I’ve been suffocating for two years. I was diagnosed with chronic obstructive pulmonary disease (lung disease that prevents proper breathing) at the age of 57 and I also have cirrhosis of the liver. Since then I’ve been stuck on basically a compressor and I’ve got a tube that I breathe through and I’m stuck in a room. There are people in jail doing less time for murder than me. I want to share my story with everyone so hopefully we can get something changed and so we can all go peacefully instead of having to suffocate.
I worked pretty much all of my life. I left school at 15. I was a painter. I’ve picked fruit. I’ve cut grass and hay and stuff. I’ve made mag wheels. I’ve pretty much had a go at anything. I was always active.
Initially I was a smoker but, I mean in my day, no one cared what you sucked into your lungs and all that sort of thing. I wasn’t too bad, but then it got worse and worse. They saved my life twice and bought me back to life again. I’ve been confined to one room for two years. The only other place I’ve been is in a hospital. Don’t get me wrong, my brother-in-law takes me for a drive but I still have to take oxygen with me. I’m living with my sister and brother-in-law at the moment. Trouble is, it’s getting harder and harder. I mean they want to send people around to give me a shower and stuff like that, but it’s not about a person giving me a hand, I can’t breathe properly.
Basically my daily routine is wake up in the morning, have breakfast puffing and panting and then I just sit on the bed watching telly. My legs are falling apart and my body is falling apart and I’m on painkillers because I’m sitting here on my backside all the time.
Basically there is nothing the doctors can do, but nobody wants to let you die and you know, I just can’t do this anymore. Every day is a struggle and why the heck is the government keeping me alive?There’s no way they can improve my life, my lungs are stuffed and if they don’t do something I’m just going to do it myself.
I’d like to try and get the point across so everyone in Australia knows how ridiculous this is. I’m sick of the church and their excuses. It’s got nothing to do with God. If God was there, he would have killed me ages ago. He wouldn’t let people suffer like this. It’s not just me, it could happen to you, it could happen to anyone. I wouldn’t wish this on my worst enemy.
- Tim Cooper, October 2018
When life hurts more than death, when suffering overtakes living, and without a Voluntary Assisted Dying Law, one Victorian a week takes matters into their own hands.
They’re always alone, without saying a proper goodbye to their loved ones. Lawrie wrote: “If we had a compassionate Voluntary Euthanasia process in this country, none of this would have to happen the way that it has. I hope you can forgive me, and that you and the children won’t see this as selfish, but as self care, and self-compassion in a country where I had no alternative.”
Despite the best palliative care, there’s no relief for suffering.
- Lawrie Daniel, January 2018
Father loved to do practical things and that included building houses. At the time fibro was a popular choice for internal and external wall covering. Unfortunately its side effect was asbestosis. My father’s lungs were shot to pieces and when he reached the age of 72, fluid built up in those lungs and he was in excruciating pain. I took him to have blood tests and X-rays and finally the doctor said to take the x-rays to Westmead to have them read.
My father had had enough. He was terrified of dying like a lot of his friends and on this night he decided to take his own life. He used a shot gun to his right temple. It did not kill him immediately; his brain was shot to pieces as the bullet ricocheted within his skull. The events that followed were harrowing; ringing the ambulance, the intensive care ambulance, and the Police as a gun had been discharged, and all the events that had to follow. He was taken to Westmead Hospital and was given medication, oxygen and tube feeding. Then they wanted to perform a tracheotomy on him. I was appalled...I said he wanted to go, just let him go...but no that wasn’t what they wanted to do. I checked for myself to see how his wishes should be carried out. I found out that I could have his medication stopped.
I told the registrar that was what I wanted. He said “What more would you like...cut the oxygen and the food?”. I said no, just the medication. He came back later and said he checked and that it was within my rights to refuse medication.
It took a week for my father to eventually pass away; at least he was finally at peace. I was traumatised for the next 10 years over all this, but now I can at least tell this story. Voluntary Euthanasia would have been the answer.
- Coralie Richmond, July 2017
I am exasperated, devastated, and relieved.
