I have been a practicing GP for close to 30 years after several years working in the hospital system. My wife died of pancreatic cancer aged 54 in 2010, and my mother died of stomach cancer in 2012.
I have witnessed the illness, suffering and deaths of many patients over the years. Many deaths have been well managed with palliative care but there is a misconception that modern palliative care can alleviate most suffering and allow a dignified and reasonably comfortable death in nearly all cases.
This is simply not so. The vision of a dying patient on a morphine drip surrounded by family and slipping away peacefully is not the reality in a significant proportion of patients. Patients can suffer both physically, psychologically and existentially for weeks or months and can die in great suffering, often alone in the middle of the night and often in confusion, fear and distress gasping for breath or choking on their own fluids.
But for the sake of a small proportion of the community who will not accept a more humane way (including some doctors), this is how things will continue. In my mother’s case of linitis plastica (a form of stomach cancer), she had absolutely intractable and intolerable nausea and could not eat, and this was not adequately palliated despite maximum involvement of palliative care services.
It was dreadful to see her suffer without adequate relief. She asked me several times to be put out of her misery but she had to endure it to the end. I can recall several other patients who were unable to be adequately palliated. In particular, I vividly recall one unfortunate young woman. She was dying of advanced vulval cancer and had the most awful ulceration with severe pain at the slightest movement or touch and offensive discharge, bleeding and odour.
Fifteen years on her suffering still makes me feel sick. Nothing except death gave her release and death did not come peacefully despite morphine and palliative care. Patients dying of advanced motor neurone disease are also faced with unbearable suffering, witnessing in full alertness a body that is paralysed and fearing choking to death as they lose every last vestige of independence and dignity.
For some this is intolerable, yet our society demands that they endure the full course of their illness no matter what their wishes. Why allow intolerable suffering when it is within our power to give people a choice to relieve it? My experience convinces me that I would want that choice. Many doctors feel the same and are placed in legal limbo by placing relief of suffering above the anachronistic laws in this state.
I have seen it first hand and my considered opinion is that we need law reform in this area.
- Dr X, first published in The Damage Done, August 2016
Isn’t it strange, the various pathways that lead us to the world of voluntary euthanasia? I suppose some see it as a good cause and cautiously enter. Others, facing their own mortality, may step into the stream. My family and I were thrown in at the deep end.
In March 1990, Gavin, my 37-year-old brother, was standing in the cockpit of his yacht, off the south coast of NSW, taking a land bearing. Suddenly the yacht heeled, the boom swung unexpectedly and struck the right side of his head. His skull was severely fractured. By the time he was moved to shore and transported to the closest tertiary hospital, the golden hour had well and truly passed.
He died 36 hours later, when we stopped life support. Fortuitously an organ retrieval team was in town, so in some way, he lives on. He was a marine biologist. We returned his ashes to a wild stretch of the north coast where we had played, and fished, as kids. Shared some whisky. Said goodbye. Wept for the waste.
This unexpected and traumatic death forced my parents, my sister Tina and myself to discuss and mull over our own individual plans, hopes, fears, expectations. Death was more relevant for my mother Meg (69) and father David (73). Both were independent and adamant they didn’t want to die in hospital, be left as a vegetable, or rust away in a nursing home.
Subsequent conversations over the ensuing years reinforced these wishes, and clarified intent, for all of us. The stage was being prepared to die at home, respecting their wishes. I then started to ponder how I could actively help them achieve these ends. At this time, about 2003, I was working on remote Aboriginal communities in the Western Desert region. Pharmaceutical stocktaking was a regular part of a clinic routine, and consequently I was able to progressively set aside a growing supply of out-of-date medications, complemented by my personal Doctors Bag supplies.
I discussed these acquisitions with my parents, and we progressively formulated plans for a well-managed death, at home. Their plans. Their home. My help. Unfortunately, in 2004 my mother suddenly developed convulsions due to a cerebral tumour. The subsequent left-sided brain biopsy damaged her speech area, and we were unable to finalise her plans to die at home. She was inoperable, and soon became unconscious.
