The following is published with the authorisation of Theresa McCool.  Warning: A photo here is graphic and disturbing. Theresa is sharing this story in the hope that it will assist in the passing of VAD legislation in the other states and territories of Australia, and not just be limited to Victoria.

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Theresa McCool
Toronto, Ontario
Canada    22 June 2019

My name is Theresa McCool.  I live in Canada where MAID (Medical Assistance In Dying) is now legalised. It was not legalised when my Mom died in 2015.

I believe Voluntary Assisted Dying, as it is known in Australia, should be legalised in every country in the world. We are all individuals, we all lead our lives in different ways, we choose different partners, different career paths, choose to have children or not have children, become religious, choose not to be religious. So, when it comes to the point where we do not have any choice, when we can no longer have control over our lives due to the debilitating nature of a terminal illness or an incurable illness, when quality of life disappears and we are left with pain and suffering and a loss of quality of life, then we deserve to have the right to request for assistance to end that pain and suffering.

I share with you the story of my Mom and what happens when the country in which you live does not have legislation and what happens when you find yourself in a Catholic hospital where the hospital’s policies and procedures, based on religious faith, override your basic human rights, deny you the opportunity to end suffering and leave your loved ones and their families, forever traumatised by the circumstances of their suffering and their deaths.

Before my Mom became ill, I worked as a volunteer with VON (Victorian Order of Nurses) for ten years, visiting clients with terminal illnesses, clients who had had surgeries, were at the end of life, receiving Palliative Care, and whose families also needed bereavement support. Many of my “assignments” would last from three weeks to a year. VON relied on Volunteers to help visit clients, providing some relief for the families/carers for a few hours. I felt honoured to give back to the community in this way and it was extremely rewarding. It was during this time that I became an advocate for Medical Assistance In Dying, supporting the rights of individuals to request medical assistance when at the end stage of life and suffering from illnesses which robbed individuals of their quality of life and meant untold suffering. Many of the clients I supported through my work would beg for their life to end because of their pain and suffering. Families were left traumatised, exhausted and many became ill themselves after the responsibility of caring for their loved ones and after their loved ones had died.

My Mom was Genevieve. She was diagnosed with basal cell carcinoma in her shoulder. In May 2015 She became very ill with a blood infection that went throughout her body and she was put on an aggressive treatment of antibiotics for seven weeks. She hadn’t wanted to go to hospital when she became sick and I had insisted that she must go. I now wish I had not have taken her. She would have died a much more peaceful death than she did.

She was told at the hospital (a Catholic Hospital) that there was no guarantee that she would survive the treatment and life expectancy was given as anywhere between 6 hours, 6 days, 6 weeks, 6 months or 6 years.

She ended up surviving 15 weeks and 6 days (103 days) and I will never know how she managed to last that long with all that she had to endure.

Whilst she was in hospital she had many doctors who saw her, who were trying to decide how they could “cure” her – their words, not mine. She was in a Catholic hospital at this time.

During the many tests she was to go through, they also discovered an aggressive cancerous tumour in her back that was growing rapidly.

Medical Assistance In Dying, (MAID) in my country Canada, was not in place at that time – in 2015. Even had it been legalised, because her death, according to the doctors in the catholic hospital, was deemed to be “not foreseeable”, and they believed the tumour could be removed, she would not have met the criteria.

The doctors in the Catholic hospital decided they wanted to give Mom aggressive chemotherapy and radiation treatment. They wanted to operate and remove her right shoulder and arm. This would have meant she would lose half of her torso and her arm. They were also planning to cut the skin off her buttocks to perform a skin graft where her missing shoulder and arm would have been – and with no guarantees that she would actually survive the surgery and treatments.

Mom said she would agree to the aggressive procedures on one condition – that they would actually euthanise her during the surgery – as she did not want to wake up and have to deal and live without her right shoulder and arm. Of course, the doctors refused this request and my Mom refused to go through with the aggressive chemotherapy, radiation treatment and the surgery.

The doctors said that there was nothing more they could do for her and threw in the towel. Mom asked the doctors, “If there is nothing more that you can do for me, what is the point in me sticking around?” The doctors could not answer her and walked away.

Whilst Mom was in hospital she actually had a heart attack. The doctors wanted to insert a wire into her artery and carry out heart surgery and Mom refused. Imagine what my Mom’s quality of life would have been like for her, had she agreed to have:

1. Right shoulder and arm sawed off and left with half a torso

2. Skin-grafts from her buttocks and the pain involved in that process

3. Whilst dealing with all of her pain, a wire inserted into her arteries

4. A large cut through her chest

5. A sawed chest bone

6. A cut in her heart

What would her quality of life have been?

The cancerous mass found in her spine was horrendous. She was in so much pain. She was given pain medication. Unfortunately, the pain relief was not enough and she would have to wait until the next “scheduled” dosage.

She would ask, “Why are you refusing to give me more pain medication?” The doctor’s response was, “We don’t want you to become addicted to the drugs and if we give you more before the time is up it would kill you”. She responded, “I am dying anyway so what difference does it make? Is it better for me to suffer till I take my last breath?”

The doctor’s response, “It’s against the law, I could lose my job” and walked away. This was in a Catholic hospital – they are supposed to be compassionate and caring. The doctors refused to give my Mom more pain relief as she already had the “allowed” legal dosage for the pain she was experiencing.

