This article was originally published by The Conversation on 30 October 2020 by Jeanne Snelling and Professor Andrew Geddis of the University of Otago and reproduced here using the Creative Commons license. The original article can be found here: https://theconversation.com/assisted-dying-will-become-legal-in-new-zealand-in-a-year-what-has-to-happen-now-149138

The preliminary results of New Zealand’s referendum on the End of Life Choice Act were conclusive. Some 65.2% of voters supported the law coming into force, while 33.8% opposed it.

Although around 480,000 special votes are still to be counted, the margin is so great there is no chance these will alter the final outcome. Consequently, the End of Life Choice Act 2019 will come into force on November 6 2021, one year after the official vote is announced next week.

It will then become lawful to offer assisted dying (AD) to terminally ill individuals who meet the legislation’s eligibility criteria. The delay in the law taking effect provides a 12-month window to implement the necessary arrangements for AD to take place.

In the meantime, what needs to happen next? Immediate priorities for the Director-General of Health under the legislation are:

– to appoint a Registrar (assisted dying)

– to establish the Support and Consultation for End of Life in New Zealand (SCENZ) Group

– to appoint an End of Life Review Committee.

 

The role of the registrar (assisted dying)

The Registrar (assisted dying) plays a core role in monitoring and reporting on compliance with the Act. They will also direct any complaints about AD to the appropriate bodies.

The Act, administered by the Ministry of Health, requires adherence to strict regulatory processes. These must be documented in prescribed forms submitted to the Registrar before AD may be performed.

Approving and issuing these prescribed forms falls to the Director-General of Health.

 

What SCENZ will do

Curiously, the Act does not prescribe the composition of the SCENZ Group. It simply requires that the Director-General appoint members with the necessary knowledge and understanding to perform its functions.

The group essentially has two roles:

– to determine standards of care and advise on the required medical and legal procedures for the administration of medication for AD

– to provide practical assistance if requested.

The second role is largely administrative and facilitative. SCENZ is required to curate and maintain a list of health practitioners willing to be involved in AD, which includes:

– doctors willing to act as replacement medical practitioners should a person’s own doctor be unwilling to participate in AD due to conscientious objection

– medical practitioners willing to provide an independent second opinion on a person’s eligibility for AD

– psychiatrists willing to provide specialist opinions on a person’s capacity, should either or both the attending or independent medical practitioners not be satisfied that the person requesting AD is competent

– pharmacists willing to dispense the necessary drugs.

Given these functions, the SCENZ group will presumably be comprised of suitably qualified medical practitioners and pharmacists as well as individuals with knowledge of the relevant law and tikanga Māori, although its final composition remains to be seen.

 

Compliance and review

The Director-General of Health must also appoint a three-person End of Life Review Committee. This body is tasked with evaluating reports of assisted deaths to determine if the statutory requirements are being complied with. It can refer cases to the Registrar if it is not satisfied.

The Act requires the committee to be comprised of one ethicist and two health practitioners, one of whom must be practising end-of-life care.

 

Role of the Medical Council

Given the medical profession will have primary responsibility for providing AD, it’s likely its professional body, the Medical Council of New Zealand, will need to begin formulating and consulting on clinical practice standards for medical practitioners involved in providing or facilitating AD.

While the council publishes generic standards of professional practice, including standards for obtaining informed consent and cultural safety, specific guidance should be developed for AD.

The standards should incorporate the legal obligations imposed on medical practitioners under the Act. These include the prohibition on initiating a discussion of AD with a patient, and the legal obligation to inform a patient of their right to a replacement medical practitioner if their doctor objects to AD.

The Medical Council could also provide guidance on clinical practice issues that may arise, including ways of identifying coercion, or how to manage difficult conversations with patients (such as when they are found to be ineligible under the Act).

 

Objection and obligation

Significantly, the Act doesn’t require health institutions to provide AD services. Hospice New Zealand has already signalled it will not provide AD, as it is contrary to its philosophy “neither to hasten nor to postpone death”.

However, a recent High Court decision notes that although institutions may choose not to provide AD, medical practitioners will still be required to discharge their obligations under the Act — including the obligation to provide information to patients.

Although an organisation may elect not to provide AD, it may employ medical practitioners who are willing to. Provisions will need to be made to enable such practitioners to provide AD outside their own organisation. This is an area that will require careful navigation.

One significant issue yet to be determined is whether AD services will be specifically funded, and if so how. The Ministry of Health will need to resolve this over the next year.

Supporters of Yes for Compassion celebrate today’s referendum results showing 65.2% of Kiwis voted ‘yes’ to the End of Life Choice Act becoming law in New Zealand.

