Tuesday -Voluntary Assisted Dying Debate Day 1. High-Vis.

clapping 2

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

 

 

 

 

 

 

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Happy Monday – Day 1, Parliament House

Happy Monday – Day 1, Parliament House

I didn’t expect that the highlight of the Go Gentle function today at Vic. Parliament house would be a Vulcan mind-meld with the ebullient and warm Mike ‘Up There Cazaly’ Brady in a quiet corridor for perhaps fifteen minutes before the event got underway.  We covered some serious ground in that short time – some of the most important, distressing events in our respective lives. (Sorry Dr Brian Owler, I was in fact more in rock-star awe of you today, but this portrait of Mike and me is going straight to the pool room).

The introduction of voluntary assisted dying opens a doorway to society begin to approach the kind of openness in talking about death that Mike and I shared today – facing up to the potential/likely minutiea of a bad death, and talking about what can be done to prevent those horror symptoms approaching death.

Stick with me here – if ‘John’ is given a prognosis of, for example, 6 months, at best, with pancreatic cancer, he just might be terrified of the dying process, especially when his caring, skilled professionals start to explain to him the kinds of symptoms he is likely to experience. It will have been explained to him that he will experience severe gastrointestinal symptoms as he dies, and that those symptoms can’t always be satisfactorily controlled.  One of the worst anecdotes I’ve heard from a nursing colleague is that of a woman with pancreatic cancer whose nausea could not be controlled, who retched, and retched, and retched…. until she died quite literally heaving over a bowl. John, if he is assessed as eligible, will have access to a medication to he can take himself to die sooner than he otherwise would.  He may or may not, in the end, choose to take it.

If VAD is commonly known to be an option for dying people, John may take enormous comfort in knowing that he may be eligible to choose to have some control of the how much suffering he might be willing to endure before opting to die a little sooner than he otherwise would.  Even if he is eligible, he won’t be able to exercise that option until he is enduring intolerable and untreatable suffering.

This week is make or break folks.  For me, and for the bill.  Dr Brian Owler is the bloke (aka neurosurgeon) who chaired the Independent Ministerial Panel on VAD and has dedicated well over 2 years to collaborating with other experts to researching and formulating the basis for the bill to be debated for the remained of this week, and voted on in the lower house. I really did feel a sense of Rockstar awe talking with him today. The panel did an incredible job. The legislation is excellent.

Some of my taxi drivers have had little or no awareness of the bill, a few were quite knowledgeable, others asked me to explain voluntary assisted dying process in detail. I reckon that might reflect society.  One of my drivers, who had nursed his father through an agonising cancer death, wouldn’t let me pay my fare that day and said he was going home to talk to his wife about writing letters to their MP.

Dr. Brian Owler is a quietly spoken high achiever who along with the other expert members of the panel, has dedicated himself to the many and varied benefits of VAD to dying patients and to society in general.  It is my hope that I’m around long enough to see a paradigm shift in the way our culture thinks and talks about death.  Not just those of us who’ve had to stare it in the face, like me and Mike Brady, complete strangers quite at home discussing our end of life care wishes, but across society – in GP rooms, hospitals, hospices, community health settings and perhaps most importantly, at home.

I’ll be in the public gallery with my posse watching the ‘gunfight’ for the rest of the week. It won’t be fun, and my poker-face will no doubt fail me at times. No matter how it turns out, I will have given it everything.

Tomorrow – debate -is gonna be tough.  But in the famous words of Mike Brady, in the triumphant finale to his iconic song, I will remember that I stand with upwards of 75% of the community in wanting this law.  I will be remember:

“The Crowd… Is On… Your…. Side!!!”

Order! Euthanasia is in the House!

Order! Euthanasia is in the House!

(First published in Overland Journal (online) 4th October, 2017)

On 20 September my fellow lobbyists climbed the iconic steps of Victorian Parliament House. I wheeled my walker around the back to the accessible entrance. I leaned into a bracing Melbourne morning wind, my long hair insisting on flying across my field of vision. Once through security, I walked a cold bluestone corridor to one of the oldest elevators in town. Up a level, a further mini-lift to the public gallery, where I parked my wheels and flopped down on a comfy green velour bench. I slowly settled, with a quietening sense of ceremony, to hear the second reading of the Voluntary Assisted Dying (VAD) bill in the parliament.

