THE NIGHT before my mother-in-law was to be admitted to a nursing home, she was placid, smiling and unsuspecting. The grandchildren held her hand and humoured her. Her husband stroked her arm and reminded her to eat. At 80, she was physically healthy. But after 10 years of sliding into dementia, she was now seriously confused, unable to speak in sentences, or to find her own way from one room to another. She still knew us, made attempts to follow our conversations and join in, and always responded to our loving care.
But none of us around the dinner table that night could imagine what lay in store for this gentle, affectionate woman once she entered the nursing home system. We had expected some deterioration. Isn’t that what everyone says happens to the loved ones you admit to nursing homes? But what happened to my mother-in-law – her shocking and immediate decline – is an indictment of a system that would not be tolerated if children’s health and human rights were at stake. The plan was for two months’ respite care while her husband had a knee-replacement operation.
But within two weeks of being admitted to a home, my mother-in-law was a dazed, drugged and shuffling shadow of her former self. Within a month, she was also bruised and lacerated from falls and collisions, her legs cut and swollen. Within two months, her due-home date, she was unable to walk or talk. She was under sedation. She recognised no-one. Her behaviour, which had become erratic and sometimes wild, meant she was tied by a sheet into a restraint chair in the psycho-geriatric ward of a hospital.
This is how I began a story for the Sydney Morning Herald in 1996. Australia’s aged care system has undergone many changes since that Dark Age. But how far has it really come? For example, do family members when confronted with poor care feel cowered by the system as we did back then? We didn’t think of litigation, of compensation, of making the nursing home legally accountable for my mother-in-law’s drastic deterioration. It had put her on the major tranquilliser Serenace immediately though she’d never needed medication before and she’d never had a fall in her husband’s care. Legal action is not generally the Australian way. Nor did we think of my mother-in-law as a consumer with enforceable rights to a quality service. We complained quietly, anxious not to alienate staff. We took no official action. We were paralysed by guilt.
The ABC Lateline program on aged care last week showed that family members have little power in a conflict with management over poor care. In the cases highlighted, one woman who questioned procedures was barred from visiting her mother; another who complained was told to find her mother another place where she’d get “silver service”. A third woman told ABC radio that after she’d raised care issues she’d been restricted to visiting her husband a couple of hours a week; and was threatened with police action when she breached the ban. Disputes that lead to lock-outs are probably rare. But the power is there for homes, despite their huge federal subsidies, to turf relatives off the property.
Grievances are meant to be handled by the federal government’s Aged Care Complaints Scheme. It gets around 12,000 complaints a year. Understandably it encourages people to try to sort out problems with management first. The Sydney elder care lawyer Rodney Lewis told me the scheme often failed to deal satisfactorily with serious claims involving individuals who have been traumatised or injured; it deals better with systemic “big picture” issues.
So where can aggrieved relatives go? To court, yes, but who can afford to sue? Lewis suggests another avenue to “bring justice to the bedsides of people who don’t have much money and have a real claim of poor quality care”. This is the Consumer Trader and Tenancy Tribunal (the name may differ in each state). These tribunals enforce the Australian Consumer Law which requires that a basic level of quality service is implied in every contract with a consumer whether written or verbal. And every nursing home resident is a consumer of services. No lawyer has tested the consumer tribunal avenue but Lewis is considering a case now. Would making it easier to sue nursing homes for poor care open the litigation floodgates and do more harm than good?
“Is it a problem to empower people?” Lewis asks. “Is it wrong for them to have access to justice at a reasonable cost? I don’t think so.” Consumer tribunals award modest damages so it’s not a path to riches. [For more on this see Complainer or Consumer Claimer? What would you do? at the Aged Care Crisis website]. Lewis believes a dose of litigation is the medicine the aged care sector needs to employ more staff and lift its standards. If our family had taken legal action, set some precedent in 1996, might we have put the frights on the industry and speeded up the business of aged care reform? I’m still unsure.
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