Like many older Australians, a group of residents of Cherry Tree Grove retirement village, were keen to have their voice heard.
They put together a petition to change voluntary euthanasia legislation and invited Andrew Denton to support their campaign.
It says much about Bill Bailey that he joined the British army at seventeen at the start of World War Two, where he served with the tank corps, and was badly wounded in combat. Surviving his injuries, Bill built a remarkable life.
After the war, Bill sailed to Australia with his first wife as Ten Pound Poms. He found work as a school teacher before retraining as a psychologist. He established the La Trobe University’s counselling service in the late 1960s. During this time he worked on the board of Legacy, to support the children of military veterans access scholarships and education that was otherwise out of reach.
When he retired, he set up a practice counselling Vietnam veterans in Gippsland, where there were few services dealing with war-related trauma, alcoholism and family violence. Bill was also active in various social issues of his time: the Vietnam War, nuclear disarmament, later climate change, and in fact euthanasia and voluntary assisted dying, as an early member of Dying With Dignity. He was, for a time, treasurer of the Australian Psychological Society.
It’s fair to say, then, he was a man of principle and courage.
Bill also maintained a keen interest in learning. Up until his death at the age of 93, he studied French with the University of the Third Age. He was part of a Shakespeare reading group. But he lived life, full-on: bottling wine, always eating a piece of chocolate before breakfast, and walking every day. For his birthdays he would treat himself to an adventure – hanggliding, riding a Harley Davidson, and for his 89th birthday he took his grandson on a balloon ride across Melbourne. When he worried that his driver’s licence might be taken off him because of his advancing years, he installed a little motor on his bicycle – evidence of a broader belief in liberty and personal choice.
In his 70s, at a time when economic rationalism and privatisation was fever pitched, he wrote ``Bill Bailey’s Creed,’’ a manifesto for how he wanted to ``live the rest of my days.’’ It included:
- Close to the sea and the country… and close (though not too close) to my family and to my friends
- In a community which embraces many cultures equally, honours many rituals, and changes without undignified haste
- In a society which treats both the old and the young with respect and patience rather than with condescension – which values both the future and the past and where women and men are seen to be equal – and different
- Where the rich pay more in taxes than the needy and where misfortune is not held to be a cause for blame
- In a country in which war is not an option for solving the problems of international corporations and in which trade in armaments is forbidden
- I WOULD LIKE TO END MY DAYS in a community … in which any citizen is free to choose the time and the manner in which they leave it.
Bill was diagnosed with terminal cancer in 2016. By then he’d already recovered from one bout of oesophageal cancer (possibly a result of the cigarettes issued to soldiers during the war) only for it to return and spread to his liver. He made plain to his family that he wanted to be in control of his own death. And so, yes, Bill was something of humanist firebrand.
His daughter Alice says that ``for the last ten years of his life, well before he became sick, he’d been quite obsessed with being able to choose the time and manner of his death. He used to stockpile pills that he’d been prescribed. One day, he took the bag of pills to his GP (to have their efficacy assessed) and the doctor pointed out that many of them were out of date, and they were more likely to make him sick than to help him end his life.’’. He tried making a pipe system to attach to the car exhaust but doubted its efficacy. He even tackled the internet to purchase what he needed, should he want to end his own life.
When it turned out that he was terminally ill, what had been an ideal was now looming as a reality. Alice says, ``It was a lot more complicated than any of us imagined.’’
There was the question of how different members of the family felt about Bill’s determination to carry out a voluntary assisted death. There was also the anxiety of recognising when the time had come, ``cancer being such a gradual thing.’’
By September 2015, however, he had no energy or appetite and was in marked decline. Five months went by. Bill spent a long time weighing up his love of life and for his wife, Kate, with the knowledge that he was increasingly unable to do the things that gave him pleasure. He wanted to make sure that everything was settled – a fresh coat of paint on the house, the car tyres replaced, all his affairs in order. Alice believes her father hung on for longer than he wished, so that his family were also ready for him to leave. In the meantime, he took comfort in knowing that he had the means to end his life at any point.
In February 2016, his GP told his family that he no longer needed to eat or drink. It was, says Alice, the doctor’s way of saying that her was father was ready to go. ``She knew clearly what Dad’s wishes were.’’ On the night of his death, the doctor rang Bill to say goodbye and told Alice that over the years she had learnt so much from their lively discussions about politics, life and dying.
That Friday, Bill read an article in the paper about assisted dying, and although he could barely hold a pen, he furiously insisted on sitting up and writing a letter to the paper in response. Alice explained that the letter, if it were to be published, would not be until the following Monday. She said ``It was as if he decided to wait until then. The next day, this strong, vital man could only crawl, and was in excruciating pain. But when I arrived on Monday, he was calm and comfortable, sitting next to that day’s paper, and there was his piece in the letters pages.’’
