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.
The overwhelming priority for doctors is to save life. In the last few decades, technologies have progressed so far and fast that doctors are able to embark on treatments that until recently did not exist, or were too risky to consider.
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.
Quality of life
Human choice is rarely logical. We naturally want everything good and nothing bad; real choices only become clear when we are forced to make trade-offs.
This is particularly important when investigating wishes about something as unattractive as death. 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 1,166 Australians aged over 55 about their end-of-life care wishes.
We found the respondents fell into four broad groups:
61% of over-75s and 42% 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% of over-75s and 6% of under-75s want medical interventions no matter what the chances of success and/or degree of impairment.
32% of over-75s and 33% 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% 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.
Applying these preferences
If you happen to be one of the 7% who want all possible medical interventions, you probably need to do nothing to ensure that you get all the treatment available. Though it would be wise to advise others of your desire so they don’t underestimate your determination.
If you are one of the remaining 93%, 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.
This is the basis of advance care planning, where people are asked to identify the things they value, their priorities and what they would consider to be unacceptable outcomes. These wishes can also be put into legal documents called advance care directives.
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.
Unfortunately, the process of thinking about all this is uncomfortable and the concepts are difficult. We have a natural tendency to block out bad and difficult things; never getting round to doing them, or not finishing.
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 what matters at the end of our life.