She was a gorgeous woman, happily married, bristling with joie-de-vivre. And dying of a horrible cancer, one that rendered her unable to swallow.
She had no chance of cure, but every chance of choking to death. She chose voluntary assisted dying (VAD).
When I arrived at the appointed time, she was surrounded by weeping relatives saying their last goodbyes, taking their final photos. Then it was just me and her husband, he on one side holding her hand and muttering softly, while I knelt on the other side prepping the gear.
After a final confirmation from her that she wished to proceed, I slipped the needle in and started the injections that would first put her quietly to sleep, then deeply unconscious. Then death.
This Friday is the first anniversary of VAD becoming possible here in Victoria. Twelve months in which Victorians with a terminal illness have had the option to end their lives at a time on their own choosing, rather than await their diseases’ inevitable but unpredictable course.
This time last year the best estimates suggested that somewhere between 50 and 150 people might use the legislation in the first year. Twelve months later, nearly 400 Victorians have registered as eligible. Even though far fewer have actually used the medications, the numbers have hugely exceeded expectations.
Cancer has been the most common reason, then neurological disorders like motor neurone disease, with some cardiovascular and respiratory diseases.
The safeguards around the legislation are very strong — the Victorian law is said to be the most restrictive law of any jurisdiction where VAD is allowed. Sometimes it seems too cautious. Only Australian citizens, and ordinary residents of Victoria, are eligible. Seems fair enough, designed to prevent people popping over from Uzbekistan or Queensland just to avail themselves of the law.
But for my first VAD patient ever, these laws proved too strict. Julian had pancreatic cancer and knew what lay in store for him. He had no desire to live longer with the pain, nausea, wasting and debility, and was determined not to die unpleasantly.
He had lived in Melbourne since 1981, worked here, paid taxes and, now retired, drew an Australian pension. But he was born overseas, and had never taken out Australian residency, so was deemed ineligible. He was allowed to vote, but not to die the way he would have chosen.
The law is far from perfect.
Firstly, doctors are not allowed to tell patients of the option of VAD. No problem for the informed, articulate English speakers who know that they have to ask, but a significant potential barrier for the more marginalised. How can my patients give informed consent if I cannot tell them about all their legal choices? It’s like being told that I can tell someone with heart disease about pills, but not about stents or surgery.
Secondly, someone has to provide a written prognosis. Sounds simple, but many specialists have turned out to be uncomfortable about committing themselves on paper. And the honest answer is we don’t know who’s got five months to go and who has eight. But five qualifies and eight doesn’t.
Finally, the process is cumbersome and time consuming, often taking three to four weeks to complete. Several patients that I have been helping have died before the process could be completed. For some, their deaths were OK, but others died alone or in distress, both of which could have been avoided had they had VAD.
But after 12 months experience, and working with 15 people who requested VAD care, here’s the positive side of the experience:
- Management of symptoms like pain and nausea has been well provided by palliative care, and these have not been the reasons for seeking VAD. Overwhelmingly people have asked for the option of VAD to regain some control and choice; to not have to wait for a possibly unpleasant event to finally kill them; to not have to suffer the indignities of further losses of bodily function but to go quietly and comfortably at a time and with people of their choosing. For many people, just having the option has been an immense relief, even if they never went on to use it.
- There’s been no suggestion of coercion at any point — rather the opposite. Families have been more likely to be reluctant but supportive.
- The consultations as a VAD provider have been surprisingly uplifting. All the complex stuff about a horrible diagnosis, treatment failure and imminent death has already been done. By the time they come to someone like me for VAD care, it’s about the practicalities and getting things sorted out.
- The Statewide VAD Navigators have been an invaluable resource for everyone, public and professionals alike. Their job is to help people find their way through the system and they have done a superb job at holding the hands (metaphorically and actually) of patients, relatives and hapless doctors like me.
- The sky hasn’t fallen in, nor has my practice been picketed or graffitied (well, it still gets graffitied, but nothing to do with VAD – we are inner city, after all). I still work as a GP and see families, kids and everyone I have always seen.
After all the argument, hand-wringing and dire predictions, grannies are not being bumped off left, right and centre, nursing homes are not being emptied, nor are confused older people being coerced into signing on in droves.
What has happened is that a small number of people have had the huge relief of being provided with an option previously denied them.
An even smaller number have actually gone ahead and used the medication, and the experience has been positive and peaceful. For everyone else, the vast majority of Victorians, nothing has changed.
So happy birthday, VAD, and as you blow out your candle, can I paraphrase Buzz Lightyear as I wish for you, “to WA, and beyond”.