We need a shift in the way we imagine what elderly and vulnerable residents ‘deserve’
“I mean, just look at her. How can you bear it?”
He is right. I have looked at her, in fact every day for the last week on the medical ward, and I can’t bear it any more than he can but what we can’t agree on is how to fix the problem. He wants to go the whole way – “tube feeding, intensive care, whatever it takes.”
But the reality is that she is dying and none of that is appropriate.
People should be described in human terms, but she really is as frail as a bird, all 37 wasted kilos of her, the plump inflatable mattress reducing her to a tiny speck in the bed. She sleeps all day, incapable of intelligible conversation but it’s her skin that is the most obviously disturbing.
The area around her mouth is surrounded by sores that bleed on contact. Her gums are spongy and irritated, causing her to refuse even water. Red and blue pinpoint bleeds line her fragile shins. Her “gummy” eyes open with great difficulty, needing constant swabbing with cotton balls. It’s only a matter of time before the ulcers on her sacrum will turn into craters.
She has undergone a battery of tests, but nothing screams out. She doesn’t have pneumonia or a urinary tract infection, common diagnoses at the end of life. Swabs of her skin and mouth are unhelpful.
When a diagnosis is not apparent, the patient is often labelled a “diagnostic dilemma”. The dietitian confirms that the patient is not meeting her energy requirements and has poor fat and muscle mass.
But what about her mouth and gums, I wonder. Why does her skin look so bedraggled in the absence of a gross infection?
A normally shy resident speaks up. “Could it be scurvy?”
Scurvy was a problem for ancient maritime explorers, from Vasco da Gama and Magellan to Captain Cook, all of whom lost sailors to a condition that came to be known as the plague of the sea.
The concoction of physical and sensory symptoms in the nearly 2 million lives lost was attributed to a lack of salt, insufficient oxygen, even laziness and it was widely held that dominant was the nation that could prevent the scourge.
After the discovery of vitamin C as a cure for scurvy, the problem receded.
Some centuries later, as a result of vitamin C being easily available via fruits and vegetables, no one on our team has ever seen scurvy so when the resident mentions it, all eyes turn to him.
He rotates the screen of the mobile laptop for us all to see, and as we compare the images on the screen to the appearance of our patient, the penny drops.
Indeed, scurvy should have been relegated to an old-world disease, except in the absence of proper prevention and cure, it still crops up.
Some years ago, doctors in Sydney identified a resurgence of scurvy in diabetics who were avoiding eating fruit.
Other risk groups include alcoholics, the marginalised and the elderly who eat insufficient fresh fruit and vegetables.
I thought about my hapless patient as Australians read the conclusions of a two-year royal commission into the state of the country’s aged care facilities.
The report highlighted many inadequacies but one that I found particularly troubling was discovering just how little money is spent on food for nursing home residents.
The average figure turns out to be $6.08 per resident per day, to cover the cost of three meals and snacks. This figure is significantly lower than that found in community-dwelling adults ($18.29) and prisoners ($8.25).
Spending on fresh produce has declined and spending on supplements gone up.
Ten years ago, a nurse told me that she left her job in dismay after discovering that on birthdays, a cheap supermarket cake was served one slice at a time, with the rest returned to the fridge for later use. She objected to the commodification of the elderly and thought that the home could come up with a better way of marking a special occasion. While the practice sounded, well, cheap, I didn’t know whether it applied to food served on a regular basis, but in the ensuing years, I became attuned to the evidence.
Today, studies suggest up to half of nursing home residents are malnourished. This is evident in their weight, their skin, their stamina and emotional reserve.
In hospital, they have difficulty recovering from fractures and wounds, are more prone to severe infections and rarely return to their previous level of function after relatively minor setbacks.
A worrying trend is the assumption that people with cognitive impairment cannot be expected to maintain a healthy weight, but as experienced professionals point out, the diminished ability for self-care can and should be matched by improving identification and solutions.
What’s needed is a multidisciplinary transparent and accountable structure of malnutrition screening, assessment, nutritional planning, provider education and indeed, a shift in the way we imagine what elderly and vulnerable residents “deserve”.
Of course, highlighting the problem is one thing, paying for the solution is another.
Amid the debates about affordability, it would be a shame to be distracted from the real issue that we must find a way to honour the dignity of our elderly and vulnerable, once contributors to societal prosperity, today dependant on our advocacy.
After a week in hospital, my elderly patient had deteriorated too much and in too many ways to respond to treatment. With her family’s permission, she was palliated.
It seems a travesty of modern medicine in a rich country that the proximal cause of death was not an unassailable disease but plain old malnutrition.