Why most of us won’t die a good death
As John plans his final journey, expert reveals in-home palliative care needs more funding
AT 35 years old, the last thing John Grayson should be thinking about is death, yet it is rarely far from his thoughts.
“I want to go when living becomes more painful than dying,” said the former physics student who was diagnosed with a rare brain tumour in November, 2014.
“I’d like the choice to have euthanasia, for my doctor to give me the medicine and for my family to be with me when I go.”
Surgeons cannot remove all of the cancer from Mr Grayson’s head and chemotherapy is out of the question because of medical allergies.
With almost half of the five years he was given to live already gone, it’s only natural that Mr Grayson often considers the “end game”.
“I know what the likely end game is for me – it’s paralysis, cognitive impairment, severe pain and loss of mental capacity where I’ll be in a dementia-like state,” he said.
“When I get to the state where living becomes worse than dying and there’s no medical option to improve my life, then that’s when I will choose to die.
“I plan on having a wake but I don’t want it to be jovial.
“I want it to be a remembrance of me with lots of the things I enjoy.
“Death doesn’t scare me at all – my non-existence post-death scares me no more than my pre-existence before birth.”
While Mr Grayson is certain he will die a “good death”, most of us will miss out on the opportunity to die on our own terms.
The Grattan Institute’s Dying Well report shows 70% of Australians want to die at home but only a small number will actually get the chance.
In Toowoomba for example, there were 6989 deaths from 2010–2015, but the Dying Well report shows only 14% – or 978 – of those people would have died surrounded by their own four walls.
According to the Grattan research, 54% – or 3774 – of our region’s residents probably died in hospitals and 32% – or 2236 – most likely died in the region’s nursing and aged care facilities.
Deaths in Toowoomba are expected to double in the next 25 years as our population ages.
Professor Hal Swerissen, who co-authored the Dying
Well report, said the cost of care for the last year of life spent in nursing homes was $45,000; the average cost of dying in hospital was $19,000; and three months of
community-based palliative care was about $6000.
The Queensland Government in 2015-16 gave $87 million to the state’s 16 hospital and health services for palliative care, $1.88 million over three years to helpline Palassist; and $5.5 million – over seven years – to pediatric hospice, Hummingbird House.
The Health Department also contributes to the state’s eight hospices.
Prof Swerissen said the formula for a good death was “dignity, choice, privacy and support”.
“Good deaths are where people can have control over where they die, the care that they get and who they are supported by and that they get their symptoms well managed,” he said.
“People also say that they would like to have the opportunity to say goodbye
to people and to settle their relationships as well as put their affairs in order.
“People often will talk about having a friendly environment where they’re comfortable and which is familiar to them.”
Health Minister Cameron Dick said each hospital and health service was best placed to determine how their share of the palliative care funding was spent.
“It is important that decisions regarding models of care and distribution of funding are made by local clinicians – and administrators ensure services best address the needs of their community,” Mr Dick said.
“Non-government organisations are also funded by either the Department of Communities, Child Safety and Disability Services or the Commonwealth Department of Health to deliver community-based services.”