End of Life Survey 2018

Australians are being urged to discuss their end-of-life wishes as most people fail to prepare for it.

A national survey commissioned for National Palliative Care Week (20-26 May) showed three out of four Australians had not talked to their loved ones about what would matter most to them if they were to become seriously unwell.

Liz Callaghan, of Palliative Care Australia, said the survey of 2,100 Australians found that eight in 10  believed it was important to talk to their family about their care wishes if they were to become seriously ill.

But only one in four respondents had the conversation.

“There’s a disconnect between what people think they should do to prepare for the end of life and what actions they take,” Ms Callaghan said.

Three out of four adults (74 per cent) agreed people should plan for their end-of-life care, with key benefits being control over their care (76 per cent) and where they spent their final days (76 per cent), as well as reducing the stress and burden on loved ones (76 per cent).

“But when you look at the figures for what actions people have taken, only two thirds of Australians have some type of documentation in place, most commonly a will (48 per cent), power of attorney (POA) and/or life insurance (24 per cent each),” Ms Callaghan said.

Only one in 10 adults (12 per cent) had a nominated person to make healthcare decisions for them, and only one in 20 (five per cent) had an advance care plan or advance care directive (six per cent).

One in four adults had no end-of-life documentation (28 per cent).

Ms Callaghan said the survey indicated many Australians were still not comfortable talking to their loved ones and health professionals about their wishes if they were to become seriously unwell, or that the topic was not being raised with them by health professionals.

“When people do have the conversation with their loved ones, it makes it easier on them when they need to make decisions about their care. So, don’t put the conversation off, because talking about dying won’t kill you,” Ms Callaghan said.

For further information, go to the website.

Know your wishes

Non-medical personal care service Home Instead Senior Care said that while 70 per cent of Australians would prefer to die at home, surrounded by their friends and family, only 10 per cent did.

Home Instead Senior Care has launched a free Dying at Home guide to help people with their end-of-life-plans.

“We know that dying is not an easy subject for many people to discuss with their loved ones,” said Home Instead Senior Care Australia’s Martin Warner.

“Our aim is to help families start having the tough conversations about what matters most. Planning ahead and knowing your wishes ahead of time can alleviate an incredible burden from family and friends and ensure your final days are as meaningful, comfortable and life-affirming as possible.”

The guide examines what palliative care at home entails, how to manage pain, access to care management, coordinating your palliative care team, funeral planning, and options for loss, grief and bereavement care.

For more information and to access a free copy of the Dying at Home guide, visit the website.

More medical staff needed

National statistics released this week by the Australian Institute of Health and Welfare (AIHW) showed there were only 226 specialist palliative care doctors and 3,457 palliative care nurses in 2016.

While four out of five deaths were expected due to chronic illness, only one in two patients who died in hospital received palliative care.

Ms Callaghan said the statistics showed more investment was needed to train and recruit palliative care health professionals, especially in regional and remote areas, to reduce inequitable access.

“Of the 226 specialist palliative care doctors, 190 work in major cities, 20 work in inner regional centres, 14 work in outer regional places and only three work in remote locations,” she said.

“The situation is similar with palliative care nurses, with 2,482 nurses employed in major cities, 711 in inner regional centres, 247 in outer regional locations and only 18 in remote or very remote locations.

“Particularly concerning also is that only 101 palliative care nurses are employed in residential aged care facilities. This is not nearly enough to serve the population of over 200,000 residents, many living with complex needs that could benefit from palliative care support.”

Ms Callaghan said palliative care should be core business in aged care, contingent on matched funding from the states and territories.

What matters most?  video released

Aged Care Minister Ken Wyatt this week released a video featuring prominent Australians promoting palliative care and the What matters most? theme of Palliative Care Week 2018.

“It leads all of us to reflect on what would be most important to us if we became seriously unwell,” Mr Wyatt said.

The video includes messages from former Wallabies’ captain Mark Ella, comedian Jean Kitson, chef Kylie Kwong, Commonwealth Games champion and palliative care nurse Carla Krizani, and intensive care specialist Ken Hilman.

Watch the palliative care video here.  

Pain management

Painaustralia’s Carol Bennett said it was critical palliative care strategies included a focus on pain management and person-centred care.

“Early intervention to prevent or relieve pain should be a fundamental principal of palliative care, to allow people to die with dignity and free of pain,” Ms Bennett said.

“Dying pain-free is a human right, and our policies should ensure people have the ability to choose to die with adequate pain relief. This would allow them to remain focused on the good things in life and the people they love, not the pain.”

One in five Australians lives with chronic pain (including adolescents and children) and one in three over the age of 65, Painaustralia said.

Painaustralia is calling for a national pain plan to ensure quality pain management for people as part of end-of-life care.