Terminal sedation, and a hospital death, was her final pathway. We were thwarted. It took a week. She was 83. My father was shattered. We took her ashes to that same stretch of coast. She joined Gavin. A sunny day, an offshore wind, another toast. Meg went graciously on her final journey.
Meanwhile, my father’s chronic lung disease progressed relentlessly, with numerous hospital admissions for tenacious chest infections. He received excellent clinical and nursing care, and otherwise remained living alone at home, independent, with some home nursing and meals on wheels. But he missed Meg terribly, his autonomy was eroding, he was weakening, and dreading the return to a hospital bed. He was tired of living.
At his final hospital admission late in 2006, we decided he should come home. He signed the ‘discharge against medical advice’ form, packed his bag, gathered his papers and pens. His treating physician didn’t understand or accept this move and warned David he would be found collapsed on the floor at home, in a day or so, and readmitted.
‘Go to buggery,’ I mused to myself, ‘we have a better plan.’ So we trotted off home together. David sat on his couch in their sunroom, and rested in his own bed. I slept in the nearby spare bedroom, with an electric buzzer for night calls. It didn’t take long.
On the second evening I invited a few of his old mates over for biscuits and cheese, some whisky, and a chinwag. You don’t comfortably do that in the hospital environment. They were delighted. The next night was rough – hard coughing, severe chest pain, distress with his breathing. I helped him to the bathroom a couple of times, and at 3am we sat on the bed together, had a hot buttered crumpet each, and a couple of whiskies, his favourite drink.
Good home care. Proper love. At 6.30am he buzzed me – ‘I’ve had enough, JW.’
We had rehearsed this scenario, documented, dated and jointly signed our many conversations over the years. From here on it was simple – a butterfly cannula into his left arm, swabs, syringes and necessary medications laid out on his bedside table. I told him I loved him. ‘I love you too, JW.’
The midazolam was gentle and quick, and the rest of the drugs followed taking their course. Some 20 minutes later he was gone. Peaceful. At peace. In his own bed. In his home. He was 87. I sat quietly with my father for over an hour. Reflecting on his life, our family times together. Later I rang his doctor – ‘Dad died earlier this morning. Had a rough night, coughing and a lot of chest pain. Perhaps he had a heart attack…’
So he was cremated, and we took his ashes, a bottle of his favourite single malt and a few family members. Back to that familiar, rocky stretch of coastline to rejoin his beloved Meg and son Gavin. A life well lived, and a damn good death. I miss you old fella.
- Dr JW, first published in The Damage Done, August 2016
While on my first placement as a student nurse in a nursing home I cared for a patient who a couple of years earlier had suffered a catastrophic stroke which left him in a dreadful state with no possibility of recovery.
Rob required full nursing care – all he could do was move his head from side to side, was tube-fed into the stomach, and he constantly made loud, angry, incomprehensible mumblings when frustrated, angered, or agitated by his condition.
He fully understood his circumstances…he just wanted to die. He made that very clear by the resistance to everything we tried to do for him – he didn’t want to be here anymore. Prior to the stroke he was a very active 60-year-old who had an interesting career as an engineer, looking forward to his retirement sailing the seas in his newly acquired 55 foot cabin cruiser.
Rob couldn’t walk, talk, swallow or enjoy anything remotely resembling a normal life but he certainly made his thoughts and feelings known. Rob lay on his back looking at the framed photo of his much loved boat on the wall behind his bed. Hopelessness surrounded Rob – the active life he once knew was now gone. He felt trapped in a body that let him down.
Nursing Rob was not easy, the helplessness and hopelessness he felt made him non-compliant with many of his ADLs (activities of daily living). In order to be heard and understood he would self-mutilate by biting down on his bottom lip until it bled, causing the skin to rip and tear.
This was Rob’s only way to express himself…to have some control over his situation, to convey how he felt, traumatised by this hopeless existence. When I returned to continue caring for Rob a few weeks later, I was shocked to see his teeth had been surgically removed.
