Reflecting on the changes at Dying with Dignity NSW

By Gabrielle Brown – DWD NSW Executive Officer 2010 – 2018

Thank you for this opportunity to reflect upon some of the changes that I have experienced during my time as the Executive Officer of Dying with Dignity NSW (DWD NSW) between late 2010 and mid-2018. The changes are significant and could be put into three categories. Firstly, there has been a significant increase in the level of knowledge and activity undertaken by DWD NSW. Secondly, the introduction of new technology has transformed the way in which we engage with our members and the wider Australian audience. Thirdly, the whole campaign received a ‘step change’ from the injection of the research and advocacy of high-profile Australian, Andrew Denton.

When I joined DWD NSW in December 2010, Greens MLC Cate Faehrmann had just seen her Notice of Motion on the Rights of the Terminally Ill Bill 2010 (NSW) lapse. This was one of the few attempts at law reform in NSW, despite the fact that our group had been advocating for voluntary assisted dying (VAD) in NSW since 1973. The only previous attempts were the unsuccessful bills which Greens MLC Ian Cohen took to the NSW Parliament in 2001 and again in 2003. When I started working for DWD NSW, the Board explained that the campaign for VAD laws in NSW was a long-term campaign and that DWD NSW was working on gradually building up our supporter base and our financial resources ready for a future when the time would be right for law reform.

Richard Mills became our President in 2012. With his background as a senior public servant and a lecturer in politics, Richard was keen to build stronger ties between DWD NSW and members of the NSW Parliament. DWD NSW, with the support of independent MLA Alex Greenwich, hosted excellent public forums in 2011, 2012 and 2013, which generated mainstream media attention (including ABC’s 7.30 Report) and built awareness about the need for VAD laws. At all of these forums, the theatrette in Parliament House was bursting with attendees, including politicians and very well-informed speakers and it was usually in

When I joined DWD NSW, most of the decisions about our activities were made by the Board during their meetings held every six to eight weeks. Over the years, we increasingly used group emails to make decisions and take actions between Board meetings. The level of activity by the NSW Board increased significantly, with Board members volunteering many hours of unpaid work on a regular basis. My own working hours increased from an average of 19 hours per week in 2011 to 33 hours per week in 2017.

DWD NSW put a lot of time into the NSW election in 2013, encouraging our members to engage with their local candidates and report back on their position regarding VAD. We published a “Pollies Register” to help our supporters vote for candidates who supported VAD. Across Australia it was increasingly realised that only a grassroots campaign involving local people and state politicians would change the state laws making VAD a criminal offence.

In May 2013 we made another attempt at VAD law for NSW, with the unsuccessful Rights of the Terminally Ill Bill 2013, sponsored by Greens’ MLC, Cate Faehrmann. Prior to the debate in Parliament, DWD NSW worked with Cate and The Greens to promote and attend a number of community consultation forums across NSW.  Despite the failure of the 2013 bill to pass, the regional forums inspired more people to join DWD NSW and tell their own personal stories of why they wanted to see the law changed in NSW. Our current Vice President, Shayne Higson, joined the campaign at this time after witnessing the dreadful suffering and death of her mother from brain cancer in late 2012.

The importance of personal stories to the global campaign for VAD was highlighted by the story of 29 year old woman, Brittany Maynard, who had terminal brain cancer and moved her family from California to Oregon so that she could take advantage of Oregon’s right-to-die law. Brittany made compelling personal videos which were shared globally in the months prior to her peaceful death in Oregon on 1 November 2014. Her story and the advocacy work done after her death by her mother and husband lead to the passage of a VAD law in their home state of California in 2015, with similar legislation in Washington D.C., Colorado and Hawaii in the following years.

Brittany’s ability to garner national and international attention encouraged DWD NSW to consider using video as a communication tool. High-profile clinical psychologist, Dr Sarah Edelman, became our President in 2014. She was very keen for DWD NSW to spend some of our funds getting better videos made of people with personal stories relevant to our campaign. (Interestingly, when Sarah joined the Board in 2008, and for many years afterwards, she was the only woman, but by the time she became President the overwhelming majority of the Board were women).  Sarah recognised that videos were a great way to get around our problem that the people who really wanted a change in our end-of-life laws were often suffering too much to be able to attend events to tell people why they wanted the law changed.

Our first attempt at capturing a personal story on video was in September 2013 when member and actor, Gideon Cordover, shot a ‘home made’ video of the meeting of Sarah Edelman with Aina Ranke, who was suffering from a degenerative and debilitating neuromuscular condition, on what turned out to be the day before she attempted to end her life. This video, shot on a very basic camera and edited by Gideon (thanks to his free access to NIDA’s film editing equipment) was included in a traditional news media story about Aina Ranke and also shared on social media. It helped to build public awareness and understanding of the need for VAD, despite the poor quality of the film.

In early 2015, our Treasurer, Philip Busfield, engaged a supportive filmmaker, Luke Cornish. Luke kept his costs very low and produced a number of professional short videos for us, including the stories of John Grayson and Dr Ian McPhee. The most successful of Luke’s short videos for DWD NSW were those made in 2017 of Annie Gabrielides and her family. They formed a critical part of the campaign which galvanised support for the 2017 Voluntary Assisted Dying (NSW) bill. The first short video which introduced the heart-breaking story of Annie’s experience of Motor Neurone Disease (MND) and her fear of being trapped in a dying body was viewed by over 250,000 people and lead to a dramatic increase in our supporter base.

