2019

27th November: Tackling taboos: Can we agree on how to talk about end-of-life with young people?

A death illiterate society

We, as a society, are not particularly good at dealing with death.
In modern Western societies, medical advances (together with social changes in elder-care) mean that it is unusual for young people to see someone close to the end of their life, let alone someone who has died. We dye our hair, get plastic surgery, eat ‘organic’, and airbrush our Instagram photos to avoid looking old. We cling to euphemisms (“passed away”, “we lost him”) to shield ourselves from the reality of death.

When a young person is dying, our discomfort with death is brought into even sharper relief. Medical advances have meant that it’s now quite unnatural for a young person to die. For young people themselves, there are also a lot of barriers to thinking about death. The idea that young people think they are invincible is so commonplace that it’s almost cliché. Their lives – and all the possibilities that come with it – seem to stretch out for decades ahead of them.

Getting cancer young: Facing the impossible

To get cancer young is to face the impossible – the unfathomable.
Most young people describe the day – the moment – they receive their cancer diagnosis as surreal. For some, an almost out-of-body experience: where the rush of fight-or-flight adrenaline swoops in to rescue them – temporarily – from the abject horror of the reality that they could die, just as their adult lives are beginning.

Then, for most, treatment begins: the day-to-day busy-work of biopsies and scans, hospital-parking and clinic appointments, chemo and ward-rounds takes over. The life-threatening takes a backseat to the more immediately life-altering aspects of cancer. The hair loss, mouth sores and nausea. The central-lines that get in the way of swims at the beach; the friends that gradually stop including you in group-texts; the stir-crazy irritation that comes with having your well-meaning family suddenly by your bedside day-in, day-out, repeatedly asking: “How are you feeling? Can I get you anything?”

So for most young people, that initial jolt of fear – the realisation that “I could die from this” – fades to an uneasy hum in the background. A manageable niggle, rather than an all-encompassing panic.

To read full commentary, please visit Oncology News

26th September: ​How do we improve healthcare? Allow clinicians to guide what research actually gets done - Dr Ursula Sansom-Daly on ABC News

I spend a lot of my time looking at how we can get better at having tricky, end-of-life conversations with young people with serious illnesses like cancer.
While most adolescents diagnosed with cancer will survive, around 15 to 20 per cent will not.
These are 16-year-olds who may never get to graduate high school; 24-year-olds who may never get married or have kids.
I wear two hats in my work. On one hand I'm a clinical psychologist, on the other I'm a researcher.

But wearing my fancy research fedora, I can tell you there is good evidence that talking about end-of-life issues does not greatly increase young people's anxiety.
In fact, it can lead to young people feeling more heard, having their pain better managed, getting to make meaningful decisions about how they want to spend their time, and importantly, can result in them having to endure fewer painful, aggressive treatments and procedures close to the end of their life.

I can also tell you that currently, dying adolescents are not getting to have these conversations often enough, or early enough.

Continue reading

Listen to the podcast

Currently, we are working on recruiting a few more AYA participants for Stage 1 interviews before closing out this phase. Next we will finish synthesising data from Stage 1 and prepare a modified version of the Voicing My CHOiCESTM tool based on these data. This will be followed by initiation of recruitment for Stage 2 interviews through our professional networks at Sydney Children’s Hospital and CanTeen. These interviews will use the ‘think aloud’ technique to prompt participants to respond to the proposed changes to the tool. 

Find more info in the complete newsletter

Media
https://www.abc.net.au/radio/newcastle/programs/mornings/end-of-life-convesations/11152256

https://www.abc.net.au/triplej/programs/hack/endof-life-conversations-aid-better-death-for-young-people/11293128
​
www.2gb.com/podcast/planning-for-your-death/

10th January: What is to blame for childhood cancer? We often misunderstand the reality

Most members of the community who have not been affected by childhood cancer mistakenly believe that childhood cancer is caused by genetic or environmental factors, rather than simply bad luck, a study led by Dr Janine Vetsch and our Ethics and genetics team has shown.

The study – published in Acta Oncologica this week – explores survivors’, their parents’ and the community’s views on causal attributions. Its findings will be crucial to address misconceptions, offer access to services and adapt current and future health behaviours.

“Many adult cancers are caused by lifestyle, genetics, aging and the environment. In contrast, it is still mostly unclear what causes childhood cancer, and community views on causes are an understudied area, too,” says study lead author Dr Janine Vetsch.

​“Few childhood cancers are attributed to genetics or environmental factors, so when children are diagnosed with cancer, families often wonder ‘why me/why us’?

​‘Why us?’ Causal attributions of childhood cancer survivors, survivors’ parents and community comparisons - a mixed methods analysis