Is death preferable to life with dementia? That’s just one question to be answered. Legislation would need to be rewritten from the ground up.
Expanding VAD in Victoria to encompass people with dementia would require a complete overhaul of current legislation and could pose a risk to other schemes nationwide, according to experts.
In a recent perspective published in the MJA, researchers and clinicians working across Melbourne, Sydney and the ACT argued proposals to extend VAD legislation to people with dementia posed a challenge to the overarching principles of VAD frameworks nationwide and risked destabilising the “fragile social compact” on which those frameworks rest.
“Proposals to extend the existing VAD legislative framework to include people with dementia present fundamental social, ethical and clinical challenges,” the authors wrote.
“While some may prove less intractable than others, and it is not impossible that in time all will be able to be addressed effectively, a necessary condition for such a change is a renewed and sustained social debate that re-examines basic premises and assumptions.
“VAD in dementia would constitute a completely different entity from the current regime.”
According to the authors, expanding VAD to include people with dementia risked violating the three fundamental conditions for eligibility underpinning legislative frameworks nationwide:
- diagnosis of an advanced, terminal illness;
- “intolerable” suffering as determined by the patient; and,
- the capacity to make relevant decisions regarding care.
In particular, the complexity and ambiguity of the “clinical circumstances” surrounding dementia created significant challenges for VAD frameworks, the authors said, with common definitions of advanced dementia relying on fundamentally subjective descriptions of lost or maintained cognitive function.
Introducing public policy that accepted dementia as a condition for VAD could also produce “profound and unpredictable effects” for patients and families, including “widespread acceptance” of stigmatising assumptions, such as that death is preferable to life with dementia.
In terms of whether advanced care directives and substitute decision-making offered a potential solution to these challenges, the authors said the use of such tools raised additional “problems and uncertainties”, particularly given the limitations in advanced care directives’ scope to compel specific treatments.
The full perspective is available here.