The World Federation Right to Die Conference 2024– Invited speaker Blog 10.
I am currently trying to navigate my life with as much grace and determination that I have despite the fact I am living with a degenerative neuromuscular disease. I am deeply committed to raising awareness about living with a chronic progressive life debilitating illness and promoting better understanding.
I am an advocate for end-of-life choice and dignity campaign, committed to ensuring that individuals facing both terminal and non-curable illness with no defined timeline, have the right to make decisions about their own care. With my own personal experience and profound empathy, I have become an active voice in the End- of – Life Ireland campaign. I believe in empowering individuals with the autonomy to choose peaceful and a dignified end, that is aligned with their values and beliefs.
I will continue to work tirelessly towards campaigning for End-of-life Ireland for a future where persons living with a life debilitating illness can face the end of life with dignity and peace, surrounded by loved ones and supported by compassionate care.
So, on Friday the 20th of September I got the chance to address The World Federation Right to Die Societies as I was invited to attend and speak at the WFRtDS conference which was held for the first time in Ireland this year. I told my story about the reality of living with a progressive neuromuscular disease and what the future would look like for me and why I campaign for the right to apply and be assessed for Voluntary assisted dying and why Ireland needs to include compassionate legislation for me and others like me who are in the similar situation and living with a life limiting and incurable progressive disease with no defined timeline.
The conference was a very emotionally charged venue as I got to listen to personal stories from practicing doctors and care practitioners and delegates from around the globe and learn from their international data and experience. We heard all about the benefits that having legislation has made to the participating countries where Voluntary assisted dying and MAID is available. Compelling arguments were made with several presentations of data and research which has been complied over the last number of years. This event gave everyone attending the opportunity to engage with global experts.
We heard personal experiences from relatives of people who availed of and those who did not have access to MAID experience. Both medical and legal practitioners shared expertise and their reasons for being involved in the provision and advocacy of VAD / MAID. I personally found the event very engaging and thought provoking as I believe in the power of the patient lived experience and that is why I am so passionate about advocating not only for myself but for others like me who are in the same situation but are afraid to speak up.
I firmly believe Ireland can learn and legislate well if they listen to the expertise and learn from the global shared experiences of what works best and put forward legislation that provides the necessary safeguards to protect the vulnerable. A clear legal framework ensures that people who choose VAD, as well as their families and healthcare providers are protected from legal repercussions, provided the process follows strict guidelines. A regulated system provides oversight ensuring the process is carried out safely, ethically, and under medical supervision.
WHILE SOME OPPOSE VAD, ON MORAL OR RELGIOUS GROUNDS, LEGISLATION WOULD NOT FORCE PARTICAPTION BUT WOULD ALLOW THOSE WHO SUPPORT IT TO ACCESS THE OPTION PROVIDING THEY FIT THE MEDICAL CRITERIA AND APPLY TO BE ASSESSED AND THEY GET APRROVED.
I believe the public opinion in Ireland is shifting and is increasingly in favour of introducing legislation for VAD. The government and the politicians need to listen to the Irish public and pay attention to the shift in societal values towards more individual choice in end-of-life care. Enacting laws in line with this sentiment ensures legislation keeps pace with evolving public attitudes. For terminally ill patients or the incurably suffering time is a critical factor. Delays in passing this legislation mean that people who could benefit from the option to end their suffering in a dignified manner are forced to endure unnecessary pain or seek alternatives abroad. I think it’s very important and we need to remind politicians when they are out and about canvassing for our votes that they are elected to address difficult issues and implement legislation that reflects the values and needs of society, End of life decisions, though complex, cannot be continuously postponed or put on the back burner. Marie Fleming brought this issue to the forefront back in 2013 when she brought her case to the Irish Supreme court while we welcome the report from the Joint committee on Assisted Dying from the Oireachtas this issue is currently at a stand still and we welcome and encourage that Voluntary Assisted dying needs to be in the next programme for government as its time to legislate.
My CLOSING PLEA of my address was asking the Irish government and the good people of Ireland to please listen to my words, to be compassionate of my circumstances and others like me who are living with life limiting, incurable conditions allow us the opportunity - if we choose to do so to apply and be assessed rather than exclude us from legislation for voluntary assisted dying.
“Nobody knows better than us when we have endured enough suffering and when we are ready to go.
For me “Death is not the greatest loss of life.
The greatest loss is what dies inside of us while we live.
like our hope, dignity, and strength.
Until next time,
Siobhan Malone McBarron xo
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