 

Preliminary results, released this afternoon by the Electoral Commission, show a decisive majority of Kiwis voted in favour of legislation to allow terminally ill adults the choice of an assisted death if their suffering becomes unbearable.

 

“This vote was about compassion and choice. We’re delighted New Zealand came together and voted for choice for their loved ones and for themselves,” says Yes for Compassion Executive Director Dr Jessica Young.

 

“Our nation is admired worldwide as a liberal democracy and the first to give women the vote in 1893. Today’s historic victory continues that tradition, providing the choice of an assisted death to terminally ill Kiwis who want and need it – saving a great deal of unnecessary suffering for individuals and their loved ones.

 

“It’s an honour to celebrate with individuals who so bravely shared their personal stories during this campaign. 

 

“We also remember and acknowledge the decades of work that paved the way for the End of Life Choice Act becoming law, from Maryan Street’s 2011 Parliamentary bill to the courageous late law reformer Lecretia Seales’ 2015 court case and the tireless work of David Seymour MP since, as well as those campaigners who have not lived to see this day.

 

“We ran an informative campaign and Kiwis have proved themselves to be smart, compassionate voters, unswayed by opponents’ misinformation. We’d like to thank each person who ticked ‘yes’ and made their vote count.

 

“The End of Life Choice Act is a safe, narrow law that will transform the end of life experience for a small number of terminally ill Kiwis for whom palliative care cannot ease their suffering.”

 

The End of Life Choice Act enjoyed support from high profile individuals such as former Prime Minister Helen Clark and her deputy Sir Michael Cullen, himself terminally ill with cancer, as well as Sir John Key.

 

Preliminary results do not include special votes, such as votes cast overseas. Final referendum results, including special votes, will be released by the Electoral Commission on 6 November.

 

The End of Life Choice Act has already been approved by Parliament and the referendum is binding. Therefore, a ‘yes’ vote means the Act will become law 12 months after the final referendum result is released – on or around 6 November 2021. There is a 12 month implementation period between now and then to allow the robust safeguards and processes laid out in the Act to be established.

 

http://yesforcompassion.org.nz/

 

Ends.

 

Notes:

We can provide interviews with other campaigners such as Matt Vickers, Lecretia Seales’ mother Shirley Seales, terminally ill individuals Stuart Armstrong and Bobbie Carroll and leading medics, lawyers and academics.

 

Media contact: Jo de Joux – 021 245 6924

Yes for Compassion welcomes newly released polls showing majority support for End of Life Choice in all seven Māori electorates, including 60 percent support in Te Tai Tonga.

 

The research, commissioned by Māori Television and carried out by Curia Market Research, shows average support of 53 percent: Te Tai Tonga 60%, Te Tai Hauāuru 57%, Ikaroa-Rāwhiti 54%, Waiariki 52%, Te Tai Tokerau 51%, Hauraki-Waikato 50% and Tāmaki-Makaurau 50%.

 

University of Canterbury academic Te Hurinui Karaka-Clarke says “High support among Māori voters for the End of Life Choice Act will surprise many people – but it shouldn’t. 

 

“Once you take the time to ask us, you’ll realise like any other population we hold a range of views. This research reflects that. There are many ways to understand tikanga Māori.

 

“I believe that tikanga Māori is evolving. There is a whakatauki phrase ‘Me whati te tikanga, kia ora ai te tikanga’. It means: there are times when tikanga needs to be broken for tikanga to survive. I believe this is one of those moments, and these polls show many other Māori people agree with me.” 

 

He continues “If you subscribe to the notion that we look to our past to inform our future, then we have oral traditions which confirm that tikanga allows us to assist our loved ones to pass in certain circumstances.”

 

Maata Wharehoka, a death doula living with the progressive lung disease COPD, says “My joining of the Yes for Compassion campaign is a way of saying my spirit, mind and body have suffered enough. Inside, there is unexplainable suffering that no one else can measure but me. It is my choice and mine only.” 

 

Both Karaka-Clarke and Wharehoka featured in Paddy Gower’s Newshub discussion about the End of Life Choice referendum, which aired on Three last night.

 

In March this year, research undertaken by Horizon on behalf of The Hui found 72 percent of Māori said they would vote in support of the End of Life Choice Act at the referendum.

 

http://yesforcompassion.org.nz/

 

Ends.

