Pragmatic nurse wants to depart on her terms

INVERLOCH’S Jenny Barnes was a nurse for 40 years.
While at work in May last year she felt unwell and it was discovered that she had an aggressive form of brain tumour.
Ordinarily she would have 15 to 18 months to live but there are cases of people living up to three years.
Common traits with nurses are that they are practical and kind in equal measure. Not surprisingly then, long before her diagnosis, she had supported voluntary assisted dying.
“I’ve seen a lot of deaths and some of them have been far from ideal,” Jenny said.
“Now I have a terminal illness. It’s an aggressive form of brain cancer and I know that it can lead to a very undignified death.
“I may be lucky and I may just drift into a slumber. But I may suffer with seizures. I could certainly potentially be confused or have my words so jumbled that I make no sense.
“In December I started to become confused and kept losing things. I couldn’t walk in a straight line.”
With surgery, Jenny regained her speech, and her sense of humour is clearly intact, but she has trouble spelling words.
“You lose your personality in time,” Jenny said.
“I’ve always been able to talk underwater and if I don’t make sense, that’s just not me.
“I hold that dearly. If I can’t talk or eat, there’s no point me being here.”
Jenny and her husband Ken have two sons, Morgan and Doug, who also have young families. They’ve all spoken about what the future may hold and support Jenny’s wishes entirely.
She agrees that voluntary assisted dying might not be required – she’d just like to have that option.
“Right now I’m not on any other treatment apart from blood thinners.
“I just have an MRI every three months to see if the tumour is stable.
Then she meets with experts from the Epworth Hospital and Peter McCallum Institute where they discuss the options of more surgery, clinical trials or to retain the status quo.
“I know that at some point in time they’re not going to be able to help me and they’ll say, ‘No, we can’t operate, we can’t give you treatments anymore, and this is the beginning of the end’.”
While she’s well enough, Jenny is throwing her full support behind the campaign for voluntary assisted dying.
Legislation is set to be introduced into State Parliament by health minister Jill Hennessy, at any point after the end of July.
Jenny’s main message is that state members of parliament should listen to the 70 per cent (or more actually) of people who want a voluntary assisted dying law as an option at the end of life and she is encouraging people to tell their local state member.
The legislation will be decided by a conscience vote.
“Palliative care in Victoria is very good but I’ve seen that for some it doesn’t work.
“I know I will want another option. And it’s not just for myself, it’s for my family.
“It’s no benefit for my husband and the boys for it to be a long and drawn out procedure just because I still have breath.
“It’s very important to me to have control of my destiny. Anybody that knows me knows that I wouldn’t want it any other way.
“As it stands there is no law to help me or others like me.
“My family fully supports my choice. So do my friends in nursing as well as most people I know in our local community.
“Your local state member of parliament is the difference between this law passing or not. Most of us want this law and that’s what I want our politicians to focus on.
“It’s important for politicians to be there for their community because they’re not there just representing themselves.
“I don’t want to die. No-one wants to die. Because we all want to see the next grandchild, the next birthday, the trees bloom or whatever – we all want that.
“I’d like to be there for the 40th wedding anniversary with my husband, Ken.”
Health Minister, Jill Hennessy, said that the reality for some Victorians who are at the end of their lives is that even the best palliative care will not relieve pain.
“We must follow the lead of other countries and do more to give people with terminal illness genuine choice at the end of their lives.
“Therefore, consistent with the proposed voluntary assisted dying framework recommended in the Parliamentary Committee Inquiry into end of life choices final report, the government will introduce legislation into Parliament in 2017 to legalise voluntary assisted dying for terminally ill people in Victoria.”
An expert panel is advising the government on the exact detail of the legislation.
It is chaired by former AMA Federal president, Prof Brian Owler, and it includes leading Palliative Care specialists, Prof Ian Maddocks and Dr Roger Hunt. It is due to report at the end of July.
“While details of the legislation are still being worked out, we believe it will have a very narrow scope and will operate with tight safeguards to protect the vulnerable,” Ms Hennessy said.
“It is likely to be confined to those who have a terminal illness or an incurable illness and are in the last stage of life.
“The person will need to be an adult of sound mind.
“The request for assistance in dying would need to be 100 per cent voluntary.
“It’s likely two doctors independent of each other would need to verify the request and follow strict medical protocols and rigorous checks and balances.
“It is important to note that dementia would be excluded. The process would not be available to anyone under 18. Disability is not a criterion for using the law: the person will need to be terminally ill.”
The Stop Victorians Suffering campaign is supported by Andrew Denton’s organisation, Go Gentle Australia – www.gogentleaustralia.org.au
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or more about the campaign go to http://www.stopvictorianssuffering.org.au/petition_jen_barnes and https://www.facebook.com/gogentleaus/