Emeritus Professor Ian Maddocks is an eminent palliative care specialist and Senior Australian of the Year 2013.
In an online article for MJA InSight, he advocated for more open debate on assisted dying law within the medical profession. In response some doctors stated helping patients die would erode trust in the medical profession.
Submitted by 'semi retired doc' on Tue, 24/11/2015 - 9:13:
There is little discussion in the euthanasia debate about who administers or provides the means to end life. If you provide the patient with the means to end their life then, as their doctor, it is ethically no different to administering it yourself, although it may protect you legally. Once we start this process we are going to lose a fundamental trust from the community in the medical profession that will be almost impossible to regain.
This was Professor Maddocks’ reply on Wed, 25/11/2015 - 9:04:
Dear semi-retired one, I do not fear an erosion of trust if assisting dying under clearly defined circumstances is decriminalised; rather it might increase patient trust. I think of two instances where single aged female patients with terminal cancer died suddenly and unexpectedly at home. I felt sure that they had taken accumulated analgesia/sedatives.
My regret was that they had not been able to share the decision to do that with me, and I was not able to be there to ensure that no disaster of half-death occurred. When I can sit with patient and family through the last hours it is a moving and very comfortable experience for all. These women had to deny that opportunity for themselves, their loved ones and me.
- Emeritus Professor Ian Maddocks, first published in The Damage Done, August 2016
My sister Michelle was originally diagnosed with cervical cancer 12 years before she was re-diagnosed with a cancer called adenocarcinoma. She fought for 18 months, had chemo, which didn’t work, and had to travel from her home to Rockhampton for treatment and follow-up visits.
We watched her slow decline where pain was a constant. She had had a stroke, which affected her ability to walk, and she was unable to talk. She could still write but that was hard to decipher sometimes. She got around using a walker and a mobility scooter. Eventually the cancer was almost everywhere and she finally had to agree to be admitted to hospital, because her pain had become too hard to manage at home.
She had been a nurse so she knew what was to come. She had signed the paperwork for no medical intervention except pain relief. She had prepared to die. For five weeks she ate nothing, willing herself to pass away. Then she wanted pizza, which she had a nibble of. Other than that she had water, ice blocks and ice.
I had promised her that she would not be on her own, so for 10 long weeks we were with her 24 hours a day. Her husband, her daughter, our brother and his wife and I did as I and my niece had promised her we would do. This was done in shifts, with more time falling to my brother and me as it became too much for her family. I include this to show that we were so aware of her pain and suffering because we were there constantly.
Her pain increased as the cancer advanced. She was allergic to morphine. The hardest part was watching her wake from fitful sleep and seeing the look of ‘oh no I’m still here’ on her face. Watching the nursing staff, the majority of whom did their utmost to keep her comfortable, holding back the tears because they could do no more.
Some of these wonderful people had worked with my sister. My sister-in-law, who is a nurse, pressed the buzzer for more and more pain relief when Michelle’s daughter and husband became distraught with watching the pain she was in. I had what is called a Tontine moment, where I was very briefly tempted to put the pillow over her face and press down.
I cannot fully express the horror of watching a loved sister die so wracked by pain, and by law nothing else could be done. Her son, in the end, couldn’t face being there. Her beloved grandchildren were kept away because it would have been too much for them. Her youngest daughter couldn’t bear to come and is now dealing with the grief of losing her mother as well as a sense of guilt.
Sometimes it is beyond comprehension that this is the way we treat our dying. Those who have no hope of cure and in my sister’s case, no peaceful passing because of the pain. She had lost the sight in her right eye and could barely see from her left eye so invasive was the cancer. She had tumours that could be felt on her arms, near her collarbone and on her thighs. She was so frail but she just had to suffer it out. How cruel is that?
- Lyn Godier, first published in The Damage Done, August 2016
She was the first person who ever asked for my medical opinion, so I suppose that made her my first patient, although I was only a final year medical student at the time. She took my advice, and as a result she died as planned. Later I discovered that what I had done was illegal.
Cle was short for Cleonea – the only one I have ever heard of. She said her mother made up the name. Cle was 42, working as a secretary and mother of three boys aged 17, 19 and 22. She was separated from the boys’ father and her de facto partner, Bill, lived with her and the boys.
Three years earlier Cle had undergone an operation for bowel cancer. When she consulted me she had just been told that the cancer had returned, in the form of secondary tumours in her liver and lung. These were discovered during routine antenatal care. A termination at 20 weeks had been performed so that she could access further treatment for her cancer. She understood treatment was unlikely to be curative.