 

Notes:

Te Tai Tonga 60%

https://www.teaomaori.news/te-tai-tonga-voters-back-euthanasia-poll

 

Te Tai Hauāuru 57%

https://www.teaomaori.news/te-tai-hauauru-candidates-staunchly-oppose-voters-on-end-life-choice-act

 

Ikaroa-Rāwhiti 54%

https://www.teaomaori.news/ikaroa-rawhiti-candidates-cant-agree-on-end-life-choice-act

 

Waiariki 52%

https://www.teaomaori.news/maori-partys-waititi-hard-on-heels-labours-coffey

 

Te Tai Tokerau 51%

https://www.teaomaori.news/third-north-undecided-te-tai-tokerau-poll-results

 

Hauraki-Waikato 50%

https://www.teaomaori.news/labour-looking-strong-waikato-hauraki

 

Tāmaki-Makaurau 50%

https://www.teaomaori.news/tamaki-makaurau-seat-grabs-poll-results

Watch Karaka-Clarke and Wharehoka speak to Paddy Gower here: https://www.facebook.com/watch/?v=800845830456766

 

View earlier research from The Hui here: https://www.newshub.co.nz/home/politics/2020/03/m-ori-back-end-of-life-choice-bill-poll.html

 

Media contact: Jo de Joux – 021 245 6924

This piece was first published by the New Zealand Herald on the 14 October 2020 and the journalist Carolyne Meng-Yee has kindly provided permission for us to republish here.

As her lungs filled up with fluid and the sound of death came closer, Shirley and Larry Seales told their daughter, Lecretia, “We love you. You have our permission to go now.”

“Her death wasn’t peaceful,” Shirley told the Herald.

“Those last days are not what you want to see your child go through. I loved Cretia to pieces, you don’t want to give up and lessen the time you have but when it gets that bad you don’t want to hang on either. It’s just cruel.”

Lecretia (Cretia) Seales, 42, lived for the law and died campaigning for voluntary euthanasia.

The tenacious high-powered law reformer had previously worked with Sir John Key and Sir Geoffrey Palmer. In 2011 she was diagnosed with an aggressive and lethal brain tumour. Five years after Lecretia’s death New Zealanders will this week have the choice to vote for or against the legislation of voluntary euthanasia.

Regardless of whether the government is Labour or National-led, the public referendum on October 17 is binding. If there is a “yes” vote, the End of Life Choice Act will come into force in October 2021.

Lecretia’s parents, who never imagined their “incredibly private” daughter would become the poster-girl for euthanasia, are urging Kiwis to tick “yes” on Saturday.

“It used to hurt to see all the photos but we have got used to it and we are incredibly proud but it’s not about Cretia,” says Shirley.

“We want it to pass, we would feel like it was part of the legacy for her – there are so many people suffering, it should be available.”

The couple say they are tired of the emotive arguments that euthanasia is an abuse of the elderly, mentally ill and disabled.

“It’s not compulsory so you don’t have to do it,” says Larry.

“But you don’t have to stop someone else’s right to do it – you are not eligible unless you are dying of some terminal illness. This whole slippery slope argument is somehow once you do this you are going to bop off old people, your disabled, that it’s going to encourage more suicides is just scaremongering. It’s not based on fact.

“Those arguments were raised in Lecretia’s court case. If you looked at Oregon who have had this for years – there was no evidence there. The same arguments get thrown up all the time,” Shirley says.

Shirley believes that, if Act Leader David Seymour’s proposed law had been in place before Lecretia’s death, she wouldn’t have actually made use of it.
She just wanted the choice.

And there’s no need for a “cooling off ” period like Victoria because the safeguards are robust enough, she says.

“The bill is not as loose as Lecretia would have liked. She would have liked to be given a directive if she lost her mind and she couldn’t give her informed consent. She wanted Matt [Vickers, her husband] to be able to do it on her behalf but that’s not possible under this legislation. Cretia felt bad for people with degenerative diseases that some of those people suffer so much but at least if we can help the terminally ill and unbearable pain then that’s a start.”

Despite polls showing Kiwis are in favour of euthanasia, Shirley is worried New Zealanders will become complacent. “When we get polls that say 67 per cent are in favour, people might think a vote might not make any difference – but it does.”

Lecretia was born on April 4, 1973, the eldest of three siblings, Jeremy and Kat. At primary school she was shy and wouldn’t answer her name on the school roll. Larry says it’s his fault – he named his eldest daughter Lecretia after a song by Three Dog Night.

“Cretia would say, ‘Why don’t you call me something like Jane, people wouldn’t start a conversation with my name and I would quietly sit in the corner and nobody would notice me,'” he says.

At age 10 Lecretia knew she wanted to be a lawyer.

She loved reading and methodically alphabetised her books like a librarian.

Shirley misses her “beautiful” daughter who had a social conscience and fought for the underdog.

“When she walked into a room people would turn to look at her. She was stunning, naturally beautiful but unaware of people looking at her. When she got sick, I would watch people look at her with pity because she was limping and she had lost her hair. But she was oblivious to it. She didn’t care, she was happy in herself.”

