Life Matters

Choices and Aged Care

What type of choices do older Australians have when it comes to aged care? If you are like me you like choices. Every day we are continually faced with choices. Choices about what to buy at the supermarket; choices regarding medical care; choices for holidays, choices in cars; in homes; choices about gender selection when having a baby and choices not to have one; and choices when diagnosed with gender dysphoria. If you live in Victoria, Australia, you have a choice when to end your life. The Voluntary Assisted Dying Act 2017 gives people, who have a terminal illness and less than six months to live, the choice to end their lives. The Victorian Government expects that 150 people a year will use the arrangement offered through the Act.

There are difficult choices to make in life and one of these is when a person needs aged care. Such choices are worrying many older Australians. The Royal Commission into Aged Care Quality and Safety is revealing the state of aged care in Australia and the picture is grim. In the aged care sector, there is a shocking tale of neglect. The Royal Commission is committed to systemic reform of the aged care system, however for many it cannot come soon enough. The Aged Care Commission released their interim report on 1 November 2019. The final report is not due until 12 November 2020.

In the Interim Report the Commissioners identified three areas which require immediate action:

  1. The provision of more Home Care Packages to reduce the waiting list for higher level care at home (16,000 people died waiting for Home Care Packages they were approved for).
  2. To respond to the significant over-reliance on chemical restraint in aged care, including through the seventh Community Pharmacy Agreement.
  3. To stop the flow of younger people with disability going into aged care and expediting the process of getting those younger people who are already in aged care out.

In Australia we have a telephone and internet-based national aged care system called My Aged Care. The interim report tells us that people in their 80’s and 90’s find the system ‘frightening, confronting and confusing.’ This was my mother’s experience prior to her death earlier this year. Without my help navigating the system she would have been at a loss. What do older people do when they have no family, few or no friends and are isolated or homeless? Many of them waste away and die far too early.

Choices are important, even in old age.

The interim report is difficult to read. Not because it is in legal jargon but because it is so confronting. There are so many older Australians receiving substandard care; people are malnourished while aged care providers make a profit; people in aged care are chemically constrained (given psychotropic medication) as a means to control their behaviour. Also, the commission reported 4,013 notifications of alleged or suspect physical and/or sexual abuse. Is this just the tip of the iceberg?

All of us who live a long life will grow older and many of us will need aged care support. The choices must be available, and much has to change in the aged care sector. No one, with a beating heart would want a loved one to be beaten when they are unable to defend themselves; to lack wound attention; to receive poor continence management; to lie in urine or faeces for hours and hours; or suffer from hydration. This is the picture of substandard care, of neglect in aged care. This is what is happening Australia today. The Royal Commission rightfully concluded that the aged care system depersonalises older people.

What is it like when choices are taken away from an older person? The interim report stated ‘a routine thoughtless act—the cup of coffee placed too far from the hand of a person with limited movement so that they cannot drink it, the call buzzer from someone left unanswered, the meal left uneaten with no effort to help—when repeated day after day, becomes unkindness and often cruelty. This is how “care” becomes “neglect”.’ Read more here.

While my mother was in a wonderful aged care facility with dedicated and kind staff one of her greatest fears in the last few weeks of her life was ‘where was her buzzer?’ Each evening as my sister Christine and I left her we had to reassure her that the buzzer was beside her in bed. We would place her hand on the buzzer. We spoke with staff and they attached the buzzer to her sheet or her pillow, so it was close by. But somehow during the night the buzzer would become dislodged. Often we would find it in the morning dangling on the floor, out of reach. When an older person is weak, distressed and cannot find the buzzer in times of need it is an anxious and frightening time.

I look forward to the changes in aged care. I look forward to the Federal and State Governments working together to implement an aged care system with quality standards that are effectively monitored. An aged care system that is affordable and gives the elderly self-respect and a dignity of care. It starts with listening to older people, involving them in their care decisions, asking them for their opinions by talking to them directly and giving them choices. Choices are not optional; choices are a fundamental human right for every person—even when older.  

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