WE all die eventually, of course, but these days it’s very hard for doctors and loved ones to let patients and relatives die without first doing “whatever it takes” to try to keep them alive. That is, unless they’ve left clear instructions to the contrary.
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The extra years of good health are wonderful. But everything comes at a price. While we and our loved ones can often be kept alive, this may involve burdensome treatment and awful outcomes.
But while the default position of medicine is to prolong life, staying alive isn’t everyone’s number-one priority, as my soon-to-be published survey results reveal.
Death can’t be considered in isolation (by simply asking “Do you want to avoid dying?”) but has to be considered in the context of other possible outcomes that people might consider to be worse.
Using this type of human choice methodology, my colleagues and I surveyed 1166 Australians aged over 55 about their end-of-life care wishes.
We found the respondents fell into four broad groups:
- 61 per cent of over-75s and 42 per cent of under-75s strongly oppose any intervention that prolongs life in poor health or results in a poor quality of life. They generally reject burdensome treatment. This group has a particular aversion to being kept alive in the presence of dementia.
- 7 per cent of over-75s and 6 per cent of under-75s want medical interventions no matter what the chances of success and/or degree of impairment.
- 32 per cent of over-75s and 33 per cent of under-75s have limits and concerns but are willing to make various “trade-offs” about treatment and outcomes. They take “each decision on merit”.
- The remaining 19 per cent of those aged under 75 years show weak preferences with no discernible patterns.
So the default position “to do everything to save life, no matter what” addresses the wishes of only a small minority of patients. If you happen to be one of the seven per cent who want all possible medical interventions, you probably need to do nothing to ensure that you get all the treatment available.
If you are one of the remaining 93 per cent, you need to act to make your wishes for treatment at the end of your life crystal clear. They need to be unambiguous and authoritative enough for doctors and family members to feel confident to respect them.
We are all very different and what one person might consider utterly unacceptable someone else may accept without question; for instance, being unable to speak or to eat.
Feedback from our attitudinal study suggested answering questions helped people think about issues they’d not considered previously. This prompted my colleagues and I to develop an online tool called My Values, to help people start advance care planning.
After answering questions, users receive an instant analysis identifying the themes that are strongly and consistently reflected in the answers. Users can then use the report as a first step to having a conversation with their family, their doctor and most importantly with themselves.
Others might prefer to talk with their doctor or to make an appointment with a specific Advance Care Planning facilitator, where such a service is available. It’s always going to be difficult, but now is the time to start thinking and talking about what matters at the end of our life.
By Deakin University Associate Professor Charles Corke