I took in the ballroom-style arched ceiling, pendulous crystal chandeliers, cream and gold Georgian columns flanking the speaker and the smell of cleanness and new carpet as perhaps two dozen of our state members slowly filed into the chamber, each standing to attention before a great golden sceptre and nodding to the speaker as they entered. The wooden backrest of the bench dug into my bony ribs and spine, so I asked the girl next to me to shove my scarf behind me as a cushion. But apart from that the codeine was doing its job, and I was comfortable.

I drew the short straw when it comes to health. An insidious autoimmune disease presented itself in my twenties, early in my nursing career. Scleroderma is rare. It hardens the soft tissues, giving me the muscle and movement of an elderly woman (I’m forty-three). The severity varies – again, the short straw. Muscle pain, breathlessness from lung fibrosis and a gut that doesn’t like to digest even mashed potato. Hands that are severely clawed, and chronic, infected ulcers. Fatigue, some difficulty speaking and eating. I’m 174 centimetres tall, I weigh forty-eight kilos, I have severe osteoporosis and chronic anaemia. I’ve had two surgeries so far this year, with two more to go, that I’m aware of. I use voice-to-text or type with two thumbs.

I’m not likely to have a good innings. My death is likely to be a toss-up between lung failure (oxygen, gasping, eventually asphyxiation)­­­ and failure of my gut – starving to death. I could live on IV nutrition for a while, but not indefinitely.

Many terminal illnesses end this way. Heart failure causes lung failure, as does brain cancer, and many other conditions. Malnutrition and starvation are also common untreatable causes of death in terminal illnesses. My disease is relatively stable right now, but it’s unpredictable. It ‘flares’. Each time it flares, I wonder if this is the flare, the one that will finish me off.

Yep, I live in fear – but I don’t intend to die by slow asphyxiation or starvation. If my doctors tell me that they think it’s highly likely I’m dying, that they have no further drugs to try to stabilise me, and there is no VAD law in place, I’ll take matters in to my own hands one way or another. That’s a story for another day.

 

It is not uncommon for dying people who are suffering badly to refuse food and fluids while they are still able to eat and drink, in order to hasten death. Some terminally ill people make the trip to an overseas jurisdiction while they are still well enough to fly and take a drink, meaning that they usually die significantly sooner than they would wish to, still in functioning health. Others choose to kill themselves while they still have the physical capacity, currently at a rate of more than one a week in Australia, many in hideous, violent ways. Clive Deverall, a leading palliative care specialist dying of cancer, killed himself in a public park in order to make a point. Part of his suicide note read, ‘suicide is legal, euthanasia is not’.

 

At 9.34 am, the public gallery was full, and the morning’s sitting began. Individual MPs were given ninety seconds of ‘holding’ the floor, whilst a low hubbub continued among their peers. Papers flapped and there were chuckles at private jokes. Many MPs fiddled with phones. Granted, speakers summarised such matters as the need for a traffic light, or their fun as ‘Principal for a Day’ at a local school. It wasn’t exactly gripping stuff, but the air stilled when the speaker asked that members pause while ­­­­copies of the Voluntary Assisted Dying Bill were handed out.

A respectful silence endured as the Health Minister, Labor’s Jill Hennessy, responsible for tabling the bill, stood to address the sparsely occupied, plush-green leather seats opposite.

Jill’s mother had died in great suffering four weeks before this historic occasion. Personally, I had just finished signing off on post-production for a five-minute short film about my father’s own horrific death twelve years ago from brain cancer, based on my writing about his last weeks and days; a film created to help campaign for the passing of this law.