There was an occasion where I spoke to the doctor – he knew Mom was in extreme pain. His hands were tied too, because of the “Catholic” policy. He had to get authorization to increase Mom’s medication to relieve her pain, but, unfortunately, she was not able to have any further pain relief because she had what they deemed to be the “legal” amount. Due to it being the weekend, Mom had to wait until the Monday for approval to have the medication increased past the legal amount, but she actually died waiting for it.

When the doctors told my Mom there was nothing more they could do for her, she laid in a hospital bed in pain and suffered for 90 days under “OHIP” coverage. That was the maximum time she was allowed to stay at the hospital before she had to start to pay herself.

Whilst Mom was waiting to die at the hospital, she was placed on a waiting list for a Nursing Home in Toronto and she had to wait for 200 people to die, for a bed. Instead she died waiting for that bed.

My Mom was transferred to a Transitional bed low income, at 1st Place Assisted Living, for three days. Mom suffered another heart attack and ended up going to Hamilton General – a 2nd hospital – within 15 minutes of arriving there, she was placed in palliative care for four days. The Palliative Care doctors asked Mom what she wanted and what her plans were.

Mom said she had wanted to be euthanised but the doctors at St. Joseph’s hospital had obviously refused her request. She wanted to be with her family who live in Toronto, St. Joseph’s Hospital had refused to transfer her to Toronto.

It was arranged for Mom to be transferred to a 3rd hospital, St. Michael’s in Toronto, and that is where she died 5 days later.

I spent 103 days in hospitals watching my Mom suffer, as she begged to be euthanised. Do you know how that feels? It was very hard to have to watch her be in pain.

Her last words were “Pain – Pain” and again she was refused pain medication because she had reached the “legal dosage” that the doctor could give.

When she took her last breath, her eyes bugged out and she cried out in pain. Her back ripped open to her spine, from the cancerous mass in her back. This is the image that never leaves my mind.

Instead of dying peacefully in her sleep, free from pain, she died in agony. Mom was seventy-eight – she had hoped Assisted Dying would become legal. She died waiting for it.

The Decision Makers need to understand how end of life actually is for many. How would they want to die? Would they like to starve to death, with organs starting to shut down, when the stomach stops digesting? How about suffocation? Lungs shutting down.

That was the last five days of my Mom’s life, she couldn’t eat or drink anymore and had difficulty breathing. I was told, “Only God can take her”.

So my poor Mom, in agony, suffering, was forced to wait for the Decision Maker’s “God” to kill her. She suffered to the bitter end and she died her worst nightmare.

I thought I had done the right thing by taking her to hospital on 20 May, 2015. Had I not taken her to the hospital – when she didn’t want to go – she would have died in her sleep on 23 May, 2015, from blood poisoning, rather than 103 days later in agonizing pain on 31 August 2015.

My mum did not die with dignity. She did not live her last few months with dignity. She did not die “comfortable”. She died in pain and suffered for months before she did die. She died this way because of a lack of legislation at the time and also the fact she was in a hospital environment governed by Catholic Policy and Catholic Faith.

My mum died on 31 August 2015.

I continue to remain traumatised by my Mom’s suffering and death – 4 years on.

In 2018 I brought my Mom’s story to the attention of another doctor. Medical Assistance In Dying was, of course, legalised at this point. The doctor replied:
“Ms McCool,
I read your Email several times and am perplexed how a Canadian physician in the twenty first century could possibly believe there is a maximum allowable narcotic dose for intractable cancer pain. There is no such thing. The dose that makes the pain go away is the appropriate dose. Anyone trained in the Canadian medical system knows this and I’m so sorry your doctor(s) failed you and your mother during this critical time of need.
You don’t mention if she was specifically turned down by the MAID program but where I have participated, she should have qualified. Now, to be fair, I haven’t read any medical consults on her diagnosis nor the prognosis or treatment options offered by the specialists. From your letter it certainly looks like the explanations given to you and your mother were inadequate. As a family physician of 26 years I feel that we as a profession have let you down. My opinion of the MAID program is that this is exactly what we are trying to prevent, bad deaths. I hope this has been a little helpful.
Sid Harrison MD CCFP FCFP”

I cannot emphasise enough how much legislation is needed to assist those who find themselves in the same situation as those I cared for, as a volunteer, and my own mother whose suffering is never far from my mind.

Theresa McCool

Toronto, Ontario Canada

The full interview, with my answers to Scott’s questions, can be found here > https://www.canadianatheist.com/2019/01/wood-jacobsen/

I hope readers find the article of interest.

It is encouraging to have international recognition of our group and this Christian stance we are taking to give the additional option of compassionate choice in dying in Australia.

Ian Wood

Spokesperson and National Co-ordinator.

A Christian response to the Archbishop from Ian Wood.

I urge the Archbishop and his listeners on Cradio  to take the time to view two contrasting deaths, from the many I have on file.

The assisted death of John Shields in Canada. “At his own wake” https://www.nytimes.com/2017/05/25/world/canada/euthanasia-bill-john-shields-death.html

A fascinating depiction of how John, raised in a Catholic family, was ordained as a priest, but left the Church after being barred from preaching when he challenged the church opposition to birth control. Read about John’s life as a social worker, his diagnosis with terminal neuropathy and then his advocacy for Medical Assistance in Dying, and using that choice at the end.