I’ve experienced these emotions during the recent death of my mother. She said, in one of her last phone calls to me, that ‘I was told that it would be painless, and I’m so cranky’.
My mum, Bet to her friends, had pancreatic cancer. From her diagnosis in April until her death in September there were some bright moments, but we all knew there would ultimately be a downward slide. Even though she was told that her death by cancer would be made painless, she interpreted that as meaning that there would definitely be no pain or suffering, and was confident that would be the case. Unfortunately, she was wrong.
Her brother had recently died of the same disease, and had had significant surgical intervention. After medical advice, mum opted against major surgical intervention (though a couple of stents were inserted), chemotherapy or radiotherapy, not that those were really options for someone who was otherwise healthy, but was in her eighties and somewhat frail.
The reason I am exasperated, when mum was just cranky, is because my disposition is not as uplifting and indomitable as hers. Nobody’s could be. She never once asked ‘why me’, and she never complained about her situation. When we asked mum about her pain level, and hoping she had no more extreme pain flare-ups (a fact of life for many cancer patients, but she could not recall being forewarned), she would give a thumbs up, and try to manage a smile. She didn’t want us to feel down. She left a message in April to inform me of her diagnosis and said ‘Darl, it’s all OK, just calling to let you know I’ve got the results back and I’ve got pancreatic cancer. No need to call back. Bysie Bye’. It is easy to be exasperated when a person of such wonderful spirit had expectations of a painless death that could not be met.
Her poor quality of life in the last months was not the fault of her palliative carers. Her doctors and nurses at her hospital were professional, compassionate, and according to mum, ‘excellent’. All staff were committed and sensitive to the needs of patients in pain and suffering. However, more money is needed for the palliative care hospital system. Mum’s needs have always been simple, but she couldn’t use a phone or TV because, apparently, three quarters of the phones and televisions in the hospital didn’t work. We had to buy and teach her how to use a mobile phone in her last month (so she could call us as required). In the absence of a working TV that would have taken her mind off things, she existed to think, breathe and stare at a ceiling when we weren’t there. We can do better for our terminally ill in contemporary Australia.
Perhaps it is now moot, but it is interesting to speculate what mum would have done if she knew that she would eventually have two episodes of excruciating breakthrough pain: one requiring dramatic ambulance attendance, and the other while in palliative care. As well as these pain events, there is also a lack of dignity associated with this disease. She was toileted and showered, there was a cocktail of pills and suppositories, ongoing and frequent injections of painkillers and antiemetics, cannulas, little vomiting episodes, dryness, artificial saliva sprays (because drinking was nil or minimal), lack of appetite, nil food for the last week, emaciation, and gurgling respiratory infections. And that was in addition to the bowel blockage, the appearance of being six-months pregnant, the threat of possibly vomiting fecal matter, and knowledge that she would not be sedated so that scenario could never arise. And perhaps she should have buzzed the nurses every half an hour for extra pain relief, rather than waiting…
Until the last three days she still had a bit of spark. At that stage she indicated she would be happy to die then. She was then consumed by the disease, her optimism and vitality overrun as she drifted in and out of light sleep, signalling the onset of the inevitable. There was lots of hand-holding, lots of support, and distress at the discomfort of our loved one.
After her many pain events (minor events though were well managed in palliative care) and suffering, she died in the company of a nurse, while her loving husband and I, her eldest son, were but ten minutes away from being with her. She would have preferred dying in the company of her loving family and relatives, and preferably at home. Who wouldn’t? If she could have chosen her time of death, then the family could have been there for her. The extended family has been devastated.
Bet suffered more than I could or would wish to endure.
Many patients would benefit if increased funding were made available for the palliative care system, which is more likely if voluntary euthanasia were a legal option. If I were in my mum’s position, I would have chosen, intentionally, to die earlier, rather than suffer as mum did. If mum had been better informed and had chosen that option, she would not have suffered as much. Given the cost of doctors, nurses, medications, hospital beds, leave from work for visiting relatives and friends, there is a substantial cost to keep patients alive and in a relatively pain free state. This is a cost society chooses to bear, humanely, for those patients who wish to hang on to the natural end, such as my mum. We wouldn’t want it any other way.
