. There are absolutely no negatives at all from organ donation, because the health budget benefits, the organ recipients benefit, and the VAD patient gets potential gratification from knowing some good comes from their death. The most suitable VAD patients for organ donation are those with non-transplantable disease such as motor neurone disease. In the first three years of VAD in Victoria there were 90 patients who died with this diagnosis. But none of them were organ donors. |
More information: DonateLife website
