INSIDE THIS ISSUE

Resignation of Neil Francis

I t was with great shock and sadness that the DWDV committee learnt of the resignation of

Neil Francis as President and CEO of DWDV on September 11th. Neil has been president of DWDV since 2005 and CEO since 2009, and he will be irreplaceable. He cited personal reasons for his resignation. In addition to being Presi-dent and CEO of DWDV, Neil is Chairman and CEO of the national law reform alliance Your Last Right.com Limited (which he was instru-mental in creating), as well as taking on the Presidency of the World Federation of Right to Die Societies at its meeting in Zurich in June 2012. He was a colossus who strode upon not only the Victorian stage, but also the national and international one.

Neil’s skill and energy led to establishing a relationship with the Victorian Parliamentari-ans, particularly Colleen Hartland, and the in-troduction of the first Dying with Dignity Bill into the Victorian Parliament in 2008. His effec-tiveness in this role led to the DWDV committee appointing him as CEO. He developed a tightly focused strategy to obtain law reform. Unfortu-nately the election of a conservative govern-ment stymied immediate progress. Many small victories followed, all assisting our way to ulti-

mate success. Following a conference of state law reform

societies in Adelaide, Neil pursued the goal of establishing a national body, which was ulti-mately launched at the World Federation of Right to Die Societies in Melbourne as Your Last Right.com Limited in 2010. Neil continues to lead YLR with the financial assistance of the Clem Jones Group.

The WFRTDS conference in Melbourne in 2010 under Neil’s leadership was a spectacular success, promoted the cause of dying with dig-nity, and enhanced the status of DWDV in the world body. Neil became President of the WFRTDS in 2012.

Neil was concerned to develop strong part-nerships with like-minded groups, establish relationships with other concerned bodies (such as palliative care and the AMA), and to expose the untruths and hypocrisies of our opponents. He did this very effectively.

DWDV will always be grateful for the contri-bution that Neil has made. When law reform is finally achieved in Victoria, it will be in large measure due to him. Dr Rodney Syme, September 2012.

SPRING 2012 | NUMBER 160

P2 P3 P4 • From near & far: news from around the world

• To DWDV members from Neil Francis

• Tony Nicklinson

• From near & far continued

• Tony Nicklinson contin-ued

• Meetings & Workshops

A reminder that the DWDV Annual

General Meeting this year is on Saturday November 10th.

Our keynote speaker is Mr Bob Brown. See more about Bob Brown in the Winter edition of Update.

Be seated for a 2pm start at the Unitarian Church, 110 Grey Street, East Melbourne. Melways Ref: MAP 2G:D2

Bring a friend.

AGM 10 Nov

Mr Brown will deliver the 2012 AGM keynote address.

"Tell me - I forget. Show me - I remember. Involve me - I under-

stand."

Confucius

551 BC - 479 BC

Meet our new office assistant, Louise Wilkie

H ello, my name is Louise Wilkie. I recently com-

menced working at DWDV as a part-time administration assis-tant, assisting Carolynne, our Office Manager.

I have previously worked for large multi-national companies and small, local companies and very much look forward to as-sisting our members, and work-

ing towards our goal of dying with dignity. I look forward to speaking with you over the phone or perhaps meeting you in person at a workshop. Thank you for your support. Editor: Please come and say hello to Louise at our forthcoming AGM on November 10th.

Left: our new office assistant Louise.

Page 2 | DWDV Update #160 Spring 2012

BBC Documentary: Choosing to die Australia—The highly moving UK docu-mentary “Choosing to die” was recently shown on SBS TV1. It was presented by British writer Terry Pratchett who was diagnosed with Alzheimer’s disease in 2007. If you missed it you can still watch it online at; http://www.sbs.com.au/documentary/program/1015.

It focuses on the stories of people suf-fering from incurable illnesses who are determined to choose the time and man-ner of their death by going to Dignitas in Switzerland. The impact is emotionally overwhelming when motor neurone dis-ease sufferer Peter Smedley invites Terry Pratchett and the camera to sit in on his death. The camera intimately captures the whole procedure as this courageous man, in the company of his loving wife of 40 years, drinks the medication to give him the peaceful death that he so seeks.

This video, at the same time as being emotionally wrenching, makes for abso-lutely compelling viewing.

From near

& far

France update France—A recent Harris Interactive survey found 91% of people in France support the right to choose to die for those who are incurably ill. Support-ers include the newly elected Presi-dent of France, President Hollande who came to power this year with a policy to introduce voluntary eutha-nasia law reform. He pledged as a candidate to allow the choice to die for people in the advanced or terminal phases of incurable illnesses and in unbearable pain.

