Julian Kingma had a profound fear of death. In this aspect, he’s perhaps not so different from many people. Yet, his fixation on mortality began in childhood and continued into adulthood.
In his work, he often finds himself documenting the stories of terminally ill individuals. His intrigue about those contemplating the end of their lives predates Victoria’s introduction of the Voluntary Assisted Dying (VAD) Act in 2017, which made him reflect on these important issues.
In 2021, he tuned into *Better Off Dead*, a podcast by Andrew Denton, founder of the charity Go Gently, which shared stories from some of the first people using this pioneering law in Victoria.
This was a turning point for Kingma. Hearing these narratives took on a new dimension when he put faces to the stories. It eased some of his worries. This led to his collaborative project, a book-length photo essay titled *The Power of Choice*, which transformed his perspective.
For more than a year, Kingma traveled across the nation, connecting with people who were dying, as well as their doctors and families. This experience pushed him to confront his own fears regarding death.
These encounters encouraged openness from his subjects. “I was surprised by their honesty,” Kingma recalls. “Many felt it was essential to share their stories, and they welcomed the opportunity.” No one shied away from discussing their situations.
Even more astonishing for Kingma was the autonomy his subjects showed during such a vulnerable time. “I wanted to ensure they felt in control, almost like a dance I was leading,” he noted.
Though he offered to let them view their portraits, the response was often a rejection. Some feared seeing their images might change their resolve about their choices.
There were uplifting stories too. Take Sue Parker, for instance. She battled amyotrophic lateral sclerosis, and at 75, she remained remarkably composed, even as she knew what lay ahead. She had her family around her, marking her last days with meaning and a touch of defiance.
Parker was Kingma’s first subject for the book. He expressed how her energy captivated him. On her final day, she reassured him about his role, asserting, “This is going to be a great send-off, and I want it here.”
However, Kingma doesn’t paint VAD as a straightforward solution. He highlights the complexities of emotions, including fear and doubt. Even proponents of the VAD law had mixed feelings about its implications, as noted in his introductory essay.
Kingma’s subjects didn’t always have the chance to follow through with their decisions for various reasons, like their illness advancing faster than expected.
A recurring theme in their stories was the comfort of having agency in their departure. “I don’t want to die, but it’s crucial for me to know I have a choice,” shared Barry Walton, who was facing bowel cancer.
Kingma also spent time with healthcare professionals who assisted his subjects. They faced their own challenges when it came to administering life-ending medications.
Reflecting on his experiences, Kingma acknowledged the emotional toll it took. He naturally developed relationships with those he photographed, making it hard when the interactions took a final turn. “You build connections, but it’s difficult when you feel such weight,” he said.
Unfortunately, there’s still a notable lack of practitioners willing to assist terminally ill individuals due to various ethical or moral reservations. Many also struggle with the emotional weight of such responsibilities.
Currently, all states and territories in Australia permit assistance for dying. Interestingly, Northern Territory was the first area to pass related legislation back in 1995, though it was later repealed.
New South Wales became the last state to legalize VAD in November 2023, but the law will come into effect later.
For Kingma, showcasing the power of choice not only contributed to those nearing the end but also transformed his understanding of death itself. The bravery of those who opened their lives to him in their final moments deeply influenced him.
“Why do they do that?” he wonders. He contemplates whether he would be open to such vulnerability if he were in their position, responding, “I’d like to say yes, but maybe the truth is no.”
