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CONTINUING debate about euthanasia and physician-assisted suicide (PAS) in Australia and around the world needs to take heed of the evidence around the use of these interventions, and the role that psychological distress plays in patients looking to these options, a leading US bioethicist says.
In a Perspectives article published in the MJA, Professor Ezekiel Emanuel, chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania, said that once the evidence for euthanasia and PAS was considered, the case for these interventions became “less compelling”.
“We should end the focus on the media frenzy about euthanasia and PAS as if it were the panacea to improving end-of-life care,” he wrote. “Instead, we need to focus on improving the care of most of the patients who are dying and need optimal symptom management at home.”
Professor Emanuel said that even in the countries where euthanasia and PAS were legal – the Netherlands, Belgium, Luxembourg, Colombia, Canada and in five US states – the interventions were rarely requested and used.
For example, in the Netherlands, where euthanasia and PAS have been permitted and not prosecuted since the 1980s, and legal since 2002, dying patients only requested euthanasia in about 6.7% of all deaths. Only 45% of those requests were granted.
Professor Emanuel also said that the common belief that euthanasia and PAS were flawless and painless was mistaken, noting a study from the Netherlands in which 5.5% of all cases of euthanasia and PAS had a technical problem, and 3.7% had a complication.
Dr Rodney Syme, vice president of Dying with Dignity Victoria, said that the article took an “ivory tower” view of euthanasia and PAS.
“I don’t think anybody who advocates assisted dying would say that [it was a panacea] – what it simply does is address the needs of a group of people,” Dr Syme said, adding that he agreed that only a small number of patients requested euthanasia and PAS.
Dr Syme said that the Netherlands study reflected practices from 20 years ago, before legislation was passed in that country. He said that when appropriate preparation and medication doses were used, complications were extremely rare, according to experience from Dignitas, in Switzerland, where pentobarbital ingestion occurs under close observation.
However, Professor Douglas Bridge, emeritus consultant at Royal Perth Hospital and past president of the Chapter of Palliative Medicine, Royal Australasian College of Physicians, commended Professor Emanuel’s plea to focus on palliative care instead of euthanasia. He noted that the Victorian Parliament’s End of life choices inquiry final report, released late in 2016, contained some excellent suggestions for improving palliative care.
“But all the media attention focuses on recommendation 49 – ‘Victoria should legalise assisted dying’”.
Professor Bridge said that it was “illogical and morally reprehensible” to contemplate recommendation 49 until the first 29 recommendations had been implemented.
In the MJA article, Professor Emanuel also pointed to research that found that psychological suffering such as depression, hopelessness and loss of dignity – not pain – was most often the primary reason for patients seeking out euthanasia and PAS.
“The importance of psychological suffering as patients’ rationale for requesting euthanasia and PAS indicates that these interventions are less like palliative care and more like traditional suicide condoned and assisted by the medical community,” he wrote.
Dr Syme said that there was a completely different psychopathology between a person experiencing depression because they were suffering at the end of their life, and a person with no physical illness seeking to end their life purely on the basis of psychiatric distress.
“Of course, people who are dying with a great deal of suffering are going to have a depressed mood – that’s different from clinical depression,” Dr Syme told MJA InSight.
He added that palliative approaches could effectively relieve most patients’ pain, but were often limited in relieving other common end-of-life symptoms like breathlessness, loss of appetite and chronic nausea and vomiting.
“Cancer has often been called the wasting disease – you can’t do anything to palliate the loss of weight, the fatigue and the loss of independence for many of these people and they find that a critically crushing phenomenon at the end of life.”
Professor Bridge said that he found the concept of “bad” and “good” suicide astonishing.
“In Australia we are striving to prevent this avalanche of suicides [among teenagers and middle-aged people], but then you turn the page and say ‘but if you’re dying of cancer and want to suicide, that’s different – that’s a good suicide’,” Professor Bridge said.
“It is nonsensical to attempt to differentiate good and bad suicides. Every suicide is a tragedy. Good palliative care reduces the request for euthanasia.”
Dr Will Cairns, a palliative medicine specialist based in Queensland, said that he viewed palliative care and euthanasia and PAS as independent issues.
