A palliative care doctor shares her candid and confronting experiences from the front line of end-of-life care.
I don’t think any little girl starts out with dreams of becoming a palliative care physician, but it’s a career that somehow found me.
Palliative care appealed to me because it puts the person before the treatment and is a unique mix of art and science.
And despite the myths, the more I learned about palliative care, I discovered that it was more about living than it was about dying.
For the most part it has been an incredibly rewarding career choice, helping families to look after their loved ones in their final days. I feel like I can help bring a sense of peace, calm and comfort during turbulent and emotional times.
Of course there are always the hard cases that stick with you – the children, the young adults. It’s part of the territory. And while it never gets easier, you become better at dealing with it.
What I’ve learned about death and dying as a palliative care physician is that one of the greatest gifts you can give your loved ones is an advance care plan.
I would like to share two stories that have stayed with me through the years.
The stories involve two elderly men facing their end-of-life after a sustained period of illness. In other words, their deaths were not unexpected. One man was supported to have a peaceful death guided by his Advance Care Directive (ACD). The other man had not documented his wishes and experienced a death that was painful to watch and must have been unbearable to endure. I was his palliative care physician but felt powerless to help him.
These are their stories…
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.
National Advance Care Planning Week will be held on 23-27 March, and is a good time to initiate advance care planning conversations with your loved ones. Please visit the ACP Week website to find an event near you or register for a free email pack to get you started with advance care planning.
* Names and personal details have been changed for privacy reasons.
Image: LPETTET, iStock. Model is posed.
And now, an Advanced Care Directive remains in place when a person has dementia. In Victoria an ACD became invalid as the premise was that the person may change their mind but be unable to voice their wishes. My mother did not make an ACD, but somehow there was one in place. Mum had dementia but was mobile and could follow instructions, follow a conversation and reply appropriately and yet when she developed cellulitis her Medical Treatment Decision Maker refused to allow antibiotics be given to her. Instead Mum was given Seroquel, Tramadol and Panadol and the medical staff let the cellulitis kill her. ACD ‘s can be very dangerous if the MTDMs are in a hurry for an inheritance or just fed up with caring for an elderly relative.