Lecretia wanted to be a mother like her mother but was robbed of life and giving life.

Shirley says, “Cretia thought having a terminal illness was nowhere as bad as not being able to have children.”

Lecretia’s illness began with blinding headaches and deteriorating vision – her optometrist put it down to her being “overworked”. She lost her sense of direction and at times would get into the wrong car or catch the wrong bus home. She limited her water intake at work because she would get disoriented after using the bathroom.

In March 2011 she had surgery to remove a tumour that was pressing on her spinal cord.

The operation was risky because the tumour was huge and occupied a huge part of her brain.

“If she didn’t have the surgery she would’ve died within weeks. After surgery, she could’ve been left with paralysis or be completely blind or she could’ve died. She had six weeks of radiation, which left her head severely burned and she lost her short-term memory,” Shirley says.

Lecretia was worried about losing her mind and becoming a “mad” woman.

“She worried if the pain became unbearable, she would be filled up with drugs and be lying there not knowing where she was, not recognising her loved ones so to her that wasn’t living at all. The idea of saying crazy things and not being of sound mind wasn’t her and Lecretia liked being in control.”

Larry and Shirley want to thank Matt Vickers, Lecretia’s husband, who supported her in life and in death.

“He’s done an admirable job. Lecretia gave him permission to go find a new life, go find a wife and start a family.”

Vickers spent more than five years campaigning with her, they said. “He was beside Cretia before she died, which was amazing.”

Shirley says Lecretia sits on her shoulder and they talk.

“When I am driving to work and the sun is rising and it’s a beautiful day – Lecretia loved the sunshine and being in it – I think to myself Lecretia would love this today, you really would.”

The referendum: At a glance

The referendum question will be: “Do you support the End of Life Choice Act 2019 coming into force?” This piece of legislation has already been passed by Parliament but needs majority public support to come into force.

The act would allow a person with a terminal illness to request assisted dying. To be eligible, they would need approval from two doctors who must apply safeguards, which include competency and no evidence of coercion.

The two voting options will be:
• Yes, I support the End of Life Choice Act 2019 coming into force.
• No, I do not support the End of Life Choice Act 2019 coming into force.
The referendum is binding. If a majority of voters choose “yes”, the law will come into force a year after the election (October 2021). If a majority of voters choose no, the status quo will remain.

For:
• Allows people to die with dignity and without extreme suffering.
• Gives them control over when and how they die.
• Safeguards will prevent vulnerable or disabled people from being pressured into ending their lives.
• There is no evidence of a “slippery slope”: laws can be broadened only with public and political support.
• Polls consistently show majority public support for voluntary euthanasia in New Zealand.

Against:
• Vulnerable, disabled elderly could be pressured to end their own lives.
• Some people could feel a “duty to die” because they believe they are a burden.
• Assisted dying could be used to save healthcare costs and could worsen discrimination against Māori and Pacific people.
• The law could be broadened to cover more groups, such as mentally ill or younger people.
• There is no “cooling down” period so patients may end their life on a whim

Yes for Compassion and pro-choice doctors, have today called for the New Zealand Medical Association (NZMA) to stop spreading deceptive End of Life Choice information.

 

An excerpt from the NZMA ‘Fact Sheet’ on End of Life Choice says “… the medical practitioner entrusted to make this assessment does not require any previous contact with the person and does not need to be qualified in the specialty relevant to the person’s condition. It is not clear if this criteria would be met for a person that declines (or cannot afford) treatment or services without which they would be likely to die within 6 months….. It is unclear how “advanced state” will be defined. It is unclear whether decline would be considered to be irreversible in circumstances where it is due to a person being unable to access (or afford) appropriate care or services. It is not clear whether a person in a steady state of physical disability such as a quadriplegic would meet this criterion.”

 

“This information is deliberately misleading or completely false,” says Dr Miles Williams, Cardiologist at Hawkes Bay DHB.

 

“It is wholly irresponsible from an association who purports to speak on behalf of all Doctors and uses that position to influence voters against End of Life Choice.

 

“The NZMA did the same thing with cannabis but yesterday, four days out from the Election, changed its position. Today we’re calling on them to stop their deceit on End of Life Choice,” says Dr Williams.

 

Dr Williams says with just 3,000 members, out of 18,000 doctors in New Zealand, the NZMA does not speak on behalf of all doctors.

 

“Many of us support End of Life Choice because medicine must combine a science-based approach with one that incorporates human and ethical considerations. The whole package must be based on trust. The ethics of assisted dying are clear, there are reasoned arguments showing it is ethical for a doctor to assist a dying person to die,” says Dr Williams.