``I am 93 and fighting a losing battle with cancer. I applaud the sentiments in recent letters about assisted dying and Andrew Denton’s article (Other countries understand euthanasia. We don’t’’, Comment, 25/2). Even after experiencing the wonderful patience, skill and medication from my GP, specialist and hospital staff, and the care of my loving family, the cancer will win. But I believe I alone should decide when and where I should end my life. It is, after all, my life. If Denton’s statistic of 70 per cent of Australians who agree that assisted dying should be a right, a law should be presented to the Parliament, and passed in both houses. That is what democracy means – the will of the people.
Bill Bailey, Canterbury.’’
After seeing his letter published, Bill simply said “Today is the day.” He was by this time very ill, sleeping much of the time. His family gathered and it was a gentle day. There were candles burning and music playing. “Before Bill ended his life, each of us said goodbye and checked, and double-checked that he was ready, and wanting to end his life. Mustering an energy from deep within, he sat up and clearly said “Yes”.” Bill ended his life by his own hands, quickly and peacefully. He was perhaps only days away from dying, but he was able to end his life as he wrote in his creed, in the time and the manner that he chose.
4th September 2017
Dear Member Of Parliament
I write to you not as your local constituent but as a member of the wider community, to convey a story which is all too prevalent within your local community. This has been the most difficult letter I have ever written and I ask that you read it through to the end.
This story is a celebration of life and love and a testament on how to live while dying. This is my father’s story, a story of how he shared laughter and love every possible moment for as long as he could, but sadly it is also a story of suffering and cruelty.
John Parker lived his life as a selfless advocate for the rights of others. He loved, and was loved by many, and taught us about integrity, social justice, compassion, leadership and patience but most of all he taught us to laugh and love.
Dad was 64 and in the throes of planning his retirement when on 10th May 2013 he was diagnosed with Motor Neurone Disease (MND), with the prognosis of 1 to 5 years life expectancy. For all who knew and loved him this was devastating news – we feared for him and the journey he was about to endure.
But it was Dad who made it easier on all of us. He believed that you never know what life has in store for you, and you just have to work through what you’re presented with and make each day count. Of course, this is exactly what he did, and he wrapped it all up in his infectious sense of humour.
Dad kept working for as long as he could however due to his deteriorating health he finished up work and arranged house renovations for his future needs. At this point he had started using leg splints and crutches to move around but nothing was going to stop him from achieving his and Mum’s dream of seeing more of the Australia that they loved. So in April 2014 they set off travelling in their caravan.
Just a few weeks into their journey, on the 10th May 2014, while in Hervey Bay Qld. Dad was taken to the Emergency Department of the local hospital. He was experiencing numbness down his left arm with a burning sensation towards his fingers, accompanied by dangerously high blood pressure which was hard to bring under control. He was eventually airlifted to the Prince Charles Hospital in Brisbane, where he was examined over several days for suspected heart problems. A full body scan was carried out, and a growth was found in his brain. He was referred to the Royal Brisbane Hospital where he was diagnosed with a brain tumour in a location that was easy to be removed. He was told that without treatment, he could expect to live 3-12 months, with treatment his life expectancy was anywhere from 18 months to five years, and this was based on the tumour alone.
He underwent surgery and the tumour was formally diagnosed as a Stage 4 Glioblastoma Multiforme, the most aggressive of all brain tumours.
Dad’s outlook on life didn’t wain and he chose to have both surgery and treatment. At this stage, he had no pain and he wanted to live as long as he could.
Dad underwent chemo and radiation treatments but unfortunately in April 2015 another tumour was detected and he was given a radiation treatment. Determined to keep travelling they set off again in May 2015 and were supported by his brother and sister-in-law. Travelling was now quite difficult for both Mum and Dad, as Dad was in need of more physical and mechanical assistance.
In July 2015, they returned home for medical appointments where it was identified that the remaining tumour was dead in the centre but the outside was still active. However, after a few weeks at home they decided to return to holidaying.
Since his MND diagnosis in 2013 and during this period Dad’s MND progressed up his legs, into his chest, throat and arms. He went from using walking sticks, to crutches, to a scooter, and finally a motorised wheelchair as his strength in his muscles deteriorated.
Dad had notably deteriorated by the time they returned from their travels in September with less core strength to hold himself upright. He was now more reliant on his ventilator due to the muscles weakening around his lungs which meant his lungs wouldn’t inflate. He had previously only required this when he was resting in his chair or at night.
Dad’s reduced strength meant that he required assistance, even to move slightly in his chair to relieve the pain of pressure from sitting. We would do this as a team, grabbing him by his pants on the front and back and lifting him. Dad wanted his legs stretched and his knees bent to relieve the stiffness, this was also painful.