 

The VAD Bill presents a new care option, a choice for imminently dying Victorians who are in pain or suffering which can’t be relieved. There will be an historic conscience vote on the bill later in the year, and if this gets the numbers, these dying patients will have the right to ask to die peacefully and a little earlier than they otherwise would, with a neon-green drink of the barbiturate pentobarbital (Nembutal). They will have to jump through some logistical hoops to be eligible, but that’s how it should be – safe and rigorous, to prevent abuse, as has been well-documented in long standing practice overseas.

It’s a mind-bending progressive step for many in the end-of-life care sector, let alone health care in general. It’s an entire paradigm shift. Time after time I hear those against VAD proposing better availability and quality of palliative care insteadI agree with that sentiment heartily, except for one word – ‘instead’. Improving palliative care includesVAD – it is a missing cornerstone of good end-of-life care. We do have decent palliative care, but not enough. It’s patchy, especially in regional areas. And it is missing a vital element – VAD, for those whose suffering cannot be relieved. The two are anything but mutually exclusive. They are part of a continuum of care. What’s needed is a large step back to see the wood for the trees.

Reluctance to consider VAD arises from strong traditional beliefs, from the medical profession’s ingrained imperative to do no harm, from religious views, and from good old fear and stigma around facing up to death. I hear phrases like ‘it should be an adjunct to palliative care’ or ‘a parallel option’, when in reality VAD makes perfect sense as a reasonable and compassionate palliative care option for people who have the capacity to make the decision.

 

What’s on the table now is considered by many to be the safest, most conservative and stringent framework in the world. You can read about it in the Final Report of the Independent Ministerial Advisory Panel on Voluntary Assisted Dying. As a nurse, a patient, and a carer for others, enacting this framework would give me peace of mind. I also hope that after the conscience vote the law will allow me genuine personal peace of mind. I don’t want it just at the pointy end when the gasping starts, or when I weigh thirty-five kilograms (and dropping) and have only intravenous sustenance – I want this peace of mind now. I want to wake up in the morning, take my handful of tablets with a vanilla Sustagen spiked with coffee, dress my ulcers, eat a few tablespoons of porridge, write and see if Mum is up for a hydrotherapy session, whilst knowing that should my time come, I’ll be in control. I’ll have a choice.

For now, I have two part-time jobs. Self-care, and convincing state pollies to vote for this law. The peace of mind that I seek is currently on the desks of state MPs. I hope they sit up in bed reading it. I will now start going to their doors, one by one, cap in hand, hauling my frail body in and out of taxis, asking for autonomy and freedom from fear.

A conscience vote, by its very nature, implies that MPs are better qualified than Victorian individuals to make an educated choice about voluntary assisted dying. I’m imploring them to represent the views of Victorians instead. 75–80% of us have been in favour of VAD consistently for years. God forbid a religious politician should vote against us having the right to choose just because they personally worship a God or a text that does not favour it.

But I’m also imploring the Victorian citizen. The anti-VAD lobby is made up of a small group of well-funded, largely church-based organisations who are noisily bombarding MPs with their own collective and individual opinions. My job is to try to help balance that, by asking Victorians to contact their state representative. If you want to take action, you can simply look up the details of your MP at the Parliament of Victoria website.

Call them, email them, but best of all – a letter. Show that you’ve taken time and effort. It works. Tell them why you want this law. Maybe you have been with a friend or nursed a patient through a bad death. Tell them about what it was like. No-one deserves unbearable suffering at the very end of life when we can give them a compassionate choice.

 

Jill Hennessy, MP, found me talking to her elderly father in the Queens Hall after the morning sitting ended. I was giving him my condolences on the loss of his wife. I pushed my walker to the side, and Jill and I hugged for a suitably long time.

‘Good job’, I said, our faces close. We locked eyes – the same height, two determined, blonde middle-aged women. Words weren’t really necessary. We were smiling.

‘You too’, she said, as a crowd gathered around her in the Queen’s Hall, with their own hopeful congratulations.

Dad’s Story – from the Go Gentle Australia Story Wall, and the text from which stopthehorror.com was drawn in film.