She had many fears about her future and we discussed these at some length. Her greatest fear was of losing control over her body in the final hours and days leading up to her death. She asked me to advise her on a way she could end her life, at a moment of her choosing. She said she would know when that moment came.
I did some research and advised her that an overdose of barbiturate was the best way to achieve a reliable, painless death. Since I could not prescribe for her, I coached her on how she could obtain a supply of barbiturates, for a fictitious insomnia, from her general practitioner. Within a few weeks she had a supply, which she hoarded. I calculated the dose she would require, based on her body weight and the potency of that particular drug. When she had saved enough tablets, she stashed them away in a safe place. She was ready.
Three months later, Cle had tried every avenue she could to find a cure. She had completed the palliative therapy prescribed by her oncologist without any apparent benefit. She had flown to Germany to try laetrile therapy. She had spoken to alternative practitioners at home in Brisbane. Nothing she tried had any benefit.
She became weaker, lost weight, lost energy, and lost hope. She now spent most of her time resting at home, supported by her family. An episode of shortness of breath saw her admitted to hospital with a diagnosis of heart failure brought on by the tumours in her lungs. Oxygen and medication to make her heart beat more strongly relieved her symptoms.
At visiting time that night, her family were treated to a vibrant, energised Cle. She wore make-up, she did her hair and she told jokes and stories, laughing as she had not done for weeks. Each of her family members had time with her alone, to share their thoughts and feelings at an intimate level. When visiting hours were over, she stayed in the hospital and slept well.
The first visitor the following day was her partner, Bill. Cle told him that she had taken the tablets ten minutes earlier. He knew which tablets, and he rushed to a public telephone to call me. Fifteen minutes later when I arrived at the hospital she was dead. No autopsy was performed. Cle was buried a few days later.
I have had many patients since, some of whom have been approaching death. None since Cle has asked me for advice on how best to end their life at a time of their choosing. If and when Nurses and doctors that question comes again, I hope I can help them without fear of prosecution. I believe that laws need to be changed, so that each of us when we face our death can take at least a little control.
As did my first patient, my mother, Cle.
- Dr Michael Cameron, first published in The Damage Done, August 2016
At the age of 73, my mother, Dulcie May Turton, was told she had a neuroendocrine tumour in her abdomen and a life expectancy of two months if she elected not to have chemotherapy. She had suffered a lifetime of major illnesses, but given her history and the prognosis even with treatment, she decided the fight would be too hard, and she chose to die.
Not in my wildest dreams could I have imagined what lay ahead when she made that brave decision. She was transferred to hospital two weeks prior to her death where she was given a blood transfusion, which was in contradiction to her express wishes that nothing be done to prolong her life.
By this stage, the pain was becoming unbearable and she was drugged to the eyeballs all the time. I clearly remember walking into her room with her sitting up in bed pretending to be Tweety bird, saying ‘tweet tweet, tweet tweet’ and laughing hysterically. Her dignity was rapidly disappearing.
My beautiful mother lay in that bed, rotting in front of my eyes for an entire week. Once they stopped taking her obs and said she was nil by mouth, it meant that medications that she had been so heavily dependent on (and was addicted to) were no longer being administered. In my opinion, that sent her into a violent withdrawal and she spent a lot of time thrashing about the bed, crying out, doubling over in pain, showing nothing but horror and agony on her face like an addict withdrawing.
She was starving to death and by this stage was skeletal, and her dehydration was obvious. Her mouth was caked with thrush and because she had suffered very severe respiratory illnesses in her lifetime, the infected mucus was pooling on her chest, further preventing her from breathing.
I spent that whole entire week (day and night) by my mother’s side, speaking on her behalf to try and get her more pain relief or a sip of water (until nil by mouth). In the last couple of days as the infection on her chest took hold and her organs progressively shut down, she was gasping for breath the entire time.
She continued to rot in that bed and I continued to sleep in the room with her and to sit beside her and listen to her every breath in…and every breath out…praying that “My beautiful mother lay in that bed, rotting in front of my eyes ” it would be her last one. Finally, she sat bolt upright in bed and her eyes flashed wide open with a look of terror on her face, then she fell back on the pillow and took her last breath.
The mucus that had been pooling on her chest began to ooze out of her mouth, putrid, green sludge that just kept coming and coming. That last week of her life was like a horror movie. It was entirely obvious that death was unavoidable, yet nothing was done to move it along so she could be spared the futile pain, suffering and indignity that she went through.
Her final days served absolutely no purpose to her or anyone else, and left me with a type of post-traumatic stress from having gone through it with her.