In mid-October Dad was at serious risk of pneumonia as he did not have the strength to cough up the phlegm from a simple cold. On his way to hospital with breathing difficulty, Dad described to the ambulance officers what he thought was an anxiety attack about his inability to breathe, as well as a fear of falling when being lifted using a hoist or being rolled over in bed.
Around this same time, it was apparent to those around him that something else was occurring as Dad’s speech became more slurred and the left side of his lip was starting to droop. It was assumed to be a result of the brain tumour. On 21 October 2015 after a follow up MRI, Dad was told that the tumour he had been treated for in April had now doubled in size. Treatment was no longer offered. Just 7 days later Mum was advised that the tumour was 3.5 x 5.1 x 4.3 cm in size and that we should be planning for a Christmas with Dad in November.
During October and November Dad became even more reliant on the ventilator and needed it most of the time. However, as the muscles weakened in his throat and voice box, he was less able to project his voice, and communicating his needs through the ventilator’s mask was even more difficult. He was constantly sucking on lozenges as his lack of saliva production led to a constantly dry mouth. He was now incontinent and also required support to eat and drink.
In the 3 days before he went to hospital, Dad developed a severe bladder infection and also had an enlarged prostate. On 10 November 2015, in significant pain from his UTI, Dad was admitted to Calvary Health Care Bethlehem Caulfield (specialist MND hospital) where his pain and deteriorating condition was managed. On arrival at the hospital, we were told to prepare for Dad to pass at any time. His kidneys were starting to shut down and he was passing a significant amount of blood through his urine.
Dad was in hospital for another 18 days until he passed, and over that time he deteriorated such that he could no longer eat, his inability to swallow put him at risk of choking and he didn’t have the strength to cough anything up. His bowels had become impacted and he was no longer able to suck on lozenges to relieve his dry mouth which now required regular wetting with a sponge but this had to be done quickly as he needed his mask on to breathe. He had lost all movement apart from his right arm but eventually even this reduced to a ‘thumbs up or down’, or a squeeze.
He was in pain from not being able to move his body and then in pain from being gently moved and stretched. Eventually, he was unable to express if he needed moving, what he wanted moved, if the pain from being moved was too much or what else might be hurting. This inability to communicate was due to the MND and brain tumour and not that he was unconscious or heavily medicated. One day my brother and I were sitting next to Dad and heard him making noises but we weren’t sure if he was in pain or if he was upset. From a ‘thumbs up or down’ we were able to establish that he was upset and crying, which was the first time throughout his journey that we had witnessed him cry. We did not feel we were able to offer much comfort as we could not determine if they were tears of fear or tears of pain or if in fact he had something he wanted to say.
On 21 November, 7 days before he died, Dad developed small blisters around his right eye, which were diagnosed as shingles. The blisters spread down part of his face and although he was not able to communicate, the pain he was feeling was obvious as the mask he needed for breathing lay directly across the shingle blisters. Upon checking Dad’s swollen eye, the doctors advised us that as a result of the shingles, an abscess was eroding the back of his eyeball. His medication was increased to deal with the pain.
During his final two days, Dad pushed off his breathing mask and survived on extremely shallow breaths. On the day of his passing I asked the nurse if today would be the day as his fingertips were turning purple due to a lack of oxygen. She said that it would be, and it was.
Dad died on 28November 2015 in a room filled with love.
I am not sure what choices Dad would have made as he prepared for his death, but I absolutely know he would have supported others in their right to make the most personal and the most difficult decision anyone has to make. Fortunately, Dad never had to watch a loved one suffer in the way he suffered, but I know him and I know if he had, he would be co-signing this letter with me.
Dad showed an amazing ability to love and laugh and he shared that love and laughter until he could no longer squeeze our hands or put up his thumb. He did this for us, to make our journey of watching him endure two terminal illnesses a bit easier. It saddens me deeply that he was not given any choices regarding how he might want to spend the last days or weeks of his life. He may have chosen to do nothing differently but that in itself is a choice to which he should be entitled. Life is about choices and death is a part of life.
We are also aware that even though Dad was diagnosed with two terminal illnesses he was extremely lucky. He was lucky to have had minimal pain until the last month of his life and he was lucky that the MND started in his toe and slowly worked its way up his body. For many, pain is not absent and the inability to swallow, communicate, move and breathe from MND or any terminal illness can occur quickly and be a prolonged traumatic journey.
Of course, I would rather not have watched Dad suffer as he did, and I would rather not have the reasons to feel as passionately about this legislation as I do, but our family and many others have lost loved ones in this way.
I encourage you to support the Voluntary Assisted Dying legislation that is being presented shortly to State Parliament and to lead the way in this country in providing end of life choices to people who are terminally ill.
If you would like to discuss this letter with me please don’t hesitate to call me.
