Dignity in dying days depends on your postcode due to underfunded palliative care services

A detail as arbitrary as which side of the Brisbane River you live on can mean the difference between palliative care in a hospice or facing a bleak and impersonal end, writes Jessica Marszalek.

Desperate Queenslanders are dying in emergency rooms and away from loved ones as a patchwork of underfunded palliative care services deny people dignity in death.

A special investigation has plotted the pitfalls of a system so fractured that patients are left to try their luck at a “postcode lottery” that determines whether they’ll live out their last days at home or a hospice surrounded by love, or alone in a crowded hospital room.

Massive funding shortfalls, a severe lack of expert palliative care staff across the state and an unwillingness to talk about dying mean some don’t get help until hours before their death.

But escalating demand driven by a growing and ageing population mean it’s standard practice not to refer a personal for specialist care until they have just three months to live.

The spotlight comes as parliament considers Voluntary Assisted Dying legislation that would enable a person to access life-ending drugs once they have less than 12 months to live.

The legislation is based on several core principles, including that: “Every person approaching the end of life should be provided with high quality care and treatment, including palliative care, to minimise the person’s suffering and maximise the person’s quality of life.”

Palliative Care Queensland Chief Executive Shyla Mills. Picture: David Clark

But experts, including Palliative Care Queensland chief executive Shyla Mills, said the system is not providing that now and some people aren’t referred to specialist palliative care until mere hours before death.

A survey of palliative specialists this year found staffing shortfalls in every region, from the Torres Strait to the Gold Coast, with a coalition of palliative care directors from across the private and public systems finding Queensland has less than half the staff it should have.

The survey of experts on the ground counted just 43 full-time-equivalent staff specialists across the state’s 16 Hospital and Health Services, when industry benchmarks of two full-time staff per 100,000 mean there should be 100.

It means regional Queenslanders have to travel vast distances to the major cities and away from their families for care, or rely on GPs and local nurses who do their best with telehealth support from city-based experts but don’t always have access to the right equipment or medicine to make them comfortable.

Some regional Queenslanders can’t even access services as basic and fitting a house with handrails and ramps so they won’t fall as they live out their last months due to a lack of occupational therapists and because telehealth only goes so far.

Brisbane patients face nightmare bureaucratic hurdles that stipulate where they can and can’t go for care based on which side of the river they live.

But even Brisbane patients face nightmare bureaucratic hurdles that stipulate where they can and can’t go for care based on which side of the river they live.

The inequality even extends to a person’s age, with young people charged $1000-a-day for an at-home nurse because there is no subsidised care on offer – a price few can afford.

It means overburdened families have no choice but to call an ambulance once their loved one’s health deteriorates if they can’t get a precious hospice bed.

But even older people are being forced to wait a year for Commonwealth Aged Care packages, and some are dead by the time they’re approved.

Ms Mills said “exhausted” workers felt the sector was already “in crisis” and are frustrated the Palaszczuk Government’s $171m investment over six years won’t see significant workforce shortages addressed until 2023.

Specialist Palliative Care Services Directors’ Group spokesman Dr Phillip Good said a lack of specialists all across the state was a big issue.

There were “huge” gaps in rural and remote areas and for the under 65s, “but the gaps are even in the metropolitan areas as well”.

He said people were denied choices because public patients had to access care in their Hospital and Health Service area, meaning the Brisbane River was acting as an “artificial barrier”.

“I can tell you, for example, that I’ve had a patient who was in the community on the northside of the river, quite close to St Vincent’s (hospice) but because they were a public patient on the northside of the river and we were supporting him in the community,” Dr Good said.

“They got sick but they couldn’t be directly admitted to St Vincent’s because they live on the northside of the river so they ended up going to a hospital to the emergency department and they ended up dying in the emergency department.

“So it’s an artificial divide set up by a HHS and funding mechanisms that occur.”

Professor Janet Hardy.

Mater Group palliative and supportive care director Professor Janet Hardy said society needed to talk about death more, and doctors needed to refer cases earlier.

“Some people don’t get referred because they just fall through the cracks,” she said.

Others weren’t referred because GPs or specialists “don’t want to upset the patient and take away hope”.

“For a lot of people, a referral to palliative care is a realisation that they’re not doing well,” Prof Hardy said.

“And most people think referral to palliative care means they’re going to be dead in a couple of weeks so that’s another reason why I think it’s so important to get in early.”

She said a patient had recently turned up at Mater emergency in the middle of the night without an advanced care plan and no way to contact relatives.

“So the person ended up going to theatre for a hopeless condition, because that’s the default, and dying six days later,” she said.

“Whereas if we’d known that patient three months ago we could have ensured there was an advanced care plan … so that when that patient arrived in emergency they came down our track and we could have ensured they had a comfortable death.”