Families failing on ‘taboo topics’

Death and dying are still largely taboo subjects, says Meagan Lawson, chief executive of the NSW branch of the Coalition on the Aged Australia (COTA).

Many people don’t even understand the types of legal documents that can be used, she says, which makes planning of care and medical intervention much more difficult and may prevent the dying person from expressing their final wishes.’

Ms Lawson was speaking after the release of a new report, Dignity, Respect, Choice: Planning for the Final Chapter, which reveals that many older people say they struggle to talk to their families about their wishes at end of life.

The report is based on a survey of 6043 older Australians. Most respondents had a will, although 18 per cent said theirs was not current. However, the use of Enduring Guardianship and Advance Care Directives was low, particularly in the 50 to 69-year age group.

The consequences of not putting these legal arrangements in place can be significant, Ms Lawson says. Without them, it was much more likely that the older person’s wishes for the last stage of their life would not be realised. This caused distress for the dying person as well as increased stress for their families.

The report found:

  • 88.1 per cent of respondents had a will – older respondents were more likely to have a will, but the percentage was lower in the 50–54 age group.
  • On average, 18.1 per cent of individuals said that their wills were not current and did not reflect their current wishes.
  • The use of Enduring Guardianship and Advance Care Directive legal instruments was low – particularly in the 50–69 age group.
  • Just over half of respondents felt very confident in having conversations about palliative care and end of life.
  • 53.7 per cent of respondents said they wished to be cared for in their own home in their final stages of life.
  • A resounding 83.2 per cent agreed with the statement that as a community we don’t discuss death and dying enough.
  • If dying or in the last stages of a terminal illness, the main wish was to be free from pain and surrounded by loved ones.

The report made five recommendations:

  • expand peer-led legal education programs
  • fund community education on palliative care and end-of-life issues
  • develop education of health professionals on these issues
  • promote access to bereavement counselling
  • develop strategies to increase death literacy in the community.

It concluded: “Our societal reluctance to discuss death and dying impacts us all. It inhibits future planning of care and medical intervention; it impacts the emotional and psychological response of both the dying person and those more broadly affected, and it prevents the dying person from expressing their final wishes.”

COTA NSW lamented the loss of one of its key programs assisting older people to formalise their end-of-life directions – the Legal Pathways program. It had been running for 10 years, enabling eligible older people to obtain low-cost end-of-life legal documents from participating private solicitors. Funding was recently withdrawn.

“The Legal Pathways program has enabled thousands of people to put these legal arrangements in place over the years without incurring significant cost,” Ms Lawson said. “It has helped many more to understand what issues they need to consider and how they can protect themselves against elder abuse. I urge the NSW government to secure the future funding of the program.”

Have you found that the subjects of death and end-of-life planning are difficult to raise with family? Are you confident you have your wishes documented?

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Written by Janelle Ward

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