CC. All Members of the Parliament of Victoria
Ian Smith, as told by his daughter Julie Wearing-Smith
On 2 September 2015, after writing a letter each to my brother and me, compiling a list of people and services to contact, and writing a letter to the police, my father set about the lonely business of ending his life. It would have taken him some time to set everything in place and I can only imagine how alone he felt. He’d planned an easier ending that in the end he was unable to facilitate.
Dad was 86 years old on the day he became a Queensland Masters Squash Champion in June 2014. A month later, he was diagnosed with Multiple Myeloma. He drove himself to the hospital and only phoned me when he realized something was ``really serious’’; his neighbours told me he had been noticeably unwell over a period of weeks but still self-caring and determinedly riding his push bike to the shops, (albeit with a serious wobble.
Before the diagnosis, Dad, a Queenslander, had climbed all the Glass House Mountains; at least once a week he rode the 12 kms to Mt. Coolum and climbed it to ``keep fit’’, even when it was officially closed due to a rock fall. (Dad was always a rebel). He swam regularly at Mooloolaba. When we visited, we saw him swim out toward the rock wall, just a little head bobbing in the distance. We always assumed that Dad’s passing would be related to his many sporting activities; he was just so fit. He was a wonderful father; my brother and I are very lucky to have had such a kind, strong and loving father.
From his early seventies Dad had attended euthanasia seminars. I remember seeing him on the news, sitting in a seminar. He’d always been adamant that he would never go into care.
Dad was never depressed; he was a fighter and he battled that disease. But he could not bear to lose his autonomy; this to him would be a complete loss of self-dignity. For Dad anything less than being able to care for himself, to walk with ease, to cook without dropping things, anything less was not a good quality of life. To have carers washing him, to lie in a bed for weeks at a time, to be incontinent or incapacitated was not part of his life plan.
I had been staying with Dad, leaving to come home eight days before he decided to take his last journey. He was very unwell; he could only walk a few steps without becoming incredibly breathless and distressed. We had a beautiful weekend in spite of this; I asked him to return home with me and encouraged him to come: he could have lots of good company, I would ensure he would be comfortable and cared for.
``Dad, I am really good at palliative care, I have lots of experience,’’ I said.
He smiled at me, then gently declined. He also refused to let me stay on in Queensland to look after him. When we said goodbye at Maroochydore airport, Dad said a very final good bye; he left me with no doubt that this would be the last time we would be together. I cupped his face in my hands and cried; the flight home was very hard. Dad saw the oncologist again a couple of days later; he was told that there was nothing more they could do: he was now ``palliative’’.
Although Dad had always said he would choose his moment to die, it just seems so surreal. It was a very hard time.
I can only think that on 2 September 2015, or perhaps the day before, he realised he was deteriorating very quickly. He had to act quickly or he’d have been too ill to carry out his elaborate plan. The loneliness of it appalls me. Devastating for all of us; nonetheless I feel very proud to have had a father who was so sure about what he wanted and so brave.
Australian politicians must address the need for legislation to allow voluntary assisted dying – the right for a terminally ill individual to make their end of life decision. If VAD (with stringent regulation) had been legal, it would have meant that Dad could have chosen to have his family with him on the days prior and at the time of his death.
He could simply have swallowed a tablet (legally obtained) and been in our loving company at the end. It would have meant that his lovely elderly neighbours would not have had the confronting experience of finding him deceased, with the equipment in place.
A terminally ill person should not be forced to take their life before they really need to; at present that is the only way to ensure that one is physically able to proceed. Palliative care should definitely be a choice; for many people this is the death they wish to have. But for others, like Dad who are terminally ill, to die with dignity at the time of their choice is the only acceptable outcome.
I’m sitting here in tears because I don’t even know where to start, I cannot understand as human beings how we can let people suffer when there is something we can do about it.
Over the past seven years my family has gone through hell watching loved ones suffer. I’ve lost three grandparents, an aunty and a close friend and they all suffered in the end, some more than others.
I try so much to remember all the good times I’ve had with them all but unfortunately their suffering and my feeling of helplessness overrides that. It’s hard not to wish that I had been able to do something to help them.
My grandfather was the first to go, he had cancer and it spread to his brain. I remember lying on the bed with him at his home looking at photos and laughing, then he screamed in pain. His whole body was tense and you could see the tears running down his face from the pain, I cried with him. He told me that if he was a dog I would be charged with cruelty for letting him go on like this. Pa was put into hospital and lived for another few months and the pain and suffering got worse, the more advanced the cancer got on his brain the more my grandfather became someone I didn’t recognise mentally and physically.
My grandfather was a very intelligent, kind and artistic man who died a very confused, agitated and nasty man of skin and bones. He would have been so ashamed of that.
