Jane McCredie: Live a little

“YOU’D think people would have burnt the nursing homes to the ground”, writes New York surgeon Dr Atul Gawande in his book, Being Mortal.

The reason we haven’t, he writes, is because we lack the imagination to find a better way of caring for old people, a way to “make life worth living when we’re weak and frail and can’t fend for ourselves any more”.

Speaking at the recent Sydney Writers’ Festival, Dr Gawande questioned why people seeking residential care for an elderly parent so often stressed safety above any other consideration.

“Will my mother be safe here?” was the frequently asked question.

He has a point. Basic safety matters, of course, but few of us would see it as a sufficient end in itself when it comes to our own lives.

What about fulfillment? Interest? Happiness? Even excitement?

Too often, we deny the elderly the right to take risks, despite cherishing that right for ourselves.

A member of my extended family, for example, had a grandson smuggle whisky into her aged care home so she could sneak a glass or two of an evening — a pleasure lost to her when she became too frail to get the forbidden bottle from its hiding place.

We don’t deny the right of an 18-year old to drink themselves into oblivion, but we’re just not comfortable with an 80-year old making the same choice.

Denying the right to take risks is a kind of infantilisation, a statement that somebody cannot be allowed to take responsibility for decisions about their own life.

In nursing homes, Dr Gawande writes, this often becomes a battle about food.

“A woman with Parkinson’s disease keeps violating her pureed diet restrictions, stealing food from other residents that could cause her to choke. A man with Alzheimer’s disease hoards snacks in his room, violating house rules. A diabetic is found eating clandestine sugar cookies and pudding, knocking his blood sugar levels off his target.”

The response to these small rebellions varies, he writes.

“In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away.”

Why, Dr Gawande asked at the festival, couldn’t nursing homes have a communal kitchen at their focal point, instead of a nurses’ station? And why not a fridge that residents could access whenever they wished?

If a resident with diabetes chose to go on a sugar binge, didn’t he have the same right to take that risk as any other person with diabetes?

It’s true that an elderly person with dementia may not be able to fully assess the risks of their behaviour, but aged care tends to remove the right to autonomous decision-making even from those with excellent cognitive function.

There are many reasons for this aversion to risk-taking behaviour: the fear of being sued if a resident’s choices have adverse consequences for their health, staff’s desire to control the behaviour of “difficult” residents, and genuine concern for the welfare of vulnerable people.

But surely we can do better than stripping the autonomy of adulthood from people nearing the end of life?

A friend’s great-aunt celebrated her 90th birthday by doing her first parachute jump. There should be more of it.

Jane McCredie is a Sydney-based science and medicine writer.