- Sandie Wands, first published in The Damage Done, August 2016
I have melanoma. I’ve kept it at bay for 10 years but it is now untreatable. To me the concept of a good death is at the core of this discussion. I don’t think the desire to die well can be dismissed as akin to a lifestyle choice (an oxymoron if ever there was one).
It is a far more complex desire than that. It is a desire to have some real say in the matter of how you die. It is the desire for your wishes to be respected and acted upon. It is the desire for yourself and your family to be spared futile and unnecessary suffering at the end. It is the desire to be fully present for those you love at the moment you leave them.
This is the kind of death I would choose if I could. It might not be everyone’s idea of a good death, but it is mine. “It is the desire to be fully present for those you love at the moment you leave them ”
Of course it is possible and legal for me to take my own life at any time by whatever means. But a lonely and potentially messy suicide is a difficult prospect to contemplate, and that is the coercive power of the current legal framework. It offers no information, protection, or support for terminally ill people who might choose the kind of death I have described above. Nor does it protect and support their families. In fact it would seek to punish them.
The current system mandates the kind of death where decisions about the timing and manner of dying are made by others, within the framework of a medical system that, to the uninitiated, is unpredictable and obscure. I doubt that anyone who hasn’t been handed down a terminal diagnosis can ever fully grasp the depth of anxiety that the prospect of inevitable death induces.
The loss of your own life is unlike any other kind of loss. Surely it is time for this to be understood, and for the dying to be paid the compliment of assuming that they are capable of intelligent decision-making at the time of their greatest need.
- Cory Taylor, first published in The Damage Done, August 2016
When Channel 7’s Sunrise Facebook page asked viewers if medically assisted dying should be legalised, Denise’s response was emphatic: YES. YES. YES. Anybody who disagrees and considers this murder has obviously not sat there and watched a loved one die a slow, painful and cruel death. They have not seen them cry in pain when the morphine isn’t enough.
They have not seen them gasp for air as they drown in phlegm. They have not sat and watched as their limbs swell with fluid from being bedridden and even cutting their fingernails bringing them to tears. They have not watched as their loved one is reliant on others to spoon-feed them, wipe their noses, roll them over to attend to the bedsores, to clean their faeces, to wipe their tears away. They have not watched a once-proud and self-reliant man lose all his dignity and control and become bedridden as his body has failed him. It is not murder to give a terminally ill person the option of ending the pain earlier.
Denise later wrote in detail of her father’s agonising death: I think it is important that people know Dad’s story, as although he supported the euthanasia choice, it was only in the final weeks of his life that he would have chosen this option, if it was available. Prior to this he fought hard to survive despite many health issues. It all started in 2009 when he underwent a double knee replacement where he unfortunately contracted a serious staph infection.
This resulted in many lengthy hospital admissions and several operations to clean out and replace the parts in his right knee in an attempt to clear the infection. On one occasion we were prepared by the hospital as they did not think he was going to survive the night, but he proved them wrong and nine weeks later he again returned home, although he had to take an assortment of pills each day to keep the infection at bay, as well as regular blood tests to monitor the levels.
It was during one of these admissions that he was also diagnosed with Parkinson’s disease, which also added to the number of tablets he was swallowing each day (Dad thought that he ‘rattled’ due to the number of tablets he had to take). Then in December 2013 I finally convinced him to go see his GP as he had not been feeling well for several weeks. He was immediately admitted back to hospital and an endoscopy showed that his ‘upset tummy’ was in fact an advanced oesophageal cancer at the base of his oesophagus and extending into his stomach.
Due to the staph, he was not a suitable candidate for chemotherapy and the idea of operating was also eliminated as it was a major operation that would involve cracking his chest open and removing a considerable amount of the oesophagus and stomach, which would have been too much for his already unfit condition. All his doctors and specialists (as well as his three daughters) supported this decision, as did Dad, as he knew he was not strong enough to recover from an operation of this size.
It was decided that he would instead undergo a course of radium to try to shrink the tumour enough so he could swallow (and keep) his food down, which he was now unable to do. Unfortunately this treatment did not reduce the tumour, so he continued to lose weight and strength until he eventually was unable to even swallow his own spit.
At this stage Dad knew his time was limited so, in an attempt to hasten his death, he stopped taking his staph medication in the hope the infection would return and end his time on earth quickly and painlessly. Murphy’s law was obviously in play, as this never happened. “He did not pass away peacefully like the movies portray”
His doctors decided to insert a stent to open up the throat enough to allow his spit to get through. This operation was a success, and that night he even managed to eat ‘real food’, albeit mashed. This ‘success’ was only short lived though, as at 2am the next morning he suffered a catastrophic stroke, paralysing him completely down his left side, weakening his right side and leaving him totally bedridden. His speech was slurred and at times he was delusional and would not believe that he was unable to get out of bed, which upset him just as much as it upset us.