On the other hand, there are better opportunities for governments to expend scarce health budget funds rather than where they are not wanted, especially in these times of austerity. Many patients don’t want excessive funds spent on them and would rather, if legal options were available, choose voluntary euthanasia rather than pain and suffering.
I want the option—I hope I will have the legal option—of voluntary euthanasia. Bet chose not to have voluntary euthanasia. Whatever her choice was, it was her individual choice about her life, and it needs to be respected, as everybody’s choice should be. Bet is no longer suffering, and for that we are relieved. She had a great life. She loved and was well loved. She might have joked that mums are always right, but on her chosen end-of-life journey, I suspect even she would say it didn’t meet expectations.
- David Swanton, March, 2017
My mother Joyce was born 18th January 1927 and passed 16 February 2016.
Mum was a very quiet but strong person - never complained when she was ill.
In 2007 mum was diagnosed with bowel cancer. I had never heard mum complain of a headache or anything. The day she was diagnosed with bowel cancer she rang and told me, and I cried. She said "don't be silly, I have had a good life".
Mum had 7 children, 20 grandchildren and 8 great grandchildren.
On Christmas Day 2015 I went to collect mum from the nursing home she was in. Mum was unable to walk but had her faculties about her. As soon as I saw mum I knew something was wrong, she looked very tired and thin. The next day I went back again, mum was dressed but in bed. I was told mum asked to go to bed as she was tired. I asked for a doctor to come see her but after waiting a few hours I said to ring an ambulance. I knew she had to be dehydrated as she was very thin. This was the 9th of January.
The ambulance came and mum was transported to hospital. They were very good to mum, they could see how sick she was. When we got to the hospital someone said to me, ‘be firm as they only come here to die.' He stayed with us for some time, a doctor came and said mum would be tested for gastro, she was dehydrated and malnourished. He said he would give her a drip and would probably send her back to the home. I was so angry and stayed until early morning to make sure she got a bed. Mum stayed a couple of days at hospital then was moved back to the home in the rain.
On January 15th mum returned to hospital. She was not breathing very well, and after some tests we were told to gather family as she could pass at any time.
Over the next few days mum was treated with all sorts of drugs, then it was decided to just keep up the morphine and injections for her breathing. She was on a very light diet. The nursing staff was very good to mum but we could see it was becoming a burden with her colostomy bag and needles. I also think as we were a big family and loved by mum there was too many of us there but we all wanted to be with mum.
It was then decided to move mum back to the home, on condition her doctor came and took over her care and palliative nurses. We had no say and this was not what we wanted. Mum was back in the home on 25th January, I signed some paperwork DNR as this is what mum had requested before in hospital.
Mum was so scared every day she looked like a rabbit caught in the light. At times she looked like a statue. She still recognized all of us by name and we still had conversations with her. The morphine was still every 8 hours then 6 hours then 4 hours. She was cooking up. So red and boiling hot we had to get an industrial fan to cool her down. The days before she passed the doctor decided nil by mouth. We cried with her and for her as this seemed so inhumane. Now only the morphine and the drug for her breathing.
She knew what was going on, even though the doctor said unresponsive. She kept asking “I am dying, aren't I?”
When she couldn't talk her eyes did her talking, when an aide came in that she loved her eyes lit up. She wasn't silly.
On the 15th of February I received a call at work to say that mum had very little time left, so I went to see her. We were all there with her. Each day got harder and harder as she was getting so cold and statue-like. I cried with her and for her, she would have hated that. She was delusional at times over the last days, trying to touch something on the ceiling and to get up. Mum was so scared, the lady in the next bed said mum was calling out for "Billy", my dad, to come save her. This amazed us.
On her last night we were talking to a corpse, and the doctor again said unresponsive, but he was wrong. When I walked in her eyes lit up. She was white, like ice and so rigid. I left about 11pm. A sister from the home was sitting with mum, she rang and said mum had passed just after midnight. We all went back and sat with mum until a doctor came at 7am. The sister said “This has been so long and agonising for all of you. I am so very sorry.”
