‘Not the way they wanted to die’: Final wishes of thousands of Chinans going unmet

Palliative care worker, Justine Betteridge, helps her client, Margaret Cox, get dressed after her shower, in Sydney. 30th March 2017 Photo: Janie Barrett Susana Levaci, 42, who has untreatable cervical cancer, with her two daughters, Talei, 8, and Rosie, 10, finds the visits at home by palliative care worker, Justine Betteridge, help her cope mentally with the burden of not being able to do everything she wants for her children, in Sydney. 24th April 2017 Photo: Janie Barrett

The desire of thousands of gravely ill ns to die without pain and surrounded by family is going unmet because palliative care services fall badly short, the national peak body has warned.

Just one palliative medicine specialist is available for every 704 deaths each year, according to Palliative Care . It has called on the Turnbull government to make palliative care a national health priority, appoint a ‘national palliative care commissioner’ and ensure health workers can better help grief-stricken families.

The pleas come six months after a draft Productivity Commission report predicted that without a significant policy overhaul, “tens of thousands of ns will die in a way and in a place that does not reflect their values or their choices”.

“Their end-of-life journey will likely be punctuated with avoidable, or unwanted, admissions to hospital with the confusion, loss of dignity and loss of control that comes with it. This is not acceptable,” it said, adding that reforms in this area “should be a high priority for governments”.

Palliative care helps terminally ill people live the end of their lives as fully and comfortably as possible. It can be provided at home, in hospitals or at aged care facilities.

The care includes pain and symptom management, help for families to talk about sensitive issues and psychological and spiritual support for the patient and their loved ones.

Palliative Care estimates that while 70 per cent of ns wish to die at home, only around 14 per cent do so.

Its pre-budget submission said there were just 213 palliative medicine specialists across , equating to one for every 704 deaths each year.

The organisation’s Liz Callaghan told Fairfax Media that four of every five dying people could benefit from palliative care.

“We often hear stories of … people who have died in a way that, really, you would not call a quality death. And that’s not the way they wanted to die,” she said.

“[Relatives] might say their loved one died in pain or they were really struggling, they were really uncomfortable, they were scared – that really is a sign that their symptoms were not being managed appropriately.”

Ms Callaghan said pain management and being surrounded by family were often most important to people who were dying.

“Surprisingly … they also want to make sure their finances are all in line – that causes people a lot of anxiety at end of life. But really, they just want to enjoy their last days.”

People with illnesses other than cancer, as well as the young and those in rural areas, often had the worst access to palliative care, she said.

The organisation wants the Council of n Governments to recognise palliative care as a national health priority and for the federal government to appoint a national commissioner, who would address the fragmentation of services and funding.

It also called for investment in palliative care medicine specialists and nurses, and grief and bereavement training for aged care and primary health care staff to assist surviving family members.

Aged Care Minister Ken Wyatt said the government recognised the importance of palliative care. It funded state and territory governments to provide palliative care services and provided subsidies for palliative care medicines and consultations.

The Commonwealth, states and territories were developing a national palliative care strategy to be considered by COAG this year, he said.

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