Yesterday I decided it was time for me to stand up and be counted. There was a rally on the steps of Parliament House in Adelaide, and I decided to attend and support the organisation, SAVES – South Australian Voluntary Euthanasia Society. I had already started this blog about VE, and decided to add my ‘coming out’ photo taken inside Parliament House!
As I stood in the street waiting for my husband to pick me up afterwards, still wearing this t-shirt, I did wonder if some people might come up to me and tell me I was wrong to support VE, but the only people who did stop to comment said, ‘good on you!’ Some said they would love to openly support VE, but were afraid of what others would say or think of them.
The staff at the Post Office where I collected mail on the way home were not so supportive, suggesting VE was dangerous… they did however ask me to explain more about what SAVES stands for some day, and acknowledged they really had no idea what VE stood for. Maybe this red t-shirt can open a few doors to a more open communication, so I think I’ll wear it shopping occasionally!
This is what it says on SAVES website:
“It’s my life … It’s my choice …
No matter who we are — it should be our human right to claim ownership of ourselves at life’s end. When our most basic quality of life has been taken, through incurable illness, we each need the right to choose a peaceful end.
75% of Australians shared that view, when surveyed in a 2011 Australia Institute Poll.
Voluntary euthanasia (VE) is a community issue — touching everyone when a family member, a friend or a colleague wants release from an illness which has no cure.
Started in 1983 SAVES main aims are:
- To campaign for a South Australian law that provides for “medically assisted” end-to-life, as a right, in appropriate circumstances, and with defined safeguards.
- To raise public debate to a point where our Members of Parliament enact a VE law which provides everyone the choice to end prolonged and painful suffering.
A timeline of achievements in delivering on the aims can be seen in the timeline.
SAVES is not affiliated with Exit International / Dr Philip Nitschke”
SAVES is not advocating we kill people, it is advocating what I have said I believed in for many years, that it is inhumane to keep living simply because we can, when there is no quality of life. And that we should have a legal right and choice. This does not mean that I condone suicide, but currently this is the only legal choice we have.
The impact of suicide is too difficult for others to live through (in my opinion) for that ever to be a choice for me, as I have lived through more than one.
But I fully understand why people with terminal or severe incurable chronic illness might choose this pathway. There is currently no other option available.
We would NEVER make our beloved pets face such inhumane cruelty in old age or with a terminal illness.
David Campbell was published in The Age on March 30th, To prolong life at all costs can be an act of cruelty . I am republishing it here in full with his permission.
“Entering a high-care nursing home is like walking into a vision of hell. Broken bodies huddle in wheelchairs or lie, immobile, in stark rooms. Eyes stare unseeingly, any sense of awareness lost within shattered minds. Voices shout random words.
Visitors sit with loved ones, trying to communicate. Hoping for some sign of recognition. Wondering if this helpless dependence lies in their own future.
Those few patients capable of movement pace endlessly, like wild animals in a cage. At mealtimes, trembling hands attempt to convey food between plate and mouth, failing more often than not. Overworked staff feed those who cannot cope, trying to do the impossible and be everywhere at once. Patience is an essential job requirement.
My mother, completely unable to look after herself, spent the last few weeks of her life in a high-care nursing home. It took two staff and a hoist just to get her frail body out of bed. It was a nightmare, both for her and anyone who visited, the terrible culmination of a two-year period in which the relentless progress of dementia transformed her into a stranger. Our memory of that time inevitably casts a dark shadow over the 88 years that had gone before.
Don’t get me wrong. My mother received the best of care, and the staff did what they could. But all they were doing was prolonging abject misery.
Although, in a way she was fortunate, and so were we. For many, the decline lasts much longer. Individuals and their families suffer through long years of mental and physical deterioration, of humiliation, embarrassment, anger, frustration, despair and, finally, desperation.
Thoughts of ongoing care are overwhelmed by the desire to see the suffering end, to find some way of bringing relief. But that is not possible within the law.
