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Rather than being viewed as an inevitable and a natural process of life, death remains a sensitive topic that many find difficult to discuss openly, let alone plan for.
Despite the progression of dementia and worsening of symptoms as a person nears the end of their life, is it possible to die well? And what could this even look like?
Note – this story deals with discussions about end-of-life care. If this article brings up any strong emotions, or you would like support, please call us at any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.
Making choices early to feel protected and secure
For John, who lives with dementia, dying well is about dying on his own terms as much as possible.
“I do not want religion involved, it is not for me,” John said.
“I would also like to avoid hospital and do not want to be in a ‘home’.
“When I die I would like people who knew me to stop for a moment and have a nice thought. That and be nice to each other. I don’t need anything extravagant, that is all I want, for people to be nice to each other.”
John says having plans in place for after he dies is an important aspect of dying well for him.
“I want my wife to feel protected and secure,” John said.
“We’ve got great kids, and amazing grandkids that she will be surrounded by.
“It is about making sure she will have a really good post-me life.”
Part of John’s preparations have included creating an advance care plan.
Advance care planning centres around your future health care choices. It enables you to make some decisions now about the health care you would or would not like to receive if you were to become seriously ill and unable to communicate your preferences or make treatment decisions.
Ideally, advance care planning will result in your preferences being documented in a plan known as an advance care directive and the appointment of a substitute decision-maker to help ensure your preferences are respected.
An advance care plan is something Dementia Advocate and former carer Heather says she wished had been in place for family members she cared for, to help them die well. This includes for her mum, who lived with dementia.
“None of my family had their affairs in order or considered advance care planning,” Heather said.
“By having an advance care plan, as your carer, you are relieving me from the decision-making complexities as your dementia progresses.
“It gives you, the person living with dementia, control over your life when you might feel like you have none.
“It means we can enjoy our time together, we’ve prepared and you have taken some of the pressure off me as a carer.”
Voluntary Assisted Dying
Voluntary assisted dying laws allow terminally ill adults to request and receive medication to end their lives.
Currently, the eligibility criteria in the Australian states that allow for voluntary assisted dying explicitly or implicitly exclude people living with dementia from accessing voluntary assisted dying due to the variability of the disease trajectory and impact on cognitive function and decision-making capacity.
Dementia Australia Services, Advocacy and Research Executive Director Dr Kaele Stokes said that there are different criteria that must be met to access voluntary assisted dying, including that you must have decision-making capacity throughout the entire process.
“It is often assumed that people living with dementia, and associated cognitive decline, lack the capacity to make decisions,” Dr Stokes said.
“A person living with dementia will experience cognitive decline but this depends on the type of dementia they develop as well as a range of other variables which will be different for every individual.”
Dr Stokes said some people living with dementia will maintain a degree of cognitive capacity for a significant time post-diagnosis whilst others could experience a quicker loss of cognition.
“Given dementia is a progressive condition, there is support among some people impacted by the disease for the view that individuals with dementia should be able to make the decision to access voluntary assisted dying while they still have the capacity to do so,” Dr Stokes said.
“Equally, people living with dementia, their families and carers have also expressed concern about the potential for people living with dementia who do not have the capacity to make an informed decision about voluntary assisted dying to be vulnerable to influence or manipulation.
“There is a diversity in opinion and as the peak advocacy body for people impacted by dementia, Dementia Australia reflects this diversity by neither supporting nor rejecting the concept of voluntary assisted dying.
“What we advocate for is choice and a greater engagement with people impacted by dementia to understand how to best empower them to make decisions about their life and death.”
For more information about the stages of dementia, and end of life planning, please visit our website www.dementia.org.au or call us at any time on 1800 100 500.
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