Voluntary assisted dying in dementia – compassion in adversity

Oct 5, 2024
Human head profile and jigsaw puzzle.

Ian Chubb’s story in P and I last week is a familiar one to all health and aged care professionals involved in the care of people with dementia. He described the terminal stages of his wife’s dementia and his anger that they were unable to terminate her illness at an earlier stage.

Dementia is now the most common cause of death for women and the second most common cause for men. The illness can last for up to 15 years or more.

The last years can be undignified for the person with dementia and excruciating for the family. Many children are unable to visit their parent in a residential aged care facility because they find the experience intolerable to bear.

In the last years, the person with dementia is typically bedfast and incontinent. Communication can be minimal or non-existent and they may no longer recognise their spouse or children.

Many family members will express the view that they wish their own life to be terminated if they develop dementia. They do not wish to experience the indignity of terminal dementia or put their family through the same situation.

The current law around Voluntary Assisted Dying (VAD) does not allow its application in dementia. In the case of neurodegenerative disease, to be eligible for VAD, the person has to be within 12 months of death but have capacity to understand the request for VAD and its process. They also need to have capacity at the time of death to reconfirm their wish to proceed.

Advanced Care Planning (ACP) allows a person to define the types of treatment they wish in the event of illness or disability. This becomes invalid as soon as a person with dementia loses the capacity to reconfirm and understand the ACP.

An Enduring Guardian can act as substitute decision maker for medical treatments such as surgery or medication or even to discontinue life-preserving interventions and allow a natural death to occur. They cannot, however, give approval for an active process to facilitate death.

There is a natural reluctance on the part of people of faith and others to allow VAD in dementia. For some this is an ideological stance while others are concerned that relatives will facilitate VAD in an impatience to inherit or so that they can move on with their life.

In view of the prevalence of this terrible disease which will triple in the next 30 years, we must address the issue of VAD in dementia in the near future. Children who have cared for parents with dementia will not accept that they have to suffer the same indignity or subject their children to the same distress.

Once VAD has been generally accepted by the community, the pressure to allow VAD in dementia will be unstoppable. This acceptance will gain ground as health professionals and families witness the reassurance patients experience, once they have been approved for VAD, even if eventually they never use it.

What is required for VAD to be extended to people with dementia is a variation of ACPs to allow people with early, but confirmed, dementia who still retain decision making capacity, to establish objective criteria for their end of life.

These objective criteria need to be determined by professional bodies such as the Royal Australasian College of Physicians, Royal Australian College of General Practitioners and the Society of Geriatric Medicine. They criteria might include urine and faecal incontinence, immobility, dysphasia and inability to recognise close family members.

Once these objective criteria are established, there will be a safe pathway for health professionals and families to avoid the worst aspects of terminal dementia.

Up until now, this subject has been almost taboo. It took a great Australian, Ian Chubb, to bring the subject into the light of day. It is imperative to introduce this difficult question into public discourse.

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