The following has been published on the ‘story wall’ at the website of the lobby group Go Gentle Australia – http://www.gogentleaustralia.org.au/dads_story

The 5 minute film based on this story (warning – 18+) can be found at stopthehorror.com

 

Friends, my story will take about four minutes to read.  I’m asking you to be brave enough to read about what it was like for me, personally, to be with a man I loved while he died a slow, horrific death in hospital.   I ask this of you right now because, very soon, Victorian Parliament will be allowed a conscience vote on a new, humane law.  If passed, this law would allow people much greater choice over the manner of their death.  I hope that sharing dad’s story with you might motivate you to remind your State MP of the importance of this law.

Dad was a blonde, ridiculously handsome tradesman with impressive biceps.  He had a terrific sense of humour – the dog he adopted was called Woody because it loved to chew up his firewood.  Dad and I would talk on the phone every fortnight or so… pretty much the same conversation each time, but with a lot of love.

“How’s your car going, love?”

“Good, dad.  It’s a great little car. How’s Woody?”

“He’s good, good…”

My dad was 56 when, as a family, we watched, helplessly, his horrific experience of what is known as ‘palliative sedation’ in his last week of brain cancer.

Now, my own chronic illness means that I am shadowed by the prospect of a similar fate.

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Dad had been a very fit bloke, a tree lopper by trade.  One summer day, after he fell over and hit his head in the back yard, a CAT scan revealed a large terminal brain cancer.  He jumped through all hoops to extend his life – chemo and radiation.  We supported him and cared for him as, over a period of nine months, he lost his health and began to die. He was involved with a Palliative Care service who visited him at home.

Eventually he lost the power of speech, had difficulty swallowing, he became incontinent and often confused. As a family we were struggling to keep it together emotionally.  In his confusion he continually tried to walk; he had falls. There came a point where it became impossible for us to give him care safely at home and so he was admitted to a medical ward in a major hospital.  Fortunately, my sister, who had a young baby, came in to see him, as did my brother, who was working long hours trying to start a business.

My own nursing experience told me that Dad probably had a matter of days remaining.  His agitation was worsening – he couldn’t keep still, he couldn’t speak; his eyes were wide and watery.  He kept climbing over the cot sides of the bed to try to get to the toilet, even though he had a catheter in (having a catheter in often makes you feel like you need to urinate.)

Soon he was physically unable to eat anything, and he was very thirsty. No-one put up any IV fluids.  It was understood – what was happening. Mum and I found that, for a while, we were able to feed him tablespoons of lemonade and it was heartbreaking to watch him sipping at it as though it might save his life, but of course, my strongman of a dad was as dehydrated as hell. A nurse would come in with sachets of mouth cleaner and big swabs, and, while they tried to explain to dad what they were doing, the nurse would hold him by the jaw while he tried to resist, and swab out his mouth while he writhed.

It took a few days for him to die by ‘palliative sedation’. I had never nursed anyone through this – palliative care was outside my area of experience. Dad’s sedation was done via subcutaneous injections.

When Dad became so agitated that not even one-to-one nursing could keep him and keep him from physically struggling, he was sedated to the point of a fitful unconsciousness.  His sleep was restless, full of jerking limbs and garbled sounds.  Every couple of hours he would start to moan loudly and try to pull on his catheter.  Sometimes he would surface to wide-eyed consciousness, thirsty, crusty at the corners of his mouth, staring at me with what I knew was terror; he’d grip my hand so hard it hurt.  I’d press the buzzer and there would be more mouth care with swabs, and then another shot would put him out. It was mainly mum and who took it in turns, holding and rocking him as he sunk back in to semiconsciousness or sleep punctuated by groans and twitching.  I didn’t know whether he could hear us talking to him. This went on for about three days.  During this time the rattling chest of pneumonia kicked in.  Pneumonia is sometimes called the ‘old man’s friend’.  My dad was 56.

The night before he died, I was with him in the evening.  The increasing mucous in his chest was causing regular coughing and choking fits which meant that that nurses would hold him down and hold his face still so that one of them could suction out his throat and upper airway of mucous – very distressing, very loud suctioning.

