I wore a high-vis vest to Vic Parliament yesterday – not quite literally – a pretty, very bright orange lace cardigan. I wanted, needed, to ensure my presence was felt. With my twitter feed running hot, I felt some degree of participation in the process of debate on the topic of whether Victorians, including people like me with life-threatening illness, should be granted some control over the manner and timing of our deaths, should dying become a process of intolerable suffering.
Twitter, and the #springst hashtag, has given the average punter the power to message the entire house in real time. Or alternately, to message an individual MP, congratulating, cautioning or correcting the as the opportunity arises.
Debate began at 2pm, and the house was well behaved, for the most part. No shouting over speakers, booing or taunting. The only notable rudeness was some annoying, regular Pythonesque, brief but loud clapping from the upper gallery from right-to-life types when they heard something they liked.
With some notable exceptions (bearing in mind it was only day one) opinion appeared to be more partisan than I had expected. The most notable exception – Deputy Premier James Merlino, the only member who made me feel cross. His contentions were either knowingly false, or appallingly ignorant; most notably, that with palliative care, no-one need die in pain. Perhaps he has forgotten about slow suffocation, thirst, starvation, uncontrollable nausea. He and other opponents also seem to assume that ‘palliative sedation’ is a consistently comfortable way to die. The fact of ‘palliative’ or ‘terminal’ sedation, as evidenced my father’s case, is that it is often not a gentle slide in to coma to wait days or weeks for death to come, but often a doped-up sleepy agitation, with many doctors refusing to provide appropriately high doses to the opioid tolerant patient for fear of being seen to hasten death.
The only other times at which I became a little testy was when several members, all older white men, raised the sanctity of the “centuries old” doctor patient relationship, with Hippocrates rating a mention. They argued that that tradition should remain sacrosanct. In 2017, the doctor patient relationship is no longer a patriarchal power imbalance, or, at least, it shouldn’t be. It’s an intimate human bond where decisions are made in partnership according to the doctor’s expertise and the patient’s values and judgement.
Some MPs are pushing for amendments to the bill, but these appear to be distraction techniques. One relates to the lack of specificity of which drug would be used for VAD care. This is not, as was suggested, an oversight. The fact that we do not as yet have TGA approval for Nembutal is a non-issue. It is the role of the Implementation Taskforce in the 18 month lead in to choose from a range of appropriate pharmaceutical options.
The most common objection to the bill of the day was that insufficiency of palliative care in Victoria must be addressed before VAD, a sentiment with which I agree, except for one word – ‘before’. It appears that it is beyond the imagination of some MPs that both are in fact desperately needed, and are anything but mutually exclusive. The fact that this was such a hot topic on the floor exemplifies that with VAD in place, a white-hot spotlight will shine on the pot-holes in palliative care (especially in regional areas) and government will bear an onus to fix them. Both sides have already committed to substantial funding packages, which requires that before being assessed for VAD, a dying person must be offered all other possible care options which might make their suffering tolerable.
It is indeed not satisfactory that the 48 of the 49 recommendations of the 2016 ministerial report on end-of-life care pertaining to improvements to existing palliative care options have not been substantially enacted. If anything will attract funding for the entire spectrum of end-of-life care options, it is the introduction of VAD, a vital component of the continuum of palliative care.
The 49th recommendation of that report, which prompted the development of the world-leading, tightly regulated framework for VAD legislation we are offered this week, should not be wasted while we wait for better palliative care – it is a desperately needed care option right now, as well as a lever for palliative care to flourish in all health care settings, including the home, where the majority of Australians want to die, but currently most cannot.
Stand-out speakers of the day included Martin Foley MP, minister for disability, ageing and mental health, with philosophical reflection on personal identity and desire for autonomy in death. Roma Britnel MP brought her nursing career to the table to memorable effect.
My phone battery died about 4 hours in to debate, and so I was silenced for the last hour or so, until the house broke for dinner at 6.30pm, and I wheeled myself wearily outside to my waiting taxi. Debate resumes at 4pm today. I’ll be there, orange phone in hand, taking deep breaths, while I still can.
Nia Sims Copyright 2017