Extreme Autonomy: A case study of Voluntary Assisted Dying (VAD) in adolescent palliative medicine

With our combined expertise in adolescent and young adult (AYA) oncology and palliative medicine, we found ourselves in uncharted waters when ‘Bambi’, a determined, independent, rebellious, challenging and endearing young woman, demanded access to VAD as the youngest person in Victoria to do so.

As clinicians, our role is to provide holistic care, encompassing symptom control, supportive care and maximising of quality of life for those living with a life-limiting illness. Whilst it still reflected many of the principles of paediatric palliative care, this case study deviated from our ‘normal’ experience.

Through careful listening and the provision of time and a safe, non-judgmental space to voice her perspectives, wishes and worries, we gained an understanding of Bambi’s emerging independence and her strongly-held values over the four years of our clinical engagement. We facilitated her exploration of developmental milestones in conjunction with her cancer trajectory, with the challenges of risk-taking behaviours, autonomy, separation from parents, career vocation goals and maintaining a sense of control.

This case reflects the complexity of navigating adolescent-centred palliative medicine, noting the competing needs of the parents and patient, with the added complexity of separated parents, step-parents, a sibling with his own adolescent issues and extended family conflict.

The addition of the Victorian Voluntary Assisted Dying Act to this already-tumultuous journey exposed us to a huge learning curve, as we strove to support Bambi and provide her with the information and tools she needed to choose her own pathway.

We will present this lived experience through Bambi’s own words, as well as the reflections of her parents and ourselves as her health care team. We hope to share our profound learnings from sitting in an at times uncomfortable, but ultimately transformative, space with this remarkable young woman.