“The community of palliative medicine specialists includes individuals across the full spectrum of beliefs about euthanasia/physician assisted suicide. We can all practise the art and the skills our specialty, without necessarily having to engage in the debate, or share our views, about euthanasia and PAS. [These interventions] are illegal in Australia at present, however, because they are independent issues, I don’t think that we feel constrained from delivering all appropriate treatment with the goal of providing good palliation for our patients,” Dr Cairns said.
However, Dr Cairns agreed that there were limitations to palliative care.
“We can make a great difference to the severity of symptoms and the quality of their life, but the reality is that we can never control all symptoms in all people, and I don’t think we should encourage that expectation. Nor do I believe that even exemplary palliative care could ever shut down this debate in our community.”
Dr Cairns said that the complexity and depersonalisation of modern medicine had caused depression, loss of control and disempowerment to become increasingly significant problems for patients, but that there was a shift toward greater patient control with the growth of advance care planning.
“Many people have their lives prolonged with great [improvements in the] quality of their lives, but some are enabled to live longer without the quality,” Dr Cairns said. “Advanced care planning can empower people to take control and make choices about the things they do and do not have done to them in line with their overall wishes and goals.”
Professor Bridge agreed that advanced care planning had a role to play in end-of-life care.
“Advanced care directives can be quite helpful, but we shouldn’t expect them to be a panacea for the problems of end-of-life care. The real value is in the family discussion around death. That discussion may be healing and helpful,” he said.
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I have a degenerative auto-immune lung condition. It will get worse, it will become more difficult to breathe and so will the agony of finding my next breath.
I don’t want someone else having the ultimate say whether I can end my life on my terms.
I don’t want doctors having that say, politicians, lawyers and worst of all, religious types.
My decision to die, should be mine alone at a time of my own choosing and not constrained by any conditions imposed on me. I should be free to do this at any time with access to all of the sound means possible to make it quick and as pain free as possible. If I could have, I would have done this years ago.
Unfortunately, in Australia; politicians, lawyers and religious types are usually all one of the same person. The very last sort of person who should have a say on what I can and can’t do with MY OWN LIFE.
Politicians, especially religious ones, are not concerned for a suffering person’s welfare, far from it. Their motivation is purely political and the concern of the “Bad Look”, if there are too many people taking the euthanasia option during their time in office. Politicians are peerless when it comes to self interest.
It is now an $800000AUD fine to be in possession of Nembutal.
I suspect doctors of a religious bent, care nothing about the person’s welfare as such, but allow their religious beliefs in imaginary beings to cloud and derail their judgement. Anyone who is religious should be precluded from the medical profession. They have nothing to valid to contribute at all, let alone decide on my right to die.
Yes, I’m bitter, very much so.
If anyone can outdo the words “It’s still killing” then I will agree that it is right, but until then, it is a moral wrong.
I have mixed feelings about physician assisted suicide, but I believe if it is offered to those who are dying and in unmanageable pain, there is no real ethical concern.
However, providing these life-ending drugs to a teenager who is suffering from depression is a moral and ethical outrage and is the true reason behind the laws dealing with aiding/assisting any form of suicide.
From Dr Walpole )No. 9) My friends mother in law,at 82 in Netherlands had a series of strokes, and was facing a PEG tube, and she asked for her life to be ended, so he, and family flew to Amsterdam, wher the whole family gathered at her home and had a dignified party, and the GP then administered a lethal cocktail, died in 15 minutes, perfect, he claims.
PLease tell me what the problem is with that.
What is wrong with that is that you can’t look at one example and say it should be available to all – i also have friend (Dutch-Australian) who went to Holland for the deathing of a close relative of his spouse – it all seemed ticketyboo, but the fallout has (to date) has been intense biiterness and blame amongst between 8 siblings …
I have a couple of concerns about legal euthanasia. Firstly, doctors will have to be involved in some way and it goes against all of our ethical codes and declarations. Secondly, like capital punishment there is no comeback if an error is made.
Most lay advocates of euthanasia quote a relative that died an “agonising” or “undignified” death, but how much of this is observer perception and distress rather than the dying person’s actual experience? A dying person may seem restless or distressed but have little or no conscious perception. In allowing, or participating in euthanasia will we, in many cases be treating the loved ones rather than the person involved?
I think leave it where it is; good palliative care, anxiolytics and pain relievers which may int heend hasten death, but this is not the primary intent.
Euthanasia endorses suicide.