More thoughts of the morphine, was it making her passing easier?? Making her more comfortable???????? I don't think so, she slept a lot, and it took her ability to talk to us away. Her eyes were pleading with us, she was so scared.
This just wasn't mum; she wanted to die like her mum. Nana walked out front door and had a heart attack. She was angry at times, she was frustrated. It was 32 days of torture for us and her, such mind games.
I have told my children that I never want this to be me. I want to die with dignity and respect, which I felt was taken from mum.
- LP, March 2017
My mother passed away in 2002 at age of 82.
She was an asthmatic from 6 months of age & never smoked. She suffered a collapsed lung in her early 50s and later in life she developed emphysema. Over the years she experienced a very gradual reduction in respiratory functioning and in her final two years she was admitted to a nursing home, as Dad was unable to care for her at home.
She was either in bed or on a chair beside her bed and I could take her out in a wheelchair to her own home for a few hours in the first year or so but then she was too weak and in bed most of the time. Mentally, Mum was alert. She was a Christian woman who always went to church and prayed and felt at peace with God & more than ready to die, with some dignity. She was a very dignified, intelligent lady with very little quality of life. She expressed to me on many occasions that she was ready for voluntary euthanasia and didn't want to suffer anymore. She would beg me to do something to end her life.
Watching her struggling to breathe in the last months of her life was horrendous and I would sadly explain to her it was illegal for me to do. My mother suffered considerably with no compassion from her doctor or anyone else to listen to her plea for voluntary euthanasia and for what? To stay 'alive' for a few months...
I do hope there are changes to these laws.
- Margaret Blowes, March 2017
My husband and I had been Members of Dying With Dignity (NSW) for thirty years. We had fifty years of marriage accompanied by good health, until the very end of my husband's life, and his awful death in our local hospital, over two and a half years ago, just before his 94th birthday.
I guessed he was dying, after I was warned things were 'not good' with his lungs. He was in hospital for five and a half weeks following a broken femur and then I brought him home, with a special bed and two visits each day by visiting nurses, to bathe him and change the sheets. He had eleven days at home, before having to be admitted back into hospital as his lungs couldn't cope any more. Of course, we had hoped he'd just die at home, surrounded by familiar things and us, but, sadly, it was not to be.
I called the ambulance around midnight, on the eleventh day after his arrival home, as the nursing service had repeatedly reminded me to do, when 'his breathing became bad'. The paramedics arrived about seven minutes later, and it was just wonderful to see how my husband relaxed back onto his pillow from desperately sitting up and leaning forward to try to inhale life-giving air into his poor old lungs, when they placed the oxygen mask over his face. That made him and I feel something kind and humane was being done, whilst they were transporting him into hospital. We thought they'd keep up that level of help. I hate to say, they DID NOT!
I was told to try to rest and see him early next day. He would have arrived at the hospital around 1 a.m. I got there around 8.30 am and he was in Emergency but breathing without a mask, in the same awful, desperate way he'd been at home!! I couldn't believe it, but my questions re a mask were told to wait, when I begged the staff to help him. My daughter had to drive for an hour and a half to reach the hospital and despite occasional attendances by nurses, his breathing was STILL not being helped! It was sickening to watch. I could hardly bear to look at my own husband, so frightful and sickening a sight it was.
It was long after my daughter was starting to complain, very loudly, that 'THIS IS HARROWING', repeated numerous times and with me also stating the same, in a loud voice, that FINALLY, at around 2.45 pm he was given what he SHOULD HAVE BEEN GIVEN when I arrived, the Midazolam & morphine injection which they said would put him 'to sleep' in one minute. It did. I might add, he stayed like this for 3 days, and as I slept on a stretcher on the floor beside his bed, for the three nights before he died, which was the next afternoon.
(He'd been moved into a private ensuited room later that day. I left each morning at 4 a.m. as it was so horrible to hear two nurses using a suction machine to clear his lungs each morning of those three days. I pretended to be asleep and when they left the room, I dressed and drove the fifteen minutes home, to my two dogs).