My beautiful independent aunty was diagnosed with Motor Neurone Disease. It took them 16 months to diagnose it and she died within 7 months, she was only 62. I’m not even sure I can put into words how debilitating this disease is and to watch someone go through it knowing there is no hope is just heart breaking. The problem with this disease is that your mind is still perfect but your body lets you down.
My aunty was put into care and we would visit regularly. I will never forget the day when I went to see her (at this stage she couldn’t talk anymore and was getting fed through a PEG) she was just lying in bed and when I walked in the door she didn’t even smile. She always smiled when I saw her. She leant over to get her note pad and her gown slipped off her back a bit, I could see her spine and it looked like something from a horror movie. I still have nightmares of it. She got her note pad and wrote “I wish I was brave enough and capable to stop this”. She died alone in palliative care, in pain and not surrounded by people that love her. How can this be right?
My other grandfather died on the 3rd September 2016. This broke me. It’s the first time in my life that I thought I could actually kill another person.
These are just a few things and feeling that we went through over the years, it’s hard to put it all into words. I must tell you that all the doctors, nurses and care staff that we have dealt with over the years have been amazing and I feel sorry for them as well, it must be very frustrating to watch people suffer knowing they would do something if they were allowed.
My pa and I always had a special bond, I just adored him. He fought in World War II and was my hero.
Our laws need to be changed, it’s as simple as that.
My family is forever changed from what we’ve experienced and unless you’ve been through anything like this your really have no idea how heartbreaking it is.
I will do as much as I can to support euthanasia so that other people don’t have to go through this.
I myself am not scared of death but I’m petrified to think that I could suffer like they did.
The photo is of my grandfather and myself marching in Melbourne for Anzac Day a few years ago, he was so happy.
As a young bloke, my Dad was a talented sports-person. He played football with the Melbourne Football Club and was recruited in the middle of the late 1950s dynasty. He started in the under 18s, where he came second in the best and fairest, before working his way up to eventually play two senior games. After that he played five years in the VFA for Waverley, and was a part of their only Division One premiership.
He grew up in Wantirna South, with the Ingwersen family one of the founding families in the district. He was involved in the local cricket club and association, and was made a life member at the age of 27 for his work in growing the game.
Mainly, though, he lived for his family; he was a very family-oriented person. He was the father of three boys and wanted us to have a life in the country. He worked for over 30 years for the State Electricity Commission, starting out as a clerk in the accounts department in the city, before transferring to the Latrobe Valley where he worked at each of the power stations. He ended up overseeing multi-million dollar construction contracts at Loy Yang, before working in business with my middle brother.
One of my Dad’s strengths was being a straight shooter, even if politically incorrect at times. When the topic of voluntary euthanasia for terminally ill people, or those in vegetative states, came up in conversation he always said, “I don’t want to be one of those poor bastards.” By that he meant, being stuck in a situation where he had no control over his life. “If I ever get to that point, just push the wheelchair off the cliff.” That was always his attitude as long as any of us can remember. He’d say: “I don’t understand why we can put down a terminally sick animal but we can’t do the same thing for a person.”
Dad contracted Motor Neurone Disease in late 2015. The average lifespan once diagnosed is two years, though some people can get four or five years, or even longer. It killed Dad in nine months (he always was impatient). His first symptom was about 11 months before he died, just before Christmas 2015, when he was complaining that his left hand was going weak. It was April before he got the official diagnosis from an MND specialist. He died in September 2016.
My parents were divorced so it was down to my brothers and me to make sure Dad was okay, and that his care was right. But we also knew what the end point was, and what his beliefs were around terminal illness. So when he was given the final diagnosis we sat down with him and had the hardest conversation I’ve had in my life. We said, “The diagnosis is you are going to die, and there is nothing we can do about it. If you want to end it early, we fully support you and understand, but the only person who can do it at the moment is you. If we could help you, we would. But if we do, we’re in the shit big time.” As hard as it was, I’ve never been prouder to be an Ingwersen – taking the challenges you are dealt and facing them head on. At that stage, though, he wanted to hang in there in case a magic cure came along.
In his last month, he deteriorated really quickly. In his last week alone, his care plan changed five times. The way he was living then, being hoisted in and out of bed and his seat, he wouldn’t have wanted to keep on with it. In the end the speed with which this horrible disease took Dad’s life meant he didn’t suffer as long as many do, and for that we are almost thankful. I don’t know for sure if he’d had the option of voluntary euthanasia whether he would have gone through with it, but I know for certain it would have been a great comfort for him to have known that option was available. It was the kind of death you wouldn’t want to wish on anybody, and one we hated seeing him suffer through.
Beverley Randall didn't tell her family when she was diagnosed with lung cancer because she didn't want to worry them.
She kept it a secret until her health began to deteriorate and her daughter Eleanor Marsh stepped in to help.
