Childhood cancers

Challenges of end of life discussions with young people

Most healthcare professionals experience difficulty having end of life conversations with young people with cancer, however an excessive focus on active treatment does no one any favours.

Clinical psychologist Dr Ursula Sansom-Daly, a postdoctoral researcher in the School of Women’s and Children’s Health at the University of NSW, told the limbic that delaying the tricky conversations risked young patients dying in distress or not in their preferred place.

She said there was also evidence that parents who did not participate in end of life discussions with their dying children experienced regret, while those parents who did have the conversation, didn’t regret it.

“It’s so unnatural to be sitting across from an 18-year old who is not going to survive so I think there are emotional and psychological barriers to talking about these things.”

“One of the biggest barriers in this area is that everyone independently thinks it’s important to have these conversations but there is anxiety about opening up a can of worms.”

Dr Sansom-Daly presented research at the Clinical Oncological Society of Australia (COSA) ASM in Sydney that found 70% of healthcare professionals who had worked with young people dying of cancer experienced some anxiety or difficulty with end of life conversations.

“Even experienced staff can struggle as it’s very confronting,” she said.

Interviews with oncologists, haematologists, nurses and allied health workers revealed an ‘excessive focus on treatment’ was one of the perceived barriers to high quality and timely end of life conversations.

“Doctors with the best of intentions will pursue as much treatment as they can with the hope of extending that person’s life. But when do you start to layer in palliative care? I don’t think that pursuing ongoing active treatment even with a poor prognosis has to preclude having these kinds of discussions.”

Healthcare professionals also identified a perceived lack of support from some families in initiating end of life discussions – that they didn’t have permission from parents to ‘go there’ in discussions with the adolescent or young adult.

“More training might empower healthcare professionals to navigate that difficulty with parents and help them come to a point where they might feel more comfortable. It’s not achievable in one conversation; it’s a longer process,” she said.

The research found broad agreement that the best person to have end of life discussions with a young person was the health professional with the best relationship with the patient.

“There is no right answer as to who is the right person to have these conversations but the consensus was whoever has the best relationship and has that rapport.”

“The thing with these conversations as well is that sometimes you have to be opportunistic and so if someone starts voicing some concerns, perhaps in the waiting room waiting for treatment, then hopefully the clinician would capitalise on that.”

Dr Sansom-Daly is looking to further develop clinical training to help increase the confidence of health professionals in dealing with end of life discussions with young people.

“We are never going to take away all of the anxiety, and that’s absolutely normal and appropriate.”

She is also looking to adapt an Australian version of Voicing my choices – a US advance care planning guide that can support end of life conversations young people.

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