Some months ago, 89 year old Susan died alone in her Sydney nursing home at 1.30am. Susan had been living there for 13 years and had moved into the room next to my wife Trish’s mother Mollie a few days after Mollie’s husband Alf had died.
In nursing homes, couples are often housed in separate rooms as most rooms are big enough for only one person. So Alf slept in the room next to Mollie, and during the day they watched television together, sat in the garden on warm days and visited their children’s houses on weekends. They both loved the Balmain Tigers. They were inseparable and Mollie was bereft when her husband of over 50 years died.
Susan and Mollie rapidly soon became best friends, with Mollie telling her three daughters that Alf had sent an angel in Susan to take his place.
When Mollie died in 2014, Trish and her sisters regularly visited Susan. When she was still mobile, they’d go to a local café for lunch. They bought her an iPad and taught her to use it. Across the last six years, they were like the daughters she’d never had. I made her compilation music CDs from musicals and the 50s, which she played constantly.
Susan had only one other visitor, Enid, a woman of her age with whose family she had been unofficially fostered as a child. She was her next-of-kin. As she became more fragile with age, Susan became unable to leave the nursing home because of her greatly impaired mobility. She effectively was alone except for the weekly visits from Mollie’s daughters and less often, from Enid. Then COVID put an end to that for nearly two years.
As COVID restrictions relaxed, permission to visit again was given. Susan had aged a lot, her breathing was laboured and she was unable to move much at all without a frame. She ate like a sparrow and often talked about how there was nothing left for her to look forward to in life. More than once, she spoke about being “ready to go over the cliff”. Trish made her comfortable, held her hand and showed her photographs of our kids and grandkids.
About four weeks before she died, she was taken to a large Sydney hospital after frequent seizures. Oh mercy, this looks like it, Trish said, going in seven times before Susan finally died. Trish and Enid had daily calls and visited Susan twice together. Enid would interpret the slightest movement or sound as a good sign that Susan was perhaps recovering.
Susan soon became semi-conscious for days, fitting frequently as she sank neurologically, and being fed through a tube. Trish told Enid that Susan had often spoken of wanting to die. “I’m sure she would not have wanted to be artificially kept going, unconscious like this” she ventured a few times.
One day about two weeks in, Trish went to the hospital and the unconscious Susan was being was being washed by nurses. “She was like a skeleton. Murmuring incoherently, unable to speak. She’s like the living dead, and she’s still being fed. Why can’t they do something? She’s dying. The doctors and nurses have said this repeatedly!”
One day, a doctor visited while Enid was with Trish. Trish seized the moment and asked the doctor questions in front of Enid, knowing what they answers would be. “If Susan gets through this, is it likely she will be able to feed and dress herself? Will she be able to speak? Will she be able to get herself out of bed to the toilet? Will she be able to turn over easily in bed by herself?” The doctor said no to all of these.
Enid told Trish after the conversation “Susan will go when Susan chooses to go”.
A week before she died, Susan briefly regained consciousness. Trish went in to say goodbye. She could recognise her and tried to say “how are you”. With barely any energy left, she tried through tears to pull the tubes from her arms and the oxygen tube from her nose. She managed to say “get me out of here … home”.
She went back to the nursing home. Trish went to see her again. Susan again removed her oxygen line, and said “Am I dead?”
We talked every night about what to do. Not having next-of-kin status, despite being a frequent visitor and comforter, Trish had no legal standing in how she should be looked after in hospital. Susan couldn’t speak for herself, and Trish sensed very strongly that Enid, a Roman Catholic like Susan, was avoiding any talk about end of life.
Preparing an advanced directive was not something that Susan would probably been ever aware of. Trish sensed strongly that Enid was entirely uncomfortable about any discussion of what directions she might give the hospital and nursing home staff about end-of-life matters like sedation or withdrawing feeding. She may have felt this would have been profane and against her church’s doctrine.
Trish, with no legal status, was powerless to be an advocate for her interests. So Susan lived on for weeks when she expressed that she desperately to die.
I’ve no doubt that tonight, and every night across Australia there are dozens of elderly and dying people like Susan who have not lived in company with friends and relatives who actively encourage discussion about advance directives, let alone voluntary assisted dying. Many have few if any visitors. They are alone with no one speaking up for them. Only 14% of Australians have prepared advanced directives.
As the population ages, it is terribly important that a major awareness campaign be launched designed to inform people in their sentient final years about what their end-of-life options are. Any humane and compassionate society owes this to those who are alone and unsupported or who are under the legal governance of people who would just rather not talk about any of this.
You can read about and download advanced care directives here.
- Susan and Enid are pseudonyms