Supreme Court judge Betty King recently sentenced Heinz Karl Klinkermann, 73, to an 18-month community corrections order for trying to kill himself and his terminally ill wife, who was suffering dementia and Parkinson’s disease and was no longer able to communicate. Justice King’s decision was, given the possible penalty, lenient, but the case highlights the failure of our laws to deal properly with an issue that is going to loom ever larger in our ageing population.
As Justice King said in her judgment: ”To keep an animal alive in the precarious health circumstances of some of those in palliative care may well lead to charges of cruelty, but the law protects human life and places it into a special category. It is protected at all cost.”
It should not be. At the moment, doctors can help people prepare an Advanced Healthcare Directive but, although it is a move in the right direction, it is only one step on a much longer road towards finding a legal way to show mercy in extreme situations.
Of course, there will always be those who insist that nature be allowed to take its course, no matter how long it may take or how unpleasant the consequences might be. Fine. If that’s what they wish for themselves, then so be it. But I don’t want that inflexibility dictating my future.
My mother should not have been forced to suffer as she did. She hated every ghastly, degrading moment. She should have had a choice, and not one that carried the stigma currently associated with the word ”euthanasia”. If the situation arises, I want legal access to an informed choice, one seen as a reasonable, honourable course of action.
The thought of facing even one day of what my mother went through, and what I saw others enduring, fills me with horror. Justice King’s use of the word ”cruelty” is significant. What we do to so many of our fellow human beings at the end of their lives is simply cruel. There is no other word for it.
The law will change, because it must. There will come a point when, despite the dithering of timid politicians, common sense and compassion will prevail. But in the meantime, how many others will be condemned to a wretched existence that makes a mockery of the word ”living”?
It is the law’s harshest life sentence.”
David Campbell is a freelance writer.
Kate, what an incredibly brave and educational post. I love it! You certainly hit the nail on the head with your comment about the stigma associated to VE. It is a hushed conversation and written material is banned in some cases. I too believe, as our population continues to age, VE will become law. Years ago, I came out stating my sexual orientation. It looks like I will have to have another coming out party stating my belief in VE.
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I have often likened coming out about dementia to be similar to coming out about sexual orientation, and yes, VE feels much the same! Even as a Christian, I cannot say no to someone’s right to VE…
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Thanks for bringing up a ‘sensitive’ topic …. I too am a passionate supporter of the right of someone to choose how they wish to live (and by default, how they die). If I don’t want to live in uncontrollable pain or in severely undignified ways, why should I?
About your comment about the effect on families – if I remember correctly overseas studies show that they have less negative experiences with a peaceful death via voluntary euthanasia because of a few reasons …..
– they are able to be with their loved one when it happens, so they can say their final goodbyes. This is often not possible – if they aren’t at the hospital or if the patient is drugged up on morphine and not ‘conscious’ if you know what I mean.. I think this means a lot …. to be able to say goodbye properly
– they see that their loved one is happy with the decision …. they are at peace. This has a positive influence too because they know this is what they wanted. And they are granting their wish.
– in Austrlaia – because it’s illegal and done via either helium or nembutal etc – it’s usually carried out in the comfort of home. In comforting conditions, at a time and place of everyone’s choosing. Not in a sterile hospital setting.
There are probably other reasons but i can’t remember them.
Family members will always be upset when a family member dies. But the grief is a lot less when the patient has been able to have a peaceful, voluntary euthanasia death.
Do you know what I mean?
If you don’t, ask in another blog post.
But I will do anything I can to have a peaceful death, whenever that is. And the knowledge that this will hopefully be available for me has stopped me worrying and getting depressed about the future, since I’m at a very high risk of getting cancer again, at risk of having a stroke, and another dementia diagnosis (since mine has halted when I was treated)
If I had to die I could think of nothing better than to die on my bed, surrounded with all my smiley face collections that I’d be hugging, not to mention some nice music playing in the background.
