Humanity and rights must be at heart of aged care

Physical care is of upmost importance, but so too is emotional wellbeing, and the love and care provided by families and friends. Picture: iStock

As the community waits for the release of the final report of the Royal Commission into Aged Care Quality and Safety, due to be provided to the Governor-General on Friday, we already know the aged-care system in this country is fundamentally broken. The COVID-19 pandemic has laid bare the particular vulnerability of people in aged care — their case numbers and deaths from the virus a national disgrace. The pandemic has also highlighted how the basic human rights of older people are being disregarded with terrible consequences by a paternalistic and inflexible system.

No one would suggest for a minute that vulnerable people should not be protected from the potential ravages of COVID-19, but nor should people be treated as objects stripped of their dignity and with no need for connection with loved ones or community. All too often during the past year Seniors Rights Service has seen the human rights of older people being disregarded by a system that has failed to ensure they were protected against a virus we all knew was coming or by a one-size-fits-all response that is lacking basic common sense and compassion.

One incident I found particularly distressing involved a person unable to get their father’s personal effects returned for weeks after they had died of COVID-19, apparently due to NSW public health orders regarding laundry. After too many calls to the facility, the family member finally received them all, thrown in a plastic garbage bag and handed over like a bag of rubbish … false teeth jumbled in among war medals, a radio, dirty clothes and other personal effects with no care or thought involved. A final humiliation.

One of the most common calls we have received is from aged-care residents or their families, who have been prevented from seeing their mum or dad for weeks on end, have been unable to hold them, reassure them, comfort them, often during the most stressful of times. While workers were able to come and go from aged-care facilities under infection control procedures, many have wondered why the same could not have been arranged for relatives who needed to be with loved ones, too often, but not only, at the time of their passing. Physical care is, of course, of upmost importance, but so too is emotional wellbeing, and the love and care provided by families and friends. Indeed, many visitors to aged care are providing primary care to loved ones, ensuring they are receiving the care they require. Being prevented from doing so has caused enormous stress and distress to many and, we would argue, unnecessarily.

Government guidelines were issued spelling out how safety could be ensured while providing options for residents to continue to interact with families and friends — but too many facilities just ignored these, perhaps because it was easier and cheaper.

Arguments that the duty of care requires decisions that restrict the autonomy and self-agency of older people “in their best interests” have allowed the system to tip too far in favour of benevolent paternalism. As a community, we have to get the balance right. COVID-19 is not going away anytime soon. We have to find ways of protecting the health and human rights of our older citizens in care. For those close to the end of life, surely, being surrounded by loved ones is a right that should not be denied. Saying a final farewell, holding a hand as the last breath is taken, these are the gestures that mean so much and whose denial will wound for years to come.

Yes, there are many caring and wonderful staff who try to do their best in what is a truly frightening and difficult situation. Only by putting human rights at the centre of a new Aged Care Act, ahead of the business and economies of delivering aged care, will we also get a system that is adequately resourced and supported and that provides dignity and respect to the people in its care.

Margaret Duckett is the president of Seniors Rights Service.