After he was given the peace the Midazolam and morphine gave, then administered by a drip, I saw the Senior Specialist. We had quite deliberately chosen to meet this specialist - with a reference from our GP - at his rooms within that same hospital in January or February of that year, so we could tell him we both believed in Dying with Dignity when our 'time came', and that we did not have any religious affiliations which might hinder our outlook and were very active members as regards regularly attending meetings over the thirty year period of our membership, when firstly it was called Voluntary Euthanasia (NSW).
The fact that my husband died on the second day of January, 2011, after having to endure FOURTEEN HOURS of utter frightening, desperate misery, fighting for life's oxygen, but not helped even with an oxygen mask and also at his great age, 93 years old, not being given help immediately, after all our exhortations, was absolutely INHUMANE!
It has only been the past year that my daughter and I have been able to feel emotionally strong enough to talk about this simply DREADFUL way of dying. He deserved the best, too, having been a Fl. Lt. Pilot, MID, of Lancasters in Bomber Command during WW11 in England. Everyone deserves the best, at the end of their life, especially. He was a wonderful husband and father, for the fifty years of our marriage.
I have spoken to my GP about this and have an Advance Care Directive, as my husband had. But, because it is not legislated in Australia, then it is quite obviously left to the individual, all by yourself, perhaps at a time when you are unable to help yourself. My husband wrote a letter to support the Northern Territory's Right of the Terminally Ill to Die all those years ago, before Mr. Howard and his Minister, Kevin Andrews, intervened and stopped the NT from doing so, as also happened in the ACT.
I believe that what Ministers Howard and Andrews did was to impose their own beliefs onto the beliefs of the majority who voted for the Right of the Terminally Ill in the Northern Territory. A shocking action to take. We have Abortion Laws in place now, for those women who choose to terminate their pregnancies. So, we should now enshrine in Law Voluntary Euthanasia, as various countries in the world have already done.
We have always believed that the right to die is up to the individual, when ill, and/or old, and not wanting to be a burden on themselves - first and foremost - or their family, friends, let alone wasting precious space in a nursing home more suited to others, with all its rules and order of the days that must be followed, whether you like it or not! Life for some does lose its joy, when pain and illness brings dependency on others, who are so often total strangers.
No one should impose their outlook on their own lives, upon the lives of others. It smacks of old fashioned, missionary-type zeal of 'we know what is best for you'. Patronizing rubbish! We don't, these days, try to force our religious beliefs onto others. (Or, we shouldn't).
So should we not impose our own beliefs onto others as to how long each of us should live, or how we should die. We individually want to make our own private decisions as to when to opt out of life, and at a time and date of our own choice. Just as we animal lovers/farmers have been doing for our pets, herds or wildlife. We stop their misery, knowing Veterinarians cannot help them back to an independent and decent quality of life.
The really remarkable thing about knowing that a solution is available, doesn't mean everyone is going to choose to take that step. It is simply the mental comfort of knowing it is THERE, it is IN PLACE, if and when you wish to access it, that keeps you from taking that final step until you know you've thought long and deeply about it, and now, really cannot take any more of life. We all will, naturally, hold onto life, as long as we can. People are remarkably resilient and hopeful. Most of us are, to the very end.
No family wants to watch their loved one die in the desperate way our wonderful husband and father had to bear. It was absolutely cruel and inhumane, for him and for us to witness, the painful memory of which will be with us to our own dying day. Hopefully, by then, may we have this kind, humane and understanding law in place, for those who choose to access it.
- Gabrielle Hogan, February 2016
I am an ex-nurse and, in my later years, studied a diploma of social sciences. In both careers I worked with many elderly people where I experienced the desire of people wanting to die with dignity. In many cases their wishes were supported within the extended family.
My father had lung cancer. The final few weeks of his life were spent in agony, he was unable to sleep in a bed, could not eat anything, was humiliated by me bathing him. I would ask him to pretend I was wearing my nurses uniform and forget I was his daughter. To watch this once strong, independent man suffer so much was terrible.
