Why VAD laws are not enough
Kay Scurr is Exit International Tasmania Co-ordinator and is a nurse/counsellor recently retired from the Royal Hobart Hospital in Tasmania. Kay spent 25 years working as a nurse and 7 years as a first responder in the Tasmanian Ambulance Service.
Photo by Martha Dominguez de Gouveia on Unsplash
by Kay Scurr
Exit International is a non-profit, voluntary assisted dying organisation founded in 1997 by Dr Philip Nitschke with an online supporter base of more than 30,000 people around the world. It is supported by a small staff and an active network of volunteers. Exit’s income is derived from membership, bequests and other donations. The average age of Exit members is 75 years and the vast majority of Exit members are healthy elderly people. A significant minority of members are seriously or terminally ill. Exit was formerly known as the Voluntary Euthanasia Research Foundation (VERF).
Exit members believe that it is a fundamental human right for every adult of sound mind to be able to plan for the end of their life in a way that is reliable and peaceful, and at a time of their choosing. Exit has a network of local Chapters which operate at a grass-roots level providing a regular meeting point for members to come together and discuss their thoughts and ideas, make new friends, and stay on top of the latest information.
A subset of Exit Chapters are the small coffee and chat groups where members meet privately for friendship, support and to exchange information. Many Exit Chapter Leaders are active or retired health professionals who offer help and support to their members.
I was drawn to Exit International as a direct result of the repealing of the Voluntary Euthanasia legislation passed by the Northern Territory in 1995. I was so pleased to see the legislation initially succeed only to see a few Catholic politicians and a handful of ‘right to life’ advocates overturn it. Four terminally ill Exit members did get to use the assisted dying law successfully and managed to have the peaceful, reliable death they had hoped for.
“It is a fundamental human right for every adult of sound mind to be able to plan for the end of their life in a way that is reliable and peaceful,and at a time of their choosing.”
Shortly after the law was revoked I wrote to Dr Philip Nitschke conveying my anger and frustration at the situation. I felt that it was important that I let him know how much I supported Exit and to convey my gratitude for all the amazing work he had done to secure legislation for this long overdue human right.
Why Exit is needed compared to other VAD organisations
Exit International is very different from other VAD organisations in terms of what they offer to the public. In most locations in Australia, for a person to qualify to use VAD legislation they have to be 6 months from imminent death with a terminal diagnosisand no hope of recovery. They must be assessed by two doctors to confirm that they are likely to die within six months. And it can be difficult, particularly for patients in rural areas, to access doctors who have completed the required training in VAD.
There are also undoubtedly people who will experience intolerable suffering at the end of life who will never qualify for VAD.
Exit International’s ethos is that you should not have to ask permission to end your life. Even with the new legislation emerging around Australia only a select few are able to access VAD. This makes it a medical privilege, offered to only a select few. Exit sees the end of life very differently. They see determining the time and circumstance of death as a human right, a choice made by an individual who deems their life no longer fulfilling. They can make their own choice that they have done enough — that they lived a good life and that it is now complete.
“You should not have to ask permission to end your life.”
How Exit has changed my perception of death and dying
I knew very little about the process of dying before being involved with Exit International. I never considered that it was possible to have a choice in how and when that final stage of one’s life might end. I thought it was more of a lucky dip and that, maybe if I was lucky, I might die an old lady, peacefully in my sleep. I’ve since discovered that very few elderly people will die in this way in the twenty first century.
When I became a nurse at the age of 42 my whole perspective, attitude and opinion on the dying process changed dramatically. As a nursing student working in aged care I had no clue what was ahead of me. Caring for aged, frail, demented people was never a bother to me, in fact I loved caring for the elderly, a devotion and passion that came easily to me.
After years of experience nursing in all disciplines of healthcare, in numerous hospitals I began to see a pattern emerging of how we care for sick, injured, infirm and elderly people. I also saw that the experience was not positive for a certain demographic particularly the ‘well elderly’ who were tired of life.
Many patients confided in me that they did not want to end up in a nursing home, that in fact they would rather die sooner, as they had enjoyed a happy and fulfilled life. A lot of people conceded that there was really nothing left on their ‘bucket list’. I listened, asked questions and slowly started to understand about ageing, and the associated problems of over-treating elderly people. I came to see that in many cases placing them into ICU had very little in the way of gain and was often a waste of time, money and resources.
