By Ursula Sansom-Daly, Anthony Herbert and Antoinette Anazodo
Talking about dying is never easy – but can tailored tools make it easier for young people and their families?
At the opening plenary session of the Clinical Oncology Society of Australia’s Survivorship conference last week, Professor David Currow of the Cancer Institute NSW struck a sobering tone when he said,
“There is only one thing in the world worse than being told ‘your cancer cannot be cured,’ …and that is not being told.”
I feel certain that had all the virtual attendees been present in a room together, you would have been able to hear a pin drop. Because this scenario is not one any health-professional wants to be part of, but the alternative – having these conversations – is so incredibly challenging too. The advent of precision medicine and access to more novel clinical trials often makes the timing of these discussions more difficult(1) as clinicians try to juggle the hope of a cure and the need for open and frank discussions.
As oncology health-professionals we spend hours, days, weeks and months walking alongside our patients, supporting them through the rigours of cancer treatment, and providing gold-standard, patient-centred cancer care.
But what does ‘patient-centred’ care look like, and how do we make it happen?
The patient’s voice is surely at the heart of what it means for care to truly be patient centred.
And this continues to be one of the most wicked problems for our busy, at times resource-constrained healthcare system as a whole: how do we best ensure that patients’ voices are truly heard?
There are many groups whose voices can struggle to be heard – or understood – in our health system: culturally and linguistically diverse groups, Aboriginal and Torres Strait Islander peoples, and individuals vulnerable due to disability, low socio-economic status and low health literacy to name a few.
How do we best ensure that patients’ voices are truly heard?
Young people are another patient sub-group that may be at risk of not having their perspectives heard. For young people, their cancer diagnosis may be the first time they have been admitted to hospital. This lack of prior experience with the healthcare system can translate into health literacy and self-advocacy skills that are only emerging.(2,3) Even when they are relatively well, young people vary greatly in terms of how much ownership they want to take over healthcare communication and decision-making.(4,5)
When they are very unwell, faced with cancer that may be progressing or not responding to treatment the way everyone had hoped, these developmental complexities can make it even harder for young people to voice their perspectives.(6) Adolescents and young adults are also often be treated in hospital settings where patients their age are in the shrinking minority; this can also mean that many healthcare professionals feel underprepared in how best to lead difficult conversations with them – such as talking about the fact that it may not be possible for their cancer to be cured.(7,8)
And what then, once a young person has been told?
A burgeoning body of research tells us that young people do want to be given the opportunity to have conversations about their preferences and choices if it’s possible their cancer can’t be cured.(9,10) Providing young people with the opportunity to talk about issues important to them can avoid unnecessary anxiety, emotional isolation, and can also ensure that physical symptoms such as pain are better managed.(6)
One thing many oncology health-professionals will already know from experience is that there are often questions that patients and families may simply not ask us if we do not first name the ‘elephant in the room’ and give them permission to ask about it. Some topics are simply hard to bring up. Research backs this up: studies suggest that young people and their families often rely on health-professionals to raise palliative care and end-of-life topics first.(6)
This week is Advance Care Planning Week in Australia, and an important opportunity to consider how we can better support these kinds of critical conversations to help our patients.
We have recently adapted a leading advance-care planning communication guide, Voicing my ChoicesTM, to the Australian context.(11) Originally developed by and for adolescents and young adults with serious illness in the US,(9,10) Voicing my ChoicesTM provides an age-appropriate way for healthcare professionals to structure advance-care planning conversations with young people. It supports the ongoing, evolving process of conversations about young people’s future healthcare preferences, needs and desires in a way that is anchored in who that young person is and what’s important to them.
Using consumer-driven co-design methods, our team has adapted the language, content and structure of the tool to better suit Australian adolescents and young adults living with cancer. This has been an important step: not only to make the tool more relevant to our Australian healthcare system, but also to make the tool ‘speak’ in language that makes sense to Australian adolescents and young adults.
Partnering with the Australian Medical Association Queensland we have also updated the tool’s look and graphic design to directly address Australian young people’s preferences and needs. The result is a tool with a distinctly Australian flavour, and an aesthetic our consumers felt was more inviting and engaging for them.
