An internationally renowned bioethics expert has said there are reasonable concerns why health advocacy organisations should not take a definitive position on euthanasia.
Professional organisations, representing both consumers and health workers, risk polarising the debate and alienating their broad constituencies if they formalise critical discussion into a clearly articulated position statement.
Professor Megan-Jane Johnstone, chair of nursing at Deakin University and an expert in healthcare ethics, said it is not in the interests, or the role of peak bodies, to lobby on this issue. Her concerns follow the release last month of an online survey commissioned by Alzheimer’s Australia, which included a question polling 2500 Australians on their views on euthanasia.
Upon releasing the results, Alzheimer’s Australia indicated the topic was on its national agenda and would seek to inform the debate from the perspective of its consumers.
The consumer peak body is now set to release a discussion paper on the topic, ahead of its national conference in May, where the issue will be again be debated.
John Watkins, CEO Alzheimer’s Australia NSW, said the organisation did not have a position for or against euthanasia in recognition of the varied and strongly held views of many of its members.
“We don’t, however, ignore the issue as it is part of a wider community debate, and will make appropriate comment when relevant. Our prime responsibility, however, is to be a tireless advocate for all Australians with dementia, their carers and families.”
Alzheimer’s Australia CEO Glenn Rees said in an AAP interview that the bottom line was: “…we feel that consumers ought to be more involved and should be leading this debate,”
The survey showed 42 per cent of respondents said they ‘would take the option of euthanasia in the final stages of a terminal illness’.
“The raison d’être of health advocacy organisations, contrary to right to die and right to life organisations, is that they’re there to advocate for good resources for their sectors,” said Johnstone.
“I don’t think activist groups – either right-to-life or right-to-die lobbies – people that hold polarising views are going to bring to the public debate the balance and a measured consideration that this extraordinarily complex issue requires.” She said the euthanasia debate could potentially undermine Alzheimer’s Australia’s main game of arguing the case for increased resourcing for dementia care.
Alzheimer’s groups, nationally and internationally, are just on the cusp of mobilising public resources behind the disease and challenging public misconceptions surrounding the dementia, she said.
“The Alzheimer’s group internationally has only just succeeded in getting Alzhiemer’s disease and related dementias recognised as a global health priority. That’s taken a tremendous amount of work and Australia has been a leader in getting it on the government’s agenda.
“What I would like to see is a much greater cementing of the success of Alzheimer’s disease and dementia-related illnesses as a global health priority, and that we see the commitment of governments to mobilise resources to ensure state of the art care.”
She said there is still quite a long way to go to mobilise increased resourcing and to shape public understanding that individuals can live quite well with dementia with proper support.
“I’m not sure that the timing is right for this, particularly given the vulnerabilities of getting the issue of good resources for the sector onto the public agenda.
“I’ve seen even the most deeply demented person brought out into moment of lucidity with music and touch. We can’t discount those things and I would like to see that becoming far more impregnated in the minds of the general public of what’s possible in terms of living well and dying well with this disease at the end stages of life, before leaping onto the bandwagon of euthanasia.”
She said there is also the additional concern of alienating the diverse members of its constituency. “I think there will always be a risk of polarising the debate. Alzheimer’s Australia has said this issue has got to be led by consumers, but which consumers?”
Johnstone’s extensive research of the public discourse from both sides, has sought to analyse the metaphors and associations that Alzheimer’s disease has come to represent in the euthanasia debate. She recently presented her findings at an international conference on Alzheimer’s disease in Toronto, Canada.
In the last decade, Johnstone said she has witnessed euthanasia being reframed not only as being applicable to people with Alzheimer’s disease but as an important cornerstone of the debate and its translation into policy and practice.
The way the euthanasia debate is currently framed positions those living with Alzheimer’s disease as natural candidates for voluntary euthanasia and contributes to the stigma and silence of the disease.
She said euthanasia has come to represent a metaphor for a heroic quest for dignity, whereas, dementia is framed as a predatory disease that strips the individual of their personhood.
Significantly, in 1990, the first woman to be euthanized in the US, Janet Adkins had just been diagnosed with early onset dementia.
In September 2008, influential UK medical ethics expert, Baronness Warnock, said dementia sufferers might have a “duty to die” to relieve the health system and their families of their burden.
“Dementia is subliminally and continuously interwoven into the debate on end-of-life-decision-making. For example, Alzheimer’s disease is positioned as an obvious situation in which treatment should be rationed and euthanasia is understandable,” said Johnstone.
Contrary to proponents of euthanasia, she said the issue is far more complex than the current debate suggests, and the economic imperative underpinning the debate cannot be ignored.
In the Dutch experience, she said the question of end of life care costs has been reinterpreted into a question of patient choice and medical paternalism rather than government resources.
“For people who say there isn’t an economic imperative underpinning the euthanasia debate, the bottom line is that there is.”
“There’s also an illusion that choice is simply a matter of deciding without really taking account of the quite extraordinary and often extremely subtle influences of our environment on the way people think and view an issue.”
In the pro-euthanasia discourse, the idea of euthanasia is effective because it speaks to “our deep human terror of death” and provides certainty and a sense of control to temper these anxieties.
Johnstone said her research, which was funded by a grant from Alzheimer’s Australia, has shown that the major activist groups, especially the pro-euthanasia lobby, were extremely well-organised, strategic and politically and media savvy.Do you have an idea for a story?
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