Later that year when I returned for my second placement, I received news Rob had died. While it had been a privilege and pleasure caring for Rob, living in a body that let him down is not what he wanted. As I progressed in my nursing career I met many Robs, but none as feisty and determined as he was to get the point across. I remember him and admire him for his conviction and courage.
- Nurse KS, first published in The Damage Done, August 2016
Her suffering defied belief. My bestie, Rhoda, was the outgoing one of our group. She loved socialising. A fit, outgoing divorcee who had a wicked sense of humour and still had ‘an eye for the blokes’ at the local RSL dances and the seniors table tennis group. When first diagnosed with motor neurone disease, her life expectancy was one year to 18 months.
She did not realise the disease would become so debilitating in such a short space of time. She stoically dealt with her disease just as she had done throughout her life’s journey. At the time of diagnosis she was a classy, good-looking redhead, 72 years of age…
In saying that she could have passed herself off as being many years junior to that age and often did!!! The disease was aggressive and gathered speed at a great pace. First bodily function to shut down was her swallowing. She could only eat puréed food and then thickened drink, progressing to not being able to swallow at all.
A PEG tube was then inserted directly into her stomach to give her sustenance and keep her alive. Her speech was badly affected, her frustration intense. She said she felt sorry for people trying to understand her! A computerised keyboard, voice synthesiser was a blessing to her, to be able to communicate rather than painstakingly writing everything down.
The last month of her life she spent in a very nice, very expensive nursing home, surrounded by the very elderly. The care was excellent. She was grateful she had some savings which could allow her to have this care. Many do not. She was being kept alive by the PEG feeding directly into her stomach.
Her quality of life was nil. She was fully alert and conscious but trapped in the prison of a non-functioning body. The last week of her life was a horror I will never forget. My dear friend’s eyes were full of fear and terror. We requested more morphine for her, and the nursing staff agreed she needed it but by the time permission was given by the palliative care doctor hours would pass. She did not seem to get enough to calm her.
The fact she was fully conscious and aware was the worst. Her suffering defied belief. As her friend, I felt so very inadequate that I could not do something, anything, to take away the terror in her blue eyes that still sparkled, beseechingly begging for help. She was a spiritual and quite religious being, who believed in the hereafter. She deserved a peaceful passing. The horror in her eyes in those last days will always be with me.
- Ann Sobey, first published in The Damage Done, August 2016
I’m a retired physician. I had been working for over 50 years in my profession, first in Poland, later in Australia. I strongly support euthanasia as the way to end unnecessary suffering of the patients without any hope for recovery. In such cases, with the right safety guards in place, it should be a patient’s choice when he or she wants to end his/her life.
My mother suffered from emphysema and the last few weeks of her life were just a torture for her and also for those who loved her, especially for me. During that time, she begged me to end her suffering. I didn’t do it, but the guilt is still with me.
Drops of Mercy
I didn’t do it
there was no strength in me
to push the shaft of that syringe to add
drops of mercy to your cup
you begged and I couldn’t
was it cowardice behind a screen of Hippocratic oath
did I not love enough?
- Dr Barbara Westwood, first published in The Damage Done, August 2016
As a nurse and midwife, I’ve witnessed life’s first and last breaths many times. It amazes me that something so simple as two breaths parenthesise individual lives that collectively tell the story of humankind. Usually the first breath is lusty; the final breath little more than a sigh – but not always.
I left nursing to have a family. We had a fulfilling life with its share of ups and downs. When our two sons were in secondary school I commenced a university degree while my husband worked long hours at the urology unit he’d developed with a colleague. Urology was not just a career for him. It was a passion. Then our lives changed.
My husband was diagnosed with lung cancer. Following a right pneumonectomy his aim was to return to work as soon as possible. I wasn’t surprised. He’d always seemed invincible. But the postoperative pain was too severe, requiring strong analgesia, so he had to postpone this wish. The cancer metastasised and he went through a program of radiotherapy followed by chemotherapy, which debilitated him. He had no option but retirement.
