Sixty-four year old Mark is someone who desperately wants to see assisted dying laws passed in NSW.
The former architectural drafter and interior designer has been diagnosed with motor neurone disease (MND), a devastating terminal illness with no cure.
Dying with Dignity NSW has welcomed the public release of the Consultation Draft Voluntary Assisted Dying Bill which is expected to be introduced into NSW Parliament in August by Alex Greenwich MP.
Although Mark has enormous admiration for his carers and appreciates the love and support from family and friends, he knows things will only get worse, that's why he wants a choice - the choice to die on his own terms.
"When my brother-in-law heard me say the words "motor neurone disease" he went grey and that upset me a great deal because I think I realised the immensity of this disease and what it really meant, in real terms - it was inevitable, it was death," Mark said.
Describing himself as a fiercely independent man, Mark didn't cope with the news at first. When his doctor told him that no-one survives this disease, Mark was shocked and everything fell apart.
Once I can't articulate what I want, what I need - the frustration of trying to explain to my carer what they need to do rather than me being able to say those words, is what's really frightening me. I just don't know what I will do when I lose my voice.Mark
"I was in a mess. I couldn't get out of bed for about four days, didn't feel like eating...it blew my mind actually and I didn't know what to do about it. I then started to do research and understood what I was in for," Mark said.
People with MND lose their ability to move their muscles, gradually losing their ability to walk, stand, feed themselves, or move any part of their body. It eventually takes away their ability to talk and then to breathe. All of this happens while their mind stays fully intact.
"People describe this as a bastard disease and I wholeheartedly agree. Utterly heartless and wretched, in fact," he said.
"I don't have rose-coloured glasses on and expect that everything will be wonderful in the future. It's deteriorating on an almost daily basis - what I could do yesterday, I can't do today."
Mark says he feels quite strong in facing his situation at the moment but his greatest fear is contemplating the time when he loses his voice.
"Once I can't articulate what I want, what I need - the frustration of trying to explain to my carer what they need to do rather than me being able to say those words, is what's really frightening me. I just don't know what I will do when I lose my voice.
"My greatest hope is that New South Wales will see the sense in legalising voluntary assisted dying to help so many people put an end to their needless suffering. I know that if I am still here, I will be at the head of the queue waiting."
We hope that MPs remember their constituents' views when considering this Bill, because there is overwhelming support for this reform in every single electorate in NSW.Dying with Dignity NSW president Penny Hackett
Dying with Dignity president, Penny Hackett said the Bill, if passed, will give terminally ill people in NSW the ability to avoid the extreme suffering many experience at the end of their lives, despite the best available medical care.
"Voluntary assisted dying law reform is supported by an overwhelming majority of the NSW community - with around 80 per cent in favour," Ms Hackett said.
"There are terminally ill people dying every week in NSW with incredible suffering, which cannot be relieved, even with optimal palliative care.
"This Bill would give dying people a chance to die peacefully, at a time of their choosing surrounded by their loved ones, without prolonged and futile suffering.
"Every other Australian state has already moved on this law reform with assisted dying laws already operating in Victoria and Western Australia, having passed in Tasmania and South Australia and soon to be debated in Queensland.
"Why should terminally ill people in NSW be denied the choice of a peaceful death, when the majority of other Australians have this right?
"It is a conservative Bill, with safeguards to protect both patients and the healthcare professionals who care for them. It is entirely voluntary for everyone involved and only the terminally ill person can request access.
"We hope that MPs remember their constituents' views when considering this Bill, because there is overwhelming support for this reform in every single electorate in NSW.
"MPs should consult with their constituents and speak with terminally ill people before deciding how to vote on this Bill."
Ms Hackett said the COVID-19 pandemic should not be used as excuse to delay this important law reform.
"The Parliaments of Tasmania and South Australia have passed VAD laws in the last year, as have foreign jurisdictions such as New Zealand, Spain and New Mexico. There is also growing momentum and legislative progress in Scotland, Ireland and the UK and Queensland's Parliament is set to debate an assisted dying bill in September."
The NSW Voluntary Assisted Dying Bill allows terminally ill people with decision-making capacity, who are in the last months of their life and have unbearable suffering, the right to seek medical assistance to end their lives.
There are extensive safeguards, including the requirement for two doctors to confirm eligibility and that the patient is acting voluntarily and without coercion. Eligible patients will have access to life-ending medication which they can self-administer or take with the assistance of a healthcare professional.
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