“I used to bath her with my five-month old son, as she could no longer do this anymore. She lay in bed all day, suffering, while we watched her slowly get worse.
Eleanor remembers her mother as strong, independent and caring. But Beverley's last days were harrowing.
“It was a horrible experience watching my mum go through it", Eleanor says, "I just wished I could help her.”
“She wasn't the type of person to put any pressure on anyone else to look after her. She hated relying on other people.”
The last eight days of Beverley's life were horrific for Eleanor and her brother as they witnessed their mother slowly deteriorate.
“It was the most horrifying and painful eight days of my life, and hers. I was told on the first day that she would die and it was just a matter of hours. But she didn't, she lay gasping for air on a ventilator that was forcing her lungs open.
“My brother and I were there through the eight days, and we just wanted her to pass because we could see her suffering,” she says. “She was not conscious enough to talk but conscious enough just to breathe and moan. It was horrible.”
When doctors finally removed Beverley's oxygen mask, Eleanor and her brother watched as she struggled for air. “At one point she was saying help me, help me. I gave her a drawing board so she could write down what she was saying, it was all scrambled, but I could still read it, it said "Endone", which was her daily medication that helped ease her pain. The doctors wouldn't give it to her. They had taken her off all medications, because she was dying.
“All they could do was supply her with intravenous morphine. Each dose was every two hours, and when it would wear off my mum would start moaning and her eyes would roll. It was so painful to watch.
“I know that her body had started to shut down, as there was only blood in her urine catheter. In the end, at day eight, I asked them if there was anything more they could do. The nurse came in and took off her oxygen mask, we then watched my mum painfully take her last breaths, and then giving up.
“It took about five minutes of her gasping. We watched her take her last breath.”
Eleanor says her mum endured an unnecessarily cruel and painful death. She wants the laws in Victoria to change so that those faced with terminal illness can die peacefully.
“Voluntary assisted dying should be available. No one should have to suffer like that. I wish it had have been around for my mum.”
“I promise you, you will not suffer at the end.” These words will resonate in my ears forever. After delivering a death sentence of Motor Neurone Disease, these few supposedly comforting words, delivered by a Neurologist, would become the only ray of light that we could focus on amidst a bleak, dark and devastating diagnosis. In hindsight we should have asked to have the word ‘suffering’ defined. There were a multitude of questions we could have asked and perhaps should have asked, but amidst the grief, shock and numbness, cognitive thought too is severely impacted.
As my mother’s MND progressed we were, on several other occasions, assured that her death would be comfortable and pain free. We placed our trust, and in fact our mother’s life, in a system which only now I can say failed her dismally.
As a retired nurse and having been passionate about End of Life Care issues for many years I was only too aware of the contentious issues associated with this highly emotive topic. I can now only berate myself for not having objectively assessed mum’s situation and asked, what I now reflect upon to be crucial questions. As it was my dear beautiful mum went to Palliative Care to die. Her and our intention and understanding was that she would be cared for right up until the moment of death. And up until a few days before her death I cannot emphasise how exemplary her care was. I will remember every nurse that so gently and respectfully tended to mum.
Not for one moment did we envisage that her death would be peaceful and calm, MND is a hideous disease, but not for a second did we envisage the horrific, inhumane and tortuous death to which she would succumb.
As mum became weaker and we were forced to acknowledge that she was actually dying we met with the Palliative Care Team. An important issue I do wish to emphasise here is that upon admission to Palliative Care, mum was no longer under the care of her 2 Neurologists but the Palliative Care Specialist. Yet again we were assured that mum would not suffer in the end and that terminal sedation would provide mum with the least amount of pain and discomfort. She would supposedly be given adequate sedation to prevent any pain or associated anxiety. She would not, we were told, experience any thirst or hunger as a result of the withdrawal of fluids and nutritional supplements. I promise you, you will not suffer at the end.
I cannot precisely remember every moment of mum’s last few days. Most probably this is a survival mechanism as what I can remember will be seared in my memory forever. Mum did suffer. She had pain, breakthrough pain, because her prescribed dose was one unable to adequately palliate her pain at all times. She managed to express to us her fear and in one of her conscious moments was able to convey to us that she wanted to be fed through her PEG tube. This was so very traumatic for all of us, many staff included. However, orders were relayed to us by equally distressed staff that we should inform mum that she was not to be fed. Why should we have been expected to inform our dying mother that we could not fulfil a dying wish? We were overwrought with distress and after a period of great torment a very upset staff member allowed us to give her a meagre amount of Milo stained water. I found and still do find this abhorrent. We had been assured that mum would be devoid of hunger and thirst but no, the dying process is not a templated one and whilst her case may have been unusual it was nevertheless real and it was happening to my mother. All that could be done was to deceive her in an attempt to pacify her. I felt like a traitor a failure to my dear mother, having to deceive this person who had never uttered a dishonest word in her life and had spent her whole life looking after and caring for others.