 

“NZMA’s persistent insistence that assisted dying is unethical reflects an increasingly isolated position. It is not supported by the World Medical Association which removed it from their position statement on Euthanasia in 2019. It is also inconsistent with the NZMA’s own statement on the ethics of abortion, part of which reads “Rather than an absolute, dichotomous, rights-based “right to life” versus “right to choose” lens to view abortion, we suggest a pragmatic alternative…””.

 

Dr Williams says for doctors who support End of Life Choice, the movement can be summarised as follows:

• This is not a life and death issue. It is a dying and death issue.
• This is not an act that gives doctors the right to take away life. It is an act that gives doctors the right to assist dying people to die.
• This is not a movement initiated by doctors or governments. This is a global movement instigated by ordinary people facing personal tragedy.
• This is not experimental legislation. This is legislation similar (and stricter) to that available to millions of people around the world (and no country with this legislation has ever seen fit to reverse it).
• There is no evidence of deterioration in doctor patient relationships (in fact they are enhanced), there is no evidence the vulnerable or disabled are at risk, there is no evidence of coercion and there is no evidence of normalisation of suicide or increase in suicide rates.

 

“The truly vulnerable are those who are truly dying with unbearable suffering and who are refused the help they request on the grounds their suffering is necessary and will end at the appointed time,” says Dr Williams.

 

Ends.

 

Pro-choice Doctors include:

Dr Libby Smales, Specialist Palliative Care Physician CNZM FAChPM, MBBS

Dr Lance O’Sullivan

Dame Margaret Sparrow, Sexual Health Physician (retired)

Dr Cindy Towns, Consultant Internal Medicine Physician and Geriatrician

Dr Stanley Koshy, GP

Dr Jack Havill ONZM, Intensive Care Medicine Specialist (retired)

Dr Miles Williams, Cardiologist

Dr Richard Luke, Cardiologist

Dr James Curtis, Respiratory Physician

Dr Nik Krawchenko, Medical Registrar

Dr Hamish Liggins, GP Registrar

Dr Malcolm Arnold, Gastroenterologist

Dr Mike Halstead, Medical Registrar

Dr Shannon McCarthy, Medical Registrar

Dr Alan Stanley, Neurologist

Dr Baneet Singh, Medical Registrar

Dr Kate Kerse, Medical Registrar

Dr Brad Sandleback, Emergency Medicine Consultant

Dr Grant Cave, Intensive Care Consultant

Dr Mariusz Wolbinski, Cardiologist

Dr Emma Jones Medical Registrar

Dr Ruud Horlings, Dermatologist             

Dr Alison Bennett, GP

Dr Christine Maslowski, Retired GP

Dr Jim Stewart, Cardiologist

Dr Peter Ruygrok, Cardiologist

Dr Rachael Leigh,  General Physician

Dr Frank Kueppers Urologist

Dr James Davidson, Pathologist (retired)

Dr John Musgrove, GP (retired)

Dr Rowan Stephens, GP (retired)

Dr David Robins, GP/Anaesthetist/Obstetrician (retired)

Dr Tanya Quin, GP

Dr John Bonning

Dr Gary Payinda, Emergency Medicine Specialist

Dr Carol Shand, GP (retired)

Dr Barry Suckling, GP (retired)

Dr David Bivona, MD, FRNZCGP, MRCGP, DRCOG

Dr Alison Knowles MBChB Dip Obs FRNZCGP

Dr Janet Downs MA FRNZCGP DCH DRCOG GP

Dr E Jane MacDonald

Dr Peter Feltham, GP (retired)

Dr John Duncan FRNZCGP

Dr Stuart Tiller FRNZCGP. MPH.

Dr Erich Kusel FRNZCGP GP

Dr James Aubrey, GP (retired)

Dr David Levy, Consultant Emergency Medicine

Dr Rochelle Wilson, GP (retired)

Dr David Davidson, Obstetrics and Gynaecology Specialist

Dr Noel Nicholson, Otolaryngologist

 

Media contact: Frankie Bennett – 020 4131 7350

In a statement released today, 50 Doctors who support End of Life Choice, including Dr Lance O’Sullivan and Dame Margaret Sparrow, say the best end of life care will be achieved when Hospice and assisted dying work together.

 

They say “This World Hospice Day, we celebrate the extraordinary individuals providing Hospice and palliative care across New Zealand – without whom we wouldn’t have what has been rated the third best Hospice and palliative care worldwide. We join calls for more funding and resources for this precious part of our healthcare system.

 

“We also call for Hospice and assisted dying laws to work together to provide seamless and dignified end of life care.

 

“A small but vocal minority claim all Doctors oppose the End of Life Choice Act. That is not true.