It is far away from an act of compassion.
It is abandonment.
I cared for my wife as she lost autonomy during her last 18 months. I learned that you can work on 4 hours sleep. The corporate promoters, K Tucker, of assisted suicide now sell with feelings of fear of losing autonomy flying in the face of those living every day with loss of autonomy. This is insidious. This is why the secular left disability rights community is leading the resistance. They and libertarians know these laws do not assure individual choice.
The medical standard of care established by the non transparent OR/WA euthanasia policy is an application of poison for anyone with feelings of concern about losing autonomy. This is documented by the OR/WA state reports. Now they propose 1 day turn around from diagnosis to death by poison in Hawaii.
That is the low bar of standard of care the corporate promoters of euthanasia want to establish for us all. That will put us all (all ages) at risk of exploitation by the medical industrial complex, human trafficking, predatory corporations, covert organ traffickers, predatory heirs and “new best friends” like Oregon’s Thomas Middleton killers via the Oregon policy. This public policy including L.D. 347 and L.D. 1066 is neither reasonable nor prudent rather it is insidious at best.
Respectfully
Bradley Williams
President MTaas org
George,I would assume that you would want to prevent suicide in young people who are feeling incredible distress and suffering.
Unfortunately,in Canada in recent weeks a young man in his 30s was euthanased because of his psychological health and not because of any terminal illness.Yes ,his death was “VOLUNTARY”.
Where’s your line drawn to make the difference between that and “MURDER”?
PAUL
Take out your dictionary and look up the word “VOLUNTARY”.
Euthanasia which is not voluntary is called “MURDER” and there are laws to protect us from being murdered.
You are deliberately equating the chalk and the cheese.
As is evidenced by the groups of people who are presently (and soon to be) allowed to be euthanised in Belguim and The Netherlands,once the first person is euthanised,it is really just a question of who do you euthanase next?
Initially it was adult terminally ill people with uncontrollable pain.Now it is children and soon in The Netherlands it is proposed that people over the age of 70 who feel their ‘life is complete’ will be euthanised.
By the way,any statistics relating to euthanasia in Belguim,The Netherlands and Oregon are very likely to be be considerably understating the incidence of euthanasia in those places because death certificates are not legally required to state the cause of death as euthanasia and/or there are no consequences for an omission of same.
Professor Ezekiel Emanuel’s observation that “ even in the countries where euthanasia and PAS were legal – ———- the interventions were rarely requested and used” is not a strong argument against but rather for access to euthanasia. It is the reassurance that the option is available that is comforting.
I find it hard to understand the justification for diassallowing a competent decision maker to request and be given life-ending medication. Palliative care works well for many terminally ill people but not for all. Some people do not want to gradually deteriorate and would rather have control of their own death. If they are terminally ill, then I see no reason to deny their request to die peacefully.
Could we please stop labelling the death of someone who is dying – Suicide! That doesn’t make sense to me after 30 years in Practice assisting people to die as peacefully as my palliative skills and tools allow. It is neither ‘good’ nor ‘bad’ suicide! It is simply a choice that we all, like many of those I have been privileged to support in death, would like to have under similar circumstances. I currently have a lovely, dedicated patient bravely caring for her husband who has MND – his life and his dignity slowly,inexorably ebbing away. He feels no pain, only that of knowing how painful his dying is to his loved ones. That is a pain I cannot palliate!
Seems to me there are 2 issues,
Pall care has arrived, is still selectively available, mostly in the cities, and done well, so cancer deaths, which pall care copeswith well in the main, is fixed. Few cancer deaths warrant euthanasia.
The problem is with the slow degenerative deaths, neurological, ( MS MND ALS CVA), cardiac failure, COPD, where Pall care generally does not get involved, and more prevalent now,progressive dementia.
When I dont recognise my family, and visits from them become painful, then please, I want my ACD acivated to end my life, quickly ( as George Q asks) and painlessly,currently midazolam, vercuronium, and potassium, please. Better still nembutal if its available. This is where the law needs to change.
My friends mother in law,at 82 in Netherlands had a series of strokes, and was facing a PEG tube, and she asked for her life to be ended, so he, and family flew to Amsterdam, wher the whole family gathered at her home and had a dignified party, and the GP then administered a lethal cocktail, died in 15 minutes, perfect, he claims.
PLease tell me what the problem is with that.
