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A survey has found that most Australians are not sharing their end of life care wishes with their loved ones, which is adding to the stress and anxiety people may feel in their loved one’s final weeks.
Just over half of Australians are skipping a conversation with their loved one about how they want to be cared for in their final weeks and only half of those who do are getting their wish, according to an online survey commissioned by Palliative Care Australia.
The survey of 1000 Australians who had lost a loved one in the last five years was conducted by Pure Profile and released yesterday to mark National Palliative Care Week, which runs from May 19 to 25 with a theme of ‘Palliative Care… everyone’s business’.
Of the people surveyed, three in twenty (15 per cent) had an advance care plan in place detailing their wishes about how they wanted to be cared for at the end, a third (34 per cent) said their loved had discussed how they wanted to be cared for while 51 per cent said the issue was not talked about.
Overall, 56 per cent of respondents said their loved one’s wishes were carried out as expected.
Palliative Care Australia CEO Dr Yvonne Luxford said: “Unfortunately the survey reveals Australians simply aren’t having conversations about death and dying and are therefore flying blind when it comes to understanding the end of life wishes of their loved ones.”
Tying in with this year’s theme, Dr Luxford said palliative care was everyone’s business.
“While there is nothing tougher than losing a loved one, talking about and planning for a loved one’s final weeks is a simple act of love everyone can do to reduce the burden on those left behind and help make decision making simpler at a difficult time.”
Elsewhere in the survey, 59 per cent said their loved one was cared for in the place of their choice until the end of their life, 53 per cent felt unprepared for their loved one’s death, 13 per cent didn’t know where their loved one wanted to be cared for while 48 per cent said dealing with their own feelings was one of the most challenging aspects of the experience.
PCA president Professor Patsy Yates said talking about death and dying can alleviate the stress felt by people faced with making decisions about their love one’s end of life care.
“Advance care planning can ensure our loved ones’ choices for future medical treatment are recognised so that their beliefs, preferences, values and decisions can be respected,” Prof Patsy Yates said.
“It also means that those left behind are not faced with the daunting prospect of making uninformed decisions on a person’s behalf.”
Accessing palliative care services
Elsewhere Dr Luxford said while palliative care sought to ensure people had the best possible quality of life until the end, the lack of access to and knowledge of palliative care services reflected in the survey was shocking.
The survey found that 45 per cent respondents’ loved ones received palliative care, with 83 per cent saying it far or somewhat exceeded expectations, but 17 per cent reported they found it difficult to access palliative care services.
“It is great to know that people are pleased with the palliative care their loved receive, but it is clear that much more work needs to be done to ensure that everyone who could benefit from palliative care is able to access it. Currently, the system is letting people down.”
Visit the Palliative Care Australia website to find out about the wide range of specialist services available to help ensure all Australians have quality end of life care and the extensive information at hand to help people prepare for death and dying. www.palliativecare.org.au.
For more information about the week’s campaign including events and activities, visit PCA’s National Palliative Care Week page.
PCA is encouraging people to get involved in the awareness campaign by paying tribute to a loved one at mytribute.com.au, a website it has recently launched.
