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This article was first published by Fairfax Syndication (Sydney Morning Herald, 16 November, 2016). It is republished here with permission.
IN 1969, when I was 15 years old, my adored 39-year-old single auntie Nancy was diagnosed with advanced, untreatable ovarian cancer. It was a dreadful time in our close extended family’s life. She began to deteriorate quickly and to develop severe pain from the tumour masses in her abdomen. She asked to stay at home and to be allowed to die in peace surrounded by her loving family.
There were no visiting palliative care nursing teams then. There was no medical expertise in pain control. Doctors avoided using narcotics until the final hours for fear of addiction and that they would stop working if started too early.
As my aunt began to deteriorate, an experienced private day nurse was engaged. My mother, in tandem with my other two aunts, would stay up every third night with my aunt, turning, toileting, massaging and comforting her. Nancy was in agony and regularly cried out in pain. The doctor eventually prescribed a small dose of morphine to be strictly used every 4 hours. It had no effect.
My aunt slowly became emaciated and developed painful bed sores. The family increased their efforts. They would care for her till the end. Eventually, after months, she became so desperate that she pleaded to be killed. Please? Please? The visiting nurse, a courageous and compassionate woman, promised to help. She had a cache of unused morphine ampoules from previous patients for desperate situations. Unable to obtain appropriate orders from the doctor, she secretly gave them to my aunt. Finally, she was freed of her suffering.
It took many years for my mother to tearfully tell me this very painful story. Her guilt, regret and sense of failure were profound. I was convinced that such mercy killing must be made more easily and widely available if it was true that no other treatment options existed.
But since then my views have changed. Thirteen years after my aunt died, I trained in the newly established specialty of medical oncology. I spent any spare time learning pain control and palliative care. I listened to the experts and to my patients.
I began to see newer emerging team-based palliative care treatment options for those like my aunt. Many more of our patients were now dying peacefully. I could see that euthanasia may not be the answer after all.
The advances in the skills, availability and knowledge in palliative care since those days have been phenomenal. The horror stories of doctors telling nurses to close the doors of the patients who were screaming out in pain were fast disappearing.
I have received many euthanasia requests from patients and families over my 34 years in full-time oncology practice, some very passionate, but I have invariably found that they quickly disappear as reassurance and adequate medication doses provide the comfort that is desired and the newly exposed opportunities for patients and families to share deep and poignant moments of bonding and reflection, or nurse a newborn grandchild, or attend a wedding or a graduation.
If a patient and their family need help for a comfortable and peaceful death, doctors routinely increase the dose of medications, even if the patient dies sooner as a result. As long as the primary goal of this treatment is the relief of suffering and not to cause death, this is permitted.
This “law of double effect” is a legal grey area that allows doctors to provide optimal care short of primarily trying to kill the patient. Some would call it passive euthanasia. Perhaps it is. However, as a secular humanist, it is a subtle but huge difference that allows me to relieve suffering, to share some of the most profound human experiences possible and to sleep comfortably at night.
Over my 34 years in practice, I have seen palliative care reach the point where the terminally ill can die with equal or more dignity than euthanasia will provide. It is now very effective and increasingly available for two of the three possible ways of dying, outside of sudden unexpected death, which are advanced cancer and chronic relapsing and remitting organ-specific disease, such as heart or lung failure.
Palliative care is also available for people with chronic progressive cognitive diseases such as dementia. This is the fourth way of dying and perhaps the most feared of all.
Euthanasia is unlikely to become available for people in such circumstances because their condition prevents truly informed consent.
Only a fully informed detailed advanced care plan done before any decline, where one may prohibit life-saving interventions such as antibiotics and intravenous fluids if certain conditions are met, may easily and safely produce the smooth outcome that many would desire if combined with palliative care.
Like Andrew Denton and others who have observed unbearable suffering in loved ones and the terrible failures of modern medicine in the past, I had once believed that euthanasia was the only humane solution.
I no longer believe that.
