I entered this essay in the 2017 Horne Prize.
We have an abundance of clichés about how to live and die well: approach each day as if it is your last, have no regrets. Yet, for a society that breezily acknowledges death is part of life, we have a profound lack of understanding of our own needs as we age and move towards death.
Moreover, the clichés overlook the great paradox of our existence- that we need to deny death in order to go about our daily lives. Georgia Blain wrote in her memoir The Museum of Words as she was dying from a brain tumour that perhaps we can only live with our mortality by denying it.
As bearable as it may make our existence, denial, unfortunately, does not bode well for negotiating the bureaucratic realities that have embedded themselves in the process of departing this world. Bureaucracy would like us to be organised about death. Get a will. Before you lose your marbles designate a family member to act with power of attorney. Resuscitate or don’t resuscitate? Organ donation? Make sure everything is in writing, please- for your own good and your family’s. Surely you don’t want your children squabbling over when you’d like your oxygen turned off?
Often, events do not unfold with the logic that red tape demands. Time goes before we know it, and the hazy spectre of death becomes a reality that we may still not be prepared to face in our seventies and eighties. A routine check-up, an operation or the onset of a chronic condition can lead to a medical and bureaucratic maze. This was made disturbingly clear to my family in 2016 as we watched my maternal grandfather die a horrible death in a Queensland hospital.
Grandad had gotten old and his body was breaking down, besieged by out of control chronic conditions. Diabetes, a gangrenous ulcer on his heel, and, as we would later find out, cirrhosis of the liver and brain damage. He had lost so much but would continue to keep losing bits of himself in that hospital, most of all his dignity.
As I entered his hospital room for the first time, the smell of pus settled itself in my nostrils, displacing the nauseating hospital olfactory combination of bleach and urine.
I cast my eyes down to his missing heel, which had been hacked away in surgery the previous week. The surgeon had said that Grandad would probably lose his leg, but he would try to save it, which he had. What was left didn’t look dead, exactly, but you couldn’t really say it was alive. It looked like meat, the red giving way to white the way it does on pancetta or bacon. It didn’t seem part of him anymore.
There was no denying that death was in the room. I experienced the realisation of its presence from a point of view outside of myself, like I was in a film and the camera was zooming up to me as it does when a character realises something important.
The thing I had dreaded had started: waiting, powerless, by a relative’s bedside as they slipped away. My family had so far come through relatively unscathed in that department. The deaths we had experienced had been sudden. We had not lost anyone to cancer, had not endured chemotherapy schedules, scans and the stealthily approaching hospice.
My mother, too, realised that his days were numbered. It wasn’t apparent whether Grandad himself had realised; he just looked scared, with his blankets drawn up around his chin.
The surgeon stopped by and gave a run-down of the latest technology they were going to employ on Grandad’s ailing leg. Tubing was plugged into the bandage and suction was applied to keep the wound drained. This would restore the bacon to human flesh, he told us.
We asked the surgeon for advice on Grandad’s cirrhosis but he shook his head. He was a vascular surgeon; we would have to talk to the liver specialist about that.
On our return the next day we discovered Grandad had deteriorated, developing delirium overnight. The staff said this could be due to the after-effects of general anaesthetic, an infection, stress or the build-up of toxins in his system due to his failing liver.
A kind nurse let me into the staff kitchen to make a cup of tea for my mother who was crying in the corridor. After handing it over to her and removing her to the lounge area, I nabbed one of the orderlies outside Grandad’s room, whom I mistook for a nurse.
Is he dying? I asked.
No, the minder replied. Well, not that we know of.
Grandad lived alone in Queensland, my mother lived in Perth, myself in Canberra. I hadn’t seen him for a number of years. My mother had seen him three months previously, at which time he had seemed his normal self. Consequently, we felt the rapid deterioration could not herald anything except inexorable decline.
In the lounge we regrouped and discussed how to make the best use of our time, deciding to do the things necessary for Grandad to receive appropriate care: establish what the time frame was for restoration of his dying leg, organise for him to be discharged to a nursing home, pack up his flat.