John Shields says goodbye to friends and family at his own ‘Irish wake’

Please compare John’s death with that of Flora Lormier from Multiple Sclerosis.

https://www.mirror.co.uk/news/uk-news/help-die-family-release-heartbreaking-9614060#ICID=sharebar_facebook

Flora became paralysed from the neck down as her MS progressed.  Her daughter Tracey Taylor posted these photos on a Facebook page and in media such as the Mirror, UK, in the hope it would alert MPs to the futile horrific suffering endured by some people as they die.

Warning: disturbing images…..

Flora before her illness.

“She was like a prisoner of war in a concentration camp”

Yes, Archbishop, as you state, there have been advances in palliative care, but their own data clearly shows that as many as 1 in 6 patients in the terminal stage of their terminal illness report moderate to severe distress from pain and breathing problems. In jurisdictions with Assisted Dying choice, two facts become clear – 1) palliative care improves and 2) assisted dying choice is not an either/or with palliative care but simply another compassionate end-of-life option.

A terminal patient is, by definition, going to die. Voluntary Assisted Dying is not a choice between life and death, but gives an alternative way of dying for the patient to consider. Those who view voluntary euthanasia and assisted dying as against their beliefs simply do not go through the rigorous process of requesting this assistance!

[Voluntary] euthanasia or an assisted death does not deny the person the opportunity to say farewell, as the Archbishop suggests. If anything the opposite is correct – knowing when you are to have that assistance gives the time to say goodbye to friends, make amends for family problems or disagreements, etc – time that may not be possible if you are hooked up to machines as you die, or in that last resort of palliative care when all else fails, put into a coma with terminal sedation until you dehydrate or starve to death!

The real problem arises when various church hierarchy use their adherence to church doctrine and dogma to override and deny the majority of Australian Christians THEIR CHOICE to follow what they believe is a true final act of love and compassion.

Desmond Tutu, renowned Archbishop Emeritus of Capetown, advocates this choice here >  https://christiansforvad.org.au/archbishop-desmond-tutu-gives-his-blessing-to-the-voluntary-assisted-dying-campaign-in-australia/#more-371

I am very happy to discuss this issue further with the Archbishop and folk on Cradio, Tasmania, but for now leave them with the words of Governor Brown of California. Gov. Brown, who had trained as a Jesuit and is a committed Catholic, and had this to say when signing the California Voluntary Assisted Dying legislation. “In the end, I was left to reflect on what I would want in the face of my own death.  I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Ian Wood

National Coordinator and Spokesperson

Christians Supporting Choice for Voluntary Euthanasia

Ann’s letter appears in the Guernsey Post, UK, where Guernsey is considering a vote on assisted dying. My sincere thanks, Ann, for writing this. Ian Wood.

 ‘I am convinced that physician-assisted dying can be, and is, practised responsibly’, says Ann Jackson, Oregon USA

MY NAME is Ann Jackson. In June 2008, after 20 years, I retired as executive director and chief executive officer of the Oregon Hospice Association, during which time I was involved in the public debates around assisted dying. I remain involved now, as an independent consultant about end-of-life options.
It is my understanding that Oregon’s assisted dying law has become a matter of debate in Guernsey ahead of a vote in May on whether to legislate for assisted dying on your island. When I was made aware of a recent letter published in the Guernsey Press (9 April) entitled ‘Oregon assisted-suicide model too good to be true’ I felt compelled to offer my professional experiences and put right misleading claims made by the author, Tony Meadowcroft. I hope that this letter also addresses concerns of Catherine Hall (Open Lines, 13 April).

There are various reasons people may oppose assisted dying but I do believe that the debate, wherever it occurs, should be based on evidence and facts.

As chief executive of the OHA, I acted as its primary spokesperson on physician-assisted dying before and after the Oregon Death with Dignity Act was implemented. The ODDA was introduced as a voter initiative (referendum) in Oregon – I voted in opposition to the Act. I have subsequently changed my mind and fully support the Act. The OHA has also subsequently dropped its opposition.

Today I am convinced that physician-assisted dying can be, and is, practised responsibly in Oregon, and that the ODDA is a very well-crafted law. I feel it is important to correct some of the misrepresentations made about the consequences of assisted dying in Oregon:

1. There has been a profound shift in attitudes towards terminally ill patients in Oregon.

I will concede on just one of Mr Meadowcroft’s points. There has indeed been profound change, but for the better. The ODDA has facilitated discussion of important issues, allowing more open and honest conversations between dying patients and their physicians and more careful evaluation of all end-of-life options. These discussions more often lead to reassurance of the dying patient than an eventual direct request for life-ending medication.

2. The safeguards built into Oregon’s physician-assisted dying law are followed to the letter.

The law has remained unchanged over the past 20 years and is only available to dying people of sound mind — these criteria, and the safeguards associated with them, have not broadened since the law was enacted. Fears of a ‘slippery slope’ have not come to fruition and there are no proven cases of coercion of individuals to have an assisted death. The risks of patients being murdered or coerced into ingesting life-ending medication were far greater prior to the implementation of a transparent system with upfront safeguards and effective regulation.

3. The overwhelming majority of terminally ill patients who ingest life-ending medication at a time and place of their choosing die peacefully, without complications.

