Difficult decisions: voices and choices for young people at end-of-life

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Difficult decisions: voices and choices for young people at end-of-life

Doctor Ursula Sansom-Daly from the University of New South Wales was recently awarded a research grant from the HCF Research Foundation to focus on improving end-of-life outcomes for young people at end-of-life. She provides an overview of current palliative care practice and how we can shift towards more open conversations.

Conversations about end-of-life are among the toughest – yet most essential – discussions that any family can have. For young people who’ve been diagnosed with potentially life-limiting illnesses, that’s especially true.

As well as grappling with the physical and emotional stresses that come with serious illness, due to their young age they are vulnerable to mental health disorders, whilst also managing challenges to their identity and independence. Despite this, only a fraction of young people receive the kind of information and support they need to both understand their choices and how they and their families can make sure their end-of-life wishes are met.

In fact, approximately 1700 people aged 15-29 are diagnosed with cancer each year in Australia, and many have a poor prognosis. However, in cases where there’s no clinician guidance, conversations about end-of-life care occur for less than three per cent of them. Similarly, conversations with young people with other life-limiting illnesses such as cystic fibrosis are also delayed or avoided. Often, as a consequence of such delays and lack of communication, the desire of many young people to die at home is not met.

Recognising this area of need, the research being undertaken is focused on improving end-of-life outcomes for young people and their families by formally evaluating a US-developed tool, ‘Voicing My CHOiCES’ and its feasibility for implementation into Australian palliative care practice. This project has been funded by the HCF Research Foundation, which this year announced over $1,000,000 in funding for research addressing key healthcare issues.

Overcoming the taboo

Death and end-of-life are a societal taboo. Medical professionals can be reluctant to discuss dying, especially with young people, even when that person expresses their concerns and desire to talk or find out more about what to expect and to explore their options. There’s a range of reasons for this, from the lasting imprint of the taboo itself, to the clinicians’ lack of communication experience, or lack of confidence communicating with younger people. Concerns about causing even more distress are also a factor.

At the same time, when people are not given the chance to have these conversations, we know they are at higher risk of negative outcomes, including greater anxiety, inadequate pain management, dying in a state of emotional isolation and dying in hospital.

Advance-care planning documents are an important way to open conversations about end-of-life care and enable people of all ages to express their preferences – including young people. Young people may prefer to tackle the issue earlier, often want honest information about their illness and want to be involved in medical decision-making. Research[i][ii] shows:

  • When given an evidence-based process to safely address these confronting issues, young people and their families show high levels of engagement
  • Addressing advance-care planning with young people reduces their anxiety and does not affect depression or quality of life.

However, young people and their families often depend on the doctor to raise these topics. Further, there is no research documenting the experiences and needs of young Australians at end-of-life, and no gold-standard protocol to ensure that their psychosocial needs are met.

Toward useful, open conversations that meet young people’s needs

Recently developed in the US, ‘Voicing My CHOiCES’ is a communication tool for adolescents and young people at end of life. It is currently widely recognised as the best tool of its kind. Several Australian clinicians are already using it. While there have been no reported adverse events associated with its use, there’s a strong need to formally evaluate the tool to ensure its appropriateness, feasibility and utility among Australian adolescents and young people with life-limiting illness.

With this in mind, the research project is designed to assist more seriously-ill young people to die at home (if that is their preference), by:

  • Uncovering the barriers and facilitators to appropriate end-of-life communication, and determining current place-of-death practices (stage 1)
  • Tailoring ‘Voicing My CHOiCES’ for Australian adolescents and young people (stage 2)
  • Implementing a national end-of-life-communication training-program for multidisciplinary health-care professionals caring for young people with life-limiting illness
  • Demonstrating the acceptability and feasibility of the tool among young people with cancer and cystic fibrosis

Sharing the benefits: Implementation of clinician training program

Importantly, the project also includes provision for training in the use of the tool in its Australian context, once guidelines are established. This is to ensure that its on-the-ground benefits can be realised as soon as possible.

Training will be delivered nationally to healthcare professionals across the Australian Youth Cancer Services, and beyond. Evaluation of the impact of the training will take place immediately afterwards, and again after three months.

From there, researchers will begin pilot-testing of the Australian Voicing My Choices tool among 20 people aged 15-29 with cancer or cystic fibrosis, measuring their distress, psychological benefits and end-of-life communication compared with others who are not using the tool.

The goal: A positive prognosis for clinical practice

This project has the potential to deliver direct and rapid improvements in clinical practice with adolescents and young people at end of life. These improvements include better psychosocial outcomes, such as reduced anxiety and improved communication, and more young people having their wish to die at home fulfilled.

Using data and insights arising from the research, myself and my team will develop an Australian first: national guidelines surrounding the ‘Voicing My Choices’ tool, encouraging its widespread use to deliver better outcomes for the many young Australians and their families who deserve them.


[1] Wiener, L., Ballard, E., Brennan, T., Battles, H., Martinez, P., & Pao, M. (2008). How I Wish to be Remembered: The Use of an Advance Care Planning Document in Adolescent and Young Adult Populations. Journal of Palliative Medicine11(10), 1309–1313. http://doi.org/10.1089/jpm.2008.0126

[1] Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012). Allowing Adolescents and Young Adults to Plan Their End-of-Life Care. Pediatrics130(5), 897–905. http://doi.org/10.1542/peds.2012-0663