Throughout 2021, we will be piloting the Australian Voicing my ChoicesTM with our collaborators across several Australian hospital sites. This next stage of our research will establish the acceptability and feasibility of implementing our adapted tool in practice with Australian AYAs currently undergoing cancer treatment. It will also give us important data on whether – and how – completing the tool impacts young people’s level of distress, sense of hope, and subsequent communication with loved ones about the things that matter with them. These data are crucial to counteract commonly-held clinician fears, such as:
Will having this conversation take away this young person’s hope? Will they think we have given up on them?
To the contrary, early data from the US suggests that completing the Voicing my ChoicesTM tool decreases, rather than increases, young people’s anxiety.(12)
There is much more work to do
There is much more work to do. We need to check the suitability of communication tools like this for the full spectrum of young people with cancer in Australia, including Indigenous and cultural and linguistically diverse patients. We also need to develop better ways of training and supporting our full multidisciplinary healthcare teams to facilitate these conversations, to better harness the diversity of skillsets present in our hospital wards.(7,13)
Using tools like this may help us avoid the situation where patients are not told their cancer cannot be cured – and may help patients, families, and health-professionals alike navigate the murky waters of, “What next?”
- Burgers VWG, van der Graaf WTA, van der Meer DJ, McCabe MG, Rijneveld AW, van den Bent MJ, et al. Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The “New” Lost Tribe. J Natl Compr Canc Netw. 2021;19(3):240-6.
- Sansom-Daly UM, Lin M, Robertson EG, Wakefield CE, McGill BC, Girgis A, et al. Health Literacy in Adolescents and Young Adults: An Updated Review. J Adolesc Young Adult Oncol. 2016;5(2):106-18.
- Gessler D, Juraskova I, Sansom-Daly UM, Shepherd HL, Patterson P, Muscat DM. Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies. Psychooncology. 2019;28(7):1408-19.
- Lin M, Sansom-Daly UM, Wakefield CE, McGill BC, Cohn RJ. Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors. J Adolesc Young Adult Oncol. 2017;6(1):150-8.
- Wakefield CE, McLoone JK, Fleming CAK, Peate M, Thomas EJ, Sansom-Daly U, et al. Adolescent Cancer and Health-Related Decision-Making: An Australian Multi-Perspective Family Analysis of Appointment Attendance and Involvement in Medical and Lifestyle Choices. Journal of Adolescent and Young Adult Oncology. 2011/2012;1(4):173-80.
- Sansom-Daly UM, Wakefield CE, Patterson P, Cohn RJ, Rosenberg AR, Wiener L, et al. End-of-life communication needs for adolescents and young adults with cancer: recommendations for research and practice. Journal of Adolescent and Young Adult Oncology. 2020;9(2):157-65.
- Wiener L, Weaver MS, Bell CJ, Sansom-Daly UM. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer. Clinical oncology in adolescents and young adults. 2015;5:1.
- Rosenberg AR, Weaver MS, Wiener L. Who is responsible for delivering palliative care to children with cancer? Pediatr Blood Cancer. 2018;65(3).
- Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, et al. Allowing Adolescents and Young Adults to Plan Their End-of-Life Care. Pediatrics. 2012;130:1-9.
- Wiener L, Zadeh S, Wexler L, Pao M. When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices. Pediatr Blood Cancer. 2013;60(5):715–18.
- Arruda-Colli MNFd, Sansom-Daly U, Santos MAd, Wiener L. Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer. Clinical practice in pediatric psychology. 2018;6(4):341.
- Wiener L, editor Developmentally-appropriate advance care planning can reduce anxiety and open doors to conversations: The Voicing My CHOiCES Study. IPOS 2021: The 22nd World Congress of Psycho-Oncology and Psychosocial Academy; 2021 Recorded ahead of the conference, 26th-29th May, 2021; Virtual
- Sansom-Daly UM, Lobb EA, Evans HE, Breen LJ, Ugalde A, Best M, et al. To be mortal is human: Professional consensus around the need for more psychology in palliative care. 2021:bmjspcare-2021-002884.