A 54-year-old wife and mother of two adult children, for 30 years Helen was a primary school teacher, a job she loved. Last year, she was diagnosed with motor neurone disease.
She can no longer speak or swallow, has trouble breathing and muscle weakness is progressively robbing her of her mobility.
Michael Clark is Helen’s husband and spokesperson.
“She’s a very, very clever woman, independent, fiercely loyal of her kids,” he said.
At the moment, Ms Clark can still cook and clean, slowly, she can shower and dress herself and she feeds herself through a tube, but that will not last.
The Clark family has discussed the future, but in the end it is Ms Clark’s choice.
As difficult as it is, Mr Clark said he respects his wife’s wishes.
“Helen’s made a conscious decision, a choice; her choice is based around when she’s no longer able to feed herself or cleanse herself in that way, she would like to have the option to die with dignity and I support her with that.”
That option would be open to Helen, if voluntary euthanasia becomes law in South Australia.
But if not, Mr Clark explained she has detailed the level of care and medical intervention she is willing to accept.
“Her care plan states that when she can no longer look after herself, she won’t allow anyone else to feed her, and so ultimately it’s pneumonia or starvation.”
‘This is a sane and sensible way’
For Helen and Michael Clark and their children, the road ahead is nothing short of devastating.
But it is a road South Australian Liberal MP Duncan McFetridge said he is trying to make as painless as possible.
“This is a sane and sensible way to give someone who is dying and in terrible pain the ability to take control and die with dignity.”
Dr McFetridge’s Death with Dignity Bill 2016 is before the state’s Parliament.
It is the 15th time the state has attempted to legislate for voluntary euthanasia and will be put to a conscience vote before potentially heading to a parliamentary committee for further investigation.
“It’s a bill that is clear, understandable for all members of Parliament and the public, has many safeguards in it,” Dr McFetridge said.
“Many times we’ve heard members of Parliament say ‘we support voluntary euthanasia but not this bill’, and I’m very confident that this will be the bill that gets up.”
The new legislation includes a raft of amendments, which among other things, require a person to have a terminal illness, be suffering unbearable pain and be acting on their own free will to be considered eligible.
The decision also has to be endorsed by two doctors before being granted.
Strong opposition to new bill
But opposition to the bill and voluntary euthanasia is strong.
Independent MP in the Labor Government Martin Hamilton-Smith said it was a slippery slope and he would be voting against it.
“What will happen in my opinion is there’ll be a second bill, then a third bill, then a fourth bill in the year or two that follow that seek to then change the definition of what is unbearable suffering and a terminal illness and there’ll be an amendment to the bill that seeks to lower that threshold,” he said.
utside of Parliament, there are concerns that not enough safeguards are in place.
Tracey Watters from Palliative Care SA said the group is worried about the practical consequences of the legislation.
“We’re looking at the ethics; there doesn’t seem to be a place to have a robust discussion about what the implications of the legislation would be,” she said.
“We’re also very concerned about the lack of access to palliative care and that palliative care is not integrated into this legislation.
Ms Watters said her organisation along with others did not feel they have been consulted widely enough on how such legislation would impact their daily practice.
For Helen and Michael Clark, there can be no ideal outcome.
“She knows where this disease is going, as we all do, and she would like to have some sort of say as to how she finishes her time,” Mr Clark said.
The South Australian Parliament is expected to hold a conscience vote on the bill this week.