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Alzheimer’s disease, the soft target of euthanasia debate

30 May, 2013

The way Alzheimer’s disease is portrayed by advocacy groups and the media is having undue influence on the euthanasia debate, according to a Deakin University nursing ethics professor.

Deakin’s Professor Megan-Jane Johnstone has examined the 'Alzheimerisation' of the euthanasia debate in a new book - Alzheimer’s disease, media representations and the politics of euthanasia: constructing risk and selling death in an aging society - based on her extensive research into the media representations of Alzheimer’s and the shift in public attitudes towards euthanasia.

"Alzheimer’s has been portrayed as the 'disease of the century' that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages," Professor Johnstone said.

"This representation of the disease—along with other often used terms such as 'living dead', a 'funeral that never ends' and a 'fate worse than death'—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolises.

"It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia."

Professor Johnstone acknowledges euthanasia is a polarising and emotive issue, however she warns that the public could be unduly swayed by the way the media, and pro-euthanasia groups, frame the issue as 'simply a matter of choice' and through the use of highly personalised, individual experiences.

"Euthanasia is far from a simple matter of choice, as choice itself is no simple matter; it is an extremely complex phenomenon. And Alzheimer’s disease cannot be adequately portrayed through highly publicised individual cases," Professor Johnstone explained.

"But this is the messaging coming through the media and influencing the public’s perception of Alzheimer’s disease and euthanasia, and calls into question the credibility of public opinion and opinion polls on which future public policy could be considered."

Professor Johnstone’s book is not a treatise on the arguments for or against euthanasia and does not take a position either way.

"My hope is that the book will open people’s eyes to the 'Alzheimerisation' of the euthanasia debate and encourage them to critically evaluate the messages they are receiving from all sides of the debate," Professor Johnstone said.

"The proposal to allow euthanasia as a morally warranted option in the treatment of Alzheimer’s disease and other dementias is neither simple nor straightforward.

"Anything less than an honest, transparent and accountable debate, which has been lacking to date, would be an assault on the integrity of all—both those for and against the euthanasia proposal—who are trying in their own ways to care for those who are confronting the hard-nosed reality of their inevitable mortality," Professor Johnstone said.

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Dr William Boyd | Friday, May 31, 2013, 7:30 PM
My mother used to say that if she became 'doolally' she hoped someone might give her a little blue pill.I too hope that when I am lying in a cot, in a pool of urine, calling out incessantly for help, that someone is able to give me a that little blue pill.
Mary Tehan | Tuesday, June 4, 2013, 3:51 PM
Megan-Jane Johnstone writes very knowledgably about the controversial topic of euthanasia and offers us contemplations of substance ... and for this we thank you. It's interesting how Megan-Jane highlights the way in which a specific disease like alzheimer's becomes the focus for discussion to promote euthanasia. Motor neurone disease has also been a catalyst (or focus) for these types of discussions. Prof Johnstone notes the complexity involved in engaging in moral decision-making about euthanasia and advocates for debate on the pros and cons of euthanasia legislation. I don't believe that anyone would like to end up in the same way that Dr William Boyd's mother dreads. As with Advance Care Planning, it is the conversations that facilitate moral decision-making in one particular direction or another and these can be had as part of working through this moral direction towards an end-of-life decision (treatment, no treatment, euthanasia, assisted suicide). Part of the challenge is that if we ask another person to be involved in a moral or immoral act (depending on which direction you are moving towards)there is an expectation that another person will comply with whatever is requested of them. We can each ask anything we like, but we cannot assume that we will always get what we want re euthanasia, even with legislation, as that other person also has their own moral compass. At what point does a little blue pill become the only option? After one urinary tract infection ( with incontinence)? After assistance for incessant requests has been given 5 times? When? Where? How? By whom? Two German people now living in Melbourne spoke to me last week and conveyed very clearly that they want euthanasia at a time of their own choosing because they had no-one to look after them and they feared that medications will be withheld from them in their time of vulnerability. their wrestling with this issue was/is profound ... and cannot be underestimated. I would like to see carers given a much higher profile in this debate so that there is an awareness that care and caring people are available to assuage fears of loneliness and abandonment. As Dr Boyd attests, it is the loved one/carer (that "someone") who carries the burden of moral action or inaction. The carers of people with alzheimers is also having to adjust to their loved one's familiar life ebbing away slowly towards their mortality ... we are each interdependent and the struggle belongs to all of us ... no amount of legislation can force people towards a particular moral decision ... 'life' is struggle for many people long before the end-of-life trajectory emerges. Life can be messy at any stage in a person's life ... I'm glad that Megan-Jane has written this book so that the conversations can be had. In the end, we each need to find a way through the mess of life ... and dying ... I'm grateful I know about my options and that ACPs exist ... and that I've learnt about the notion and reality of mutually respectful interdependent relationships.