Every year across our regions thousands of people receive the most awful news from their doctor: they have developed a condition that is going to end their life.
For some the discovery that they have a life-limiting condition will mean they can expect to live for less than a year. For others – diagnosed perhaps with Parkinson’s disease or dementia – the timeframe can be much longer.
For all, however, the sudden knowledge that the path towards death is now clear carries with it deep shock and grief, followed, in most cases, by concerns about loved ones, family, dependents, and all those set to be left behind.
Not surprisingly, this abrupt change of fortune produces a cascade of concerns and worries – about the process of dying itself, the financial, spiritual and legal implications, and even how to tell those closest in life what has happened, and what will happen next.
“It can be a very stressful period,” says philosopher Dr Stephen Fleischfresser from Trinity College at the University of Melbourne.
“As a society we are not very ‘death literate’. We are not used to talking about dying, and these sort of taboos make it very difficult for people to talk openly about their needs and wants when they receive a life-limiting diagnosis.”
Dr Fleischfresser in part of a team that has contributed to a unique website designed for residents in Melbourne’s northern and western suburbs.
Called Precious Time, the site was created by North Western Melbourne Primary Health Network (NWMPHN).
It combines advice and insights from experts on how to have the multiple difficult conversations that arise when the end of life comes into focus. These are conversations not only for the person centrally affected, but also for their family, friends and carers.
Precious Time also contains a very large directory of services – many focused on our region – that might be useful. These include symptom support, cultural and spiritual help, home-help and mobility assistance, advance care planning, aged care and counselling services.
“When you or a loved one receives an end-of-life diagnosis there are suddenly all these new questions, about matters you’ve never had to think about before.
“Finding those answers – even finding out where to look for those answers – can be an extra layer of stress at what is already a very stressful time. Precious Time, at the very least, makes that process much easier.”
Christopher Carter, Chief Executive of NWMPHN, said the website was the result of a considered planning and consultation process.
“We started by convening a panel of community members to explore thoughts and needs in the matter of life-limiting conditions and what could be done to help,” he said.
“After that we consulted with experts in palliative care and related areas, and then did a very broad sweep for relevant services in the northern and western areas of Melbourne, and regional areas out as far as Bacchus Marsh.
“We think the result is the most comprehensive and largest collection in our region of services and supports for patients, families, friends and carers.”
The Precious Time website is the first of its kind in Australia – although very likely not the last. At the start of this year it won a gold medal in the Australian Design Awards. While the website is focused on NWMPHN’s catchment, the 1.9 million people in the north, west and centre of Melbourne, it may be helpful for anyone facing end of life challenges or their loved ones. The website can be found at precioustime.org.au