Months of treatment were emotionally and physically exhausting but he tried not to let it overwhelm him. He loved a good debate with friends. When breathlessness stopped him midsentence he’d wave a white handkerchief – a signal indicating a comma, not a full stop.
It’s impossible to describe what it’s like to live with death by your side. You avoid looking at it. You try to live in the moment. But it’s there, unmistakably, and silently you prepare for that final farewell. In a strange way you become detached from the outside world and discover an inner world to sustain you. Even so, there were times when I was in anguish, taking my despair outside so I could weep unobserved. I knew I had to hold myself together for my family’s sake.
Eventually all treatment failed and he required increasingly stronger analgesia. I vowed to make his final days as bearable as possible, letting him guide me so I could meet his needs without being intrusive or insensitive. Despite his condition I continued to sleep beside him, to provide a sense of comfort and security, because I’ve seen so many lonely deaths. We were fortunate.
A supportive palliative care team were called to manage my husband’s end of life treatment at home. His eyes opened and in a strangled voice he cried, ‘No!’ It shocked me! Despite the cocktail of drugs, his mind was as sharp as ever. He understood exactly what was happening to his body. Given he only had two-fifths of diseased lung tissue left with which to breathe, his one fear was dying badly. He tried to maintain his physical independence but frequently I had to call a son to help me carry him from the bathroom.
Ultimately he became physically debilitated and bedridden. His body was wasting away, respiratory distress and pain became impossible to endure. When the nurse quietly asked if he wanted this to continue he said he didn’t. He agreed to have a cannula inserted into his abdomen so drugs could be delivered steadily via a mechanical ‘driver’. This method of providing continuous pain relief is effective, but I knew the drugs would induce a coma that would inevitably lead to death.
There’s a fine line between the aim of such treatment and the consequences. Therefore no-one addressed them. Technically it could be deemed illegal and we’d all be complicit. So we sat silently holding hands while the procedure went ahead. The law had robbed us of a final farewell. The heartbreak was indescribable.
During that night I lay beside him, keeping vigil. He seemed deeply unconscious, his breathing unusually steady. In the early hours of the morning I was aware his condition had changed. His breathing had become more laboured. The sheet was damp. I realised his bladder had emptied and knew death was near.
I’d been taught that patients were unconscious during the agonal phase preceding death. Now I’m not sure. How can we know? The dead can’t tell us what it’s like. I was also taught hearing was the last of the senses to shut down so I whispered, ‘It’s all right. I’m here with you.’ His conscious state seemed to lighten. He kept trying to clear his throat as though struggling to communicate. I was sure he was aware of the situation and was going to wake up. Then his eyes opened and in a strangled voice he cried, ‘No!’ It shocked me. I was terrified I’d roused him from his coma. I had no way of knowing.
Possibly his tolerance to the drugs had increased, or maybe they were having some sort of adverse effect. I didn’t know what to do to help him. What followed were the most violent death throes I’ve witnessed. He was trying to swallow, but he couldn’t. His eyes glazed in terror and confusion.
The fluids in his throat built up until he was gurgling. Then his body jerked in spasms. This went on and on. I felt his agony with every fibre of my body. My distress was so overwhelming I saw sinister robed figures crouched in the corner. I knew they weren’t real: it was a lucid nightmare. I had to end it for his sake. I did the only thing possible. I disconnected the syringe from the driver and injected the entire contents into his body.
Shaken, I realised there was no back-up – nothing left to give him if this failed. I didn’t know if I could do the unthinkable. His agony seemed to last forever, but it was probably another fifteen to twenty minutes before he took his final shallow gasp. His ordeal was over. Seventeen years later that night is still imprinted on my mind. I have found this very difficult to write.
I did not want to publically expose my husband’s last moments: the most intimate, private moments anyone can share. It’s even more difficult because they were so grotesque. I feel as though I’m dishonouring the memory of a dynamic, fascinating man. But sending a message to those empowered to make decisions on behalf of the terminally ill is more important and it’s what he’d want.
