The following are extracts from the diary of 90-year-old Eileen Dawe. She was diagnosed with terminal cancer and wrote of her wishes for a different kind of dying.
Monday, 27th July 2015
My name is Eileen Emma Dawe born on 26/8/1925 nearly ninety years ago. After suffering nearly six weeks of strong pain I was eventually diagnosed as suffering from untreatable terminal cancer. It is my wish to end my life whilst still able bodied and clear minded. I have now received pain management medication for five weeks.
Two weeks would have been sufficient for final goodbyes and an orderly exit. Early August Pain relief helpful. Getting business affairs in order. Phone out of order for eight days. Still considering overseas assistance to Switzerland. Likelihood becoming less of an option.
Tuesday, 25th August
Cancelled bridge due to discomfit and hearing stress. A surprise lunch had been planned for me.
Friday, 28th August
Admission to hospital. It would seem to me my one option out of life is slow starvation, whilst most good folk wish to keep plying me with pain bearing food or wishes for a longer life.
Sunday, 13th September
Completed two weeks of further pain management treatment. An experience that left me astounded at the patience, kindness and caring that nurses, doctors and staff lavished on a terminally ill ninety year old woman whose wish then and now is to depart a long and happy life as soon as possible.
Written after return from hospital ‘I need your simpering smile and a hand to soothe my pain awhile. My country’s laws decree “Death by a thousand cuts for me”. My life flows away like an ebbing tide that takes my courage and humbles my pride. My independence stripped away as I linger on for another day. I have no choice’
Monday, 21st September
I am comfortably starving to death. We tried to find a gentler choice – one that our fellow Australians do not approve of or permit. So I must abide by their wishes.
Friday, 25th September
Over two months of pain relief. Not my choice. Another awakening to a day of medication. The threat of pain hanging over me as I wither away to that shrunken bundle being quietly discussed. My hearing and eyesight, along with comprehension deteriorate. The perplexed eyes of a stranger return my gaze.
First moments awakening bring sadness and dismay with the realisation that my continued existence seems interminable.
Sunday, 27th September
If it is illegal to shorten one’s life by administering drugs, which is it not also illegal to give drugs to a patient to extend their time of dying. Both must be unnatural practice against the laws of nature. Is the desire to end suffering an irreligious act against so-called gods? Is suffering and pain something to be endured to gain access to a so-called afterlife?
Monday, 5th October
Another restless night. 11 weeks since diagnosis. Another day of sad routine. Does it have to be so long?
Friday, 23rd October
Body starting to reject all food and liquid – pain (physical) not evident.
Sunday, 25th October
Another morning as I lapse into all that I did not want to become. Perhaps my sanity next to go. Pain is menacing.
Tuesday, 2nd November
It’s like waiting for a train that never comes in.
Friday, 13th November
Eyesight failing [and] early July my last real meal. Meals are a dry biscuit. Nothing really interests me for future. Sleeping a lot. Mind wanders a lot. I watch my daughter toil and my life slips away. What egotistic monster would subject another human a peaceful departure with friends and loved ones. I fear for those less fortunate than me and still dread what will be my as yet unknown end will be.
Sunday, 29th November
My treatment consists of semi-starvation since release from hospital.
The question I ask [is] why must it go on for so long? I want to die, I am happy to die. Why drag out a long, long, long suicide. Some days I eat a little food – usually gives diarrhoea or lots of frothing from the mouth, slight vomiting. Sometimes very weak as I tire [but] sometimes very energetic.
I love my little garden of plants that give me enjoyment and beauty like the birds beyond. I do hate the long, long farewell. I just do not have the life that was mine anymore.
I am happy to go… Glad did I live and gladly die. I do hate the long, long farewell.
- Eileen E. Dawe, first published in The Damage Done, August 2016
On Saturday, 12th December, 2015, Eileen Emma Dawe passed away, aged 91.
Diane was one of the most courageous persons I have ever known. She was a fighter who beat the odds and lived through great pain with a smile on her face and unfailing humour. My friend, Diane, would not follow the doctors’ advisement to go home to die when she was diagnosed with advanced metastatic breast cancer. She had to seek another oncologist’s opinion as her first refused her request for chemotherapy. She was determined to fight this cancer.
She had two young boys, a loving husband and a life worth living. The second oncologist agreed with the first but finally supported Diane’s decision to fight and arranged for the chemotherapy and radiation. She was given four to six weeks to live. She lived ten years. We made a joke about doctors’ prognoses; ‘You’ve had so many expiration dates stamped on you!’ I said. And we laughed as she lived past those dates.
It was a hard ten years. Repeatedly the cancer returned and she fought back again and again. Words like courage, strength, determination, spirit – well they just aren’t enough to describe this woman’s unfailing efforts to live. I am still deeply affected by the memory of how she had to die.