Such plans were quickly thwarted. The doctor and social worker said it wasn’t possible to even consider a nursing home. He simply didn’t have the right paperwork. No advanced care directive, no power of attorney. We would have to go through a legal process to determine if he still had capacity, which could take months, and at the end of it my mother may not even be appointed as guardian. A third party from the tribunal may have to preside over his fate.
This was confusing as we had been told he was delirious. Didn’t that mean his capacity was affected? Well, yes and no, said the doctor. When he’s delirious, he doesn’t have capacity. When he is not delirious, he has capacity. You’ve got the right to make decisions for him when he’s delirious, but when he comes out of it he could reverse anything that was decided for him.
On a practical level, surely someone would have to make decisions for him, we argued. Given he no longer knew what city he lived in and could not take himself to the toilet, we assumed he could not return home. He also lived high up in an apartment complex and we were worried that in his confused state he may go over the balcony.
No, said the doctor and social worker. He’s not in the right ward, you see. These decisions on his care needs aren’t made in the acute surgical ward; when he goes to the rehab ward, he will be assessed by an occupational therapist, and a decision will be made then what care should made available after his discharge.
We returned to our separate cities, thinking we would not see him alive again.
A couple of weeks later I got another phone call directly from the doctor. My grandad had lapsed into a coma, and we should get there right away. I was on a plane the next day and met my mother at the airport.
We returned to the hospital, this time to the rehab ward. It struck me as odd to have a patient in a coma in the rehab ward. I saw patients walking the corridors with walking frames. Others were going through the motions of simulated daily activities with the team of occupational therapists.
Immediately, I felt anger sweep through me. He shouldn’t be here, in this ward designed for people who could build themselves up and return to their normal lives. He was dying, as we had instantly identified in our previous visit.
Shortly after, Grandad appeared in the corridor. We were shocked and confused, having been told he was comatose. The doctor responded that he had been unresponsive to all stimuli for the last twenty-four hours, which technically meant he had been in a coma.
At a meeting with the resident and an experienced general practitioner based in the ward, we asked what the next steps were.
Little had changed. He was still in and out of delirium. But now, having changed wards, the staff we were dealing with had to communicate more fully with us.
They suggested we get the aged care assessment process started. The GP gave a word of warning- it could take more than three months, which was longer than Grandad was now expected to live.
But we knew he was dying before, we protested. We wanted to get this process started nearly two months ago.
Each ward has its own goals, was the reply.
We decided on a go gentle approach. He would keep up his medication and was allowed to sit outside in the sun, which he did- all day. But the doctors would not continue with any invasive treatment. It wasn’t clear if he was technically being palliated as he was still in the rehab ward.
He was allowed to have lunch with us in the downstairs cafeteria where we could procure him roast meat and vegetables instead of sick smelling mush.
Thinking Grandad wouldn’t make it to the first weekend in September, we pretended one day that it was Father’s Day. The staff got in on the act and wished him a happy day.
The go gentle approach was not interpreted the same by all staff. One day a liver specialist turned up and suggested he test the fluid in Grandad’s abdominal cavity for infection.
Oh no, we are not doing that stuff anymore, we said.
‘Well I wouldn’t suggest it if I didn’t think it would help.’
In the face of his expertise we acquiesced, only to receive an incredulous phone call from the resident asking us if we had decided to abandon the go gentle approach.
No, the specialist said it was necessary.
‘It’s not, and he could get an infection from the procedure itself. I’ll cancel it.’
My mother was calling around nursing homes, finding barely any that would consider taking him without the power of attorney paperwork sorted. One promising home with a nice garden warned they would not take him if he was prone to “wandering.”
What does this mean? Will he have to stay in his room because he doesn’t like that. He likes sitting outside in the sun.
‘Well taking yourself off for a bit of a stroll might be tolerated, but “exit-seeking” behaviour is too much of a risk. He could wander out the front door on to the main road in front of a bus.’
We were desperate so we assured the nurse Grandad’s behaviour wasn’t exit-seeking, but of course it bloody was- he didn’t want to be in hospital. He asked us every day when he could leave, and said, gesturing towards the nurses, they won’t let you outside. It’s criminal.
More relatives flew in from Perth and packed up his flat, signed off from his landlord. Grandad was now technically homeless.
