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One of the key things to have a good death, indeed to have a good life, is to acknowledge that it is finite.
When someone has advanced dementia, there is extensive damage to the brain, which means that it cannot perform the functions essential to living. Learned motor patterns are lost so people have trouble with personal care and even walking. People lose functional language and cannot always communicate needs and discomforts. Some people become completely non-verbal. When people die with dementia it is usually because they have pneumonia due to a combination of immobility and aspiration of food and saliva.
As a geriatrician, I’ve looked after hundreds of people with dementia at the end of their lives.
As a geriatrician, I’ve looked after hundreds of people with dementia at the end of their lives. One of the things I’ve learnt is how many gaps there are around the knowledge and understanding of the final stages of dementia.
The early symptoms of dementia are subtle, but the last stages, usually around eight to 10 years after diagnosis, are stark. As the population has gets older, more and more of us will die of dementia. It is already the leading cause of death for women in Australia.
By the time someone has advanced dementia, they have lost the understanding to make their own medical decisions. Those decisions fall to their medical treatment decision-maker or substitute decision-maker (the wording varies from state to state in Australia). This is a person who can legally make decisions on their behalf, and is usually a partner or adult child. These decisions can include consenting for surgery, or the use of a medication or whether a person in residential care should be transferred to hospital when they are unwell or have medical care in their home.
This person could be you one day. Or you could be the person with dementia, relying on someone else to act in your interests and in keeping with your values.
Too often the first time these conversations happen is when there is already a crisis.
If a person with advanced dementia has an aspiration pneumonia, antibiotics may help them survive in the short term, but they will still get pneumonia again – their life expectancy is still measured in weeks or months. If the person with dementia finds being in hospital and having painful injections distressing, as a doctor, it can feel cruel to put someone through this. I wonder if that’s what they would have wanted.
The current voluntary dying legislation requires people to only have months to a year to live and to have capacity to decide, meaning it is not available to people in the late stages of dementia.
In my experience, the people with the most detail in their advanced care plans about the medical treatments they don’t want are elderly retired nurses. This is supported by research. In a US study of 2396 physicians, 2081 lawyers and 665,579 people in the general population, physicians were less likely to die in hospital than the general population and less likely to die in intensive care. I would interpret this as the people with the most knowledge of medical care choosing to have care that is focused on comfort rather than cure when they, or the person responsible for their medical decisions, recognises they are at end of life.
My patients who are very elderly with capacity will often choose for themselves to have less invasive treatments. For an adult child, if their parent has not told them what they want before they lost capacity, these decisions can be a terrible burden.
As the voluntary assisted dying legislation comes up for review, the challenging issue of end-of-life care for people who have lost capacity needs to be considered. The moral and ethical issues this raises are complex, but with a robust ethical framework, I think that voluntary assisted dying should be available to people with dementia, as part of an advanced care plan.
People should be able to specify a time in the future when they would want assisted dying, such as the need to move into residential aged care. This will vary hugely between people depending on things like family and financial resources.
Many people living with dementia experience distressing symptoms such as aggression, hallucinations or apathy, and these become more common with severity, eventually affecting around 60 to 90 per cent of people. Of course, this means that many people are not distressed and even those with symptoms can often get relief with the right care and medications.
I don’t like to think about myself getting dementia, but personally, if I were one of the lucky people living with dementia who is happy, I would want to live. But if I became greatly distressed I would like to know I’d had the option of assisted dying in my advanced care plan, for both the sake of myself and for the people who love me.
Dr Kate Gregorevic is a geriatrician working at a hospital in Melbourne.
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