Our experience of death obviously shapes the final moments of our own life. It also shapes the experience and remains in the memories of those around us. Around 160,000 Australians die each year, but few achieve the type of death they would like.
Some 60% of us would like to die at home, but less than 10% are able to. Up to 30% are admitted to intensive care before they die in hospital. As an intensive care specialist for more than two decades, my colleagues and I do the best we can to provide high-quality end-of-life care.
But too often end-of-life planning begins in the last few days. By then it may be too late for patients to choose where they want to die, who they want to be cared by, how they want their symptoms managed, and how to access the right sort of care to make all this happen.
Lack of planning affects us all
To make meaningful decisions about end-of-life care, people need to have an idea of what will be important to them as they reach their final months and days. This is difficult and confronting in our death-denying culture.
They aren't always perfect, though, as we find they are unable to provide clear guidance for each specific patient context in the intensive care unit. However, they can provide a useful trigger for families to have conversations about end-of-life planning.
Nationally, our uptake of advanced care directives is as low as 14%. With no advanced care plans or early end-of-life care conversations, families are left to make decisions when patients are too confused or physically unable to communicate meaningfully.
Patients often in the dark
Families aren't the only ones left in the dark when it comes to understanding the disease trajectory of their loved one. Too often, the patients are unaware of their disease trajectory. They may either be unable to comprehend it or are in denial.
However, also, doctors often avoid these discussions wishing to cure the disease or don't have the time or skills to describe what the disease trajectory looks like as a patient enters the final year or months of life.
Up to 60% of acute patients are admitted to hospital out-of-hours when frequently only junior doctors can care for them. A junior doctor can provide short-term management plans but is often poorly equipped for longer-term goals and to deliver empathetic and clear end-of-life care conversations.
This will help ensure patients are encouraged and supported to express their preferences about end-of-life care and that this care is delivered by those preferences. The reports show demand for end-of-life care in the community, such as community-based palliative care, far exceeds its availability.
Nursing homes are ill-equipped to manage end-of-life care, which often results in traumatic (and costly) trips to the hospital. Improving the end-of-life care experience means planning, funding and delivering an integrated service across different settings and jurisdictions.