Voluntary assisted dying should not be available to dementia patients

As an old-age psychiatrist and as a geriatrician, we have spent our working lives caring for people with dementia. We know the toll that this progressive, neurodegenerative disorder takes on those affected. We are dismayed at the push for voluntary assisted dying to be enshrined in an advance care directive, or living will, as a “solution” to the problems created by this illness.

Dementia is already associated with significant stigma and fear. These will only be compounded if those with dementia have access to assisted dying.

Dementia is already associated with significant stigma and fear.Credit: Danielle Smith

We all know of overstretched caregivers and have seen the cases of neglect and inadequate care as highlighted by the aged care royal commission. These are caused by systemic failures to provide enough trained staff and resources for people with dementia. The recently announced 15 per cent increase in aged care staff salaries, mandatory minimum staffing requirements and 9500 extra home-care packages should help with this, but more can be done.

Dementia has early, middle and late stages, which last an average of one to two years each. More than one-third of patients will die of other causes before their dementia becomes advanced. At diagnosis, those affected have already lost some degree of function, which can impair decision-making. In late-stage dementia, many need care in a nursing home, where 80 per cent of residents have dementia. Those severely affected, who may be bed-bound, incontinent or mute (or all three) often succumb naturally before long with supportive care alone. There is no need to treat complications like pneumonia in every case and no benefit to feeding tubes to prolong life. Adequate palliative care can enable death with dignity.

A small percentage of people with dementia experience behavioral and psychological disturbances such as aggression, agitation, depression or psychosis. For these, expert assessment and treatment through statewide aged psychiatry services is available. There is a national Dementia Behaviour Management Advisory Service to assist. There are also specialist dementia units in many nursing homes, and state-funded psychogeriatric nursing homes provide expert care.

Most people with dementia do not “suffer”, as they have limited awareness of their incapacity and functional decline; most seem content. Family members can be distressed on their behalf. But should we allow an assisted death to spare the suffering of relatives or to prevent notional future individual suffering that might never occur?

While voluntary assisted dying might seem a liberating option for some, it could also become a duty or obligation to others. Assisted dying is a quick, cheap option for families and governments. Currently, those with dementia have a legitimate expectation of care, but if assisted dying is available, they will have to choose between care and death. Elder abuse (financial, physical, psychological and neglect) is widespread, with one in five aged people affected. This is often perpetrated by close family members. Inheritance impatience is also well recognised. The availability of voluntary assisted dying can be a disincentive for governments to provide better aged care options and limit research efforts as well.

In a Japanese movie called Plan 75, those turning 75 receive the offer of free, state-funded euthanasia and funeral services. If living wills are permitted to include voluntary assisted dying for dementia, a logical extension would be to allow it for those who are tired of living, for those with treatable psychiatric conditions and for children. Euthanasia on demand for any reason is what some proponents of voluntary assisted dying want. When voluntary assisted dying was legislated in Victoria, reassurances were given that its scope would not be expanded. But this is exactly what is being suggested now and what has already happened in Belgium, the Netherlands and Canada.

If voluntary assisted dying were available, what would happen if the patient was unaware or content or objected when the predetermined time for death arrived? Would he or she be sedated and held down, as occurred in one notorious Dutch case? How would it be determined (and by whom) that the point had come for assisted dying? At diagnosis, most people with dementia have several years to live. Upon nursing home admission, a person may just be impaired enough to be unsafe to live alone, yet still have a fair quality of life.

Instead of voluntary assisted dying, more community supports for those living with dementia are needed. Better mental health and care provision, better education for staff and families, better support for carers, better respite services and more palliative care in nursing homes are all needed. Australia needs to provide better care for its valued older citizens, as they have cared for others in their lives. In a civilised society, optimal care provision, not doctor-assisted death, is the required prescription for those with dementia.

Emeritus Professor David Ames AO is an old-age psychiatrist in Melbourne and a former director of the National Ageing Research Institute in Parkville. Dr John Obeid is a geriatrician in Sydney and a federal councillor of the Australian and NZ Society for Geriatric Medicine.

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