Answering the VAD Dementia Quandary

Dementia is the leading cause of death for women in Australia, second overall.  

Access to Voluntary Assisted Dying (VAD) for a person with dementia is the outstanding question.

“Current VAD legislation in South Australia contains two major impediments to a person with dementia requesting voluntary assisted dying. The requirement for surviving less than 12 months (the prognosis), and the requirement for capacity at every stage of the VAD process. These two criteria combine to effectively preclude a person with dementia from requesting VAD.

“Usually, by the time a person with dementia has less than 12 months to live, they would commonly be assessed as not having decision making capacity in relation to VAD,” commented Em Prof John Willoughby.

“There is a safe way for a person with dementia to request VAD, however this will require legislative change.”

These comments were made by Em Prof John Willoughby during his presentation to a VADSA public meeting on April 13, where he examined how VAD can be safely made available to a person with dementia. The full presentation is available on our facebook page here. (starts at 20)

“The prognosis of less than 12 months to live should be removed. There is no value in requiring a person to continue living with an untreatable, physically painful or psychologically distressing condition.

“The question of capacity can be managed by the person developing and signing a legal document - their legal consent to proceed with an assisted death when certain conditions occur. The document would be prepared and signed while the person has capacity. The document would list the conditions to be met for an assisted death to proceed, including whether they wish VAD to proceed if they later show resistance.

“In circumstances where the person has not made an advance VAD plan, a community authorised VAD plan could be developed.

“The Advance Assisted Dying Request for Dementia document would be witnessed by a medical, a legal and an independent witness.”

A draft of the ADVANCE ASSISTED DYING REQUEST FOR DEMENTIA is provided here. The document was developed by Doctors for Assisted Dying Choice.

Em Prof Willoughby addressed 16 different arguments used by opponents in arguing that VAD should never be available for a person with dementia, ranging from the possibility that it would result in a decreased incentive to undertake research on dementia or provide aged care services, to VAD being used to reduce the burden on the person’s family or the health system.

Em Prof Willoughby also addressed the option of voluntarily stopping eating and drinking, or VSED. This is a legal option which has been used for decades in SA and is still being used by people who do not meet the requirements for VAD. Symptoms can be managed by an informed care team, with thirst being the major challenge. It can take weeks to die using VSED.

Future Action

Canada and the Netherlands both allow a person with dementia to use their VAD equivalent. Neither country requires the person to have a time limited prognosis. Data from both countries shows that the uptake of VAD by a person with dementia is low, when compared with the number of people who die with dementia. While both jurisdictions allow a person who has lost capacity to use VAD, it is clear that doctors are reluctant to proceed, regardless of the person’s clear intent when they still had capacity. For example in the Netherlands, where VAD has been available for over two decades, the most recent report shows that 336 people with dementia used VAD, eight of whom had lost capacity. This is in a total of 9068 VAD deaths in that year, 2023.  

VADSA takes the view that it is important to continue to advocate for the rights of people with dementia to be able to choose an assisted death. This includes people who have lost decision making capacity.  Our view is that the first step is to remove the requirement for a 12 month prognosis. VADSA has found no clinical evidence which supports prognosis providing a safeguard for VAD, or adding any clinical value to the assessment of a person’s eligibility for VAD.

VADSA also understands that the ACT VAD Act, which does not include a 12 month prognosis, may allow a person with dementia to request VAD. The absence of the 12 month prognosis, combined with the legal explanation of the word ‘advanced’ as used in the ACT legislation, will likely allow a person to request and use VAD while they still retain capacity. The ACT VAD Act commences in November 2025. The evidence and data from the implementation of VAD in the ACT will be available to inform the review of South Australia’s VAD Act due in 2027.

Note:

pic 1: top pic shows amyloid build up in red on scan on right

pic 2: part of the audience of over 70 people who attended the session

pic 3: Em Prof John Willoughby answering the dementia quandary

pic 4: attendees included Hon Anne Levy (front right) and Hon Sandra Kanck (centre, in red) who both tabled VAD Bills in SA