When I’d taken over from mum that afternoon, she was looking haggard, her red and glassy eyes gave away that she was crying a lot.  I decided that I’d stay with him overnight.  By late in the evening, I felt was coping in a in a kind of ghostly dissociative way.  I myself was acutely unwell (I have a chronic severe autoimmune disease), I was physically and emotionally exhausted, but so was mum.  I made an educated guess that dad had perhaps another 24hrs in him – I thought I’d let mum go home for proper sleep. Then, I thought we might both be there for staff handover and I planned to discuss with the staff an increase to his meds.

There was just enough room for me and dad to lay together on the bed and spoon for short periods but he was jerking and kicking a lot.  I rocked him, softly sang our childhood songs, like ‘You Are My Sunshine’ and ‘Morningtown Ride’.  I whispered “It’s me dad, I’m here, I love you, dad” and “you can let go now, dad” and I cried silently and pressed the buzzer every 2 hours, sometimes every hour.  I noticed his breathing become shallower, spongier, with the occasional big gasp for air which would become a choking fit.

In the early hours of the morning, I was in physical agony and had blurred vision.  I called mum – she was there within half an hour.

I am so glad I had phoned her.   It was she who held his hand and talked to him while he finally slipped in to a deep, but noisy unconsciousness and then finally stopped breathing.

None of us should have had to go through that.  As a family, it’s an understatement to say we were traumatised.  I feel a lot of pain and regret that I didn’t explain to dad what to expect when he died.  He had been so frightened of the dying process. While he still had the power of clear thought and speech, he didn’t initiate any talking about it, and to my great regret, neither did I.  I also carry some guilt because I didn’t push the doctors to increase his dosage sooner – but I know I was in a state of trauma and not thinking clearly.

My own condition (scleroderma) is unpredictable.  Organ complications could have me being a terminal patient at any time in the future. It could be soon, it could be later. It’s more likely that I’ll have a slow death, not a quick one.  I’m terrified of going through dad’s experience, and I don’t want my family to have to go through it either.  I don’t intend to let it happen.

Sitting down to write this has been enormously challenging to my mind and heart. It has been like re-living the experience, but I needed to do it now.  For myself, for my dad and for the overwhelming majority (more than 75%) of Victorians who support assisted dying.

Very soon, a bill of law will be put to a conscience vote by Victorian Parliamentarians.  If successful, the passing of this new, humane law will offer Victorians who are suffering untreatably at the end of life a legal option to end their suffering peacefully, with the help of their doctors, if or when they are ready.  I wish my dad had access that choice.  I want to have that choice if I become terminally ill.  I want all Victorians to have that choice.

Becoming busy

Usually I can be comfortably active for about six hours per day.  I’ve been busy lately. Very Busy.  Normally, my full time job is self care, but after I submitted a piece of writing to Go Gentle Australia, a lobby group for Voluntary Assisted Dying headed by Andrew Denton, I found myself committing more and more of my time to the cause.  Over the last two months, I’ve written much more than usual (evidenced by two throbbing, swollen wrists).  I’ve been involved with making a five minute short film based on the writing I submitted to Go Gentle, and the publicity around that film – print, radio and TV interviews, which I hope to write more about.  I submitted a piece to Overland Journal (online edition) which will be published in coming days. I’ve been in to Parliament House in Spring street, Melbourne, to hear the second reading of the Voluntary Assisted Dying Bill for Victorians – a spine tingling experience.

With the support of Go Gentle Australia, I’m on a roll.  So much so, that I haven’t been able to spare the energy or words to start this blog.  Blog starts NOW.  It will be a mix of the personal, factual and imaginative.  It will be patchy according to me health and energy levels.  I intend to enjoy it and grow from it and I hope you do too.

Brave New World – This is a test…

in my twenties I txted on an old green nokia  (wish I still had one – the yellow and red covers were pretty specky too), then I FB’ed, for a very long time. Now in my early forties I’m learning to tweet and am constrained by a char. lmt.   The next logical next step – this blog business – an unfortunate word, blog.  Sounds like waste matter.  But I’m yet to find out, and I suspect the opposite. So please be patient, earthlings.  10, 9, 8, 7, 6 ,5 4, 3…… xN