Palliative care patients in many regional and remote areas have no direct access to specialist palliative care and face “unacceptable delays in provision of care or in some instances no care at all,” according to specialists.

Painting a grim picture of the reality of end-of life care for many patients, the Queensland Specialist Palliative Care Services Medical Directors’ Group has submitted a list of shortcomings and sub-optimal care to the Queensland Parliamentary inquiry into aged care, end-of-life care, palliative care and voluntary assisted dying.

Patients faced “a postcode lottery” when it came to palliative care access, compounded by the red tape and complexities of the Federal/state systems and funding bodies such as the National Disability Insurance Scheme (NDIS), the specialists said. This meant that getting a palliative care package was often a confusing and difficult process for patients and their carers, and many patients died before their palliative care package was approved.

A general lack of access to essential home equipment had been created by subsidy guidelines that exclude palliative care patients from getting equipment access, they noted.

Inequities in palliative care were particularly bad for patients in regional and rural communities, the specialists said.

“Clinicians in these places and their surrounds spend time ringing around the state to ask for specialist palliative care advice. Clearly, this make-do model is not sustainable and unfortunately adds further burden to already stretched palliative care services and leads to less than optimal patient outcomes and service delivery.”

And palliative care has not been given the recognition as an area of service in which it is essential to provide 24/7 care, the specialists said.

“If a patient requires an urgent palliative care home visit outside of business hours or on a weekend, their needs will often not be met. Unfortunately, out of hours home based care is not universally available, as services are not routinely funded to provide it. Emergencies don’t always conveniently occur during “normal working hours”. Patients in most instances in this situation must present to an emergency department.

Continued underinvestment meant that the workforce was well below the minimum requirements set out in Palliative Care Australia guidelines, resulting in a “clear capacity-demand gap that can no longer be ignored”.

There were currently the funded equivalent of 38 full time equivalent (FTE) palliative medicine specialist positions in the state, less than half of  the recommended number of positions (93).

“This underinvestment needs to be urgently addressed,” they recommended.