More context must be given to Mr Meadowcroft’s broad statement that there are complications with physician-assisted dying. There have been no reported complications in over 98% of cases of people dying under the ODDA. For others, complications are associated with symptoms that are commonplace among people at the very end of life, such as regurgitation. Furthermore, we cannot ignore the significant likelihood that many people who have made use of the ODDA would have experienced very distressing symptoms and complications if they had no choice but to endure their suffering.

4. There is rigorous monitoring and data is made available publicly every year.

Physician-assisted dying is monitored and controlled by stringent criteria and processes, mandatory state reporting by the medical team, and medical board oversight. The justice department also has the power to investigate should concerns ever arise. Assisting a suicide outside the provisions of the ODDA is an unlawful act and subject to criminal penalties.

5. The Oregon Medical Association is neutral on the issue of physician-assisted dying.

Mr Meadowcroft’s assertion about the Oregon Medical Association is false. The Oregon Nurses Association is also neutral, and both organisations support their members to participate in assisted dying in line with their individual values. The Oregon Hospice and Palliative Care Association (formerly OHA) supports the rights of terminally ill Oregonians to choose any and all legal end of life options, as does the American Public Health Association. As of 2017, 57% of US physicians say they believe medical aid-in-dying should be available to terminally ill people.

6. Hospice and palliative care in Oregon is consistently rated among the best in the USA and assisted dying has not had a negative impact.

Oregon is within the top quartile of overall hospice use across the US. I have met with front-line hospice workers regularly over the years to discuss their experiences and whether they supported or opposed physician-assisted dying or the ODDA. There was unanimous agreement that conversations about death and dying improved significantly.

Ninety per cent of those who use the ODDA are enrolled in hospice, which is the gold standard for pain and symptom management. OHA recommended immediately on passage of the ODDA that persons considering a request for a prescription be referred to hospice. Oregon’s hospices were adamant that people should not choose assisted dying because they were in pain.

No hospice in Oregon denies a patient access to their care because they intend to use the ODDA.

No hospice in Oregon will turn away a dying patient because they cannot afford to pay. There is no excuse in Oregon for anyone to die in pain and suffering.

7. Terminally ill patients requesting physician-assisted dying do so for multiple and complex reasons.

Through my experience of Oregon’s law, I came to realise that it was cavalier of me to believe that hospice and palliative care professionals could indeed meet all the needs of people who were dying, or that some needs were less worthy than others, such as the need to manage the circumstances of one’s death. It is true that the vast majority of people who have an assisted death in Oregon cite the loss of their autonomy and/or being less able to engage in activities that make life enjoyable. But suffering is a deeply personal and subjective phenomenon.

Mr Meadowcroft suggests that unless suffering has a physical basis it is somehow unworthy. This is not an accepted viewpoint for anyone who has experience with people who are dealing with a terminal illness.

Fewer persons cite inadequate pain control or concern about future pain as a reason for wanting a prescription. Ninety per cent are enrolled in hospice. Their pain and other symptoms should be managed.

Palliative sedation is an effective way to ease suffering of those whose symptoms cannot be brought under control. However, being sedated to a point of coma is not an acceptable option for most persons whose primary concerns are about losing autonomy, their quality of life, and dignity – as they define dignity.

If patients are not experiencing actual untreatable pain, Mr Meadowcroft suggests that many cases of assisted dying are motivated by a desire not to become a burden. Being a burden is another reason given for using the ODDA. But no one in Oregon can have a prescription simply because they do not want to be a burden. Research confirms that such concerns are held by most dying people, regardless of whether they use, or do not use, assisted dying.

Financial implications of treatment are the least important reasons given for using a prescription under provisions of the ODDA. Nearly all persons who have used the Law have had medical insurance. Hospice is a covered service of private health plans and Medicare. Some private health plans cover the ODDA. The Oregon Health Plan, Oregon’s Medicaid programme for those who lack financial resources, covers treatment for life-threatening illnesses, hospice, and the ODDA. The Oregon Health Plan, however, does not cover drugs or treatments that are considered ‘futile’, or to have less than a five per cent chance of a five-year survival. This should allay Ms Hall’s concern.

8. Mr Meadowcroft’s claim that some patients who receive a prescription for life-ending medication outlive their prognosis misses the point.

Over a third of the terminally ill people who are eventually granted a prescription for life-ending medication do not use it – for many, it is simply ‘emotional insurance’.

This reassurance and peace of mind can result in a general improvement in their wellbeing, meaning some go on to outlive their original prognosis. Some may die during the waiting period, perhaps having been given too much time.

In the majority of cases a predicted life expectancy of six months or less is reasonable, but ultimately Oregon’s law is for dying people to retain complete control over decisions they make about their deaths. To clarify, dying people who want this choice for themselves do not want to die, they want to exercise control over an imminent and inevitable death. Using the ODDA is always a last resort.

Therefore the idea that someone outliving their prognosis is a bad thing or suggests the law isn’t working is, frankly, missing the point.

I hope this letter is helpful in giving a more accurate picture of what really happens in Oregon. I know that your goal is to inform your readers. Mine is to offer open and honest information based on data and facts. Good end-of-life decision making requires good information.