After being elected, the new Presi-dent appointed a medical professor to conduct a study into it. Some support-ers are cautious in their optimism, however, because of their concern at the choice of study leader, who they fear has a Catholic bias. The conclu-sions of this study are expected by the end of this year.

punished. Guidelines issued by the Crown Prosecution Service now say that if someone makesa "voluntary, clear, settled and informed decision to suicide and is assisted by a person wholly motivated by compassion," then charges should not be pursued. This is a laudable step but is, by no means, a substitute for a proper assisted dying law to allow people to die in the UK and not have to travel to Switzerland. A call for such a law has been made by the Liberal Democrats, which is the Party of the Deputy Prime Minister and the third largest political party in the UK. The Liberal Democrats are currently in coalition government with the Conservatives. They voted recently at their party conference to call for a specific, right-to-die law to be introduced in Britain.

NZ update New Zealand—NZ saw its first formal attempt to change the law in 1995. That Death with Dignity Bill was defeated by 61 votes to 29, with many abstentions. Then, in 2003, a private member's bill was introduced which was narrowly defeated by 60 votes to 58 (with one MP abstaining and one not voting).

The issue has been rekindled recently by Labor MP, Maryan Street signaling her intent to put forward another private member's bill. However, as a private member’s bill, it must go into the parlia-mentary ballot which means it must first be drawn out of the ballot box for consid-eration, which could take some time.

Meanwhile, in a landmark court case, NZ man, Evans Mott, 61 was recently dis-charged without conviction, despite pleading guilty to aiding and abetting his wife’s suicide. Rosemary Mott had been suffering from an aggressive, incurable form of multiple sclerosis. She recorded a farewell video message to family and friends that said: "I'm making this movie so that nobody is under the illusion that I've been coerced into what I've done. Or I've been murdered, or for that matter,

committed suicide. I am euthanising my-self . . . Okay. That's it. See ya..”

After recording this, she asked her hus-band to "go to the supermarket" and when he returned a few hours later he found his wife dead. Mr. Mott readily admitted hav-ing helped prepare a "suicide kit" for which his lawyer called him a hero and courageous for helping his wife end her suffering. Even the Crown Prosecutor ad-mitted the crime was committed out of compassion for his wife. So the judge's decision to discharge the 61-year-old with-out conviction despite his guilty plea is indicative of the growing public support for assisted suicide in compassionate cir-cumstances.

Another significant pointer to the growing mood of support in NZ: their PM John Key says he supports voluntary eu-thanasia. In August he said publicly that euthanasia is already happening in hospi-tals, and that he would personally consid-er it himself if he was terminally ill.

UK update United Kingdom—The publicity created by terminally ill UK citizens wanting to go to Switzerland to seek a peaceful end is highlighting the need for UK law reform.

In recent months, huge publicity has surrounded the case of locked-in syn-drome sufferer, Tony Nicklinson who peti-tioned the court for a medically assisted death in the UK. He failed in his bid, the judges concluding that it was for Parlia-ment, not the courts, to decide whether the law should be changed. Just one week lat-er, Tony Nicklinson died through the mechanism of refusing treatment for the pneumonia he contracted. His wife Jane, vowed to fight on and lodge an appeal, as his wife and carer, to continue her hus-band’s campaign for a change in the law in his memory.The British Humanist Associ-ation is also applying to intervene in the case. For more about Tony see page 3.

Terminally ill UK citizens, who go to Switzerland to die, naturally require help to enable them to make the trip. That pre-viously exposed the helper to potential charges of aiding a suicide. However, UK Members of Parliament now seem to ac-cept that, in certain circumstances, people who compassionately assist a loved one to die at their request should not be

Switzerland update Switzerland—The majority who travel to Switzerland to die come from Ger-many, France or Britain. Assisted sui-cide has been allowed in Switzerland since 1942 and it is legal providing the person assisting has no vested interest in the death. Thus Swiss organisations like Dignitas are well known for help-ing terminal sufferers from Switzer-land and other countries to a peaceful end. The situation, however, recently came under challenge. A bid in Swit-zerland's parliament to toughen controls on assisted suicide was voted down.