DWD NSW relaunched our inactive Facebook page in 2015 to enable us to post our videos, comments and news. We posted interesting global news at least twice per week, so that our Facebook page was fresh and inviting. We asked our high-profile ambassadors to use their followers on Twitter to bring more people to our Facebook page and our website, so that more people would hear these personal stories and become advocates for VAD. In May 2017 we launched a new website, to replace the old website we had used since 2005, which had been managed externally. With the new website, I could keep the content up-to-date on a daily basis. This responsiveness was becoming increasingly necessary as we were experiencing a dramatic increase in the volume of material coming out of a number of jurisdictions which were advocating for a change in their law regarding VAD, such as the USA, Canada and Australia. We now have over 16,000 people who have liked our DWD NSW Facebook page and share many of our posts.

When I joined DWD NSW we had the contact details of 1260 individuals who supported our campaign. We now have over 5000 supporters in our database. The original group were averaged 75 years old and most could only be contacted by phone or posted mail, whereas the majority of our current supporters are regular users of email and are somewhat younger. Access to email enables people to respond quickly to any public comments or developments and to attend events where VAD may be discussed.

Whilst our supporter level grew considerably as a result of our public events and our use of social media, it was also greatly enhanced by the establishment of a new meeting group in Port Macquarie. When I joined in 2010, DWD NSW only had one active meeting group, which met every three months in Erina Fair. This long-standing Central Coast group was the backbone of our organisation and continues to be a very important part of our grassroots campaign. However, our supporter base was greatly enhanced by the arrival of a very active and enthusiastic member, Annie Quadroy, with her plan to build a new meeting group on the mid-North Coast of NSW. Annie held the first meeting of this group in June 2014 and hosted a number of great local events which received attention in the local news media. Today we have over 500 members and supporters on the contact list for this regional group.

At the time of leaving DWD NSW in mid-August, we had just moved from our old spreadsheet-based recording system to a new Nationbuilder software platform, which is expected to help build our supporter base even more, by allowing much greater targeting of messages to supporters obtained via social media. This software should also allow membership renewal notices to be emailed automatically to our members, who can pay their subscriptions or make donations via our website payment gateway. We have come a long way from the manual ‘Kalamazoo’ (paper) record-keeping system that we had when I joined the organisation. At that time, the majority of payments were made by cheques posted to us.

By November 2017, when the Voluntary Assisted Dying (NSW) Bill was debated in the NSW Upper House, DWD NSW had become a very modern, active, professional advocacy organisation. Many of us were working 24/7 to help get the bill over the line. This bill came closer to passing than any previous NSW attempt, failing by only a single vote in the Upper House. Apart from the huge level of advocacy work undertaken by DWD NSW during 2017, a significant difference with this attempt at law reform was that the bill was sponsored by a cross-party parliamentary working group, made up of MPs from all the major parties plus the well-respected independent Member for Sydney, Alex Greenwich. The Chair of the group, National Party MLC, Trevor Khan, was passionate about the reform and provided a face for many media articles, whilst working closely with us and other stakeholders. Alongside Trevor and Alex, Lynda Voltz from the Labor Party, and Mehreen Faruqi from The Greens, held very well-attended public consultation forums throughout NSW which we promoted and attended, where possible. Lee Evans MLA, was the Liberal member of the group.

Looking back over the eight years that I worked at DWD NSW, I believe that the most significant development in the Australian VAD campaign was the entry of Andrew Denton. It started with his Di Gribble Argument speech at the Wheeler Centre in Melbourne in late 2015 and the roll-out of his ground-breaking, ‘Better Off Dead’ podcast series. They were the culmination of the 18 months that Denton spent travelling to countries where laws to help people die already exist and by talking for hundreds of hours with the dying, their families, nurses, doctors, politicians, lawyers, academics, priests, surgeons, palliative care specialists and activists on both sides of the debate, both here and overseas. The 17-part podcast series covers the personal stories, the moral arguments and the laws overseas which operate successfully. Not only did Andrew Denton bring together so much compelling knowledge in one accessible place, but he also used his celebrity status as a high-profile television producer, presenter and comedian to ensure that the very convincing arguments for VAD were promoted widely on various television and radio programs. In the following year, with the support of Dying with Dignity organisations around Australia, Denton founded his own advocacy group, Go Gentle Australia. Denton launched the new organisation and a self-published book titled ‘The Damage Done’ in August 2016 during his address to The National Press Club.

Andrew Denton was able to open many politician’s doors and advocate personally for VAD, especially in South Australian and Victoria. Under the leadership of active board members of DWD societies in every state, Andrew inspired significant advocacy across Australia during 2016 and 2017. Denton’s work, alongside the longstanding campaign by Dr Rodney Syme and DWD Victoria, was a major factor in the decision by the Victorian Parliament in May 2015 to establish an Inquiry into End-of-life Choices. This Inquiry eventually lead to the successful passage of The Voluntary Assisted Dying Act 2017 through the Victorian Parliament in November 2017.

The campaign for VAD in NSW has involved many people advocating for change over many decades. It has included many who have experienced or witnessed unnecessary end-of-life suffering. Apart from Annie Gabrielides, who generously gave the 2017 campaign so much of her final year of life, there was also ex-Board member, John Hogan, who died in late 2015, and life member, Loredana Alessio-Mulhall, who campaigned with us over many years despite suffering from advanced Multiple Sclerosis. From my perspective, the work and suffering of all these people has brought us closer to seeing change in NSW than we have ever been before. Meanwhile, in Victorian their Voluntary Assisted Dying Act 2017 is expected to go into operation in June 2019. This achievement should help the passing of similar laws in NSW, despite the more conservative stance of our state politicians.

It is wonderful that we have achieved so much over the last eight years, while our balance sheet shows that the net assets of DWD NSW have actually remained at the same level as when I joined in late 2010, thanks to the financial support of our members and the Board’s good financial management. I have faith in the Board of DWD NSW that they will continue to work with key stakeholders and move us towards success in NSW and that we will not have to wait too long before the desperately needed law reform comes to fruition.