This article was first published in The Health Advocate’s February 2022 edition.
Whether it comes as a surprise, or as the confirmation of a fearfully held suspicion, being told that you are on the road to death is never going to be a pleasant experience.
Receiving an end-of-life diagnosis prompts a massive surge of questions, none of which have easy answers, and all of which arrive at once.
“The diagnosis engenders uncertainty,” says Jo Slee, Quality Improvement Consultant at the Royal Melbourne Hospital.
“People can experience emotions such as shock, sadness, fear, anger, regret, loneliness and depression. They wonder how long they have left, how they will cope, how their family will cope – and the concerns cascade from there.”
One of the matters that has significantly exacerbated the end-of-life experience for patients, family and carers is the fact that the information suddenly needed to make crucial decisions is scattered across the internet on literally hundreds of sites. Facts needed just to formulate key questions, let alone answer them, can sometimes be frustratingly difficult to locate.
In response to this issue – widely reported in consultations with community and the medical sector – North Western Melbourne Primary Health Network (NWMPHN) has researched, designed and compiled a new website that functions as a “one stop shop” for information and resources about end-of-life needs.
Called Lately, it is now live.
Lately starts with the presumption, borne out by patient and family testimony, that an end-of-life diagnosis prompts new, important questions and conversations for everyone involved. None of these are easy, so the website contains scores of curated items designed to encourage reflection and discussion while there is still time for calm responses.
“Most people are uncomfortable talking about death, and sometimes delay necessary conversations until it is too late,” says NWMPHN CEO Christopher Carter.
“Too often discussions about end-of-life planning don’t start until the person concerned is in an emergency department, an aged care facility, or a palliative care unit, and emotions are running high.
“These difficult conversations require courage, openness, time and the ability to listen and learn. Lately provides the resources and concepts to make having those conversations easier.”
Such discussions are critical, but their utility is limited if the ability to then take action is constrained by lack of resources.
These actions can be confronting in their sudden range and depth. They might include sourcing modifications for housing, finding mobility aids, preparing advance care planning directives, linking into disease-specific or culturally appropriate support services, engaging carers, finding psychological or spiritual counselling, and many other things. Matters that were of little concern before an end-of-life diagnosis suddenly become all-consuming after.
Recognising this, and working with digital design company Portable, the Lately project team created an enormous, and ever-growing, directory of service providers. The searchable directory provides direct links to government, non-profit and private entities providing assessment and assistance across a very wide range of activities relevant to patients and families.
Many of the services included are specific to NWMPHN’s catchment area, which covers 1.8 million people living in Melbourne’s CBD, northern and western suburbs. Others, however, offer assistance across Victoria, or Australia.
“The Lately concept began in 2017, when we were funded by the Commonwealth Department of Health as one of 11 PHNs to deliver the Greater Choices for at Home Palliative Care pilot measure,” says team leader Jesse Osowicki, NWMPHN’s Integration Manager.
“We developed it using advice from experts in palliative research and care, and a range of community stakeholders including people with lived experience, and representatives of CALD and Aboriginal Torres Strait Islander communities. As Lately continues to grow, other PHNs might adapt it, moving toward coverage of the range of supports available across Melbourne and nationwide.”
Indeed, although only publicly accessible for a couple of weeks, the website has already attracted interest from other primary health networks, interested in adapting it for their communities.
Nora Refahi, a mental health counsellor who specialises in palliative care, took part in the community consultation phase of the website’s development. She hopes the advent of Lately will go some way towards encouraging more, and more open, conversations about death and dying.
“There is not enough acknowledgement of death, the hope of dying well, or dying with dignity,” she says.
“There are public campaigns about this, but they only reach a few who may be interested as a result of personal or professional pathways. This can change by normalising death, viewing it as part of life.
“Personally, I find compassionate conversations can go a long way. My hope is that there can be an investment of funds to support patients, carers, families and professionals from all fields and levels.
“Placing all the information in one single site, like Lately, provides peace of mind and plays an important role in catalysing those conversations.”
Lately can be found at lately.org.au. Services wishing to list in the directory can do so by following the prompts. (All submissions are vetted before being added.)