When the person fades, the question of their essence arises

I’m collating an expanding list of phenomena that one can sense but are near impossible objectively to measure. So far, I have love, compassion, goodwill and flow. Though not everyone would agree, I’d add soul to this list, my preferred definition of which is an “immaterial essence”.

I like the idea that we all have an immaterial essence. Perhaps that essence becomes most apparent, and is most important, should the peripheral and material elements of our lives fade.

When my father died with dementia six years ago, his vocabulary had receded by and large to one word: “indeed”, which I now have inscribed on my forearm. Of the many thousands of possibilities, it seemed somehow fitting that this would be the word Dad retained.

Does a person retain an essence of themselves in the face of cognitive decline, or is this something others simply project?

This is not just an academic question. When people are no longer able to make certain decisions for themselves, our laws – in the fields of guardianship, aged care, medical decision-making and powers of attorney – are increasingly requiring people to be supported to make their own decisions, and for any decisions made on their behalf to accord with the person’s “will and preferences”.

This phrase “will and preferences” is used to distinguish a person’s long-held beliefs and life-moulding trajectory from the more ephemeral and instinctive choices a person might make at any given moment.

This amounts to a gesture by lawmakers to the enduring importance of a person’s core or essence, which should guide the making of decisions that affect them. This requires us to look to the life that’s been lived, and not just focus on what the person in front of us may at this minute be saying or indicating.

This is important, yet complex. Being true to one’s core sounds admirable; but how do we also cater for the possibility that people can change their minds, and even their ways?

I co-presented a conference paper on advance planning with Theresa Flavin, an extraordinary advocate who lives with dementia. She is concerned that unduly privileging at some future point her momentary choices and desires would be “unacceptable to me because it contradicts the values that give and gave meaning to my entire human existence”.

And so the big question remains. Shorn of the accoutrements of a person’s life, who are we? How would we describe our essence? Perhaps more important than having immediate answers is orienting ourselves to be asking such fundamental questions. To which I can hear Dad’s response.

John Chesterman is the Queensland public advocate