Mum suffered what I deem to be unnecessarily for days. Family members requested that her analgesia be increased. A request I made pleading for her analgesia to be substantially increased even if it meant hastening her obviously imminent death was directly replied to by the question “Are you asking me to kill her?” No, I was not trying to have my mother murdered I simply wanted her tortuous pain and existential suffering to end.
Her last few days will be etched in our minds forever. Falling victim to MND was the cruellest twist of nature but helplessly watching mum suffer unnecessarily was unforgiveable. We are told that death can be peaceful and that we should not fear it but no one, even staff members, could leave her bedside unscathed. We chose not to allow young grandchildren and close friends to see mum in her final hours. Such a scene would have been too traumatic for them and we did not want them to see this beautiful, gentle and forever nurturing mother dying devoid of the dignity she should have been provided. This hideously prolonged death was visually ugly and this once beautiful, vibrant and radiant individual should not have been subjected to the haunting and unforgettable images that we were privy to. Images that I cannot and do not want to share. Mum’s death taught all that knew her that death can be something to fear and in fact be very much afraid of. Our last memories of her will be seared in our minds and etched into our memories forever. I do not think they will ever fade but hopefully we will learn to live alongside them and allow the wonderful memories of our beautiful mum to shine.
I am angry, extremely angry. We live in a city in a country which we consider to be progressive, a world leader in many fields of science, technology and communication. Yet we are unable to provide for our terminally ill a compassionate, caring and humane way to die. Faced with imminent death it should be a basic human right for a competent individual to decide the manner and timing of their death.
To end suffering when palliative care cannot is not an act of killing, it is an act of compassion and love and one that we should all aspire to. My beautiful mum did not deserve to die the way she did.
I promise you, she did suffer at the end.
My life partner, Mark Brennan, was born in 1948, and ended his life on 9 February 2014. After years of being a carer I am confronted by photographs that resurfaced at the celebration of Marks life (don't dare say the word funeral) and I remember the man I fell in love with. The mad curly hair. The cheeky smile. The songs by the fire. The conversations. The moonlit sailing. The urge to be with him, the urge that turned into an obsession as his health failed. The urge that had me always wanting to get back home to see how he was, the urge that now even now won’t go away. It keeps me in the house. I’m still not able to do the travel that we missed out on. This all sounds very indulgent doesn't it? What I am trying to say is that Mark’s death did not end with Mark’s death, the ripples continue. I am still unable to cope with the way he died. It was our current laws that dictated that he took his life and what happened after.
Mark was born in 1948, in Great Britain, and moved here with his family when he was 11 years of age so his father could take up a position at Sydney University. After training at the Sydney Conservatorium on trumpet as a young teen, with the prospect of a position in the Sydney Symphony, Mark decided he wanted music to be a pleasure, not a career, and went to university to study law. He eventually turned to teacher education, lecturing at Charles Sturt University in Wagga Wagga. He published books pertaining to linguistics and the law, he also ran courses in Judge Education, and was a pioneer in adult literacy courses.
After a series of unfortunate accidents and illnesses over the course of some years in his early 40s, Mark was diagnosed with multiple sclerosis (MS) and ankylosing spondylitis. His professional career was cut short, and he moved to Raymond Island in the Gippsland Lakes. He set up a choir on the island; this is where we met and after a few years our relationship began, at the tail end of the 20th century.
Mark set up his own small publishing business, Wind and Water Press. He wrote and published poetry and also edited and published the works of others. As his ability to work complex tasks diminished, he turned to his more creative side and took up bookbinding, making quality art books and journals for writers and artists. He also greatly enjoyed restoring old books. People would bring their most treasured family books for Mark to repair.
I guess people who are not familiar with the intimacies of MS could think that it’s just about people whose legs don’t work anymore. MS is a mystery illness, it manifests differently for everyone. Mark’s walking and balance were affected and were the most obvious symptom. His feet and toes had no feeling, and while he still could walk, he would walk barefoot down the street to our boat and not notice he had taken chunks out of his skin on the rough gravel road. In contrast to his feet, his skin elsewhere became extremely sensitive, making wearing clothes uncomfortable.
Mark experienced shooting pains through the left side of his body. He had spasms that often came at night. He had short sharp pains that would wake him. Pains under the skin that he called snakes and spiders. He had bladder infections. He gradually became incontinent. His bowels stopped working and he relied on fierce medications, which would suddenly send him exploding to the toilet, too bad if you were out and about! Some days his eyes were reluctant to focus.
