By Sharon Willdin
Death is the last intimate thing we ever do – Laurell K Hamilton
Often held as taboo, the topic of how we die and choose to die is avoided – almost as if the mere thought of our death can hasten our date with destiny. However, rather than avoid the issue, Julian Kingma tackled his own anxiety and confronted the subject of Voluntary Assisted Dying (VAD) in his book The Power of Choice.
Kingma, an experienced and gifted photographic journalist, whose first job as a cadet was covering the Queen Street Massacre, took pause and reflected on his life during the COVID pandemic. He decided that what he wanted to do was to create meaningful content. His plan to do that involved telling the story of people who were at the end of their life contemplating VAD.
He succeeded in his goal as Kingma’s book documents their journeys with intimacy, compassion and affection using a series of black-and-white images tied together with simplistic and effective narration.
During his conversation with Ashley Hay and Andrew Denton at the Sydney Writer’s Festival, Kingma confessed that prior to commencing the book he held a mortal fear of dying and experienced anxiety at the thought of death. However, he defied his fears and spent two years meeting an extraordinary range of people and, during that process, was privileged to bear witness to their last moments alive.
Kingma began his journey with Sue Parker, a 75-year-old trained nurse, who was diagnosed with incurable Motor Neurone Disease. When he first went to meet Sue at her house in Ballarat, he felt an infinite connection to her. Anxious himself, he asked her how she was, and she immediately put him at ease with her reply: “I’m great, I’m dying on Monday.”
Sue had chosen the date she was going to die, and it was marked on the calendar with the words “used by date” surrounded by a hand-drawn heart. She said she just wanted “to die at home, in the garden with the sun on my face”.
While MND might have taken away the control Sue had over her life, on November 28, 2022, she took the reins and was able to die on her own terms. On the morning of her death, she poured a glass of single malt whiskey, toasted her solicitor, played The Choir Boys’ Last Night of My Life, said everything she needed to her family, moved to her daybed in the garden that was arranged with pillows and a doona, swallowed the medication, washed it down with another shot of whiskey, and fell to sleep holding her daughter’s hand with the sun on her face.
Denton provided an honest and emotional contrast to the graceful death experienced by Sue in Kingma’s book. Denton described in detail the traumatic, drawn out, and painfully harrowing death of his father, Kit Denton, in 1997, at a time when VAD was not a legal option.
The trauma of Kit’s death is so deeply embedded in Denton’s psyche that it motivated him to form a charity, Go Gentle Australia. The charity aims to empower and support Australians who want to have a choice about the way they die.
Denton has spent many years advocating for Australian’s right to have compassionate end-of-life care and challenging the conservative legal position in relation to the matter. He recalls sitting with the dying while changes to the law were debated in the NSW Parliament in 2022.
When The Voluntary Assisted Dying Act 2022 was passed people cheered and he said this was “the sound of people celebrating democracy in action”. The changes enabled people to “take control … it was really significant that they took control … it reduced anxiety for them”.
Since Kit Denton died there have been many advancements, and now VAD is legalised in all states and territories, except in the Northern Territory, but this is currently being contested.
The current process is that two VAD-registered physicians need to assess an individual’s timeframe to death as less than six months, and a case can be made for those with 12 months to live. The individual must be an adult, an Australian citizen, and possess mental acuity. When approval is given, it provides access to a life-ending substance which is a mix of two medications that can be drunk through a straw at a time chosen by the individual.
Kingma said that several people in his book were organised and prepared to take the end-of-life medication but chose against it. However, he points out that the mere act of having access to the medication reduced their anxiety and people need to have the option to use it to obtain some control over the way they die.
There are many reasons why a person suffering at the end of their life may choose not to utilise VAD. Some of these include fear, hope, religious values, and cultural beliefs. Their right to make that choice also needs to be respected.
One factor that continually surfaced is the impact of VAD on family and loved ones. There were opposing views, with some being strong advocates for VAD and others rejecting the idea.
Denton recounted an example of a man with a terminal diagnosis who wanted to end his life. The man insisted that when he took the medication his loved ones needed to be removed from the room as “their love kept sucking him into staying”.
It is important to ensure that people who are facing end-of-life care have compassionate support and access to the means to end their life. The choice to end one’s own life is a profoundly deep and personal decision. However, the decision itself must be made by the person who is dying, and they should not by unduly influenced by outside pressures, obligations or perceptions, from or about, their loved ones.
The terms used to best describe the process of VAD were “trust”, “comfort”, “gently placated to death”, and the most predominate – “peaceful”. Kingma manages to capture all these feelings to perfection through his ability to identify and connect to the humanity in others. He turns his subjects into people; people who touch us and people who we feel an intimate care and affection towards.
The audience at the event were mostly mature adults who each looked like they had their own stories to tell. At times during the talk, we were moved to tears. After the event there was a quiet comradery and reverence amongst us as we flipped through Kingma’s book in the foyer with a shared sacred respect for those who we had come to know.
Featured image: Julian Kingma, Andrew Denton, and Ashley Hay. Photos: Sydney Writers’ Festival