What Do Young People in Hospice Require? Autonomy, transparency, respect

By Clinical Psychologist & IAHPC Member Azhani Amiruddin
Manly Adolescent and Young Adult Hospice, New South Wales Health, Australia

Spidey gives the care at Manly hospice a big thumbs up, to Azhani Amiruddin's delight. Photo used with permission.

1. What drew you to the field of pediatric palliative care?

I was drawn to pediatric and adolescent/young adult palliative care because it provides a rare opportunity to work with the whole person, beyond symptoms, diagnosis, or prognosis. 

Early in my career, I noticed how often the psychological needs of adolescents and young adults were overlooked, particularly around identity, autonomy and communication. Palliative care allows me to sit alongside young people and their families at a time when emotions, values, and relationships are heightened. Supporting them to make sense of what matters most, and to stay connected to who they are, continues to be the most meaningful part of my work.

2. How do you approach a young child with a life-limiting illness? 

For young children, or those cognitively younger than their age, connection is the priority. I enter their world gently through play, curiosity, and observation. They often look for reassurance that I am a safe person, and that it’s okay to express themselves however they need to. 

They may not be able to articulate their fears or worries directly, so I focus on creating enough emotional safety that they can show me what they need in their own way and through drawing or collaborating with our art and music therapists.

3. What is important to adolescents at this time of life?

Autonomy, transparency, and respect. In early encounters, I’m transparent about my role: offering confidentiality and help, describing the importance of involving the multidisciplinary team, advocating for their needs, and letting them take the lead when engaging with them. 

They want to be seen as whole people, not “patients.” Many want to talk about ordinary life—school, friendships, gaming, relationships—which is often how they make sense of extraordinary circumstances. They are also deeply attuned to fairness and authenticity, so giving them real choices and involving them meaningfully in decisions is essential.

5. What is your role for the siblings of children in hospice care? And for the parents?

Siblings often feel unsure of their place in the family’s experience. Helping them feel included, without being overwhelmed, is crucial.

My role is to give them a safe space to express fears, anger, guilt, or confusion, and to support their understanding of what’s happening in developmentally appropriate ways. I provide supportive and short-term therapy with the aim of linking them to appropriate community supports. 

For parents, I support them through anticipatory grief, communication challenges, and the emotional weight of care planning. Many want guidance on how to talk with their child or adolescent, how to balance honesty with hope, and how to maintain meaningful connection during an uncertain time. My role is to hold space for their distress while helping them stay anchored to their values as a family.

Our grief counsellor, social workers, and I are establishing a bereavement support group for our adolescent/young adult families in 2026, creating a space for connection and community among those experiencing similar losses.

6. What do you look for from the rest of the palliative care team?

Consistency, clear communication, and shared understanding of the young person’s goals. 

The best care happens when the medical, psychosocial, and spiritual team members move in rhythm, not in parallel. I look for a team that can sit with emotional complexity, adapt as needs evolve, and uphold the young person’s autonomy, dignity, and developmental priorities.

Reference

1. Mazumder S, Amiruddin A. End-of-Life Goals-of-Care in Adolescent and Young Adult Cancer Patients: A Systematic Review. Psycho-Oncology 2025; 34(12): e70339. DOI: 10.1002/pon.70339

Azhani Amiruddin, PhD, joined the IAHPC in 2025 to qualify as a Scholar for the 25th Oceanic Palliative Care Conference, which she attended. "It allowed me to connect with a generous and experienced global community whose insights meaningfully inform the development of the Manly Adolescent and Young Adult Hospice model of care. The most valuable IAHPC resource has been the peer network, colleagues who share ideas, challenges, and innovations that can be adapted directly into adolescent/young adult practice."