Is it so bad to want to die? My father, terminally ill with disseminated cancer, wanted to be put down. Instead he had to die slowly, with ‘palliative care’. No, he didn’t have pain. But he just wanted to die. He loathed his loss of control and dignity. My heart ached that, as a doctor, I had the knowledge and ability to grant his wish, but a bunch of sanctimonious, pious, arrogant, supercilious decision-makers decided that I’d be a criminal if I helped him. So he had to wait to die naturally – in stark contravention of his wishes.
I must say, there were a few straw men there. “Good suicide vs bad suicide”. I would not say that euthanasia or PAS were good. I do not think that others were saying that they were good, except as a shorthand. Euthanasia and PAS are merely the least worse alternatives. If/when a practitioner invokes the principle of double effect, and gives someone enough pain relief to kill them, and does, no one would rightly say ““It is nonsensical to attempt to differentiate good and bad giving-patients-a-lethal-dose-of-morphine”. I don’t know why I read half this rubbish.
My colleagues in their palliative ivory towers should take as long as they like to die. When I am dying I WANT TO DIE QUICKLY. That means suicide.
Voluntary medically assisted dying should be legal for all terminally ill people who feel their suffering has become too much for them.
Of course all terminally ill people should be offered palliative care but terminally ill people should have the right to refuse palliative or other care.
Patient autonomy for terminally ill people in deciding how much suffering or treatment they are willing to endure at the end of their life should be the paramount factor in determining what treatment is given to a terminally ill person.
It should not be up to doctors,priests or politicians to decide how much treatment or suffering a terminally ill person must endure.
The experience overseas where medically assisted dying has been legalised is that many terminally ill people who are approved to use medically assisted dying do not use it but are greatly reassured that they have that option if their suffering becomes too great for them.
The legalisation of medically assisted dying has enabled palliative care doctors to be able to reassure terminally ill people that the individual always has the right to decide if their suffering has become too great and they wish to request medically assisted dying.
The proposed bipartisan Victorian state law legalising medically assisted dying for terminally ill people contains all the appropriate safeguards and should be supported.
The decision to take one’s own life is a personal one just as the condemnation of suicide is a personal point of view based on an individual’s moral and religious ethic. There is little chance of a rationally derived resolution of these conflicting points of view. However, it is not difficult to rationalise one’s opinion one way or another, that is to say the arguments for or against the right to suicide are of necessity not absolute.
One hopes that one’s own end will be catastrophically sudden or be a slow, gentle lethargic, painless release, but if it comes to making a positive choice under circumstances where even the best palliative does not successfully palliate one hopes that help will be available.
What I wish for myself is what i hope I will be allowed to extend to any patient under my care.
Excellent article.
Prof Bridge and Dr Cairns cover the complexities well, as does Professor Emmanuel.
We need to empower patients & their carers with quality care in both physical and psychosocial realms, and preserve the choices of the vulnerable with appropriate strategies and support.
We needs to educate doctors, nurses, politicians and the community about appropriate avenues of assistance and advanced care planning to avoid unnecessary treatments and inappropriate framing of healthcare.
EPAS is not a medical treatment, nor a socially sound approach to suffering in the infirm.
I am glad to see these difficult issues being discussed. As a psychiatrist working in the Dialectical Behaviour Therapy model, one of our committment strategies is ‘freedom to choose with the absence of alternatives’. It may be a paradox, however, someone knowing that they have the freedom to choose but cannot use that option until ALL evidence based treatments have been correctly administered and have then failed may assist people with psychological distress.
Evidence based treatments like DBT often work, so if you can get people into these treatments as soon as the internal behaviour of suicide ideation or the first suicide attempt shows up, then we may be able to reduce the rate of completed ‘bad’ suicide. It is like giving someone a ‘get out of jail free card’ then insisting that they demonstrate to you that they are working with you to dig themselves out of jail. Those who don’t dig wouldn’t get to use the ‘get out of jail card’ and many who are helped with their digging do get themselves out of jail, therefore the card would never need to be used.
Challenging stuff I know, however, if we are serious about reducing the rate of a terribly lonely and destructive death by ‘bad’ suicide, then I believe we need to have these conversations.
While agreeing with the concept I would find it impossible to formulate any legal framework for euthanasia that could fit all situations. There are too many fine lines.