Autonomy and creativity at the end of life

Published on: Author: Ben Colburn Leave a comment
carved skull in Naples, Italy (courtesy of Ben Colburn)

What does it mean to have a good death? The best way of answering this question takes us via a philosophical theory of the good life. Central to living a good life is the value of autonomy: deciding for yourself what is valuable and living your life in accordance with that decision. Autonomy is an ideal of self-authorship. Being author of your life means shaping it to reflect your values and ambitions, taking responsibility for the course it takes, and forging reciprocal moral relationships (of trust, care and need) with others, helping shape their lives and letting them shape ours too.

I worry that many of us, as we approach the ends of our lives, find ourselves unable to express this core human value. Terminal illness and old age constrain our ability to shape our lives, and unravel the reciprocal relationships which sustain and express our autonomy. The risks of loneliness and isolation in old age are well-documented. But even when people are cared for, there’s a danger that care becomes a one-way street: too often the ill and old aren’t treated as though they can give anything back in return. A loving relationship might be there, but the vital reciprocity is lost.

Nobody is to blame for this: certainly neither medical professionals nor loving families. Like most people, I’ve seen their dedication and sacrifices first-hand. But it is worth asking: can we care, and provide medical treatment, in ways that avoid this unintentional disempowerment? How can we protect autonomy at the end of life?

My search for answers has led me to talk with people who work in end of life situations, to see what I can learn from their approaches and experiences.

One visit I found especially inspiring was to the art department of the Prince and Princess of Wales Hospice in Glasgow (PPWH). Jeni Pearson and Kirsty Stansfield, the resident artists, showed me some of the art that has been produced, and talked to me about their philosophy.

I was impressed by their clear vision. This is not art therapy. Nor is it about delivering a pre-determined curriculum. Rather, they create safe space for people to explore their individual artistic inclinations; their role is to support (but not direct) patients’ and carers’ creative impulses.

Jeni and Kirsty have created something really important. Here is a space where patients can continue the life-long project of self-authorship, finding ways to be creative despite the constraints of their illnesses and regimes of treatment. It was moving to hear stories, especially from families, of how much it meant to see patients discover – sometimes within days of their deaths – capacities for creativity that they hadn’t known existed.

Something else struck me in my conversation with Jeni and Kirsty. Throughout, they insisted that their interactions with patients are a two-way street. They learn from the people they work with, as much as teaching them. They are constantly inspired by the creativity they see, and by how much it rewards families and carers to see their loved ones producing something beautiful.

This sharing, this mutuality, is so important. As I said above, one of the worst things about terminal illness is the way it corrodes the reciprocity of our relationships. Even when we’re being cared for, we can find ourselves disempowered from making a contribution, from being needed, or from offering something back.

In the face of severe adversity, the art room is a small but significant space for restoring this reciprocity. It gives patients back the right to make a contribution. It helps sustain the network of sharing relationships that underpin the autonomous life.

Above, I asked: how can we offer care and medical intervention at the end of life in a way that sustains, rather than undermines, our autonomy?

Jeni and Kirsty’s work at the PPWH suggests an approach which we could try to adopt more widely. We can’t always give back the ability to pursue the ambitions that have shaped people’s lives in the past. But we can find new ways to facilitate creative self-direction, and give back the right to contribute. Even under adverse circumstances, we can find ways to carve out space for autonomy. We can help people to have a good death by helping them live a good life right to the very end.

Ben Colburn

This is an extended version of an article originally published in The Scotsman on 15 September 2016.


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