During our lifetime, we face a series of developmental tasks that are universal to the human condition. The last of these stages comes in our final years, when we face our mortality, reflect back upon our life’s achievements, and either reach a position where we can come to a calm acceptance of our inevitable death, or fall into ruin.
The French film Amour – which won the Academy Award for best foreign film and was nominated for best picture, best actress, best screenplay and best director – shows an ageing couple, Georges and Ann Laurent, painfully negotiating that final developmental task together.
Anne is a retired piano teacher of some renown. Our first real sight of her is at a Parisian concert given by a successful former pupil, now a rising star. She appears to be ageing gracefully but a stroke the following morning changes all that. The audience becomes acutely aware of her disability following that event, and of the loss of dignity that accompanies it.
Early on, she extracts a promise from her husband to never return her to hospital. Anne appears to lose hope early on, seemingly prescient as to the path her life will inevitably take from that point. She is conscious of the burden she will pose her husband, and takes a morbid interest in the details of a mutual friend’s funeral, no doubt imagining her own. She doesn’t want to go on, but presents as more demoralised than depressed.
A second stroke leaves her incontinent, intermittently confused, and barely able to speak. Tellingly, one of the few words she regularly repeats is “hurts”. Keeping his promise to her, Georges resists the urging of his daughter to have Anne placed in a nursing home, to the admiration of his neighbours.
The story is gruelling and relentless. It is clear from the start that this is not going to end well. Art, this may be. Entertainment, it is not. But George’s struggles will be familiar to many.
Roughly 85% of the elderly in Australia reside within their own homes, and receive care from a variety of paid and unpaid (usually family) carers. The increased availability of home supports and community care packages has enabled those with even significant disability to continue to remain at home in accordance with their wishes.
While this is arguably a good thing for the elderly, the reality is that it’s a virtue born of necessity. The ageing population is upon us, and no government could hope to fund residential aged care to the point where all those who require care can receive it in a subsidised facility.
Governments promote home care for the elderly as being respectful of the choices of elderly patients and their families, but is this another case of economic rationalism dressed up in the language of consumerism and “choice?” Is home care really “better” for the elderly, and for those who provide their care at home, or just better for the governments who would otherwise have to fund institutional care as the alternative?
The burden of care thus often falls on untrained, elderly and ailing spouses who are ill-equipped to manage the complex medical, functional, cognitive and behavioural challenges that the care for their loved one poses.
Over a quarter of such carers provide more than 20 hours of direct care per week, resulting in enormous levels of carer burden and burnout. Up to half of family carers of those with Alzheimer’s disease, for example, show significant symptoms of depression.
Those who assert their right to be cared for at home often do so without due regard for the consequences of that choice for themselves, their family, and the quality of care they will ultimately receive.
While it is true that staff within aged care facilities are often poorly trained to provide care to residents with complex needs, at least care can be provided in three shifts across 24 hours, within an administrative framework that guarantees that certain minimum standards of care will be met.
Family carers at home will generally have no training, and are accountable to no one for the care they provide which, while well-meaning, is usually destined to be suboptimal at best, and frankly abusive at worst. As many as one in four elderly people are at risk of abuse by family carers, with most of this going unreported.
Sometimes abuse occurs without intent on the part of the abuser. We see this in Amour in a number of scenes. Anne is clearly delirious at one point, and subsequently may well be clinically depressed, yet her access to medical care consists of a weekly visit from her general practitioner; Georges slaps her in another scene for refusing to drink, and his actions seems clouded by his own at-risk mental state.
There is clearly a place for home-based care of our elders across a spectrum of diseases and disabilities. But there is a threshold beyond which it is objectively clear that the demands of care cannot be reasonably met by a sole carer, no matter how well-meaning or well-trained.
To address this issue, we need an objective framework to monitor the safety and quality of care provided at home to ensure the best interests of vulnerable elders are served. Such a framework could be government-led, with input from ageing, caring, nursing and medical stakeholders. The choices of our elders need to be supported, but such choices need to be informed. And home care can sometimes be worse than the alternative.
The audience of Amour is encouraged to empathise with Georges’ choices via director Michael Haneke’s unremitting chronicling of Anne’s deterioration. But had Anne entered residential care, albeit against her express wishes, her quality of life was likely to have been significantly superior to that she experienced in her final months.
The principles of human rights are often invoked as defences against perceived medical paternalism, but when the poor choices of a proxy decision-maker objectively place a vulnerable party at risk, society needs to examine how it weighs the risks and benefits of those choices.