 

“We represent the enormous number of healthcare professionals who support assisted dying, including the majority of nurses and a substantial number of doctors including GPs and specialists in geriatrics, palliative care and ethics. Hundreds of Doctors say they will support eligible people to access the End of Life Choice Act.

 

“We support End of Life Choice because even the best Hospice system in the world cannot alleviate all suffering. A recent report shows 2-5% of people suffer unbearably as they die. That’s around 250 Kiwis every year.

 

“New Zealand now has the opportunity to change this by voting YES for the End of Life Choice Act.

 

“This Act will provide an additional option for terminally ill adults to choose assisted dying if their suffering becomes unbearable; to die in a planned, peaceful way, surrounded by loved ones, conscious and able to say goodbye.

 

“Overseas, Hospice and assisted dying laws work together and complement one another. What’s more, countries with assisted dying laws see increased funding for palliative care. We look forward to collaborating with our Hospice colleagues here in New Zealand to achieve the same, so we can continue to provide exemplary care to our patients and remain a global leader in end of life care.

 

Your YES vote in the End of Life Choice referendum will make sure our Hospices remain some of the most wonderful places to die in the world.”

 

Signed:

 

Dr Libby Smales, Specialist Palliative Care Physician CNZM FAChPM, MBBS

Dr Lance O’Sullivan

Dame Margaret Sparrow, Sexual Health Physician (retired)

Dr Cindy Towns, Consultant Internal Medicine Physician and Geriatrician

Dr Stanley Koshy, GP

Dr Jack Havill ONZM, Intensive Care Medicine Specialist (retired)

Dr Miles Williams, Cardiologist

Dr Richard Luke, Cardiologist

Dr James Curtis, Respiratory Physician

Dr Nik Krawchenko, Medical Registrar

Dr Hamish Liggins, GP Registrar

Dr Malcolm Arnold, Gastroenterologist

Dr Mike Halstead, Medical Registrar

Dr Shannon McCarthy, Medical Registrar

Dr Alan Stanley, Neurologist

Dr Baneet Singh, Medical Registrar

Dr Kate Kerse, Medical Registrar

Dr Brad Sandleback, Emergency Medicine Consultant

Dr Grant Cave, Intensive Care Consultant

Dr Mariusz Wolbinski, Cardiologist

Dr Emma Jones Medical Registrar

Dr Ruud Horlings, Dermatologist             

Dr Alison Bennett, GP

Dr Christine Maslowski, Retired GP

Dr Jim Stewart, Cardiologist

Dr Peter Ruygrok, Cardiologist

Dr Rachael Leigh,  General Physician

Dr Frank Kueppers Urologist

Dr James Davidson, Pathologist (retired)

Dr John Musgrove, GP (retired)

Dr Rowan Stephens, GP (retired)

Dr David Robins, GP/Anaesthetist/Obstetrician (retired)

Dr Tanya Quin, GP

Dr John Bonning

Dr Gary Payinda, Emergency Medicine Specialist

Dr Carol Shand, GP (retired)

Dr Barry Suckling, GP (retired)

Dr David Bivona, MD, FRNZCGP, MRCGP, DRCOG

Dr Alison Knowles MBChB Dip Obs FRNZCGP

Dr Janet Downs MA FRNZCGP DCH DRCOG GP

Dr E Jane MacDonald

Dr Peter Feltham, GP (retired)

Dr John Duncan FRNZCGP

Dr Stuart Tiller FRNZCGP. MPH.

Dr Erich Kusel FRNZCGP GP

Dr James Aubrey, GP (retired)

Dr David Levy, Consultant Emergency Medicine

Dr Rochelle Wilson, GP (retired)

Dr David Davidson, Obstetrics and Gynaecology Specialist

Dr Noel Nicholson, Otolaryngologist

 

Yes for Compassion aims to ensure New Zealanders can cast informed yes votes in the End of Life Choice referendum on 17 October.

 

http://yesforcompassion.org.nz/

 

Ends. 

 

Notes:

Dr Libby Smales, a palliative care physician with more than two decades experience as former Director of Cranford Hospice and Yes for Compassion spokesperson, can provide comment.

 

Media contact: Jo de Joux – 021 245 6924

This piece first appeared in Women’s Weekly on 5 October 2020 and has been reproduced with Michele A’Court’s kind permission from her website: http://micheleacourt.com/dying-wish-nz-womans-weekly-column/

I have been a close witness to five deaths – two very special friends who died of cancer in the 1980s, and then family members in recent years, including my father who died in January 2017, and my mother who died in June last year.

I’ve also been present for several births – I was very involved in my daughter’s birth 27 years ago (I’m still tired when I think about it) and I was holding her hand when each of my grandchildren were born.