It’s not death you should fear – the real fear is painful, protracted, possibly lonely dying. No-one is advocating ‘killing’ people. If that were the case medical assistance wouldn’t be required. Nor do debilitated people want to use brutal methods to end their pain. But slitting your wrists is a better option than being dragged back to consciousness in an almost dead body to experience suffering so magnified it becomes a marathon of sheer torture.
This state of affairs will continue until those empowered stop washing their hands of responsibility and legislate for change. What if the change doesn’t come before your time comes?
- Adrienne Meagher, first published in The Damage Done, August 2016
I am a 90-year-old EDA veteran affairs pensioner. I have recently arrived home from Prince of Wales Hospital in Sydney where I had open-heart surgery. I have several other failing parts and I am scared stiff that I may be confined indefinitely in a nursing home suffering from Alzheimer’s, dementia, incontinence and the like.
I have just had a check-up from the cardiologist and he said to me, ‘You know Bill, you were born in 1925, you are past your use-by date. Your heart has suffered a lot of damage so you must accept the fact that your end is nigh.’ It is my firm opinion that enforced prolonged life when quality of life is lost is a fate far worse than death. I fear degeneration far more than I fear death.
It is inhumane to leave those who have lost quality of life, whether it be degeneration or terminal illness, confined in a nursing home indefinitely. Times have changed. In my grandparents’ day there were no nursing homes. My parents cared for them at home, the family doctor came every other week to check on them and issue scripts, and when they lost quality of life he asked for a family conference and was given permission to ease them out with analgesics. It was not called euthanasia but rather compassion.
My strong belief in the right for everyone to make a choice for euthanasia should they lose quality of life has been influenced by two family occurrences. The first was a heavy smoker with cancer of the throat who deteriorated quickly. I could hear him gasping for breath as I entered the main hospital entrance. He could not communicate, did not recognise anyone and was being fed intravenously.
Fortunately I was able to persuade a sympathetic doctor to ease him out in a dignified manner. The second was a mate who served with me in the Second World War. He had always expressed the wish not to be confined in a nursing home. The doctor put his arm around him one day in my presence and said to him, ‘Don’t you worry Tom, when the time comes I will ease you out.’ This gave Tom great peace of mind, however the time came when he had to go into a nursing home and was given medication to stop him wandering at night, crying out and disturbing the other patients.
He deteriorated quickly, became incontinent in bowels and bladder, was bedridden, unable to communicate and did not recognise anyone. When I approached the doctor for help he said, ‘Sorry, I cannot do anything for him now as all medication in a nursing home has to be documented.’
Tom was allowed to lie in his bed in this state for 15 months. Surely you must agree that this is an extremely cruel fate to impose upon someone who had served his country with distinction.
- Bill Alcock, first published in The Damage Done, August 2016
People’s bodies at end of life do amazing things. Bones break. Organs fail. Even our neural receptors, our pain receptors, are hypersensitive, so we may have apparently little reason for pain but yet feel it and experience it. And often we see at end of life no amount of pain relief can relieve that, and people will ask the question.
They ask you to help them end it, to finish it, to kill them. They will use all sorts of language but there is no mistake about it. People know when they’ve had enough. It can be very difficult for the nursing staff to, I guess, experience that imploring and begging to assist them to end their suffering when it happens.
I would go the pan room and cry for 10 minutes because I didn’t know what to do or say. There was nothing I could do about it. Saying that to a patient who is begging you to die doesn’t help. It doesn’t change their view to tell them that it’s against the law and that there is nothing you can do. They don’t see anything other than their own distress and their own suffering.
Sometimes you just had to sit there and hold the hand of the person dying so that they could squeeze it and ease their own pain. Many of the deaths I’ve seen are extremely undignified. I can assure you starving to death or dying of dehydration is not dignified. It’s just not.
And the levels of pain — people can scream for the last hours of their death in agony despite very high doses of opiates, morphine and other forms of relief. It’s less than dignified I think when you’re in a public place surrounded by people that you may not know very well, when other people can hear you, hear your trauma, hear your suffering, and you’re generally in a strange environment. To me that’s not dignified.