ANN JACKSON, MBA,

Consulting,

3112 Northeast 17 Avenue,  Portland,   Oregon 97212,

www.ann-jackson.com

Read more at https://guernseypress.com/news/voices/readers-letters/2018/04/17/i-am-convinced-that-physician-assisted-dying-can-be-and-is-practised-responsibly/#hDDP5YmikphPU3YP.99

Brad Hazzard
Minister for Health

Dear Mr Hazzard

Congratulations on your appointment as Health Minister for NSW.  It is encouraging that in the Daily Telegraph 6.2.2017 you are reported as recognising that more needs to be done for health matters in regional NSW.

You also stated that: “……often people depart this life in hospital…….”.  This is certainly true, as NSW Prof Ken Hillman has noted: “Up to 70% of people now die in acute hospitals, surrounded by well meaning strangers, inflicting all that medicine has to offer; often resulting in a painful, distressing and degrading end to their life.”

Research indicates that in fact 70 to 80% of terminal patients would prefer to die at home.  To enable this, adequately trained people are needed, plus the funding directed towards this service.  I imagine it could well be ‘cost effective’ compared with dying in an Intensive Care Unit or similar?  Ref: http://www.abc.net.au/news/2015-10-25/hundreds-access-program-of-end-of-life-care-at-home/6883162

Another issue relating to the terminally ill also attracts a similar level of 70 to 80% public support in NSW.  That of assisted dying choice for the terminally or hopelessly ill who are facing futile suffering.

A cross party group of NSW MPs is currently working on a draft Bill to enable this choice, and I respectfully urge you to please have positive input into this much needed legislation, with the aim of ensuring that the final draft is such that you as Minister for Health could publicly support and vote to pass it.  It does need to have a balance enabling access for the patients who wish to use it, and safeguards to protect from possible abuse.

There is now extensive data from other jurisdictions that proves this balance is possible.
– A wide ranging, in depth, Victorian Parliament Inquiry into End of Life Choices made 49 recommendations including improvements to palliative care AND that the Victorian Parliament enact legislation to enable medically assisted dying choice
– A significant number of Australian nursing groups (who are at the ‘coalface’ of dying), support having this legal choice.
– The whole of Canada has assisted dying choice, albeit under limited conditions, following a Supreme Court decision and a number of inquiries that all found in favour of this choice. Notably, this new law has the endorsement of the Canadian Medical Association.
– Legislation in Oregon USA has been operating successfully for nearly 20 years, as indicated by the Annual Reports and other studies.

Other points supporting legislation include –
– There are many instances of horrific futile suffering endured by a dying patient where even the best palliative care cannot adequately control the symptoms.
– Palliative Care own data (PCOC) shows 1 in 6 patients in the terminal phase of their terminal illness report moderate to severe distress from pain.
– Access to assisted dying choice is palliative in its own right. Patients given access frequently live longer and have a better end quality of life than those who do not request assistance.
– Overwhelming public support, including perhaps to your surprise, a majority of Christians.
– Having this choice puts the patient first.
– It provides a compassionate and logical alternative to the present ‘grey area’ of terminal sedation.

I would greatly appreciate the opportunity to discuss this issue face to face with you and provide additional information in support of assisted dying choice.
Yours sincerely

Ian Wood
National Coordinator
Christians Supporting Choice for Voluntary Euthanasia
Villa 1, Hampton Mews
4 Wills Place
Mittagong  NSW  2575
Website www.Christiansforve.org.au

Copy of this email also sent by post to Premier Berejiklian.

http://www.dwdv.org.au/news/vcat-rules-in-favour-of-dr-rodney-syme

Presbyterian Church of Aotearoa New Zealand :: Remuera – Newmarket

Physician Assisted Dying

Dear Mr Andrews

Marshall Perron, former Chief Minister of the Northern Territory, wrote to you recently about the diary of the tragic last weeks of John Baylis, who died from Motor Neurone Disease.

As Mr Perron so clearly and succinctly pointed out, the fact that John Baylis could not access the assisted death he so rationally requested, was due to your action in instigating the overturning of the Rights of the Terminally Ill Act.

What Mr Perron did not say, is that you do still have the opportunity to go some way in atoning for what a substantial majority of Christians believe was your regrettable lack of compassion for the terminally ill, as they die with suffering that even the best palliative care cannot relieve.

Eighteen years have now passed since Oregon State, USA enacted their Death With Dignity Act in 1997. Since then three other states enacted similar legislation – Washington State. Vermont and California. Montana and New Mexico also have the right by a court decision In Europe, The Netherlands, Belgium and Luxembourg have had choice since 2002, in addition to Switzerland.

There is now a mass of data available, based on the experience in these countries.
Essentially, we can now state that
– Laws enabling choice both for medically assisted dying and voluntary euthanasia can and do work very satisfactorily.
– Many people given the ‘green light’ for an assisted death actually live longer than those who do not request assistance. It is palliative in its own right.
– The numbers using an assisted death are very few, but the knowledge that it is available gives comfort to many.
– The concerns that the elderly, the ‘alleged’ vulnerable, and those with disabilities might be subject to coercion are unsupported by the evidence.

What we can now state in Australia is that palliative care’s own data, (PCOC) collated from over 90 specialist PC services, shows that in the “terminal phase” one in five patients reported suffering moderate to severe distress from pain, one in five patients reported suffering moderate to severe distress from breathlessness and one in twelve reported distress from bowel problems. It is these patients who need choice in dying.

The last resort in palliative care, when all else fails, is to put the person into a medically induced coma, known as terminal sedation, where they gradually starve or dehydrate to death, a circumstance that family and the nursing and medical staff can find extremely distressing to watch.