My friend of 55 years spent one year on cancer drugs then finally said "I can't keep living like this." He refused further treatment, and took 6 months to die while in terrible pain. I could no longer recognise him as the person he was.
I don't want to experience any of this. I am not pushing my ideas on others but I would like to have the choice once I can no longer live the life I want. My husband also does not want to end his life dependent on others. The only option we have at the moment is to take our own life in an horrific, uncontrolled manner or suffer a lingering death in the hands of the medical system. By being given a choice of dying with dignity we would have the opportunity to select an alternative.
- Elvie Murphy, December 2016
My sister Patricia Ellard died in August 2016, with glioblastoma multiforme, an unsurvivable brain tumour. She was 58 years of age. Prior to her cancer Trish was an IT manager, the life and soul of any party, and extremely fit and active. She ran marathons. She was intelligent, articulate and very much in control of her life.
As the tumour progressed it took from her all we who loved her would recognise as Trish. She knew this was happening and resented it so much. She lost her balance, her ability to process thoughts, her words, her eyesight. She lost her freedom because she could no longer drive, or catch a bus. She required someone to be with her 24 hours of the day for the last few months, so she lost all sense of privacy and control.
Everyone knew she was dying, but being so fit she outlived her doctors expectations. Trish did not have the capacity to take her own life, but she begged everyone who came near to 'tap her on the shoulder, and send her to sleep.' She became so distressed mentally toward the end of her life, she refused to eat or drink, laid her clothes out on the floor in preparation for the White Ladies, and insisted she had a time booked for them to collect her.
We could not manage Trish's care at home because there were fifteen stairs she could no longer negotiate, and we were relying on a wheelchair and taxis to get her to appointments. The current healthcare system could not accommodate her in an appropriate setting. She was not eligible to stay in acute care as she was chronically ill. Nor was she able to have hospice care as she was not imminently terminal. We had no other option but to place my sister in an aged care facility. While the care there was exceptional, it was entirely unsuited for someone of Trish's age or personality. Entertainment involved balloon tennis, bus rides, 1940s films and Vera Lynn on the radio. She became very depressed, felt she had outlived all usefulness and was a burden to her friends and family. Being brutally honest about her disease, she had already said goodbye to her many friends and was now just lingering. She spent her final two weeks sedated to manage her emotional distress.
Watching my beautiful sister go through this was traumatising for all; her family, her friends, and those who cared for her. While we miss her terribly, we cannot be sad she finally achieved the peace she craved. I believe that if the legislation had been different regarding physician assisted suicide, many people, including me (a registered nurse), would have ended her suffering. This includes her oncologist, her GP, and the gerontologist who were all extremely sympathetic to her plight, but were constrained by current law.
- Eileen Ellard RN BN CCN, January 2017
Sorry to go this way but until the Govt don't pass the law and find a better way to help with the side effects or the pain manage the effects of the side effects that go with it sorry I have no alternative but to go this way
love Ken xxx"
Our beautiful Dad took his own life on Friday 9 October 2015 at the home he shared with mum and Down Syndrome son, Jason. Dad left behind a note expressing his desperation to the end. All he wanted was for someone to help end his suffering so that he could die in peace with dignity which is what he deserved.
Our father/husband Kenneth Stanley Dickson aged 81 was suffering terribly with his third bout of cancer. Although Dad was on a lot of medication there were days when it just wasn’t enough and the side effects of the medications were unbearable. Dad got down to a weight of just 45 kgs. Dad was a true gentleman, loved and respected by everyone who knew him. It hurt Dad’s dignity and pride that his daughters and wife had to shower him and change his soiled pants, but we would do it all again for him tomorrow.
Dad was a devoted and dedicated Christian. Towards the end he became a strong supporter for euthanasia to be legalised in Australia.
What dad went through, especially in the end, was horrific. He made the heartbreaking decision to take his own life hanging himself in the backyard. Jason, who is Down Syndrome, was the one to find dad and that made the situation even worse, if that was possible. Jason is still saying that dad is coming home soon, he just doesn’t understand.
- Family of Ken Dickson: Joan, Julie, Mark, Jo, Christine, Bradley and Jason, February 2017