Continued on page 4

DWDV Update #160 Spring 2012 | Page 3

I t has been my great pleasure and privilege to serve DWDV and its

committee in leadership roles for seven years. As I look back, our dedicated team of deeply-committed staff and volunteers has over the years achieved much, from internal yet important improvements in engaging our members, to major achievements like the first ever dying with dignity Bill before the Victorian Parliament, providing information services to the public about existing healthcare (and refusal) options and rights, providing referrals to private counselling for those suffering intolerably at the end of life, engaging constructively with related professional and social bodies to spread the word and build support, and being a proud Foundation member of Australia’s peak body for responsible assisted-dying law reform, YourLastRight.com

In recent times though, being in considerable overdrive through multiple leadership roles in the dying with dignity movement at the state, national and global level, it was clear that something had to give. Reluctantly, I formed the view to retire from my roles as President and CEO of DWDV. I am delighted that Lesley Vick has stepped into the President’s

role. DWDV will continue to prosper and vigorously pursue law reform under her strong and no-nonsense leadership. While I am no longer officially involved in the committee or management of DWDV, the society continues to have my enduring support as a member and occasional volunteer. As CEO of YourLastRight.com, of course I will continue to work

with the DWDV committee at the strategic national

level, as well as through my Presidency of the World Federation of Right To Die Societies, of which DWDV is also a proud member. It is with deep gratitude and the pleasure of friendships forged in the spirit of respect, cooperation and common goals in fundamentally moral law reform, that I look back at my time within DWDV. We’ve come a long way. There is much to do to get law reform over the line, yet it’s eminently achievable with persistence and focus. I look forward to DWDV continuing to enjoy your undying (if you’ll forgive the pun) support, whether that be financial, volunteer-ing, moral or other.

To DWDV members from Neil Francis

T he travail, torment and death of Tony Nicklinson, aged 57, on August 22 has had a tremendous impact on the

dying with dignity debate in the UK. Seven years ago, Tony suffered a rare form of stroke

called a brain stem stroke. The effects are permanent, and it causes a condition called “locked in syndrome”, because the victim is totally paralysed in all movements except for breathing, and the limited ability to move his eyes. He could not swallow and was tube fed. He could see, hear and think, but could not communicate except by use of his eyes to prompt for letters or simple words. He was essentially totally dependent. He was cared for by his wife and a large team of trained persons.

That short, clinical description is rather chilling, but I am indebted to a DWDV member for the following more human description of the effects of such a disease on a woman with similar paralysis as Tony, although she could talk and swal-low. “Because her body was so badly affected and there was no more help available (she already needed three people just to shower and dress her every morning, let alone the clean-ers, shoppers, cooks, toileters), her real and not very distant fate was to be put into a high care nursing home, housed with the comatose and the crying. She was filled with abso-lute horror at this depressing and fearful prospect. The pain was hard to deal with, but what was equally important was her loss of sense of dignity, privacy and power to choose what she wanted to do. As her muscles failed she sometimes lost control of her bowels. It was her adult son who had to clean her up after one such accident. Imagine yourself there.

Her regular toilet routine was exhausting and humiliating. She needed someone to cut up her food, someone to put on and do up her bra, always having strangers in her house. A thousand and one things we take for granted were impossi-ble.” As her disease progressed, she knew she would one day end her own life. She knew she would have to act before she lost all hand function and ability to swallow. When she got control, it changed her. “It gave her peace of mind, and then it gave her peace of body.” Her family was with her when she simply went to sleep and did not wake up.

But Tony Nicklinson could not take his own medicine, even if someone might provide it for him. He needed medi-cal assistance to die with dignity. He too had reached a point where he could not go on with his intolerable life. He peti-tioned a British Court to allow a doctor to assist him to die. Suicide is not a crime in Britain, but like here, assisting sui-cide is. His plea went to the highest Court in the land – but was rejected. Tony was devastated by this decision. He took the only option that his so-called civilized society allowed him – he set out to starve and dehydrate himself to death. Pneumonia intervened, and Tony refused antibiotics. The death certificate would say he died of pneumonia, but his wife said he died of a broken heart, of grief. And I can well believe it. Hopefully Tony will not have died in vain. The publicity surrounding his legal fight, and the increased un-derstanding in the community about the importance of choice and control has been enormous. The public outcry at the cruelty of Tony’s treatment has caused great anger and frustration.

