Video above: Insight finds out how Voluntary Assisted Dying is working in Victoria and what doctors and patients think about this new area of medicine. Watch on On Demand.
In the last six months, more than 360 Victorian doctors have qualified to provide assessment for Voluntary Assisted Dying (VAD) to people who are terminally ill, with less than six months to live. Doctors in Western Australia will soon have opportunity to do the same.
The Victorian VAD Review Board have published their first report of operations, indicating that 135 people began the assessment process between June and December 2019, with 52 having used the prescribed medication safely and effectively.
Access to VAD assessment in Victoria is precious to me. At 46, my body feels aged. I have scleroderma a disease of the body's connective tissue. Scleroderma means 'hard skin' and the most common symptom is a thickening and hardening of the skin, particularly of the hands and face. I may have less than five years to live, it could be 10, perhaps 20 years. Perhaps you can imagine what that might feel like? I spend about 16-18 hours each day in bed and perhaps three hours on my feet, short of breath, unable to walk far and with very limited, painful hand movement.
I fear dying from slow lung failure (being increasingly unable to breathe), starvation or slow heart failure.
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Potential access to VAD has lifted from my aching shoulders my own fear of dying the way my dad did – in a slow, dopey agony. It allows me to connect in a more meaningful and caring way with my own fragile, crumbling body. It has freed me from planning future suicide and given me headspace to get on with living. Sure, I miss skiing, swimming, dancing, and I’ve not yet mastered the art of flirting while using a walking frame, but with existential and physical fears allayed, I've so much more to live for.
A few years after my diagnosis, when I was still working part-time as a registered nurse, I watched my 56 year old father die a horrific death from brain cancer - his slow decline to death took over nine months.
I watched him writhe in pain, drowning in lung secretions, in hospital in his final fortnight. He become more anxious after losing his ability to speak, and to swallow the tablespoons of lemonade. Thickened fluids were not offered.
He told us he was thirsty by opening his pasty, dry mouth (which was swabbed out thoroughly with oversized, mouthwash-wet cotton buds once or twice a shift). In the final days, with injection after injection of morphine, he remained mostly semi-conscious, often flailing and agitated, despite what is called in palliative care “terminal sedation”.
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I knew my dad’s values and beliefs. He would have thought the manner of his death shockingly torturous and undignified.
VAD is a profound freedom of choice for a government to allow its citizens.
I’m confident that I will be able to access VAD if/when I am ready. I have spoken with my family, I have made an Advance Care Plan with the help of my doctor, and spoken openly about wanting the option of VAD assessment.
Victorian clinicians face the profound dilemma of being legally banned from raising the topic of assisted dying with patients. Intended to avoid any perception of coercion, though not addressed in the Vic Report, low levels of awareness in the public may be contributing to issues of equity of access. This is one of the areas ripe for a ‘plan for research’ that the Review board promises to undertake.
Western Australian politicians have seen fit to trust their doctors to judge when it is appropriate to provide patients with their full range of options for end of life care. This is the major difference between Victorian and Western Australian legislation.
The right to conscientious objection by clinicians is protected by the Victorian and WA laws. Consciencious objection of entire religious health organisations - a dominant presence in our hospital networks, aged care, and palliative care - is a more contentious legal provision, presenting a significant barrier to access to me and fellow Victorians.
With the help of the Government appointed VAD Care Navigator Service (for information and referral) I found a supportive GP who has agreed to assess me if/when I feel ready. I am still looking for a specialist in my disease who would act as the consulting (secondary) doctor. I'm uneasy about that - I'm told that so far, there are no rheumatologists who have trained.
Following the release of the Victorian Government VAD Review Board report, the Insight program on Tuesday March 3 brings together clinicians, consumers and activists who support and who oppose the existing legislation to discuss learnings from the first six months of operation in Victoria and implications for the future in Australia.
I'll continue the well-trodden path toward peace of mind about how to do my dying when the time comes. Watch this space.