I’ve been exposed to so many tragic, traumatising challenges during my nursing and ambulance career that discovering Exit International was firstly a relief — and then I found it liberating. It opened my mind to how many possibilities actually exist around choices at the end of life, and the peaceful and reliable methods that are available to people wanting to take control at the end of a life well lived.
“Many patients confided in me that they did not want to end up in a
nursing home, that in fact they would rather die sooner, as they had enjoyed a happy and fulfilled life.”
I only knew her for a short time but I am honoured to provide some insight into Annah Faulkner’s final days.
It didn’t take Annah and I long to feel like we had known each other all our life as we shared precious time laughing, eating, drinking, chatting about our early lives and the trials and tribulations we had both been through and how our well-lived lives have been so enriching for us both.
Our commitment and trust to each other developed very quickly and brought us both comfort and hope: to me as the Tasmanian Coordinator of Exit International and to Annah as an Exit member making plans for her own final exit. Annah was a very special person and, despite a solid network of close friends, she felt she had very few others with whom she could talk about her plans to end her life on her own terms.
Annah came across obstacle after obstacle when trying to source the equipment she would need, including being interrogated by sales personnel as to why she wanted certain items. She was the first to admit that she was not mechanically minded.
She was on her own and she knew it. She deeply felt the isolation, the loneliness and the fear of being ‘exposed’. She resented being made to feel like a criminal. Annah was a woman with an abundance of conviction and courage, which was evident in the last venture she would undertake in her life.
Which brings me to why I wrote this article.
Australia prides itself on being a caring and compassionate country, with an abundance of resources to help those in need, and which offers support to those who experience suffering in all its forms. Help has been available to people affected by the recent floods and bushfires, to victims of crime, for people needing disability support, to displaced people from other countries, those incarcerated and so forth. However, if you dare to hold someone’s hand, or you wish to be with them as they take their last breath by their own volition, then you run the risk of legal action, and possible conviction.
“Annah was a woman with an abundance of conviction and courage, which was evident in the last venture she would undertake in her life.”
How Annah must have felt in her last hours, totally on her own, with no one to talk to, or even just be present with her, perhaps to hold her hand, is indescribable. I felt sick to my stomach and completely ashamed that this was the sum of the human condition in the twenty first century — the denial of Annah’s human condition.
There was no caring, comfort or even real compassion that could be offered to Annah in her last hour. There was only emptiness, uncertainty and fear as she undertook this last task on her own. Annah’s death was nothing short of cruel, callous and totally uncaring. As a human being Annah had done nothing wrong. She had paid taxes all her life. She had been a successful writer and author of many books which brought pleasure to many.
As I continue to live life, reflecting on the variety of choices we all have to make each day (with some choices obviously being harder than others) I just cannot understand how a civilised, progressive, enlightened society such as Australia cannot — and will not — talk, discuss, advise or inform people on reasonable choices that could, and should, be available to them at the end of life.
“How Annah must have felt in her last hours, totally on her own,with no one to talk to, or even just be present with her, perhaps to hold her hand, is indescribable.”
Australia has a death denying culture. A huge percentage of the population have no clue about death and dying. I’m continually astounded by the number of people over seventy who seem to be completely befuddled by this final stage of the natural human lifespan. You can have a good or bad death. You should have a choice.
Keeping people uninformed about one’s end of life is more about controlling our society: we are shackled with conditions, rules and regulations. Of course there are the elite who have access to the best drugs and know-how but the silent majority suffer on in ignorance, and in silence.
I look forward to the day when organisations like Exit International can have their information brochures on the walls of doctor’s surgeries, when the Peaceful Pill Handbook will be on shelves and in libraries everywhere, along with all the other health related literature. If only!
Exit International was there for Annah Faulkner when no one else was. An enlightened society… I THINK NOT!
The final part of this article was first published on the Exit International website in March 2022
Humanists Australia helps non religious Australians to live ethical and meaningful lives through humanism. Humanists strongly uphold the right to live freely and to make autonomous choices according to our own wishes and values, as long as it does no harm to others. We believe strongly in personal autonomy and that people who have made an informed, non-coerced decision to end their own life should not suffer unnecessarily.
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