Continued on page 4

Neil speaking at the recent WFRTDS conference

Tony Nicklinson by Dr Rodney Syme

Page 4 | DWDV Update #160 Spring 2012

Published by Dying With Dignity Victoria Inc. ABN: 80 591 186 892 Reg. No: A00006974B E: dwdv@dwdv.org.au W: www.dwdv.org.au T: (03) 9877 7677 F: (03) 9877 5077

P: 3 / 9 B Salisbury Avenue, Blackburn, Victoria 3130, Australia Patrons: Mr Julian Burnside QC Hon. Rod Mackenzie OAM

President: Ms Lesley Vick Vice-President: Dr Rodney Syme Secretary: Mr Mark Newstead Treasurer: Mr Mike Tinsley Other committee: Mr John Hont, Ms Judith Hoy, Mrs Rowena Moore, Dr Max Sutherland Special advisor: Ms Lyn Allison

Meetings & Workshops

Ballarat group meeting Locals are cordially invited to attend the next DWDV Ballarat Group meet-ing on Tuesday the 13th of November at 10.00 am. Other members, particu-larly in the Geelong and Bendigo re-gion, are also very welcome to attend. RSVP to Ken on 03 5331 1328. We hope you can attend!

Melbourne workshops

Advance Directives Workshop Led by Dr Rodney Syme and facilitat-ed by Penny Casey, this friendly and comprehensive workshop will teach you all you need to know about com-pleting and storing DWDV documents aimed at ensuring your end-of-life choices are respected. Next workshop: February 2013.

Dignity in Dementia Workshop Based on Dr Rodney Syme’ s experi-ences of many people’s fear of devel-oping dementia, attendees will (1) learn about dementia and its effects; (2) understand how it is diagnosed and managed; and (3) complete DWDV’s Advance Directive for De-mentia to document your treatment or refusal wishes. Next workshop 29th October 2012.

Workshop Bookings Please call the office on 9877 7677 for any enquiries or to register your inter-est. Fees: Member pensioner $25 Member non-pensioner $50 Non-member pensioner $50 Non-member non-pensioner $100

From Near and Far continued from page 2. Although the number of people who

ended their lives with the help of assisted suicide organisations was up in 2011, the number of foreigners travelling to Switzerland to die had actually declined in recent years. Attempts to prohibit foreigners travelling to the country to die were rejected by Switzerland’s

Parliament. That vote mirrors a referendum in Zurich last year when voters overwhelmingly rejected bans on assisted suicide and "suicide tourism".

So, the situation remains unchanged in Switzerland.

Tony Nicklinson, continued from page 3. Increased pressure will be brought to

bear on the Parliament as a result. It is a significant fact that incidents like this can be even more effective in bringing about change than all the most sophisticated argument. Yet this is not surprising be-cause experience of extreme suffering on one hand can lead to a change of belief, and an experience of a dignified death can also lead to a change of mind.

Dr Sam Ahmedzai is a Professor of Palliative Medicine in Sheffield. Like most palliative care specialists he was fervently opposed to changing the law to allow assisted dying. But after personal experience in Oregon and Amsterdam, he has radically changed his mind on assist-ed suicide and says in both places good local palliative care coexists with assisted dying. In his article in the British Medical Journal (19/6/12) he wrote that;

“it is unreasonable, inhumane and patronising of British palliative care to insist that a few people should suffer ex-treme distress and indignity because soci-ety ‘values their lives’ - regardless of how meaningless those lives have become to their owners. It is inconsistent of British palliative care to trumpet about how it enables personal choices about place of terminal care, but to deny patients the choice of the timing of death. It is contra-dictory of British palliative care to take an opposing stance to assisted suicide in the name of ‘protecting the vulnerable’, but sees one of its important roles as helping

people to withdraw from life-sustaining treatments such as chemotherapy or blood transfusions, as this is thought to be more consistent with the hospice view of a ‘good death’. It is hypocritical of Brit-ish palliative care to deny patients the opportunity to die at the time and man-ner of their choosing, but to take it on itself to decide when to increase sedation or withdraw fluids, acts which will of course ultimately lead to an ‘assisted death’ – but on the doctors’ and nurses’ terms.”

A former editor of the Catholic Her-ald, Peter Stanford, wrote in The Tele-graph (23/8/12) that “there aren’t many meetings that change your instinctive notions of what is right and wrong, but the day I met Tony and Jane Nicklinson was one. It may be because I am a life-long Catholic, for better or worse, and my Church is so unbending in insisting that God gives and takes away life. …or simp-ly that I had never previously had the debate about the right-to-die spelt out so uncompromisingly for me by someone in the midst of the issue”.

After his debate with Tony, and the support of Jane, Stanford wrote “I could see no reason why Tony Nicklinson shouldn’t be able to choose the time and manner of his death with as much digni-ty as we could afford him”. That is why Tony’s story is so powerful. It may yet change the law in Britain. Dr Rodney Syme, September 2012