By Keryn Curtis

Real respect for individual choices and personal control around end of life care just got a whole lot closer with the announcement yesterday that the Gillard Government will support the incorporation of ‘advance care directives’ (ACDs) into the Personally Controlled Electronic Health Record.

Speaking at the 4th International Society of Advance Care Planning and End of Life Care Conference in Melbourne, Federal Minister for Health, Tanya Plibersek announced that the Gillard Government would invest $10 million to enable advance care directives – a written document setting out a person’s wishes for their future health care – to be stored on the Personally Controlled Electronic Health Record (PCEHR).

Ms Plibersek said advance care directives enabled individuals to communicate to loved ones how they wish to be cared for as they get close to the end of life.  Having the advance care directive as part of the PCEHR, she said, would ensure all Australians could have control over their end-of-life care.

“Because it’s online, the advance care plan will be easily available,” Ms Plibersek said.

“For example, if an elderly man from the Gold Coast is admitted to a hospital while visiting his family in Melbourne, his treating doctors and nurses would have access to information about his end of life care wishes.

“That could include information about any treatments he does or does not want under particular circumstances,” she said.

Ms Plibersek said that while most families want to be true to the wishes of their loved ones as they approach the end of their lives, evidence suggests that many people do not get their wish in terms of where they would like to die.

“Around 110,000 people each year need some form of end-of-life care. More than half of all deaths occurred in hospitals, yet most Australians would prefer to die in their own homes.

“This suggests that many people do not get their wish in terms of where they spend their final days. It can be a difficult conversation for patients, families and health professionals alike, but having patient intentions clearly expressed in an advanced care plan will make it easier for their wishes to be met,” Ms Plibersek said.

Respecting Patient Choices

The Minister said the government was also providing an additional $800,000 over two years for the evidence-based Respecting Patient Choices advance care planning project led by Melbourne-based expert Associate Professor Bill Silvester, President of the International Society of Advance Care Planning and End of Life Care.  

Professor Silvester has worked with many patients on end-of-life care planning and said he welcomes the addition of advance care directives to Australia’s eHealth record system.

“By putting advance care directives online, it guarantees the patient is at the centre of their health care. For example, if a patient is admitted to hospital, doctors will be able to quickly see exact details of their wishes for end-of-life care. It ensures that the patient stays front and centre and maintains control of what will be happening to them when they can no longer speak for themselves,” said Associate Professor Silvester. 

The chief executive officer of Palliative Care Australia, Dr Yvonne Luxford, said the inclusion of advance care directives on the PCEHR was a priority that her organisation had been lobbying for, for a very long time. She said Palliative Care Australia had hoped there would be a mechanism to include advance care directives on the PCEHR from the time it first went live in July 2012.

“We were disappointed then but we understand and it’s absolutely fantastic that the government has agreed to this now.  And they have committed the money so it will actually happen; that’s very exciting,” Dr Luxford said.

“The default position when someone enters hospital is to treat them quite aggressively.  However, if the advanced care plan is attached to the person’s e-health record, the health professionals can see can see it and can do what the patient wants.

“It will be incredibly valuable in aged care as well.  It will enable healthcare professionals to really practice person centred patient care,” she said.

Consistent laws

Dr Luxford said the next important step would be to harmonise the different laws in relations to advance care directives which currently vary among the different states and territories.

“There will be a problem for people travelling, with different legislation operating in different states and territories.  If we had consistent national legislation plus the ACD attached to the PCEHR, that would be the perfect complement.

Aged care lawyer, Victor Harcourt, who presented on the subject at the Aged and Community Services NSW & ACT state conference earlier this week agreed that the decision would help provide the impetus for a consistent national legislation around advance care directives.

“We can only hope that with the contribution of the Commonwealth funds – it will clearly signal the intent for there to be uniform laws across Australia. States should make the most of this opportunity and work to get some laws in place that don’t miss the incentive to really maximise the value of the records,” Mr Harcourt said.

Ms Plibersek said there will be consultation with consumers and healthcare providers on the design of the proposed system to ensure it is fit for use nationally and fit for purpose for consumers and clinicians.

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  1. Tania Plibersek says, rightly, that many people do not get their wish in terms of where they would like to die. She should have added that many do not get their wish in terms of when they would like to die.
    Politicians should act to give people suffering incurably at the end of thier lives the choice of medically-assisted dying.

  2. At last there is a government which is listening to the voices of the people. If the ALP can pass laws so that people can end their lives without breaking any laws and with their loved ones around them, I promise to vote for them forever.

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