Some moments shift your perspective in ways you never saw coming. For those who step into the world of adolescent and young adult palliative care, these moments define the work and reshape the way they see medicine, patients, and life itself.

Joey Chan knows this firsthand. As the senior pharmacist at the Adolescent and Young Adult Hospice (AYAH) in Manly—the only facility of its kind in Australia—she is pioneering a role that didn’t exist before. With 20 years of experience as a pharmacist, she transitioned from acute medication and adult palliative care into the adolescent and young adult space when the hospice opened in 2023. It was a shift that not only changed how she approaches medication management but also how she sees the role of a pharmacist in a patient’s life.

“There wasn’t a specialty that really stood out to me until my dad was diagnosed with cancer,” Joey explains. “That’s when I realised how valuable a pharmacist’s role is in palliative care.” Initially focused on adults, she embraced the opportunity to work with adolescents and young adults (AYA), knowing it would be a new challenge. “It’s different from anything I’d done before, and I fell in love with it. This is where I plan to be forever.”

The AYAH supports young adults with complex medical needs, providing symptom management, step down from acute care, respite, and end-of-life care in a setting designed specifically for them. Without this dedicated service, many young people would have to navigate an adult palliative care system that may not fully meet their needs.

Beyond the Prescription

Joey’s role is more than ensuring safe and effective medication management. It’s about connection. “I do so much more than just being a pharmacist. I make pizzas with patients, decorate cupcakes with them, and sit down to play board games.” These interactions don’t just bring joy; they help build trust, making it easier to tailor a patient’s care and navigate difficult conversations when needed.

“When I tell people I work in adolescent and young adult palliative care, they often say, ‘Oh, that must be so depressing.’ But the truth is, there are more moments of joy than hardship,” she says. “We focus on making difficult situations more manageable and meaningful, especially for those in respite care. Our goal at AYAH is to help people live as fully and comfortably as possible, no matter what stage they’re in.”

This human side of care is essential in palliative settings, where relationships extend beyond the patient to their families. “Here, you’re supporting not just the patient but their whole family,” Joey explains. “It’s incredibly rewarding to know that your role is truly valued.”

A Different Approach to Medication Management

One of the biggest adjustments in transitioning to AYA palliative care has been rethinking symptom management. In adult palliative care, around 80% of patients have an oncological diagnosis. In adolescent and young adult care, only about 11% do. Instead, many patients have chronic, complex conditions such as neurodegenerative diseases or congenital disorders.

Seizures, for example, are one of the most common conditions Joey manages. Nearly 44% of her patients experience seizures despite being on multiple anti-seizure medications. “We have patients who still experience numerous seizures a day despite being on several medications,” she says. Managing these requires constant assessment and adaptation, considering drug interactions, safe dosages, and alternative formulations.

“Many of these diseases I’d never even heard of before starting here,” Joey admits. “I’m always researching, always learning.”

Drug administration presents another challenge. Many patients rely on enteral feeding tubes, requiring careful selection of medications that can be crushed, dissolved, and administered safely. “I need to ensure that medications are not only effective but also safe for caregivers and nurses to handle,” she explains. Some medications can be hazardous to those administering them, requiring additional precautions.

Additionally, young palliative patients vary significantly in size and metabolism. Joey recalls working with a young adult who weighed just 13 kilos due to a rare genetic condition. “Even though they are a teenager, their body is more like a child’s, so we have to adjust dosages accordingly.”

Listening Beyond Words

In AYA palliative care, listening extends beyond verbal communication. Many patients have significant cognitive impairments, making it difficult for them to express discomfort. Joey has learned to rely on subtle cues—facial expressions, body language, and positioning—as indicators of wellbeing.

Families play a crucial role in this. “Parents and caregivers know their children best. They can tell when something is wrong, even if the patient can’t say it,” Joey explains. Working closely with families ensures that care is responsive and truly patient-centred.

Advocating for AYA Palliative Care

Despite its importance, AYA palliative care is still an emerging field in Australia. Increasing awareness and developing tailored resources is essential to ensuring young patients receive the support they need. Joey is passionate about bridging this gap, working on initiatives like adapting paediatric and adult consumer medicine information leaflets for the AYA space. These aim to improve health literacy, helping young patients and their families better understand their medications and treatment options.

Looking ahead, Joey hopes to see greater recognition of AYA palliative care within Australia’s healthcare system. Facilities like the Adolescent and Young Adult Hospice in Manly serve as models for what’s possible, says Joey. Holistic, patient-centred care in a dedicated facility where the focus is more than just medical treatment—a space where patients truly live.