Allowing more Australians to be treated in the comfort of their own home would transform palliative care and is wanted by both patients and their families.
Palliative care nurse Caroline Belfanti, of Calvary Kogarah in Sydney’s South, says there are too many barriers and challenges in the current system and that many people often feel like they are a burden.
Caroline, who has been in palliative care for almost three decades, spoke at the Canberra launch of CHA’s new report Out of Hospital Care in Australia – Advancing Health’s Missing Sector and said we must fix the gap in service provision and allow people to be treated within their homes.
“We have all heard the statistic - 70% of people in Australia would prefer to die at home. I would argue that this question was put to a population that is in good health.
“If the same question was put to a population living with a life limiting disease, I think the answer would go something like this; ‘I want to remain at home for as long as possible, for as long as practical and for as long as I am not a burden to my family.’
“We hear this all the time, being a burden to the family is a recurring theme for people dying in the community with increasing palliative needs.”
Caroline pointed out that the current Palliative Home Support Program provides just 48 hours of specialised supportive palliative home-based care by specially trained workers who work as part of Calvary’s Community Palliative Care Team.
She also said there is a real gap in care when a patient first experiences a deterioration in their health and their ability to care for themselves; this often means people end up in hospital when they could be cared for at home.
“You could easily argue, and the evidence supports this assertion, that with appropriate services people can remain at home longer and avoid admission altogether.”
Caroline says many families are currently meeting the gap in service provision themselves but that this can be challenging.
“It’s important to consider that sometimes the patient does not want family members to attend to personal care and toileting – it is a loss of dignity for the patient and often too much for carers to manage….quite often this precipitates an admission to hospital.”
She adds that it’s surprising how little care is needed, especially for those who are still mobile. But, even an hour or two a day can be out of reach for many patients.
There is also a lack of suitably trained palliative care workers. “We have had situations where a care worker has entered the home and the family has educated the care worker on how to do a bed wash…. Palliative care should be a priority and not the poor second cousin of both private and public systems.