Terminal sedation is accepted by the medical profession and the Catholic Church as an appropriate and religiously ethical last resort, as the stated intention is ‘to relieve suffering’. No reporting is involved, and the patient need not even be asked.

Yet if the dying patient requested, “Rather than starve me to death in a coma, with the trauma of having my family watch this slow death, please give me the next few days medication in a single dose”, this would be illegal.

I ask you, as a Christian, why it is morally acceptable that the slow death procedure from starvation should be within the law, but not the other alternative?
Although not widely known, there has been support for assisted dying/voluntary euthanasia from Christian theologians since at least the 1930s.
The Right Rev. Dr W. Inge, former Dean of St Paul’s Cathedral, London, when founding the British Voluntary Euthanasia Legalisation Society in 1935, said, “It is not contrary to Christian principles.”

Among the founders of the American Euthanasia Society, in 1945, were prominent Christians such as the New York divines Henry Sloan Coffin, the President of Union Seminary, and Harry Emerson Fosdick, the minister of Baptist Riverside Church.

Rev. Trevor Bensch, a co-founder of Christians Supporting Choice for VE, former hospital chaplain and Minister of North Adelaide Baptist Church, South Australia, says: “My call for legal Voluntary Euthanasia is compassionate and thoroughly consistent with the teachings of Jesus.”

Highly respected Catholic theologian, Prof. Hans Kung, states: “As a Christian and a theologian I am convinced that the all-merciful God, who has given men and women freedom and responsibility for their lives, has also left to dying people the responsibility for making a conscientious decision about the manner and time of their deaths. This is a responsibility which neither the state or the church, neither a theologian or a doctor, can take away”

More recently, Lord Carey former Archbishop of Canterbury and head of the world wide Anglican church, speaking in support of the Falconer Assisted Dying Bill before the House of Lords, UK, said: it would not be “anti-Christian” to ensure that terminally ill patients avoid “unbearable” pain, and “One of the key themes of the gospels is love for our fellow human beings … Today we face a terrible paradox. In strictly observing accepted teaching about the sanctity of life, the church could actually be sanctioning anguish and pain – the very opposite of the Christian message.”

Former Archbishop Desmond Tutu, one of the most revered religious leaders, also speaking in support of the Falconer Bill says: “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying. I revere the sanctity of life – but not at any cost.”

Mr Andrews, the evidence in support of CHOICE for assisted dying is overwhelming.
I sincerely urge that you study this evidence and the attachments here.

Do you have the courage and compassion to change your position, as did Prof. Tallis? (see attachment)

Would you be willing to vote to give the Northern Territory back their right to make their own laws? Even if you would not wish that choice for yourself would you be willing to endorse the right of others to choose, should the proposed Senator di Natale Dying with Dignity Bill come up for debate?

In conclusion, I repeat the fact that on Monday 5 Oct 2015, the California Governor signed an End of Life Bill, giving 38 million Americans the right to choose an assisted death. I note that Governor Brown received support for passing the California Bill from Archbishop Desmond Tutu.

Significantly Governor Brown, who actually had the power to Veto this Bill, is a committed Catholic and previously had training as a Jesuit priest. His stated reasons for approving the Bill included –
“In the end, I was left to reflect on what I would want in the face of my own death. I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Yours sincerely

Ian Wood
National Co-ordinator
Christians Supporting Choice for Voluntary Euthanasia
Mittagong NSW

Attachments
Prof Tallis, Why I changed my mind on assisted dying
RIP Keith Smith
Catholic Dr Olvera supports Aid in Dying
Quebec Report, some conclusions
Booklet – I want the choice of an assisted death
Anglican Canon Rosie Harper supporting the assisted death of her Uncle in Switzerland
Recommended reading:
Is there a Christian Case for Assisted Dying? Yes. by Prof. Paul Badham
A Good Death, by Dr Rodney Syme
Absolute Truth, by Edward Stourton
Doctor, Please Help Me Die, by Tom Preston MD

Recommended Viewing:
In the End, a DVD, Dr Charlie Corke
Andrew Denton Podcasts and interview:
www.wheelercentre.com/broadcasts/podcasts/better-off-dead

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Governments constantly say that there is no need to revise laws on assisted dying because palliative care deals with all those problems very effectively.
What is the response from palliative care to this rhetoric? Only to confirm that it deals very effectively with pain in the terminal patient. There is no public discussion of how this terminal pain, or other suffering is relieved. It consistently evades any public discussion of other aspects of suffering.
Careful examination of this literature reveals the extent of suffering in the terminally ill, and the difficulty in measuring and relieving it. The inordinate focus on the successful relief of pain is contested by Professor Michael Cousins, who stated in 2010, that “10% of cancer pain was so difficult to treat at the end of life that some patients were given drugs to sedate them to unconsciousness, culminating in death over several days to a week”. But breathlessness, cachexia, (wasting, weakness, immobility, dependence), anorexia, nausea and vomiting, incontinence, ulceration, discharge and odour are common, and far more difficult to palliate, and all impact on dignity. And this does not begin to address psychological, social and existential suffering, described by Francis Norwood as “social death” [i] . For an erudite discussion of medical suffering read Eric Cassell.
Is it surprising that palliative care does not entirely succeed with the palliation of suffering? Not at all – it is a monumental task, when you consider these further self-evident truths –
first, that intolerable and unrelievable suffering is common in terminally ill persons, and often escalates as death approaches;
and second, that some suffering is only relieved by death.