What I’ve learnt from those experiences is that the beginning and the end of life are similarly significant events. There’s nothing simple about arriving on the planet, or about leaving it and, no matter your role, being in the room when those things happen changes you forever. My mother, Donna, and I talked about it a lot over the years – how these twin events are the bookends of life.

We spend a lot of time planning for a birth – talking about it, preparing ourselves, writing a “birth plan”, doing everything we can to make it as healthy and comfortable as possible for the mother and baby. We will also intervene to make a birth happen days or weeks sooner than it might otherwise to make it safe and bearable, with the least trauma and suffering. My daughter, for example, was induced six weeks early because getting her out of the womb and into the world was better than letting nature take its course.

It seems right to think about death the same way – talk about it, make a plan, be prepared to intervene to make it as free of pain and as full of kindness possible.

When my mother, Donna, was given a terminal diagnosis in 2018, she said with her typical courage and clarity that she was not afraid of dying, but she was afraid of pain. We knew from other deaths – particularly my father’s the year before – that no amount of palliative care is a guarantee there won’t be suffering. We have known friends and family who have taken their death into their own hands by refusing food and water because they felt they had no other choice. Donna said she didn’t want that. She wanted a final chapter that reflected the rest of her story which was a life lived with elegance and dignity.

Our conversation about end-of-life choice had started years before, and we owe a debt of gratitude to Lecretia Seales for getting us talking so openly. In 2015, Lecretia mounted a legal challenge seeking the right for a doctor to help her die without being at risk of criminal prosecution. I think everyone’s heart broke a little when the courts didn’t allow this, but Lecretia did a remarkable thing in allowing her death to be part of our national conversation. I will be thinking of her as well as my mother when I vote “Yes” on the End of Life Choice referendum next month.

Where you put your tick will depend largely on how robust you think the safeguards are. There are doctors and palliative care specialists in both camps, plus people with terminal diagnoses or vulnerabilities because of race, disability and socio-economics who do and don’t support it.

In a nutshell, you must be terminally ill with less than six months to live and experiencing “unbearable suffering” that cannot be relieved to even begin to be eligible. The law is intended to put the patient at the centre – patient-led and with the option to change your mind at any time. Very few of us – perhaps only five percent – will ever need this law or be able to use it, so it’s about giving those people a choice. The government’s website will be your most trustworthy source for clear and unbiased information: https://www.referendums.govt.nz/endoflifechoice/index.html

We did manage to give Donna what she would call “a good death”, though we could never be certain and there were moments when it was a close run thing. There was a tension at times between what health professionals needed to be seen to do in terms of medications and protocols, and what the patient would choose to be eased off the planet. Donna would have had a different death if she hadn’t had a constant advocate, and not everyone can arrange that.

We need to talk about death more – especially the good deaths, and what it is that makes them good. Think of the people you love, and what you would want their last days to be like. Most of all, think of the things you most like about your life – being independent, making your own choices, living with integrity and dignity, being able to leave the party when you have had enough – and how good it would be to have a final chapter that reflects the best of your life’s story.

Actor Robyn Malcolm supports End of Life Choice, urges Kiwis to choose “choice, love and compassion”.

 

Actor Robyn Malcolm has joined the Yes for Compassion campaign urging a ‘yes’ vote in the End of Life Choice referendum.

 

In a video released today, the prolific actor and activist, awarded the New Zealand Order of Merit in 2019, says “to me, the End of Life Choice Act is about choice, love and compassion. That’s why I’m supporting it.”

 

“In a fair, civilised, democratic world we have a choice about pretty much every aspect about how we live. Surely, that should extend to how we die?

 

“I trust we will put all the checks and balances in place to make it safe so that those who want to die, like my friend – their way, with the people they love, able to leave this world in a conscious state of love, connection and peace – can do that.”

 

She also shares this heartbreaking message from her friend who is terminally ill with kidney disease: “Now I am entering into an end of life process that will take a long time. Four months or so, where they know I will die an agonising death of either extreme breathlessness or, at best, full cardiac arrest…I would much rather enter a clinic on my chosen day, lie down, take the medication, have my darling husband around me with my dogs at my feet and be allowed to die with dignity.”

 

Robyn Malcolm warns of the “scaremongering and hysteria” by opponents of assisted dying and suggests Kiwis go to the government website to get the facts.

 

“Arm yourselves with the facts and go vote,” she says. “It’s really important that you do. This is a big choice this country has to make.”

 

Yes for Compassion aims to ensure New Zealanders can cast informed yes votes in the End of Life Choice referendum on 17 October.

 

http://yesforcompassion.org.nz/

 

Ends. 