The experiences of countless patients and families should be the inspiration for continuing to improve palliative care, for general introduction of advanced care plans and not for euthanasia with its openness to misuse.
If the Victorian government, or any government in Australia, legalises assisted dying for people suffering from serious and incurable conditions, it will be the wrong choice. It is not necessary and, as outlined in the minority report to government, it will inevitably increase the pressure, both stated and perceived, for some chronically ill patients to move on and stop being a burden.
Clinical Associate Professor Ian Haines is a medical oncologist with the Alfred Medical Research and Education Precinct’s Department of Medicine at Monash University and Cabrini Health in Melbourne.
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How sad it is that Carolynne Bourne categorically states that there is no such thing “as dying with dignity”. There certainly is. After almost 12 months on continuous oxygen and a month of palliative care at home, cared for by her two daughters, my wife deteriorated quickly over three days. At 4pm on the fourth day, blue despite 10 l of oxygen per minute, she said she had had enough and wanted out. She was given her usual medication and offered her favourite single malt whisky. This she had and four hours later peacefully stopped breathing with a daughter by her side. Surely a dignified departure from the misery of this world.
My concern is that once euthanasia is legalised, the restrictions will gradually be eroded, so that from being “acceptable” under certain circumstances, it will become desirable, then necessary, and finally compulsory.
political bean counters will be delighted at the massive savings from the abolition of aged care.
Ian Haines convincingly puts the case for good palliative care rather than the alternative, a scheduled time specific act of euthanasia, The latter requires informed consent and therefore a lucid patient, still capable of communicating with relatives and friends. To forgo last days or hours of shared memories and endearment is tragic I believe. In those cases where symptoms of asphyxia, as in motorneurone disease, are present and prolonging death is not an option, Ian Haines states that “passive euthanasia” has a part to play. Well conducted palliative care provides the most desirable outcome for patient and relatives.
May I offer some opinions, firstly; the Hippocratic oath, has that contributor read it? Do not cut for stone (nor presumably refer for same, similarly TOP. Does he / she give free care to any or all of their educators? It is an outmoded document out of step with much of modern practice.
Secondly the criticism of the current generation’s desire for control; has the contributor heard of Martin Seligman and Learned Helplessness? Even dogs can be proven to do better with the illusion of control. There are abundant authors who have verified Martin’s research in many species including humans.
To the ethics and administration. The framework already exists in pregnancy care. If at 22 weeks a scan shows, for example, severe hydrocephaly, then a committee of; Patient advocate, a Maternal fetal medicine specialist, the Obstetrician responsible, a NNICU consultant and a Psychologist meet and make a decision on the ethics of Pregnancy termination. Clearly, the committee makeup would be modified to include the GP, the Palliative care physician possibly the responsible sub-specialist (say the neurologist or the oncologist.) and of course the psychologist and patient advocate. This group can come to an ethically guided decision protected in Law and immune to pressures like family avarice.
This is the only reasonable way forward.
It is interesting to read the pro-arguments, which range from “Where is the Humanity?” to “it is alright for my dog, why not for me?”. There are claims of choosing death as a “human right” or even a “Fundamental Human Right”.
Which is it? Why is it a human right, or any kind of right? Who is the arbiter of ‘rights’, and what are the limits of these claimed ‘rights’? Does the dog also have this ‘right’? Or is it the (sad) convenience of the dog owner which is actually being discussed? The convenience of reducing futile costs? Which carers of humans should have this ‘right’ to save costs (financial and time and manpower costs of caring for the person whose life is under discussion)?
I personally do not wish to impose my preferences on anyone, but I do not think there is any tradition we can rely on (which we would want to rely on – there are certainly lots of death-dispensing histories which we do not want to rely on) where those who dispense the healing arts are also the killers of others. Leave it to the vets, or other agencies, but it does not fit the medical profession at all.
So, I agree that each of us has the capability of choosing to die, but that does not make it a ‘right’. Assisted suicide should be named for what it is, and ‘euthanasia’ should be abandoned, or at least left to the veterinary profession, who dispense death to animals when their owners choose it for them. I do not wish to allow the children/spouse/anyone-related of the ill to choose for them to be dispatched “like a dog”.
