The articles by Ian Chubb and John Ward calling for an extension of voluntary assisted dying (VAD) to cover dementia evoke the deep sadness experienced by many people confronted with this condition.
It is true that the incidence of dementia is increasing, causing great suffering, and that VAD is now legal and generally accepted in most of Australia. It is also true that for many people it seems natural to extend the availability of VAD to allow people with dementia to avoid anticipated personal indignities and painful burdens on their families.
Without diminishing our compassion for Professor Chubb’s agonising experience, however, we feel the need to point out that extending VAD in the manner proposed is not as straightforward as it seems. There are major issues regarding both VAD and dementia in relation to which extended public discussion will be needed before we would be able to take such a step.
First, the basis of VAD as established in all Australian jurisdictions is that it needs to satisfy three conditions: that the person (1) has a terminal illness with a limited prognosis, (2) is in clear consciousness, and (3) is encountering suffering that he or she considers to be intolerable (actual formulations vary slightly across the jurisdictions). It is clear that while the first may be relevant for a person with dementia at some point, the other two are unlikely to apply to people with dementia at that same time.
As stated by Dr Ward, possible solutions can be suggested: for example, allowing advance directives to specify conditions in which a VAD order would be invoked. However, as has often been pointed out, it is common for people to declare that they would not want to live if they suffered a particular kind of medical event, only to change their minds when the time comes. Also, it is inherently assumed that the individual signing the directive is the same “person” who comes to exist with the diagnosis of dementia, even while there is a frequent simultaneous concern that the condition is robbing the person and those around them of their self. Even if dementia is very appropriately considered as not diminishing personhood, that doesn’t mean that the person doesn’t change. The fundamental costs that we feel dementia represents diminish the plausibility of our being able to make decisions for future versions of ourselves with dementia.
If nothing else, this means that a version of VAD applicable to patients with dementia would be a different legal and ethical object than that which currently exists. It is not inconceivable that such an alternative version could be possible, although it needs to be remembered how difficult it was to establish the current legislation and that to do so would require a renewed public debate prior to passing new laws. This would be an important debate to have, even if it may turn out to be even more divisive than the last one.
The other set of issues relates to the nature and public understanding of dementia. The greater community focus on the perceived challenges of dementia, and the development of earlier possibilities of diagnosis without improvements for most people in available treatment options, has led to a dramatic increase in the level of anxiety about dementia’s impact on us, individually and collectively.
While negative experiences of dementia (both of people with dementia and their caregivers) are certainly common they are not universal. There is evidence that family members are often poorly supported about how to care for people with dementia and receive little instruction about how to care for themselves. Better personalised support for carers and people with dementia does have an impact on the experience of illness. Renewed focus on caring and supporting care networks would likely change the widely-held assumption that the dementia experience is invariably intolerable, which would be beneficial, regardless of the impact on the availability of VAD.
People’s views on important issues can and do change in dementia, including beliefs about what value their experiences might have in the future. Knowing this raises further worries about the safety of predetermined triggers. While the development of incontinence, for example, may be “objective”, the values or concerns relating to the experience of a particular person with dementia is not. These are complex, highly personal, evaluations which can be surprising and dynamic. They can also be difficult to express, a challenge exacerbated by the fact of dementia itself. In wishing to empower a person anticipating a future with dementia, therefore, we may risk disempowering the later person with dementia who may experience their illness in a manner different from what they expected.
While there is merit in considering Awareness of cognitive declines (ACDs) as a part solution to the challenges of enabling access to VAD for people with dementia there may be better and more workable solutions. For example, we could explore the role of supported decision making in enabling people with diminished capacity more say in decisions about medical treatments more generally. If appropriate training, guidelines and legal changes can be introduced to assist it, such models of decision making may enable people with borderline capacity voices about a wide range of matters, with less risk of proceeding without their input.
These are complex issues, of undoubted intense and increasing interest to the community. We need to have the public debate but, given the diverse array of views about the subject, a solution that is regarded as generally acceptable may be some way off.
For more on this topic, P&I recommends:
Given the choice, would my wife have chosen to ‘let dementia take its course’?
Voluntary assisted dying in dementia – compassion in adversity