Voluntary assisted dying bill opens up the conversation
The proposed voluntary assisted dying law is generating heated public debate. What informed the practical aspects of the legislation?
Words by Clare Kennedy
The last time I saw mum she was in a drug-induced haze enduring her last days of breast cancer. The palliative care nurse who had dropped in that evening took my arm as I hurried out of mum’s bedroom. ‘Aren’t you going to say goodbye?’ Chastened I kissed mum on the cheek and went off into the night, unaware of what was unfolding. If only I had slowed down and taken in what the nurse had implied. Mum was close to the end, she died the next morning.
Conversations about death and dying are challenging. Even health professionals can find the subject too hard to raise. And the people involved – the dying their family and friends – may not be clear or open about the realities of terminal illness and the consequences of decisions about medical treatment. The voluntary assisted dying laws proposed in the Victorian Parliament is overturning that norm however, promoting open conversations about an often taboo subject.
This month (October 2017) Victorian Parliament will consider laws that, if passed, will allow those who meet strict requirements to request a voluntary assisted dying process.
The laws offer the terminally ill choice about the way their life will end, framed by safeguards to protect those who may be vulnerable to elder abuse, coercion or undue influence.
To access a voluntary assisted death an individual must first be able to satisfy strict criteria. Importantly, they must have the capacity to make a voluntary and informed decision. Meeting that criteria is key to ensuring that the vulnerable are not exploited by those who do not have the dying person’s best interests in mind.
The framework is designed to ensure that the best interests of the individual are front and centre. Among the eligibility requirements one must be 18 years or over, diagnosed with an incurable disease, illness or medical condition that will cause death within weeks or months but not longer than 12 months. The person must also be suffering in a way that the person does not consider tolerable. This question of suffering must be determined by the person themselves.
The criteria are tight, some say too restrictive, and that means not everyone will be able to access the proposed laws, such as people suffering from dementia. They are ruled out because they don’t have the appropriate decision-making capacity.
The practical aspects of the voluntary assisted dying laws are prompting at times heated public debate and concern about how well the vulnerable will be protected under the proposed framework. So it was appropriate that they were developed with a high level of public consultation, says Mr Julian Gardner AM.
He was the sole lawyer on the Ministerial Advisory Panel of seven experts appointed to advise the Government on how the voluntary assisted dying legislation could work. The Panel didn’t consider opinion for and against voluntary assisted dying. Its job was limited to exploring its practical side.
Chosen for the range of expertise they could bring to the table, the other panel members were Brian Owler neurosurgeon and chair; palliative care specialists Professor Ian Maddocks, Dr Roger Hunt and Professor Margaret O’Connor; disability advocate Tricia Malowney; and health consumer advocate Mary Draper.
‘How interesting it is to discover that your professional background influences how you think. Lawyers don’t realise they think in a special way. Not a better way, but a different way, and so the same question put to the panel would be approached quite differently from the disability advocate, the consumer advocate, the palliative care specialists and me as a lawyer. I think the combination was really very powerful,’ Mr Gardner said.
A former Public Advocate, whose duty was to protect vulnerable people from abuse and neglect including making medical treatment decisions, Dr Gardner brought to the Panel a strong voice in ensuring that protections for vulnerable people were in the frame.
The consultation process was unusually rigorous he said. The Panel released the Voluntary Assisted Dying Bill discussion paper in January this year and received 176 submissions. It also conducted 14 forums and roundtables with 300 stakeholders across Victoria.
‘Wherever possible all the Panel attended the public consultations, which is quite unusual. When we spoke to small groups the department provided a scribe and there was a panel member for each table, not to guide the discussion but to listen and provide information. That’s why I say people had a very intense opportunity to talk to the Panel.’
That level of consultation makes it quite unusual in Victorian law-making. ‘If this is passed by Parliament it will be distinguished by all the other attempts in Australia partly because it is introduced by government and not a private member, but also because it is an extremely long and intensive consultation process. First by the Parliamentary Committee that recommended the legislation, and then by the Panel.’
‘That level of consultation was important because of the widespread community interest and fundamental human rights issues,’ Mr Gardner said. ‘People could not say they didn’t have a real opportunity to be listened to and heard.’
Which takes me back to that night when I last saw mum. Her death was inevitable. I just wish I’d had an open conversation with the nurse and other family members so I more fully understood the stage mum was at and had the chance to say goodbye.
Even if the proposed laws are not passed this public discussion has done something valuable in encouraging us to talk more openly about the end of life, and reflect on what makes a good death, both for the dying and the living.
If this article raises personal issues you can call Lifeline 131 114 or beyondblue 1300 224 636 or visit lifeline.org.au or beyondblue.org.au
This month Victoria Law Foundation is presenting a community event to explore the proposed legislation on voluntary assisted dying with a panel discussion of experts at Deakin Edge.
For booking information visit our community forum event page.
Thursday 26 Oct 2017
6:00 pm to 7:30 pm
1 Flinders Street
Melbourne VIC 3000