It is an especially difficult task when you maintain, as a matter of integral philosophy, that palliative care does not hasten death; and you are battling a constantly accelerating target, using a relatively poor tool kit. As evidence of the latter, let me cite a recent paper by Rowett and Currow –
“Patients receiving palliative care are at high risk of adverse effects from drugs. As these effects can be difficult to distinguish from the symptoms of the terminal illness, harm from medicines is often not recognised. Adverse effects contribute to the burden of symptoms at a time when good control of symptoms is paramount. Adding another drug to treat the adverse effects can compound the problem”.
This paper effectively indicates that, even 50 years after the establishment of palliative care, a level of experimentation goes on in treating terminally ill patients.
Palliative Care Australia acknowledged in 2008 that it could not relieve all pain and suffering, even with optimal care, but it was being a little disingenuous because it did not disclose its trump card, terminal sedation. In the 1980s the Graseby pump was developed, and Midazolam became available, which was compatible with morphine in a common syringe. First reported in 1988 by De Sousa and Jepson for ‘terminal restlessness’, terminal sedation was described by Burke et al as providing “a readily available means of controlling symptoms and overcoming patient distress where no feasible alternative existed previously”. In 1990, Ventafridda reported its use in 52% of palliative outpatients, to howls of anguish from others who stated they never, or very rarely, did so. Billings and Block described it as “slow euthanasia” to more howls of dissent. They famously defined ‘slow euthanasia’ as “the clinical practice of treating a terminally ill patient in a fashion that will assuredly lead to a comfortable death, but not too quickly”, and included terminal sedation in this definition. They were challenging the soft defence of intention, and focusing on outcome. They also asked “Why should a patient who requests a quick death be subjected to a slow dying?”
Its use has subsequently expanded to refractory pain, breathlessness, and extreme fatigue, psychological and existential distress. It is very clear that palliative care has the tools to relieve any intolerable suffering, but I have never heard or seen this made evident to the public. It remains the ‘Achilles heel’ of palliative care because it is used in exactly those circumstances where other doctors might provide assisted dying if they were asked. And this very process is only associated with patient consent in up to 50% of deaths, with no opportunity to say goodbye.
Far from acknowledging terminal sedation, palliative care has been assiduously arguing, that neither it nor morphine alone, if used in a proper palliative way, ever hastens death. Terminal sedation is justified for the treatment of ‘refractory’ or ‘intractable’ symptoms, as determined by the clinician, not the patient. Maltoni and colleagues stated that “Despite the huge progress made in palliative medicine in terms of symptom control, many are intractable symptoms, either because the treatment is ineffective or because the treatment itself is intolerable”.
However, in order to demonstrate that hastening of death is not the intention, the treatment is slowly titrated to a level where consciousness is suppressed, and thus, in association with withdrawal of hydration, death inevitably follows. I would have thought that if symptoms were intractable, and death clearly imminent, there would be an imperative to provide maximal relief of any pain and suffering as soon as possible. But no, even though, in law, there is no problem with hastening death if the intent is to relieve suffering (Devlin in R v Adams, Victorian Medical Treatment Act), titration is obligatory under the ‘palliative model of care’ – suffering continues until unconsciousness ensues, which may take days. And this occurs despite senior consultant Robert Twycross stating “nothing short of deep unconsciousness could provide relief and that inadequate sedation makes matters worse”. For a profound analysis of terminal sedation read Prof Erich Loewy – he wrote “Terminal sedation, we would claim, differs from some form of voluntary active euthanasia mainly in that it has not been and is unlikely to be legally challenged”.
Despite the availability of terminal sedation, eminent British geriatrician and ethicist Professor Raymond Tallis reports the opinion of a PC physician that 15% of deaths are ‘bad deaths’, and that it the opinion of the doctor, not the patient. In a Lancet Editorial Janet Hardy wrote “the concept of sedation causes considerable unease in many palliative care workers, most of whom are ardently opposed to any form of euthanasia or patient-assisted suicide. There is concern that sedation as the best means of symptom control in the dying patient is underused because of fear of employing ‘terminal sedation'”.
Jessica Corner wrote in the BMJ “the easing of death, as an intentional double effect, is common in palliative care and general practice. … Palliative care needs to take the lead by making clear the strategies it employs for managing difficult situations at the end of life, and, when the double effect is used with a view that death is a likely and welcome secondary consequence, to be open about this”.
Palliative Care Australia acknowledges that patients do make rational and persistent requests for a hastened death – Roger Hunt found 25% of his palliative care patients did so. Yet Ben Rich found it is “the view of a prominent segment of the palliative care professional community that almost without exception maintains that patients who receive state-of-the-art palliative care, including psychosocial and spiritual interventions almost invariably cease and desist from their desire for a hastened death.” Surprising – no – who has all the power is such discussions? Could this not be seen as duress?
The inherent “goodness” of the enterprise, and the essentially closed nature of hospice, has allowed the rhetoric of palliative care to escape examination. * As palliative care specialist Derek Doyle wrote ” a metaphorical halo shines over specialist palliative care and its practitioners with the result that some of its claims and assumptions have gone unchallenged by all but a few”.
Palliative care specialist Fiona Randall is one of those few.
