Opinion: Why aged care must participate in assisted dying debate

News this week that an assisted dying bill will be introduced in NSW Parliament later this year was almost bigger than the same announcement made by the Victorian Government less than a month ago.

We now have not just one but two of Australia’s most populated states talking about assisted dying and parliamentarians showing genuine intent on changing existing laws.

And while any such changes will have ramifications for aged care providers that cannot be ignored, assisted dying remains an issue that no one in the industry wants to talk about.

In December following the news that an advisory panel was drafting legislation in Victoria I asked the industry’s two biggest associations their position on assisted dying and its relevance to aged care providers.

ACSA declined to comment at all, while LASA CEO Sean Rooney said they will continue to monitor the Victorian Government’s legislative response to the recommendations that came out of its inquiry and keep members abreast.

Undoubtedly this is a contentious issue for the peak bodies that are already walking a tightrope in trying to find common ground on issues where member views vary from similar to outright opposing.

From a PR perspective, it’s frankly a nightmare.

But the fact remains that societal views on assisted dying are changing and as an industry that stands to be impacted by the outcome of any new legislation, aged care cannot stand on the sidelines to see what happens.

The opinion columns from major news outlets are already analysing every angle of the debate and presenting some of the 25 million different views Australians have on the topic. This will only increase in the coming months and it always comes down to personal beliefs.

Which is exactly why aged care providers need to be actively involved in the debate.

A person’s right to choose when, where and how they die is increasingly regarded as the final bastion of quality of life and empowerment.

The ongoing reforms to the aged care industry at a Commonwealth level, in particular to the provision of home care services, are entirely about choice and empowerment, further reinforcing the high value society places on a person’s right to choice in every aspect of life.

In simultaneously giving people greater control over their aged care and further absolving the Commonwealth of financial responsibility for such care, the Government has openly said that if people are expected to pay for their care, they must have the right to choose what that care is, and when, where and how it is provided.

Debate about consumer choice was always going to end with assisted dying. That such legislation is subject to state – not Commonwealth – laws (except in the Territories), has made it all the more convenient for the Government to enact these reforms. The hard part is very much in the hands of the States.

In this context, aged care providers cannot take a back seat and wait to see what happens.

There are many people who hope that regardless of the detail, the legislation put before both Parliaments for conscious votes will not pass and the whole matter will simply go away.

Certainly this has been the case in South Australia no less than 15 times over the years, though we cannot ignore that it was just one vote that stopped the bill from being passed last month.

The situation in Victoria is different.

As a state, Victoria has shown it is progressive on social issues time and again, implementing many initiatives and legislation over the years that have challenged historical norms.

Once the public approval litmus test has been passed, similar legislation or programs have quickly been adapted in other states – often by New South Wales first.

Victorian Premier Daniel Andrews further personalised the issue by publicly stating he will support the legislation despite previously being against assisted dying. After watching his father die of cancer earlier this year he says his views have changed.

In New South Wales, Premier Mike Baird and Opposition Leader Luke Foley have both said they are personally opposed to changing the laws and would not vote for such a change should it reach the lower house.

At this early stage it appears there is far stronger support for legislative change in Victoria, with the Government appointing a ministerial advisory panel to draft the legislation, comprising clinical, legal, consumer, health administrator and palliative care experts.

Mr Andrews said the legislation will be consistent with assisted dying regulations that were recommended in 2016 following an inquiry into end of life choices, noting that specific attention will be given to “safety and quality considerations and the impact on wider health care delivery, including resource implication for palliative and end of life care.”

The expert panel is working out who qualifies, what support and tools clinicians needed, how drugs are prescribed and how doctors would qualify for practising assisted death. There has been no mention of aged care, only of people with terminal illness.

So what might this mean for aged care providers?

If we consider that dementia is now a legal a cause of death in the UK, is a diagnosis of dementia therefore a terminal illness that could qualify for assisted death?

At what point does dementia care, or care for any other degenerative illness, technically become end of life care?

Would a person living with dementia have the right to choose an assisted death while they are mentally and physically able to do so?

What expectations would be placed on aged care providers to facilitate an assisted death of someone in your care?

What rights would providers have for clients choose an assisted death in their home – which happens to be a retirement living village or residential care facility?

Does your organisation know where it stands on the issue? Who gets to decide – the board or management?

What impact might this have on your staff who will have their own personal views about assisted dying that need to be respected?

If the legislation does pass in Victoria it will not come into effect until 2019 and with a state election due in November 2018 it may well be overridden by a new Government.

But we can be sure that if either Bill does pass in Victoria or New South Wales later this year it will only be a matter of time before other states follow suit.

The potential ramifications of such legislative change on aged care providers demand the input of those who understand the complex issues of dementia care, palliative care and end of life care most intimately.

In November last year, the Australian Medical Association, which has been strongly against assisted dying in the past, changed it’s stance and said in a policy statement: “If governments decide that laws should be changed to allow for the practice of euthanasia and/or physician-assisted suicide, the medical profession must be involved in the development of relevant legislation, regulations and guidelines.”

To abstain from the debate about assisted dying undermines the professional judgement, experience and views of every aged care worker who has supported a person – and their family – in their final months, days and hours.

It’s time for aged care to weigh in on the discussion and help shape the legislation – while you still can.

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