He was unable to do anything for himself and was reliant on the nursing staff, my sister and me to feed him, wipe his face, clean him, roll him over, massage his legs and wipe away his 39 Bearing witness tears. As the weeks passed, his pain increased as the fluid built in his limbs and the morphine was not enough. The Parkinson’s was also a factor for his pain as his muscles seized and spasmed.
The doctors tried fentanyl patches, increased his morphine doses and eventually commenced a morphine driver but his pain was still unbearable. He stopped asking the nurses to hoist him into a chair so he could be wheeled outside as the slightest movement would bring him to tears, even when we tried to trim his fingernails. As a tough, rough, old truck driver who was once the strongest man I’ve ever known, this was devastating.
He put up an incredible fight against the staph, Parkinson’s and the cancer, but the stroke robbed him of any quality of life and it was only at this time that he had no fight left and no desire to ‘live’ another day. Dad lived seven weeks and three days after the stroke and this whole time he suffered, both mentally and physically.
He took his last breath with my sister and myself at his side. He did not pass away peacefully like the movies portray though. He drowned in his own phlegm and the noise of this is something I can never describe. His eyes were rolled back in their sockets and he was groaning and gurgling and his breaths were laboured, shallow and frantic.
My sister and I cried at his side, hoping that each breath was his last, but as the hours passed he continued his struggle for air until his body finally gave up and went silent. I hope that Dad’s story can assist to get a law. I just wish it was already a choice so my dad never had to suffer like he did.
- Denise Kapernick, first published in The Damage Done, August 2016
We always knew it would happen. Our father said many times that they treat animals humanely and put them down when there is no hope. He made it clear that this is what he believed should be the choice of human beings, to the point that if necessary he would take his own life. And he did.
On 14 June 1994, our father shot himself in the heart with a rifle. He was in the bedroom; our mother was in the kitchen no more than 5 metres away, my 12-year-old nephew in the lounge. Dad was diagnosed with inoperable prostate cancer at the age of 54 with a 10 to 15 year prognosis. He had always been so healthy and active, and in his words: ‘I’ve always been able to fix anything, but I can’t fix this.’
And so began his long battle with an exploratory operation that ended in a careless removal of the catheter that left him ‘leaking’ constantly, but he didn’t give up due to that little hurdle. He devised his own special ‘nappy’ so that he could continue to play his beloved golf. I don’t think they had Tenas then! I can’t remember the exact point when he started to decline but I do remember distinctly his last couple of months.
He had been admitted to the palliative care ward of our local private hospital and was cared for so wonderfully by the nursing staff. At the beginning, he would entertain other patients, and us when we came to visit, by playing the piano (totally self-taught and unable to read music).
But he was being given painkilling drugs that had him hallucinating and we could sense his frustration at his lack of control. He couldn’t conduct a reasonable conversation when friends came to visit.
Even though he had the best of care at the hospital, he was desperate to come home and in the end refused to go back. I learned after his death that he had begged his doctor to give him enough medication to allow him to safely and gently end his life when he knew all hope was lost.
After the initial grief, the anger set in. Why did he have to do that at home? Why did he choose to do it when his grandson was in the lounge room barely 10 metres away? Why didn’t he give me the chance to say goodbye??? Why wasn’t he allowed to choose his inevitable end??? Why did they make him do this to all of us?????????
In amongst all this anger was a realisation of just how brave he actually was. He had written a note which I still have; a small piece of paper roughly torn from a page, upper case letters, obviously written with a shaking hand: I LOVE YOU ALL. ALWAYS DO YOUR BEST. DAD.
I can only wonder at the beautiful memory we could have had of Dad’s last moments; whether he had chosen to have us present when he passed or not, at least he would have died with the dignity that was rightfully his.
- Di Hatfield, first published in The Damage Done, August 2016
In January 2016 my mother was diagnosed with stage 5 peritoneal cancer - a type of cancer that was both inoperable and terminal. Initially her oncologist said that without chemotherapy she would have “weeks not months” to live, and that without chemotherapy, there was no hope that she would make her 60th wedding anniversary in January 2017.
After accepting the hope that chemotherapy gave to prolong her life, the initial treatment started in early February, and lasted for a period of nine weeks. Every couple of weeks, Mum would get a report from the oncologist, indicating that the progress was “going well”. However at the end of her treatment, the prognosis was that the chemo had made very little difference, if any, and that perhaps a further treatment of a heavier duty chemo might be appropriate. The Doctor advised this may or may not assist, but would also most likely impact on her health adversely for the duration of the treatment, including the normal chemotherapy side effects (hair loss, nausea etc).
