This article appeared in the Geelong Advertiser summing up my concerns regarding death.
This web site is about our right as human beings to die on our terms and this article about Monica sums up the feelings of most.
It also mentions Advance Care Planning, a series of steps you can take to help you plan for your future health care.
How would you like to die?
Monica Hayes has accepted that she is going to die.
The Portarlington resident was diagnosed with motor neuron disease on April 29, 2015.
Since then, her speech has deteriorated and the muscles in her throat are giving up.
“I didn’t know what was wrong,” she said.
“It’s a slow form of death, because your cells are dying.”
Faced with so many unknowns, the 62-year-old is using her remaining time to advocate for Advance Care Planning — a legal plan outlining a patient’s last wishes regarding death and medical intervention.
Geelong’s ACP program is run through Barwon Health at University Hospital.
Even before her diagnosis, Monica had an advanced care plan in place.
“It just emphasised the importance of having one — because of what I face as my body deteriorates,” she said.
“So much planning goes into entering this world, but we don’t plan to exit. It’s just as important, and nothing to be feared.”
She stressed the importance of being an “assertive, well-informed patient”.
“ACP gets tangled up with euthanasia — it’s not active death, it is allowing people to die naturally.
“It’s about respecting my wishes with what they do to my body.”
With a background in clinical psychology and occupational rehabilitation, Monica also spent years as an elected representative in local government.
This included two stints serving on the Essendon City council, from 1985 to 1991, and one year as the Essendon Mayor at a time when Neale Daniher was playing for Essendon Football Club.
Daniher went public with his own battle with motor neuron disease earlier this year, and has dedicated himself to educating others about the disease he calls “the beast”.
But Monica realises no amount of ice-buckets can cure her — the most important thing for her now is to save her family the anguish and confusion of guessing at her last requests.
“You have to have clear thinking and recognise exactly what’s happening to make a clear decision,” she said.
“What would I want done? What are my fundamental beliefs about medical intervention? I’m not empowering someone to make decisions for me, but to interpret my needs.”
She believes Geelong residents are uniquely positioned to take control of their last moments.
“We’re really privileged in Geelong to have the ACP team,” she said.
“They’re real experts and they really talk you through things that you might not usually think of.”
Unlike a legal will, which only comes into effect once a person has died, an advance care plan can be instituted following a medical emergency such as a stroke or heart attack.
It can be tailored to include refusal of treatment requests, and is protected under the Victorian Medical Treatment Act (1988).
`You have to have clear thinking and recognise exactly what’s happening to make a clear decision.’ But the plan is only officially recognised on a state-by-state basis — which means if Monica leaves Victoria, doctors in another state may be under no obligation to abide by her requests.
“Why isn’t there a federally recognised system in place, linked to something like Medicare?” she asked.
“If there’s one thing I’d like as a legacy, it would be that at least you could travel freely and this would apply everywhere.”
For Monica, ACP is about eliminating “those what-ifs and if-onlys that can tear a family apart”.
“You often see disputes among family over what to do,” she said.
“As soon as you switch on a machine someone has to make a decision about when to switch it off — that’s too much to ask of our medical professionals, and to impose that decision on loved ones is equally unethical.”
But Monica’s set of decisions is only one of the options available through the dynamic ACP program.
Barwon Health ACP program co-ordinator Jill Mann said the beauty of the plan was in how it could be tailored to suit unique circumstances.
“There are different stages for different people,” Ms Mann said.
“It’s not just about not having treatment — it’s about what treatments are appropriate for you.”
Unfortunately, the ACP program can often be “something you don’t know is there until you’re looking for it”.
Ms Mann and her team want to change that — to give more Australians a chance to take ownership of their future before it’s too late.
“It should be an ongoing conversation, rather than being a big surprise at the end,” she said.
There aren’t many more surprises left for Monica.
She’ll spend her last days with her family on the beautiful Portarlington coast, a place her husband calls “the best kept secret in Victoria”.
With the time she has left, Monica is still organising forums on death, ageing and bereavement, fighting for locals to engage in an important conversation so many of us would rather avoid.
“Don’t get philosophical about hope,” she said.
“The reality is, we’re born and we die.”
To organise an advance care plan, contact the local program help desk on (03) 4215 7723.
Visit advancecareplanning.org.au for more details.
Advance Care Planning: How would you like to die?
NICHOLAS PAYNE | GEELONG ADVERTISER | OCTOBER 04, 2015 6:00PM