So, to those who think it is a ‘right’, define which is a human? Define why it is a ‘right’ rather than a privilege or a mere choice? Answer my charge that dogs die at the hands of their owners, who could equally choose to outlay vast sums of dollars to provide alternate veterinary care (if they could find a vet who would provide the care), rather than anything to do with ‘personal rights’,
The pro-killing debaters seem to me to fail at the gate – they confabulate definitions, or fail to provide them, or confuse and conflate unlike with unlike (no person wanting to die – suicide – has ever claimed to be a dog, in these pages). Start by defining what a human is – not genetically, but who has claim to “human rights”? Then, what is a “right” ? What right do we have to choose the time and place of our death, as so often claimed? I do not think there is a literature demonstrating this, only assertion and claim.
(Active) Euthanasia is just a pretty word for ‘assisted suicide’. If you want to kill yourself, it’s perfectly within your own rights, but don’t get someone else to pull the trigger for you or impose it on others (with capacity or not). Don’t dress it up for anything more than what it is; there’s nothing dignified about death itself; there’s only dignity and honor in how you chose to live. Death and disease is an inevitability of life, but it doesn’t mean we should offer the finality of suicide as a sanctioned treatment option to end suffering; all it does is end life. Today there is the choice of better treatments for diseases and specialist palliation cares to ease suffering of the terminally ill. There is courage in living and facing death, there is nothing courageous about snuffing your life away with the toxic push of an injection by a loved one, or by an equally moral-ethically conflicted physician.
I have been in general practice since well before the concept of palliative care.
I regularly manage palliative patients at home and in institutions.
Good palliative care requires diligence and listening to what patient and family are saying.
It must be taught, but like anything, it improves with experience.
Good palliative care may hasten the final demise, but it is not killing.
Deliberately scheduled, individual killing has no precedent here, except in the death penalty.
It is a one-way moral slippery slope.
I had to have my dog euthanased by the vet because it had cancer. The family who had grown up with the dog came and said their goodbyes. I was sad. I nearly cried. The vet was sad. The vets staff gave me momentos to help me through it. I buried the dog in the back yard.
The most important thing to me – the dog didn’t suffer. It was time.
If dogs could speak would they ask us to do it differently?
Some of the angry emotional responses confirm my suspicion that baby-boomer death anxiety (doctors are perhaps even less immune than others) drives much of this debate. Human beings always want more … perfection … control.
It is inevitable that whatever comes out of the debate will not quell the unrest, so what then, if the pro-euthanasia lobby have their day? Mental illness? JAMA Psychiatry research reveals that euthanasia (physician assisted suicide) of the mentally ill in the Netherlands was sometimes granted despite disagreement by treating physicians and psychiatrists about what constituted unbearable suffering. Significant numbers had no independent psychiatric input. In other cases, the psychiatrist believed that criteria for granting euthanasia were not met, but it took place anyway. Previous assisted suicide requests had been refused for several patients.
Of those, a few had physicians who changed their mind but many were granted euthanasia from physicians new to them, and most of those physicians were affiliated with a mobile euthanasia clinic called the End-of-Life Clinic. To quote a commentator, “It is fair to say that the Dutch system is based on a lot of trust. Whether such a system is sufficient is probably an open question”.
I wish the vocal would focus more on palliative care resourcing, training, and public education.
Finally, Advanced Care Directives – who of us has completed that process … ?
“When people no longer have a voice and others speak and act for them, the rights of the individual are on a scale from being fully met and understood to not being met at all to abuse… there is a crucial abuse which is not recognised, that being ‘identity abuse’, particularly under the law with the flow on into families and society in general.
Identity Abuse: Providing a range of care and responses to needs, sense of identity, lifestyle preferences, self-concept, priorities and choices.
Note: ‘Identity abuse’ is not only limited to lack of respect, lack of equality and lack of dignity”.
