Annette and Ian’s trip into the perilous landscape of end-of-life planning started with an unexpected diagnosis. Her husband, Ian, faced a different kind of war as he fought a rare and aggressive form of cancer. Through this challenge they were forced to grapple with new and frightening realities of mortality. This diagnosis propelled them to produce a detailed plan for his advanced care. They didn’t want to find themselves in a situation where his wishes would not be respected as his condition declined.
As Dr. Annetta Mallon, end of life consultant and educator, would tell you, establishing a death positive culture would begin by having open conversations about death. Her argument is that having these discussions is essential for people and families to process what’s happening to them. “I don’t necessarily always want to do my taxes, but it’s important to do them,” she remarked, drawing a parallel between financial planning and planning for death.
The Importance of Planning
For Annette and Ian, being well-prepared made all the difference. This special process even allowed them to sidestep a rift that was developing between family members as they faced Ian’s deteriorating health. Communication written back in September, the Henrys turned to local palliative care organization Palliative Care WA and garnered personalized support individualized to help their family navigate these tough choices. Annette noted the ease provided by this guidance, stating, “The document itself, 99 per cent of it, is very straightforward. It’s just that people feel a bit overwhelmed by it.”
Ian’s directive also laid out detailed instructions around life-saving or prolonging interventions if he were to come close to a vegetative state. This clarity definitely made his wishes very clear to his carers at the end of his life. It also removed the financial burden from Annette and their family, at a difficult time. “There’s so many decisions you have to make after that person’s gone, and if you don’t know [their wishes] it’s very hard,” she expressed.
The statistics about end-of-life planning in Australia paint a grim picture. In 2021, just 2% of Western Australians surveyed in four hospitals and nursing homes had completed an advance care plan. By 2025, that number dropped to one-third of Australians who have done anything to plan for their end-of-life care. Alarmingly, only 6% of them issued a formal policy statement.
Challenges in Nursing Care
Concerns about pandemics in nursing homes, dealing with understaffed facilities Mountain is an associate professor at the University of Buffalo’s School of Public Health. He points out that even when mandates are in place, they’re often left uncompleted because no one has the capacity to do it all. You’re not incentivized, you’re not paid more for going through and filling out the forms. That’s new paperwork layered onto your already long, hectic, jam-packed day. Legislators will need the stamina to see it through, he said. That’s deeply frustrating to work with.
This profound systemic issue makes it difficult for all care providers to be able to act on patients’ end-of-life wishes. Without sufficient staffing or resources, the beneficial care directives are either left unattended or bypassed altogether. A spokesperson for the industry noted that “if the instructions are ambiguous or uncertain, this may be grounds for a health professional to not be required to follow them.”
This consistent lack of adherence underscores the need for much clearer communications across all healthcare facilities, especially now. Along with query our training and support systems, guaranteeing the patients’ end-of-life desires are honored.
A Call for Awareness
For many of us today, discussions on death are becoming a lost art. Over the last hundred years, death has become more invisible to our everyday lives. Annette and Ian’s story illustrate the power of talking about, and preparing for, death. This specific conversation has proven beneficial to both adults and families. Dr. Mallon insists that these conversations should be normalized: “Talking about death is vital.”
Given their experience, Annette promotes greater public awareness about end-of-life planning. She is convinced that it’s possible to make a positive difference for families who find themselves in the same situation. Personalized, one-to-one assistance is the most effective way for them to define their goals and options and explore what they want from their final days.
Ultimately, Annette and Ian’s approach serves as a poignant reminder of the importance of making one’s wishes clear. By working through these touchy subjects, one by one, they developed an implementation outline that gave them confidence in the midst of the chaos.