At this stage (April 2016) Mum was 83, and decided that enough was enough - and that the treatment she already completed was all that she was prepared to put up with. For the next period she wanted to just be as healthy as possible, not have the side effects that the treatment would inflict. Mum wanted to be with the family. However long she had left.
At that stage palliative care was arranged, with a number of doctors assisting her with pain relief and dealing with the side effects of the cancer including (but not limited to) stomach problems, bowel problems, blood clots and sleeplessness. At one stage she was taking around 20 tablets each day for a range of issues that were the result of her cancer.
While Mum was well for a few months she deteriorated very quickly in late August- early September 2016. During this time, the family watched her waste away in pain and discomfort. It got to the stage where she could not walk and even struggled to eat or drink.
Watching someone go through this period has fundamentally changed my life and approach to how much people can suffer despite the best attempts by doctors. “It’s very hard to die” was the palliative care doctor’s candid assessment of her progress during the last part of her life.
Mum knew that at some stage she would get to a point of not wanting to be around. While some people think that this might be at the diagnosis stage of the illness, Mum had quite a few nice months of a largely comfortable existence enjoying the family, and spending up big on the grandchildren.
Toward the end of her life, while she was still of very sound mind, Mum had clearly had enough of the consequences of her illness, and wanted things to end. She asked me numerous times how she could end her life. We all had to back away for fear of being an accessory to suicide. In the end I got the 3am call from Dad saying that Mum wasn’t breathing well and was coughing up blood. No one should see their loved ones suffer like that. Mum never woke up on that day.
For those caring people who think that assisting someone to die with some level dignity is wrong, I would simply ask that you visit families with loved ones at the later stages of their life. Talk to the families involved in caring for their loved ones. Then talk to the people themselves. Most people will know when it’s time.
So take the time. Legislate properly. Have suitable checks and balances in place. Then maybe no one will have to endure the pain and suffering that our family had to.
- Chris Kable, March 2017
I held my mother's hand until her last breath. She had metastatic melanoma and had faded away to a skeleton. It was horrendous watching her and not being able to do anything to ease her suffering. Following this I nursed my bedridden husband for 18 months while he also, a former big-muscled man, faded away to a skeleton. I do not want to die like these much loved people.
I now have pancreatic cancer - one of the deadliest cancers. The doctors have told me they can give me no further treatment and not to expect a long future. Although I am still alive I am far from healthy. I know that as my end nears, the pain will come and any amount of pain killing treatment will not stop it. Even though there are people who believe it is their lot in life to suffer at the end, I don't believe that palliative care is the answer for me. I can't see the reason for prolonging pain when there is no hope of recovery.
Politicians in particular need to be educated on the end of life suffering of many people and introduce laws that allow doctors to prescribe end of life drugs to people who request it.
- Marjorie Lawrence, January 2017
I was diagnosed with a rare form of Multiple Sclerosis (MS) 25 years ago. It ended my previously successful life as a professional artist, musician, and textile designer with my own business. At that stage there was virtually no help for people with MS in Queensland country areas other than hospitals or nursing homes. A few people with MS gathered together and formed an MS Support Group of which I was a committee member. The group grew at a great rate, showing the need for support for these people. Over the years, I have seen some hundreds of people with all forms of MS from this entire area.
Multiple Sclerosis has as many variations as individuals, unless it is the severe progressive type. This type escalates rapidly, and we see so many younger people condemned to a drastically reduced way of living, often in a nursing home full of elderly people.
Many of our younger progressive people die at an early age in appalling circumstances. Around 70% of people with MS endure extreme pain, be it skeletal or neurological, and yet their brain retains all their personality traits right to the end, even if their bodies are totally paralysed. It's a living death.
I am a trained counsellor, MS contact person and MS Disability Advocate for south-west Queensland, as well as member of other Australia-wide organisations for people with disabilities. One of the questions often discussed with seriously ill people is how a person with terribly progressive MS can end their suffering and pain at the time of their own choosing. Some people with MS have had to resort to the most awful ways to end their lives, without any dignity for themselves or for their families.
Thus I endorse all the good work being done to bring some closure to this mess by making sure good and proper laws are made in Australia to give our seriously ill and disabled people the right to end their suffering as they choose.
- Judith Emmerson James, December 2016
Nominated for Australian of the Year 2012; Queensland MS Advocate of the Year, 2013.