I remember the time I was called to a case in the hospital I worked at. I was confronted with a sight of a man, mid-70s with advanced dementia. He was living in an aged care facility and they arranged a hospital transfer when he developed pneumonia and a high temperature. By the time he arrived at the hospital, a fever-induced delirium had set in. This resulted in him being shackled to the bed so that they could administer IV antibiotics. His daughter was at the bedside bereft and trying to comfort her agitated and sick father. I approached the daughter and told her we didn’t have to do this.
She smiled through her tears with relief and informed me that he had written an Advance Care Directive years before with his GP. He had been clear that he would not have wanted this kind of medical treatment. In the heat of the moment, both the aged care facility and hospital overlooked his ACD which is how he ended up in this unfortunate situation.
Armed with this new information, I was able to cease IV antibiotics and administered medications to stop the delirium so that he could be unshackled. The man died a few days later in hospital, with his daughter by his side, and supported by hospital staff who made sure Raymond was comfortable and pain-free. Raymond received the peaceful, dignified death that he had asked for and deserved.
What I learned from this experience is you can’t leave it to chance. You need to make a plan and ideally appoint a substitute decision-maker who understands your wishes and will advocate for you if required. Make sure the plan is easily accessible and ideally uploaded to MyHealth Record.
An elderly man with a Greek background, in his late nineties was brought in to hospital from his aged care home. George had not written an Advance Care Directive, and he had never broached the subject of end-of-life care with his family. He was no longer able to talk, let alone make his own treatment decisions, placing him in a vulnerable situation.
George was admitted to hospital with pneumonia. His daughters insisted on feeding him despite the fact that he had lost the ability to swallow, which is not uncommon with advanced dementia. I watched aghast as they continued to feed him against our advice. The food was being inhaled directly to his lungs, causing him to choke. It was hard for us to watch.
Despite our best advice and efforts the sisters continued to feed their father. “He never told us what he wanted so we have to keep doing our best to save him,” they explained.
Because their father had not made decisions about his future health care when he was of sound mind, it was left to his daughters and the hospital to decide the best way forward, in the grimmest and direst of circumstances. To be fair, I did not know this man in his better days, but I can be pretty sure he would not want to spend his final days like this. He died a few days later in what can only be described as an awful death. I can’t imagine what his daughters felt watching their father and trying to do what they thought best for him. But how could they know? He had never discussed it with them.
Following George’s experience I went home to my husband. I opened a bottle of wine and started a frank conversation about the kind of care I would want if I couldn’t speak for myself. I urged my parents to take action and not leave me and my brother left guessing about their wishes in the back of an ambulance.
Written by Alex, an Australian palliative care physician.