I’m unashamedly pro-euthanasia. Watching people suffer incomprehensibly before they die can do that to a person, particularly when you’ve come to know them, respect them.

When I was in school I was a nurse-aid. Each afternoon I cared for a patient I knew only as Mr Jones. He’d tell me about his wife and children, his travels, and his passion for sport, while I helped dress his swollen legs. That was, until he couldn’t speak anymore, and his bones protruded from his six foot frame. Mr Jones suffered for months. Unable to talk, and though often pumped with morphine near the end, he would cry silently from his pain.

Years spent working in rest homes during my late-teens and early twenties sowed the seed of my position on euthanasia. But the issue became even more personal when my mother-in-law was diagnosed with early-onset Alzheimer’s in her mid-sixties. Due to her deterioration, she was forced to move into the secure dementia ward of an aged care facility before her seventieth birthday. No one could have predicted her diagnosis. The illness wasn’t in the family, which we knew of. She was a strong willed person who enjoyed life, and when she was diagnosed she dreaded what lay ahead.

So it was with much interest to me, on a sticky December day, when the Christmas carols had just started to play on the radio and most of us were thinking about spending time with family during the holidays, that Premier Daniel Andrews announced the Victorian Government would prepare a bill to legalise assisted dying to Parliament in the second half of 2017.

Originally opposed to euthanasia, the Premier told reporters that the death of his father had given him time to reflect and reassess his views. He’d had a change of heart.

It got me thinking about what my mother-in-law would have thought about this bill, a woman who loved to debate the news and who always had an opinion about it. Good or bad. I watched Andrews talking about his personal journey and I wondered what choices his change of heart would offer my mother-in-law.

And then I read the fine print.

While Andrews announced that he’d introduced the voluntary assisted dying legislation to Parliament as a legacy to his late father, there would be no legacy for my mother-in-law.

The legislation as laid out by the government is for adults who are close to the end of their lives and have an irreparable condition that causes enormous suffering and pain, that cannot be relieved by any other measure. Yet they are also required to be assessed by two doctors as being ‘of competence and free will’.

The law is a similar model to that introduced in the US state of Oregon two decades ago, which states that you must be capable (defined as being able to make and communicate health care decisions) in the final months of your life, to be considered. But here is where there is a gaping flaw.

By its own definition of people having to be competent in the final stages of their terminal illnesses, it omits those with terminal neurological diseases. And it excludes people like my mother-in-law – that is, should she have been in a position to make a decision whilst she was still competent enough to do so.

She, and others like her, will instead have no option but to see their illnesses through to the end. For many that means wearing nappies and being fed through a sippy cup while their bodies lay waiting for infection to claim them – while others with cancer and other ‘suitable’ terminal illnesses could choose to die on their terms.

There is no less suffering with Alzheimer’s due to it being a neurological disease. Alzheimer’s itself doesn’t kill you, but it does weaken the body, making it so susceptible to infection that sufferers die from heart attack, stroke, kidney failure or lung infections.

Society links euthanasia with the slogan ‘dying with dignity’, yet dementia, the second leading cause of death in Australia, has been overlooked in this legislation.

When I talked to Alzheimer’s Australia about this, the peak body providing support and advocacy for people living with dementia (of which there are 353 000 in Australia right now), acting CEO Maree McCabe said there’s no straightforward answer.

McCabe’s position is that this is an ethically complex issue, as there are questions around what happens if people with dementia change their minds, but she concedes that people with dementia should at least be given the option of deciding.

She suggested that people with dementia should be asked about their decision at regular interviews to ensure that it is what they want. Ultimately, this issue is about being given choice. To be excluded from making a choice, in McCabe’s opinion, is potentially a human rights issue.

The bill is something that the most influential membership organisation representing registered medical practitioners, the Australian Medical Association (AMA) – the very body whose members will be sought to actively enforce this law – also questions.

However the AMA does not support the bill to begin with. While The Australian reports that the AMA has ‘softened its opposition’ to the reform, President of the AMA, Dr Michael Gannon, is adamant that doctors should not be involved in ‘interventions that have as their primary intention the ending of a person’s life’.

Gannon says that while there’s a thirst for this reform, and a call for ‘doing end of life care better’, the idea that, ‘these laws will make it easier and nicer and a more sterile procedure that everyone can cope with is intellectually off the mark’.

There is also the ethical question for doctors, who will be put in situations where they will have to make personal judgements as to who should and who shouldn’t have access to assisted death. (That’s if they can access the law in the first place.)

Gannon pointed out that while the Oregon example has had no extension to include those with terminal mental health illnesses, the Netherlands’ and Belgium’s euthanasia laws have extended to these patients. ‘Some would say that’s inevitable, and morally can you cherry pick diseases where it’s acceptable and others where it’s not?’ Gannon asks. In most examples of these cases, the decision has been made to exclude patients with a mental illness, but, according to Gannon, ‘that doesn’t make sense to a lot of people’.

So how can those who could choose to end their life have confidence in a system which doesn’t have the support of the very professional organisation responsible for carrying the laws out?

Some would say that at least the issue is up for debate, and it will be debated at some length later this year when the Victorian Government introduces the bill. But for the many hundreds of thousands of us whose families are affected by dementia, it will be an even longer wait, if it comes at all.

Regardless of the decision, my mother-in-law will continue to sit in a dementia ward until we’re told that she’s been transferred to a hospital. Our fear is that there she could face the same fate as Mr Jones.

Image: flickr