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An end free from pain

Urgent action is needed to ensure quality care at the end of life for all Australians, reports Annie May.

More than 50 per cent of Australians will die in hospitals, despite the vast majority wanting to die at home.

Currently advance care planning legislation varies state-to-state.

Many will not speak with their loved ones, doctors or nurses about how they won't to die.

What all this says to Dr Scott Blackwell, president of Palliative Care Australia (PCA), is that there is not enough focus in this country placed on the end of the life.

"We don't do enough for the beginning and end of life, instead concentrating on the between, the living," Blackwell told Nursing Review.

"Both ends of life need to be more considered, better resourced and better serviced."

Working to ensure the recognition of palliative care as a fundamental part of Australia's healthcare system, PCA last month released its National Palliative Care Consensus Statement.
Blackwell says it is a call to action.

The statement outlines eight key priorities based on four key themes: where people would prefer to die, the need for advance care planning, access and equity in provision of services and raising community awareness about palliative care.

"What we are calling for is not new, but what this statement does is strengthen our focus," says Blackwell.

"It sets out what we need to work towards to ensure a future where all Australians are well informed and able to make good end of life choices, and have access to quality palliative care wherever and whenever they need it."

On of the priorities is that a single common legislative requirement regarding advance care planning must be adopted throughout Australia. This should be in place by 2015.

Blackwell says the variation between state advance care planning laws is problematic, and has been for a long time.

"At the moment, if you do an advance care directive in WA and you end up sick while on holidays visiting the family in Sydney, your advance care directive will get ignored," Blackwell says.

"Their wishes on how to die get ignored.

"It will be difficult thing to do bring seven or eight different legislative frameworks to be unified, but this can't continue."

PCA also said appropriate education on quality end-of-life matters for health professionals was a must, and should be standard across the board.

(See page 30 to find out what Australian nurse educators are doing embed palliative care training firmly in undergraduate nurse programs.)

"The general public need to be educated about their options, but clinicians need it as well. And that doesn't just mean nurses who work in palliative care, it means all nurses. Death is something that everyone will have to deal with at some point," says Blackwell

"It can be hard for some workers, who usually work to keep people alive. But we need to address the fact that sometimes, the best option isn't for lengthening life but instead, to provide quality of life. That includes a good death."

Often hijacking discussions on palliative care is the euthanasia lobbyists.

"It is disappoints me when palliative care and the euthanasia debate get mixed in together. They are two very separate issues," said Blackwell.

"Euthanasia is a common preference but a rare choice.

"In the Netherlands, the rate of euthanasia deaths is less than 2 per cent. That leaves palliative care to look after the rest.

"When people say they want voluntary euthanasia, they mean they don't want to suffer. If there is proper palliative care, people shouldn't suffer. If they so, we need to do better."

"We need to maximise funding of palliative care services in this country, and euthanasia doesn't change that."

Blackwell believes that all of the priorities, goals and timelines identified in the consensus statement are attainable.

"We are calling on governments at all levels, health care providers, policy makers and researchers to commit to delivering on these priorities and to make palliative and end of life care a core component of the health system.

"It is vital that we assist people to not only live well, but to die well too - free from pain, in the place of their choice, with the people they wish to be present and above all, with dignity.

Key priorities

1. All Australians must have reasonable access to resources to support them to die in the location of their choice.
2. A single common legislative requirement regarding advance care planning must be adopted throughout Australia
3. All Australians have a right to equitable access to quality palliative care when and where needed.
4. All Australians must have access to education about dying and death
5. Adequate and appropriate education in quality end of life care must be a standard provision for all health professionals.
6. The Standards for Providing Quality Palliative Care for all Australians (the Standards) must be embedded in all appropriate care settings.
7. Appropriate funding must be made available by all levels of government to palliative care services on an equitable population needs basis.
8. Research in palliative care must be appropriately funded and targeted.

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