She describes “the inflated and often contradictory claims made in the literature of palliative care – its rhetoric ….. which cannot, in reality, be enacted in clinical practice”. The language of palliative care offers an ‘impeccable’ assessment and treatment of pain and other symptoms and ‘exquisite’ and ‘meticulous’ nursing care. Randall says “This is embarrassing rhetoric”. “Palliative medicine claims to alleviate emotional, psychological, social and spiritual suffering, in addition to physical symptoms. There is no other speciality which claims to do all these.”
“Moreover, palliative medicine claims to be able to alleviate these forms of distress and improve quality of life, even in the context of dying. Dying is generally perceived to be associated with great distress, yet in palliative care it is held that we can apparently achieve relief of symptoms, including those of a psychosocial and spiritual nature”.
“The goal of impeccable relief of pain and other symptoms is unachievable, and the expectations generated by the philosophy statement are unrealistic. Setting unachievable goals for one set of people and promoting unrealistic expectations which will not be met in another group of people is unfair to both and likely to lead to harm for both”.
Ben Rich stated in 2014 that “Others have raised concerns about an authoritarian streak, or a form of hard paternalism, in the philosophy and practice of hospice. Those concerns denote a perception that some in the hospice movement maintain a rigid and monolithic view of death: one size fits all; it’s the hospice way or the highway.”
Sociologist Julia Lawton, who was embedded in British palliative care for 10 months, wrote “The research highlights the difficulties of matching modern hospice movement’s ideological goal of enabling patients to ‘live until they die’ with the realities of the ways in which many patients, cared for in hospices, bodily degenerate in practice”.
Palliative care has been described as a ‘model of care’ which has become more and more defined and specialized, into which the patient must fit. The Liverpool Care Pathway was an example of such a model, but failed because it did not treat people as individuals and ask what care they wanted. It led to abuse of autonomy. We are all individuals, shaped by our own experience and values. For government to suggest that we should all fit into a specific ‘model of care’ is extraordinary.
RELIGION –THE ELEPHANT IN THE ROOM
Ian Maddocks, the first Australian Professor of Palliative Medicine, states that “The roots of modern palliative care are of course to be found in religious orders concerned with the care of the dying”, and that “Palliative care usually has adopted a confrontational position against voluntary euthanasia, partly because of the historical association with Christian (Catholic) concern to preserve life”.
Assoc Prof Alex Broom spent 6 months embedded in a Catholic hospice, interviewing doctors, nurses and patients. He found an atmosphere of tension, with death in the air, a place of unbounded and hopeless bodies. Patients had a sense of impotence; they were subdued within the hospice’s ideological frame, with a sense of entrapment.
He found among the patients virtually unanimous support for assisted dying, but the hospice was totally opposed. A desire for a hastened death was seen as a call for help; the patient ‘just needed more time’ to adjust, their request was met by spiritual and social support. The assessment was that it was ‘not his time to go’. Assisted death was not part of hospice care, which had an ideological model of dying, based on religious contexts.
He also found an underlying Catholic influence in the hospice; although it was a site of medical care, it had Christian underpinnings, and an interplay of religiosity which was rarely explicitly acknowledged. The care was precariously placed between care of the body and care of the soul.
Cardinal George Pell proudly states that 57% of Australian palliative care is provided by the Catholic Church. There is no other area of Australian medical practice which is so infiltrated by a specific moral framework. There can be no doubt that the religious origins of palliative care and this religious dominance in its provision has a profound effect on how people die.
Palliative Medicine Professor Sam Ahmedzai , a critic of euthanasia, but a supporter of assisted suicide, wrote “It is patronising to say that a few people should suffer unbearable distress and indignity because palliative care preaches that it values all lives – regardless of how meaningless they have become to their owners. It is inconsistent for palliative care to boast how it enables people to face the reality of dying and decide about place of care but then to deny choice for timing of death. Moreover, it is hypocritical to deny competent patients who are acknowledged to be dying, the right to die in a manner of their choosing, while allowing doctors and nurses to place them on a so called care pathway, which often entails increasing sedation and withdrawing fluids – unintentionally leading to a protracted form of assisted dying, but one that is medically determined.”
Let us consider the above in the light of my final self evident truths. First, that a doctor has a duty to relieve suffering. Sir William Osler wrote over 100 years ago that a doctor’s duty was to ‘ease death’. Second, that a doctor has a duty to respect his patient’s autonomy.
Given these fundamental ethical obligations, should a doctor, treating a patient with intolerable and unrelievable suffering who asks for assistance to die, simply offer refusal of treatment, or slowly progressive sedation, or the option of refusing food and fluids? – as is suggested by the American Association of Hospice and Palliative Medicine.
Some people listening to me may think I am violently opposed to palliative care. Not so. I support the open and frank communication between dying patient and doctor, of supporting your patient to go as far with their life as possible, and encouraging the acceptance of the reality of dying, the maximal relief of pain and suffering, giving them a sense of control over the end of their lives, respect for patient autonomy and encouraging dialogue between dying patient and family with the important object of allowing them to say goodbye – all good palliative principles. But I do not accept the rigid imposition of a particular model of care, and a limited choice at the end of life which condemns some people to die in a way that is anathema to them, in order to satisfy the moral view of their doctor.