At the Manly Adolescent and Young Adult Hospice, Dr. Azhani Amiruddin walks a delicate line between the realities of life-limiting illness and the vibrancy of youth. As a clinical psychologist, she witnesses resilience in its purest form – young people carving out moments of meaning despite devastating diagnoses.
This work, she explains, isn’t just about managing illness – it’s about creating space for young people to live fully.
The unique journey of AYA palliative care
In the world of AYA palliative care, adolescence and young adulthood become intertwined with medical appointments, treatment decisions, and a heightened awareness of time.
“Being a young adult is already tough. Add a life-limiting diagnosis, and suddenly, they’re forced to face adult responsibilities far too soon,” Dr. Amiruddin explains. Her role is to help them navigate this reality while still embracing what it means to be young.
Letting them write their own story
Conversations about end-of-life care can seem daunting, but Dr. Amiruddin believes in letting young people lead the way.
“I start with who they are, not their illness. We talk about music, books, their dreams. When they’re ready, they’ll bring up the hard stuff,” she says. “I tell them, ‘We’ll talk about your diagnosis when you want to.’ That way, they’re in control of their journey.”
That trust creates space for honest conversations about fear, hope, and what they want their time to look like. “They deserve the dignity of choice, even in the hardest moments.”
Among the many patients who have left a lasting impression on Dr. Amiruddin, one journey has remained especially poignant.
A 17-year-old boy, overwhelmed by the constant pain of his neurodegenerative condition, had expressed a desire to undergo voluntary assisted dying when he turned 18. “He just didn’t want to live life in pain anymore,” says Dr. Amiruddin.
“He was deeply sad and struggled with thoughts of ending his life, but the more we got to know him, the more we realised that beneath all that pain, what he truly wanted was to experience life as a teenager.”
Supporting his wishes, his care team devoted themselves to ensuring he lived as fully as possible in the time leading up to his 18th birthday. Together they made a bucket list, carved out quality time with his friends, and encouraged him to return to school to reduce any isolation he felt.
“When he turned 18, he told us he just wanted to throw a giant party, have lots of beer, and spend time with his friends,” Dr. Amiruddin adds with a smile in her voice.
“Despite the pain, he said it was one of the best years of his life.” In the end, his journey was not defined by his limitations but by the life he lived.
The whole family
The impact of a young person’s illness ripples through their family, especially siblings, who often feel unseen. Each family dynamic is different, but one constant is the invisible grief siblings experience.
“We recognise the gap for siblings. It’s tricky in a hospice setting because not all can visit, and family dynamics vary,” Dr. Amiruddin explains. Still, she stresses the need to acknowledge their grief.
“Siblings need to feel seen, understood, and supported,” she says. “When they work with a service that knew their brother or sister, that understanding helps them through their grief.” Creating space for siblings to be heard is crucial, she adds. “They grieve just as much as parents and deserve recognition in their loss.”
Work that changes you
Dr. Amiruddin says her work is not just about supporting young people; it’s about learning from them.
“I’ve learned that there’s always more we can do,” she reflects, proud of the remarkable achievements of the young people she cares for. Despite the challenges they face, many have accomplished incredible feats—publishing books, checking off items on their bucket lists, and seeking out adventurous experiences like bungee jumping and travel. “I think the lesson around that is, if you put your mind to it, you can achieve it.”
This perspective is both inspiring and humbling, she says, particularly when working with young adults in palliative care.
“It’s incredibly humbling,” Dr. Amiruddin shares. “On your worst days, you might not want to be around anyone. Yet, these young people and their families – despite enduring some of the most difficult moments of their lives – continue to show up, engage, and have challenging conversations with me and the team. They do this because they know it’s what’s best for them and their families.”
Her deep respect for the resilience of her patients fuels Dr. Amiruddin’s belief in the importance of expanding adolescent and young adult palliative care. “We need more people to come together to address this unique area of need,” she says.
She is also a passionate advocate for specialised training in this field, stressing that “In an ideal world, there would be greater recognition of how essential this training is. The needs of young adults are so specific, and it’s crucial for psychologists in palliative care to understand that.”
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