That’s why I’ve completed an Advanced Care Directive (living will) and there’s a copy with my GP, my family and my solicitor.
Unless it gets legalised I’ll have to do it sooner rather than later because assisting someone commit suicide is illegal.
I hope you can understand what I’m saying. The main thing is that I’m happier, and the family has less grieving this way than the alternative – a protracted long drawn out dying in hospital with the patient possibly screaming out in agony. I’d be drugged up and probably screaming out in pain and hunger (because of my hunger 24 hours a day and untreatable pain)
Sorry about the long post …….. but I’m passionate about the topic. Having something that you’re passionate about it life actually is the characteristics of happy people……… so I’m actually happier having somethig topic to focus and work on …….. much happier than if I was doing something like watching TV all day long. Know what I mean?
Did you take a group photo of everyone standing on the parlliament steps? I’d love to see a photo of you amongst a crowd of others 🙂
Thanks Kate for bringing up this topic.
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Hey Kate – this comment is so long and made at 2am in the morning so people will probably miss reading it. I never go back and read c omments of previous posts after I’ve read the post.
If there’s anything you want to repeat in what I’ve said, feel free to just copy it into another blog post 🙂
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Great post i0landa. regarding my comment – the negative effect is following suicide – not VE. and no, I didn’t get in a group shot as I arrived a bit late!!
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…. I don’t wish to discourage you iOlanda………but at the moment, an Advanced Care Directive is not worth the paper it is printed on….
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Right on Kate!!!! Go for it. It blows my mind how we are more kind to our animals than we are to our fellow human beings….We are living in the dark ages when in fact we should be flourishing in advanced technology and health care. It is just criminal….So glad you went there and stood up for your heart. Good for you! I send you love and blessings…VK
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Thanks VK! The rights of animals are definitely higher onthe agenda when it comes to a peaceful ending. The thing about VE is it gives people a choice… it is not killing people!
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…..Dearest Kate…….I have always believed in VE, and I could not agree more, with what you are saying……it will come in, not too far down the track, because the weight of numbers will necessitate a drastic rethink,…and in a hurry too….
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you are an amazing lady and in red superb, i support all you do and VE. It is disgraceful we can help our beloved animals not suffer but we can not help out loved humans, families and friends. This topic will always have scare mongers, nay sayers and voices of reason it’s just the voices of reason are drowned out in fear, untruths and politics. Keep going my friend you do us all proud
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You look great in red. Love you xxx
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Love you too xoxox
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Dearest Kate,
good on you for taking yet another couragous step and standing up for what you believe in. As you well know, you and I have had this conversation many times in the past and still, we are forced by those who think they ‘know better’ into situations that are cruel and inhumane. My maternal grandmother suffered the same degrading conditions as those described by David Campbell and if she was aware of them, she too would have HATED every moment of her existence! And I refer to it as ‘Existence’ because it was not in any way shape or form anything resembling what we would call a ‘Life.’
And of course we all know, yet refuse to acknowledge, that the incidence of suicide in the elderly is quite high because they know there is no legal option available to them.
Shame on us as society for tolerating and condoning this inhumane treatment of our fellow man and to what end, when all we are doing is prolonging the inevitable!
The sooner we are able to determine our own destiny, the better we will be. And for those who are against VE, I say fine, but please let me choose how I want to not only live, but also how I wish to die.
Keep wearing the T shirt!!!! I love it and you too!
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Kate
I’ve grown quite fond you your blog and more aware of dementia, alzheimers and related illnesses since following you. The sad part to me is that I can’t personally meet you and sometimes I feel you are progressing faster in the dementia than I realized. Because of that I wanted to tell you that you have enriched my life and I want you to know how proud I am to know you and the bravery you emit by writing your life story while you are still able to. I think your words are so real and forthcoming is one of the reasons that I find it hard to fathom that you have any form of dementia. I applaud you and want you to know what a special woman you are in my heart. I am blessed to have you in my world of bloggers!
Rita
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