It’s just a piece of paper

Above: President of Palliative Care New South Wales, Peter Cleasby during the advance care panel discussion at the 11th Australian Palliative Care Conference.

By Yasmin Noone

Advance care directives are “helpful” but they do not guarantee that a person will die the way they want or in their location of choice, a palliation expert and advocate told the audience at Diversity 2011, the 11th Australian Palliative Care Conference last week.

President of Palliative Care New South Wales, Peter Cleasby, said although advance care documents are essential, they alone are just a piece of paper.

Directives, by themselves, do not ensure that a person’s end-of-life care wishes are carried out, nor do they prevent individuals from spending their last hours traumatised in the back of an ambulance or emergency department.

Advance care plans, Mr Cleasby said, “will not prevent all inappropriate hospital admissions. They will not guarantee the people that will die in their future place of care”.

To make an advance care directive effective, it must therefore go hand-in-hand with a series of family-wide conversations about of an individual’s palliative and end-of-life care wishes.

Yet, he warned, if a conversation has taken place but the family fails to accept a loved one’s wishes, the individual’s advance care directives could still be ignored.

To demonstrate his point, Mr Cleasby rhetorically asked the audience, “How many community palliative care workers have had the conversation with the family in the home setting and everyone agrees that [the husband will die at home]. But when the spouse walks you out to the car, she says to you, ‘I couldn’t bare it if he was to die at home’.”

“So who will get their preference carried out at the end of that person’s life?”

One option to ensure a person’s end-of-life wishes are carried out, he said, is to create a very complex advance care directive document.

“But, if you want to be specific about what you want in a range of scenarios, advance care planning will become a complete nightmare.”

And if you opt for minimalist approach to documentation, you create a “bullet ship with holes in it for people to exploit if they so wish”.

Either way a person turns – albeit with detailed or vague directives – documentation alone is not the answer.  

What is essential however, he said, is the family and medical team’s understanding and acceptance of a dying person’s advance care directives, palliative and end-of-life care wishes. 

“It is important that people have conversations with their family about what they want at the end of their life and that this comes with a sense of understanding [about] the directives.”

Above: Dr William (Bill) Silvester joins in on the panel discussion

Mr Cleasby’s views were supported by fellow panel member, Dr William Silvester who is the director of the Respecting Patient Choices program and an intensive care specialist at Austin Hospital (Melbourne).

“I agree with Peter furiously on everything,” Dr Silvester said.
 
“No one element of advance care planning is that important. All the elements need to work together.”

Dr Silvester called for community-wide education and cultural change to occur to encourage people to make advance care plans and develop a deeper understanding of what is involved and what could and should happen during the palliative/ end-of-life phase.  

“…Without substantial cultural change within both the broader community and the health care sector, the true potential of the advance care movement will not be realised.”