 

Notes:

Watch Robyn’s video in full here: https://www.youtube.com/watch?v=DNQdvCxTkQ8&feature=youtu.be

 

https://www.referendums.govt.nz/

 

Media contact: Jo de Joux – 021 245 6924

Yes for Compassion’s television ad, which premieres tonight, features Hawkes Bay widow Heather Gregory whose dying husband Richard was suffering so badly from a slow, agonizing death that he ended his own life.  

 

Yes for Compassion is campaigning to ensure New Zealanders can cast an informed ‘yes’ vote in the 2020 End of Life Choice referendum. 

 

This story highlights just how cruel the status quo is and urges New Zealanders to give another, more compassionate choice to terminally ill adults suffering unbearably as they die. 

 

Richard died in August 2014 aged 58, following a ten-year battle with cancer. He left behind Heather and their five children.

 

“Richard didn’t want to die. He desperately wanted to get better. But like many in his situation, when he realised all he had left was suffering, he did the only thing he could to escape it. He died earlier than he should have in a lonely, violent way. The note he left said he was frightened,” says Heather. 

 

“If the End of Life Choice Act was law, Richard would never have had to go through that trauma. He would have had a compassionate death with me and our children beside him. Instead, my children’s final image of their father isn’t one I would wish on anyone.”

 

Yes for Compassion spokesperson and former Director of Cranford Hospice Dr Libby Smales says “the status quo forces a small number of terminally ill people whose suffering cannot be controlled by palliative care, to choose between suffering unbearably, ending their lives by stopping eating and drinking or terminal sedation, or ending their lives alone and without speaking to their families.”

 

Sadly, situations like Richard’s are not uncommon. New Zealand’s latest suicide statistics show as many as 52 suicides in the past year were from people with terminal illness – effectively one terminally ill person every week taking their own life. 

 

“I know hospice/palliative care is enough for many of us most of the time, but sadly not always or for all of us. This reality was recognised by both sides of the Lecretia Seales’ court case,” says Dr Smales. 

 

“Internationally, assisted dying and good hospice/palliative care can and do work together – for the good of patients and families. Countries where assisted dying has been legalised generally have better hospice/palliative care. Most of those who access the legislation are already accessing hospice/palliative care. A rare example of a win-win.”

 

Ends.

 

Notes

 

Yes for Compassion’s television ad is available here: https://www.youtube.com/watch?v=snX2YirOzM8

 

The latest suicide stats are available here: https://coronialservices.justice.govt.nz/assets/Documents/Publications/Chief-Coroner-Suicide-Stats-2020-Media-Release.pdf

 

Information on the Oregon experience is available here:

https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/ar-index.aspx

 

Media contact: Jo de Joux – 021 245 6924

Sitting MP, Maggie Barry – a vociferous opponent of the End of Life Choice Act – has misled voters in a column published yesterday.  

 

In her column, Barry claims “if a patient asks a doctor about assisted dying, the GP is explicitly prohibited, at risk of prosecution, to offer counselling and treatments. They are required instead to advise the patient they are not obliged to talk to anyone in their family and to refer them to a list of 12 doctors – appointed by the Ministry of Health – who are supporters of euthanasia, and ‘willing to act’”. 

 

As a member of the Justice Committee that considered the End of Life Choice Act, Maggie Barry knows – or should know – this information is false. 

 

There is nothing in the End of Life Choice Act that prohibits a GP from offering counselling and treatments to a patient. In fact, the Act requires a GP to make sure the person understands their prognosis and all their other options for end-of-life care, including palliative care. A GP must encourage a patient to talk about their wish with others, including people such as counsellors and family. A GP is also required to talk with other health practitioners who are in contact with the patient. 

 

Contrary to what Barry states, a GP is at risk of prosecution if these and numerous other requirements are not met.  

 

There is no such thing as a list of 12 doctors appointed by the Ministry of Health.  

 

Maggie Barry also talks extensively about the elderly and those with a disability being vulnerable under this Act. She fails to mention that advanced age and disability alone can never make someone eligible for End of Life Choice. 

 

In grossly misrepresenting the content of the Act, it begs the question – is Maggie Barry so opposed to the law she is willing to ignore the facts to further her position or has she not bothered to learn what the law actually says? Either way, making false statements on an important referendum issue is extremely concerning in any democracy and not what we should expect from a MP in New Zealand.   

 

We would urge Maggie Barry and anyone else concerned or confused by her statements to visit referendums.govt.nz to get the facts. 

 

Ends.

 

Notes

The column referred to in this statement can be found here: https://www.stuff.co.nz/opinion/300117427/the-price-of-the-euthanasia-law-is-too-high

 

http://yesforcompassion.org.nz/

 

Media contact: Jo de Joux – 021 245 6924