When her time came, her bones were riddled with metastases and fractures. Breathing broke her ribs. Can you imagine this type of pain? Multiple fractures throughout her body. I can’t imagine it. No-one should be forced to live through it. I will never forget her words the day I called her at the hospital. Without saying hello or the usual pleasantries one begins a phone call with, my dear friend, the strongest, most courageous woman I have known immediately said, ‘Oh my God Cheryl, my body won’t stop. My body won’t die. Oh God, Cheryl.’
I’ll never forget my friend begging for her agony to end. She had lived with a great deal of pain and suffering from chemotherapy, radiation, surgeries and metastatic fractures and met it head-on with humour and strength. She was inspiring. I cannot comprehend the torture she would have gone through.
She didn’t deserve that. No-one does. It was completely unnecessary. No-one benefited by forcing her to have to live that last month. I cried every day for that month. The first day I didn’t cry was the day her husband called me and told me she had passed away.
I’m a doctor who went into medicine because I want to help people live the best lives that they can. Today as I write to you about health care, I have one question: Where is the caring in Diane’s story? Voluntary assisted dying is not about giving up. It’s not about someone else’s religion. It’s about the right of a person to not suffer unnecessarily. A person making the decision for themselves.
She suffered cruelly. Her family suffered watching helplessly as she would cry out in pain. We are all scarred by this. Our current legislation enforces unnecessary cruelty on some people. We vowed not to cause maleficence. We are failing. Ask yourself if you would be happy to die that way. If your answer is no, then you know it is wrong. It’s time to make a change. It’s time.
- Dr Cheryl Wilson, RACGP, first published in The Damage Done, August 2016
My mother, Anne Holland, had Parkinson's disease. She knew that this would eventually kill her but she wanted to get the maximum out of life before that happened. She arranged her affairs and spent 4 years in nursing home care before she deteriorated.
When she could no longer walk and because my father was also infirm, we moved her to a nursing home where her husband could visit daily. After 4 years and on one of her 'good days', she asked her GP —“Can you help me die when I say I have had enough?” The obvious answer was no, of course, and I saw both fear and disappointment on her face. Just before she got to the stage of not being able to swallow and straight after a speech therapy session she said (read: shouted) to the GP - "I’ve had enough! Let me go. I’m hungry, thirsty, incontinent and can’t move, have ulcers and have said goodbye, now let me go!" I heard her repeat this at least three times in the months before she died. I could see the fear in her eyes and I really wanted to help. Eventually when we could no longer give her food or water because she couldn’t swallow and because she had requested that she not be fed by a tube, the doctor asked permission to put her on palliative care and explained that this would dull the hunger and thirst issues while they starved her to death (my words) and that she would, if she was lucky, quickly get pneumonia and die in her sleep.
We gave permission for palliative care since we felt there was no legal alternative. We are still suspicious that her palliative care was there to make the onlooker feel good, not to substantively help mum. We can’t tell what that was like from her side of the drugged fog but she only cried and moaned a little for about 10 days before she died – the documents would have said of pneumonia but that was far too simplistic.
When supporting euthanasia we have to be careful that it's not the onlookers we are pleasing but the patients. I’m convinced that Mum suffered, she knew she would and no-one knows what went on in her consciousness while waiting to starve.
She donated her body to science—let's hope it was useful.
I lost both of my parents to terminal cancer. My Dad died in 1993 nursed at home by my mother and he had no wish to use euthanasia to end his life. He died peacefully with my Mum by his side and my brother and I in attendance.
In 2012 my dear Mum lost her life to terminal cancer. She died in terrible pain also at home where myself and my brother and sister in law nursed her. Her last three or four days were terrible and she wanted her life over. She pleaded with palliative care nurses and doctors and medics from the SA ambulance service to end her life and put her out of the misery she was enduring. Her body was breaking down and her inability to cope with the pain was hard to endure both for her and her family watching on. She was ready to die and to join Dad somewhere in the great beyond. We are not religious people but I believe that she knew Dad was waiting for her.
We are not talking of assisted suicide here but helping someone die with dignity and pain free. We were not able to even touch Mum without her crying out in pain in the last 2 to 3 days of her life. How can one comfort a person without being able to put an arm around them and reassure. Only in the last hours of her life did she appear to be pain free. The dying process was difficult and traumatic and thankfully she did not appear to know how she was dying. She would have been upset and angry that she had to die this way. She was in favour of voluntary euthanasia and I promised I would help to keep up the fight for it.
Voluntary euthanasia should be available for those who are in the final days of life with no hope and in great pain. I hope that one day we can treat our humans and family with the same dignity that we allow our animals.