Grandad spent two nights in a nursing home, then was returned to hospital because he was “highly agitated”. He continued to lapse in and out of consciousness and remained delirious until he fell into his final coma.
But the bureaucratic shemozzle did not end even with Grandad’s death. The gas company would not close Grandad’s account because, according to their records, no one else was authorised to carry out transactions except Grandad. They continued to send my mother his bills.
The day he died, the power of attorney directive came through from the tribunal. The social worker took responsibility for notifying the court. You’re too late, he’s dead.
My mother suffered hugely from this experience. Her physical and mental health endured an enormous assault, as did her bank account, with numerous return trips between Perth and Queensland, taxis, hotel stays, meals, and the fee for a consultant to find a nursing home when my parents could no longer keep looking on their own while dealing with everything else.
Having tried to navigate our way through numerous dead ends, we all came away from the experience with the same questions: why couldn’t the hospital staff just listen to us? Why didn’t they tell us the truth at the beginning? And why was it so hard to get the care that Grandad not only deserved, but required?
What made the whole experience so much more painful was that we knew from the beginning that Grandad was dying and wanted to put measures in place for his care, but the staff on the ward did not see it as their place to acknowledge this reality. They were focussed on doing their job, which was to make a sick person better.
When you have cancer, there is a point at which your specialists level with you: your treatment has become ineffective and you have three months, two years, six weeks.
When you are elderly it is all a bit of a hassle for the white coats. Much better if you shuffle off of your own accord, out of the hospital. In a nursing home, that’s what they are there for.
The doctors on the wards would all say they complied with accepted medical ethics, but my Grandad’s treatment was not really respectful. He only went to palliative care when he lapsed into his final coma. He was never told he was dying; the GP in the rehab ward decided it would be too much of a shock for him to know the truth.
Instead, every morning at about 11, the same doctor would come round and tap him on the shoulder. ‘Hello Jim, have you moved your bowels today?’
What was the point of all this?
No one was overtly ageist- but it is a reflection of the way our society does not know how to relate to elderly people that there were no appropriate care pathways for him.
The medical doctor and writer Karen Hitchcock has argued for our society’s attitude to the elderly to be rethought. In her brilliant Quarterly Essay Dear Life, Dr Hitchcock wrote:
I wonder if the main problem, the first problem, is not that we deny death, but that we deny the entire thing: that we will grow old, that we will be like them…if we saw the elderly as valuable members of society and our future selves- rather than infantilised creatures, leaking from every orifice, their past and their features macerated and blurred- we would not treat them in the ways we do: failing to provide community supports to extend independence, letting them starve in hospitals ill-designed to house them, letting them languish in emergency departments for twenty-four hours while we attend to those we consider more important. Why is it so difficult to look at an 80-year-old and see an individual?
Grandad’s death was not, in one sense, out of the ordinary. An out of control condition led to the discovery of a myriad of other problems, intervention by a disparate group of specialists and a lack of coordination of care leading to a dismal quality of life. All this was complicated by the lack of paperwork. At the time, I thought it was ridiculous that he could not die a dignified death simply because he did not have the right paperwork. A year on I think his “complex medical history” allowed him to be handballed and his age meant he was not a priority.
The Australian Institute of Health and Welfare has done some work on end of life care. In their Australia’s Health 2016 report, they stated:
A wide-ranging, standardised experience of end-of-life care measure for patients and carers, applicable to all death trajectories would also provide insight into whether services are supporting an experience of ‘dying well’, and how Australians feel about their end-of-life care.
I imagine how this aspiration would play out for my Grandad. Instead of being asked about his bowels, a white coat approaches him and says, ‘are you satisfied with the quality of your dying experience?’
If he had been cognisant, my Grandad probably would have said, ‘Actually, I would prefer not to die.’
I can’t help feeling that standardised tests and surveys distract us from what is really at stake. My family desperately needed what Karen Hitchcock wrote about in her Quarterly Essay- understanding on a human level, rather than an approach that was purely medical and bureaucratic. Doctors should have looked at him and thought, if that was my father, would I want him to be treated like this? If it was me would I settle for this?
Because if we had a choice, none of us would.