[Eat Bananas. Identity Abuse in the Care of Older Australians. Bourne and Associates P/L 2010. Submission to the Productivity Commission. Care of Older Australians. (www.pc.gov.au/__data/assets/pdf_file/0016/101923/sub374.pdf).
Of note is the article, ‘Euthanasia Prevention Coalition Euthanasia Prevention Coalition: “Mild stroke led to mother’s forced death by dehydration” 31/10/16 10:56 AM’ “…in the spring of 2009, her son and her eldest daughter, with the permission and assistance of the law, because this old woman had had a mild stroke, refused her food and water. She could not swallow, so she would have needed the food and water administered artificially… And the youngest daughter could do nothing except watch her mother die slowly, and write this, in the hope that my mother’s death, like her life, will have made a difference”.
The response a Minister of a Christian church had to the attached article is that he has seen this assisted death several times in visits to the dying and it is deeply disturbing.
Also I’m told about the ‘fight’ a son had re his father in an aged care facility with the doctors and nurses to stop such cruelty.
Part of this great travesty is the inability of those on mind dissociative drugs like the opioids to communicate with their families and friends in their last days and hours.
There is no such thing as ‘dying with dignity’, there’s just dying. In my view, the phrase ‘dying with dignity’ is used to assuage the person/s effecting the death of an individual.
It is also prudent to note that in Victoria, charges which can end in a jail sentence is where food and/or water is withheld from animals, but we condone this is OK to do it to human beings, our fellow citizens, our family.
What of the Hippocratic oath ‘to do no harm’? Where is ‘humanity’? What of human rights? What of informed consent ie when a person does not have capacity/has capacity?
The right to chose how, when and where we die is the fundamental Human Right.
I will not have some anguished third person, be it a god botherer or misguided ethicist tell me other wise.
As will most of us here, I have seen intractable pain and I have seen peaceful narcotic slumber before death.
I know which one I will have and I am quite satisfied that the protocols are well enough established now that any avaricious distant relatives, once they learn of my whereabouts and prognosis, will not be able to influence me in my final hours,
to go quicker!
Disclaimer… I have no avaricious relatives, distant or close.
YOU KNOW WHAT IS BEST FOR ME…….?????????
WELL DO YOU ?
……
How impertinent.
You can die as slowly as you like.
You can watch your beloved family take days and weeks to moulder away and die fitfully choking and dehydrating and gradually fading.
You may think it is OK for someone with motor neurone disease to be reduced to blinking once for “no” and twice for “yes”
I DON’T
I demand to have the choice.
Indeed I HAVE the choice to end my life at a time of my choosing.
All you can do is make it more difficult and therefore more inhumane for me and those who think like me.
That happens to be the majority of educated intelligent people.
If you do not believe in an EASY DEATH (“eu than asia) then get the hell out of the way of those who do!
That is all assuming that people have access to good quality palliative care which I think is a big assumption. I know of several instances not that long ago where people have suffered terribly while dying so I think your position is rather idealistic.
Ian Haines seems to have forgotten one thing. It is not for him ( or any other person) to decide on end of life issues but the patient him or herself. He seems to want to deny us a basic right.
If euthanasia is ever legalised, the medical profession should have nothing to do with it.
If the State thinks that it is appropriate for a third party to assist somebody to commit suicide, then we can have a Department of Death and employ public servants to administer the lethal injections in designated Death Clinics, physically removed from any hospital.
It is never the job of the medical profession to kill.
As a GP with over 40 years experience I would like the AMA to publish a balancing article from a doctor supporting the right of terminally ill people to choses medically assisted dying.
Medically assisted dying is not an alternative to palliative care it is an logical part of palliative care .
The main issue is to give terminally ill people the right to control their own death and not leave it only in the hands of doctors.
The Victorian bipartisan proposal to allow terminally ill people to legally chose medically assisted dying should be supported because it contains the appropriate safeguards and recognises that terminally ill people should have this right to chose how much suffering they have to endure at the end of their life.