- Nurse Coral Levett, first published in The Damage Done, August 2016
My strong, wonderful mother had a living will and was determined to avoid the fate of so many of her friends who had suffered painful deaths, subject to all manner of unhelpful intrusive medical interventions. At 87, she had seen many people die and dreaded spending her final days helpless and in misery. Yet that is just what happened.
She had a fall, broke her hip and ended up in a surgical recovery ward. Then she had a pulmonary embolism, which should have delivered the fast, peaceful death she so wanted. She lingered for two horrible weeks. Everything went wrong. She screamed every time the nurses turned her over. She’s just afraid of falling again, the nurses assured me. It tore me apart.
But one evening a palliative care nurse happened to be on night duty. She asked what was going on. It turned out my mother was in terrible pain, having grown tolerant of her morphine level and missing the medication for her crippling arthritis. That superb nurse tried to fix things. She had her moved to a ward which had proper palliative care, arranged for higher morphine levels, less regular turning.
But then my mother got terrible diarrhoea, which led to more pain, intrusion, endless assaults on her dignity. It was devastating struggling so ineffectually to provide that peaceful death my mother so deserved. Here I was, an educated, assertive person, thoroughly familiar with the medical system having for many years taught both doctors and medical students. Yet I failed dismally.
Wandering the hospital corridors with me were other families totally crushed by their impotence to ease their parents’ suffering. It is a total nonsense to suggest that the solution to a peaceful, dignified death is now available through palliative care. Yes, this care can make a huge difference.
But many, perhaps most of the elderly, die in nursing homes and normal hospital wards, often cared for by people who lack the skills to provide that care. And palliative care experts acknowledge that even with state-of-the-art palliative care, terminally ill patients can still experience distressing symptoms that make their lives unbearable – weakness, breathlessness, nausea, suffocation, psychological distress, confusion.
Our community knows this – most of us (over 70 per cent) want laws changed to allow doctors to provide assistance to terminally ill patients to commit suicide and to be able, where appropriate, to give lethal doses to such patients. Yet we continue to allow a noisy minority to lean on politicians and prevent Australia from providing the legal support for assisted suicide available in other parts of the world.
Oregon, Switzerland, the Netherlands, for example, well-functioning legal systems which have not resulted in the dire consequences predicted by the doomsayers. My friends often joke about shooting each other when the time comes. But we will face the same dismal end-of-life prospects as many of our parents unless we get moving now. The noisy, activist baby boomer generation should have what it takes to turn this issue around.
- Bettina Arndt, first published in The Damage Done, August 2016
I had a fully paralysed patient on life support with end stage neuromuscular disease who could only communicate through eye movements. Once he realised he would never get off the ventilator, his mental status deteriorated to extremely fragile and he repeatedly indicated that he wished to die. His eyes would well with tears on mention of his home, family and pets.
The problem with ceasing artificial ventilation was that he would need almost an anaesthetic to overcome the feeling of suffocation as he died. Family members expressed strong opinions ranging from ‘it’s his life and his choice’ through to ‘nobody should play god’. If artificial ventilation is ceased as strong intravenous sedation is given, causing rapid death, some may believe this to be murder.
In intensive care units people from all cultures and beliefs are suddenly thrust into life and death situations often with no prior experience. It’s a high-tech, confronting environment and people respond in many ways: fear, anger, or false expectations are common.
The potential for litigation is always present and may influence outcome, as in this case where a conflicted family could not reach a consensus and whatever medical staff did would be criticised. The patient remained on life support for 11 weeks until he died from pneumonia.
I can scarcely imagine what went through his mind, immobilised, staring at the ceiling for months, unable to say where he was hurting, with tubes in his windpipe, arm, stomach and bladder, 24-hour machines and alarms, no hope of recovery, begging to end it all and finally an awful septic death.
Current laws failed to protect both this patient’s right to control his own fate, and the medical staff ’s freedom to implement his wishes.
- Dr Geoff Wall, first published in The Damage Done, August 2016