This month, COORDINARE asked people in South Eastern NSW how they feel about discussing dying and end of life care. We sought to find out how many people have planned for end of life, and whether they have any formal arrangements in place.
Survey responses indicated that more than half of our Consumer Health Panel participants (53%) have spoken to someone about the kind of care they would like to receive, should they become seriously ill, injured or unable to care for themselves.
More than three-quarters of survey participants (77%) spoke to their child/ren about these wishes, closely followed by a partner or spouse. During the end of life conversation, most survey participants said they felt confident and reassured.
More than 60% of people felt it was important to have an end of life discussion because they are getting older. Other reasons for planning for end of life included: family considerations, imminent surgery and the current euthanasia debate in Australia.
Interestingly, 1 in 4 people indicated that they have not had an end of life conversation, and would feel uncomfortable having the conversation.
We also asked the panel how they would feel if someone else started a conversation about their end of life wishes. More than half of people (54%) said they would be pleased to be part of the discussion; especially if it gives the other person peace of mind.
More than 60% of people felt it’s best to have an end of life discussion when a person is healthy. Only 6% of people felt that the best time to discuss end of life care is when a person is very sick.
Several people suggested that talking about end of life should be a regular occurrence and become part of everyday life. The general consensus was that being of able body and mind is the most important factor when deciding your end of life wishes.
However, some people were concerned that young adults may not have the life experience to decide on their end of life wishes.
Interestingly, while most of our panel support having an end of life discussion, 70% of people have not made any formal (written) arrangements. However, 66% of people intend to make formal arrangements in the near future.
Of those who have already made formal arrangements, over half (57%) have created an Advance Care Directive and appointed an Enduring Guardian. Some people sought legal assistance to do this.
Almost 80% of survey participants have given a copy of their written documentation to a family member or trusted friend, and/or uploaded their documentation into My Health Record.
65% of people indicated that they plan to upload their Advance Care Directive into My Health Record. However, a small percentage of people are unsure what an Advance Care Directive is, and don’t know how to upload end of life documentation into My Health Record.
The most common reasons for not wanting to upload an Advance Care Directive into My Health Record included a lack of trust in the system, and plans to opt-out of My Health Record.
Thank you to our panel members for sharing their views on talking about dying and end of life.
Palliative and end of life care is a key identified priority for COORDINARE (read our priority statement for more details). We have recently launched a new palliative and end of life care section on our website, which you can view here.
If you would like further information about making an Advanced Care Directive, including a form and information booklet to help you complete your Advanced Care Directive, click here.
Uploading your Advanced Care Directive to your My Health Record will help make your treating doctors, hospitals and other healthcare providers aware that you have specific wishes about your future medical treatments or care given to you. To find out how to add your Advanced Care Directive to your My Health Record, click here. Remember to review your plan regularly, and update it when your wishes or custodian contacts change.
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