Mum's story of getting no palliative care when she desperately needed it.

My Mum recently passed away in an aged care (in Qld). She entered aged care almost 3 years prior to her death from from complications of advanced dementia, most likely Lewy body Dementia. She was almost completely bed bound for this entire time, and had suffered from crippling, painful and deformative arthritis. She also suffered from frequent distressing visual hallucinations, and her lucidity fluctuated. Shortly after entry into care, a geriatrician visited and assessed her, and he recommended that a low dose infusion (of pain killer and mild sedative) be commenced to reduce her pain and decrease the anxiety surrounding her hallucinations. To enter care, she had to appoint an EPOA and do an advanced directive. A brother who lived locally, managed to convince Mum that he would be the best person for this job, due to his 'devout' religious faith. When the geriatrician recommended the above treatment, our brother, (her EPOA) refused to allow this eminently reasonable treatment on the basis that he 'didn't agree with euthanasia'. Despite assurances from the specialist that what he proposed was the opposite of euthanasia, my brother refused the treatment and Mum spent the next 2.5 years with a quality of life far inferior to what could have been achieved with early and effective palliative care. As a specialist anaesthetist, I found this particularly horrifying, knowing how different and better her final time could have been. He even subjected her to CPR despite the total futility of her outlook when she finally succumbed to aspiration. The RN who was forced to perform chest compressions as Mum lay dying, was subsequently sent for counselling since most people in aged care are not considered suitable for CPR. There needs to be much better systems in place, whereby a Public Guardian can step in and override a rogue EPOA if a specialist or perhaps a consensus of specialists agree that their proposed treatment is in the patients best interest. The system should also allow for family members who agree with the specialists proposed treatment, to have a say in their loved one's management without having to lodge an application in QCAT or SACAT to have an EPOA revoked due to abuse of power. We had such an application in place, but naturally the court system is so overwhelmed that Mum died before our case was heard. There needs to be a much more robust system of palliative care education, training and early implementation in aged care homes. If I am unlucky enough to have Mum's genetics and end up in aged care with dementia, then I need to know that SA has developed a much better system for ensuring that every resident gets the kind of end of life care that they deserve.