- Deborah Raphael, January 2017
In December 2015 my mother was in Resthaven in South Australia. She had a second stroke and had a 'Do Not Resuscitate' directive in place so, from that day, she was given no food or water.
Nursing staff told us that she would not feel thirst or hunger. They were so wrong! Mum lasted for over 9 days in the middle of that awful heat wave we had last December. She sucked so hard on that damn mouth wash right up until the last day. Clearly she was thirsty. She had the 'death rattle' for five days.
In my 60 years of life, those last few days were the most awful memories I have of my mother. I feel like I murdered her. She suffered, and the medical reassurances that she wouldn't suffer were bullshit.
As an adjunct, I went from enjoying very good health to having a life-threatening medical issue just 6 weeks later, and now have a serious auto immune illness as a consequence. I believe the stress of watching my mother's death triggered my illness. I was 'prepared' for her death because she was 87. I was not prepared for the manner of her death and I do not want my family to go through this for me.
- C.W., February 2017
Meet Jo in her early seventies, who was diagnosed with Stage 4 brain cancer earlier this year. She decided, after exhaustive diagnostics, to opt out of all treatment in the hope that it would not take too long before she'd pass away. After a few weeks in a public hospital, enduring persistent pressure from medical staff to accept treatment, she was transferred to a palliative care hospital.
Jo believed in euthanasia, but it is illegal in the state where she lived so it was not an option for her. She was hoping that without treatment it might only take a couple of weeks before she could die… she was wrong! After suffering for over two months with pain management that was not effective she finally succumbed to the horrific disease invading her body. She did not have a peaceful or dignified death.
What a difference her end of life care would have been if she had been able to access the choice of legal euthanasia!
- Rosemary Doolan, November 2016
I was diagnosed with Motor Neurone Disease (MND) on 19 November 2015. I don't want to see this disease through to its horrific conclusion. I have attached a photo of me wearing a tee-shirt, which I may have to wear permanently. I have also attached a photo of 'special needs' for MND patients. I would rather be dead than tolerate the majority of these scenarios. 'Mobility and transfers' - Who in their right mind can endure, or be expected to endure, any of this?
I am 70 years old. I was a competent classical guitarist and swimmer. I could speak and be understood. I have lost the dexterity and strength in my left hand which allowed me to play numerous pieces, mostly by Bach. What used to be an enjoyable pastime is now frustrating and soul destroying.
I could swim for an hour doing laps. On 10 January, 2014, I rescued my wife from a rip at Christies Beach in South Australia. When I went to the pool on 11 August, 2016 I only just managed to swim 25 metres freestyle with fins! Lifting my left arm out of the water is barely possible. My speech is slurred and I have to make a conscious effort to speak and be understood, especially when shopping, but even when talking to my wife and our children.
Without 'assisted dying,' people like me who wish to 'end it all' one day with suicide, are at risk of ending up in a more serious situation should the attempted suicide fail. Frankly, I am just existing and each day is consumed with muscle twitching, trying to spit viscous tenacious saliva from my mouth and trying to clear mucous from my chest. Things will only get worse!
Why do people think you are insane when you are contemplating suicide? How many people are in my situation ?
- Robert Rankin, May 2016
Note: Robert passed away late October 2016.
"It's so much worse than I had imagined."
After much thought I am forwarding to you one of the last messages my dearest friend wrote, three weeks before she died from motor neurone disease (MND), surely one of the cruelest of deaths.
My hesitancy comes not because I do not wholly support your campaign, I do, and so did my friend, but from the sadness which is still raw, even after nearly two years. But perhaps two years is an indicator that the grief should be directed more constructively. It is about how long my dear friend lived after her diagnosis, a classic prognosis for MND.
Her wish was to die at home and with the best possible support from her husband, daughters and friends and an excellent palliative care team – that is what she did.
During her illness she explored the Dignitas option for which she was accepted, and she wrote to me saying what comfort this gave her. But classically when she could go to Switzerland, she wasn’t ready and when she was ready she was too ill to travel. Other options were explored too but finally she altruistically decided to leave her brain and spinal cord for research and in this interest to see the disease to its natural end. Her enormous courage and stoicism in the face of extraordinary mental anguish and physical discomfort at every level is, I think, underlined by the scrawled message in her barely recognisable hand. Highly intelligent and erudite, even in the extreme effort to write when she could no longer speak, she still got the grammar right. I treasure that apostrophe!
She wanted me to use the photo I took of her message to advance the case for dying with dignity and her family is happy for it to be so used.
I hope it will be a useful addition to your evidence so that one day compassionate legislation will be passed.
- Elisabeth Inglis, December 2016