Living until the end

Above: Palliative care specialist and the current Senior Australian of the Year Emeritus Professor Ian Maddox with Minister for Ageing Mark Butler at today’s launch of National Palliative Care Week

By Natasha Egan

End-of-life care is about living, not dying, says a palliative care specialist in the lead up to National Palliative Care Week, which was launched in Canberra today.

The week long event to raise awareness about palliative care and end-of life issues, which was launched by Minister for Ageing Mark Butler and Palliatve Care Australia CEO Dr Yvonne Luxford, runs from May 19 – 25 and has the theme ‘Palliative Care… everyone’s business’.

Greenwich Hospital Senior Staff Specialist in Palliative Care Professor Rod MacLeod said the public, and even medical professionals, too often believed palliative care was only for people in the last days or hours of life.

“We must get the message out that palliative care is about living, not dying. Because if you are dying, you must be alive,” said Prof MacLeod, who heads HammondCare’s Palliative Care Education and Research Centre.

Australians’ anxiety about discussing death and dying often led to confusion about the role palliative care could have in their care, he said.

“But our care aims to enhance quality of life and not just the last bit at the end. We are not just dealing with people within an ace of the end of their lives. We yearn to provide this support all the way through – but this is a hard message to get across,” he said.

Rather than hasten or postpone death, palliative care intends to ensure the time a patient has is lived to the full and of the highest quality which is done by thinking through treatment decisions, Prof MacLeod said.

Throughout his career, Prof MacLeod has delivered about 200 babies and sat at the bedside of many people as they died and said he has found great similarities in the two situations.

“When a baby arrives, there’s that moment of astonishment that a new life is suddenly before you. And when someone dies a gentle death, as many people do, there is also that profound moment when you realise, they’re gone. Both are very powerful human experiences,” Prof MacLeod said.

Above: Greenwich Hospital Senior Staff Specialist in Palliative Care Professor Rod MacLeod who says there are great similarities between dying and the birth of a child

Spreading the word

New South Wales aged services provider Warrigal Care is getting involved in National Palliative Care Week by holding a workshop at its Warilla facility for representatives of residents living with palliative illness featuring presentations by palliative care specialists.

CEO Mark Sewell said National Palliative Care Week was a great opportunity to remind people in the community about the importance of palliative care.

It’s important to make palliative care the business of everyone in the community and one way to achieve that is for everyone to have a conversation with family and loved ones, Mr Sewell said.

“We know that most people do have preferences about how they would like to be cared for at the end of life, however, they are not sharing these ideas with the people closest to them.

“It’s important to let them know what’s important to you and how you would like to be cared for,” Mr Sewell said.

More services

Minister Butler said demand was building in our ageing population to extend the reach and effectiveness of palliative care services.

He pointed to the $10 million investment to enable Advance Care Directives to be included on the Personally Controlled Electronic Health Record as a recent government initiative to address this demand.

This inclusion will allow families to be true to the wishes of their loved ones as they approach end of life care, Mr Butler said.

“It is vitally important that one’s wishes and the circumstances surrounding end of life care are recorded so that everyone – health professional and family members – are clear about personal preferences,” he said.

The $19.8 million Living Longer Living Better aged care reforms to establish specialist advisory services on palliative care is another initiative which will support aged care providers and general practitioners to deliver better quality palliative care for clients of aged care services, Mr Butler said.

National Palliative Care Week