Mark had been in the care of the same GP for probably about 12 years. Mark’s GP knew he was a voluntary euthanasia advocate. He had always planned to not live forever in a body that did not work. He had an incredible fear of being stuck in a nursing home. He did not want to get to the stage Lawrie (see Lawrie's Letter) describes — trapped in a body and they would keep him alive. They would have kept him alive for decades.
He had a good relationship with his GP. His GP always knew what Mark’s intentions were at some stage. I always knew what Mark’s intentions were at some stage. I did not know whether he would actually go through with it. It was a surprise but not a surprise. A long-term, longstanding relationship with a GP who knows your intentions and can help you along, and when you get to the point when you can no longer bear living, then perhaps the GP could come along, you could have family with you, and you could go peacefully, with dignity, without violent means and in a loving environment.
By December 2013 he was assessed as high needs which meant if he was admitted to nursing care he would have been in the high care side of the nursing home, and they would have kept him alive against his wishes. The most devastating loss to him was when he began to lose the dexterity of his hands. He never complained about pain but experienced a lot. Towards the end he was unable to sleep in a bed due to the pain and spasms when he lay down. He slept in an electric recliner chair.
During my appearance before the 9 September 2015 Standing Committee on Legal and Social Issues 43, I was asked how things might have resolved in the immediate term around Mark’s death if it had Voluntary Assisted Dying had been legal?
I said that if it had been legal, Mark, quite possibly, could still be alive. But he had gotten to a stage where he was having trouble using his hands, so he was at a stage where perhaps he would not be able to kill himself very soon. If he was able to legally end his life, he may be still alive. If he was able to legally end his life, he could have spent time with his children. He could have spent time with me. I could have been with him.
I was also asked if, ahead of the coroner’s report, did I ever feel at risk during that time I would somehow be seen as being guilty?
In a way, I was lucky. Because we lived on Raymond Island and there was a ferry service — lucky — I went off to the market. Mark said he would not go because it was going to be a hot day, and he did not want to be out in the heat. I said, ‘`I’ll go, I’ll pop over, I’ll get some fruit and vegies and I’ll come straight back’’, so there were people who saw me go to the market. There were people who saw me at the market. The ferry driver saw me go and come back. They knew that I was not there.
The police were very good. They were wonderful, but there were weeks and weeks where I just did not know whether I was going to be implicated. I had fears that there might be a problem. Mark left a note, and he said things in his note like, ‘This is why I had to do it without your assistance’, so he was leaving messages. I am sure he was leaving messages for the police really, not me, but yes, there were times when I worried. That is why he did it when I was not there, because he was protecting me. You see it on the news. People get arrested. If I had been there, I would not have stopped him. But Mark died alone and without a word of goodbye because he had to protect me.
Andrew Carswell was an award-winning musician with innovative bands such as Not Drowning, Waving and My Friend The Chocolate Cake. In 2016, when his liver cancer quickly turned terminal, and with symptoms escalating, he left the home that he shared with his wife, Carolyne Thompson, drove alone to their holiday home, and attempted to take his own life, while he still had the physical capability of doing so. He left a note of apology. The attempt failed after intervention by the police and Andrew was hospitalised. Because his liver had shrunk almost to nothing, it was unable to tolerate medication that would otherwise alleviate his nausea and make him comfortable. His wife Carolyne says now:
`` He was forced to confront the lie that with palliative care, there is a ceiling level. It might work for some, but not for everyone.
``What followed in the hospital was a two-day farce. The medication wasn’t helping his nausea, because his liver wasn’t big enough to process it. Nothing was working. One emergency doctor told me he’d probably done enough damage to kill himself – but somehow hadn’t. Another young doctor wanted me to get him a psychiatrist – he reckoned Andrew could be like this for weeks or months. He also wanted to bring in a plastic surgeon to fix up his wrists. It was such a joke. Another doctor called his oncologist and they decided he’d be dead in 24 hours.’’
Andrew Carswell didn’t want a funeral, he didn’t want anyone to know he’d died. He said to scatter his ashes around the rose bushes, where he and his wife sat in the evenings for a drink before dinner. He said not to put anything in the newspaper, but Carolyne felt it important to have published, on the obituaries page, the following:
Andrew Ross Carswell, a skilled musician, at times tedious intellectual, much loved friend of many, valued family member, and adored husband to Carolyne, died an unnecessarily protracted, distressing death on Sunday 13 March as a result of the continuing absence of legislation that could have otherwise allowed a man of his integrity experiencing the final stages of liver cancer peaceful, timely access to euthanasia. May he finally be able to enjoy the long sleep he had been anticipating and may the anti-euthanasia lobby collectively experience the tediously prolonged, objectionable demise they are so determined to impose on everyone else.
Carolyne says now: ``We knew it was going to be a hideous demise. He was forced to try and kill himself, while he still had the ability to carry it out. You can suddenly become incapacitated and have the last shred of control over this matter taken away from you.’’