Euthanasia is only one part of the end-of-life debate

The paper, which was commissioned by the Alzheimer’s Australia National Consumer Advisory Committee, has been prepared by Professor Colleen Cartwright, Director ASLaRC, Aged Care Services Unit at Southern Cross University.  

Ita Buttrose AO, OBE, President, Alzheimer’s Australia said, “Alzheimer’s Australia does not have a position on euthanasia.  

“We take the view that the debate on euthanasia is clouded in confusion.    

“The intention of this paper is not to tell people what view they should take but rather to provide clear information about the debate and to provide an overview of the complex issues dementia raises in respect of euthanasia.  

“These issues need to be understood and discussed as part of any debate.”  

Liz Fenwick, a family carer, chaired the working group of consumers who advised on the papers said, “I know from personal experience that the current system for planning end-of-life care is confusing and can be challenging to those who do not know where to start - it was a shock to be faced with decisions I was not ready for.  

“Taking together our two discussion papers on end of life it is clear to me that the community needs to be better informed about the options that are legally available such as advance directives and palliative care.”  

Professor Cartwright said, “End-of-life issues are complex, personal and sensitive but they are made all the more difficult if the wishes of the person concerned are not properly understood or set out, especially in cases where the person has dementia.  

“There is reluctance in our society to discuss end-of-life issues, which translates to a failure by many to plan properly for the end of their life.”  

Many of the issues discussed in the paper are of general relevance to all Australians but there are particular issues relevant to people with dementia.  

“More discussion, debate and community-wide research is needed to ensure the more complex and specific issues of dementia are covered,” said Professor Cartwright.  

“It is clear that, even if voluntary euthanasia were to be legalised, it would be wrong to end the life of an individual who does not have the capacity to make the decision and who has not expressed previous wishes.   

“It gets more complicated, however, when you start considering whether the prior wishes for assisted voluntary euthanasia by a person with dementia should be respected once they reach the point at which they previously indicated they would like to end their life.  

The difficulty lies in determining whether or not we can be sure the person would want to continue with their request at that time.”  

Surrounding the debate on euthanasia is also the confusion in relation to the terminology used.  

“There are many people who do not understand the definitions or what is considered euthanasia or physician-assisted suicide,” said Professor Cartwright.  

“Giving pain relief which may also shorten life, respecting a patient’s right to refuse treatment, withholding or withdrawing futile life-support systems and, finally, terminal sedation are all currently legal options and they are not forms of euthanasia.”  

Recent research has shown that one in two Australians (49%) have not taken any actions to prepare for an event where they may lose the ability to make decisions. Drawing up a will was the most preparation that many had completed (42%). (1)

Glenn Rees, CEO Alzheimer’s Australia said that “Our focus is to ensure that individuals are both aware of the options that are currently legally available to them, and encouraged to start planning early in the disease process.  

“It is clear that if the present system is to work better for people with dementia and their families more resources are needed for palliative care services in the community.  

“We also need to ensure that there are sufficient residential aged care places for people with dementia, and that there is a bigger investment in services designed to promote planning at end life, including through advance care directives.”  

A workshop will be held on the issues presented in the paper at the Alzheimer’s Australia 14th National Conference on Wednesday 18 May 2011, 3:30pm – 5:00pm at the Brisbane Convention Centre.

(1) Pfizer Health Report Wave 2 Views and understanding of Alzheimer’s Disease in Australia October 2010 Prepared for Pfizer Australia by StollzNow Research page 45

Download a full copy of Planning for the End of Life for People with Dementia Part 2 here.

Download a full copy of the media release.

Download a full copy of Planning for the End of Life for People with Dementia Part 1 here.