When a child is given a life-limiting diagnosis, no roadmap feels adequate. But having a plan—for care, for conversations, for legacy—can offer families something to hold onto in the unknown.

Talking to a child about death is never easy. Yet for families navigating a life-limiting diagnosis, these discussions—however painful—are crucial. According to Dr. Anthony Herbert, a paediatric palliative care specialist, it’s not about giving up but ensuring children have the best quality of life for as long as possible.

“One of the hardest things for families is balancing honesty with hope,” says Dr. Herbert. “They want to protect their child, but they also don’t want them to feel alone or scared.”

Finding balance

It’s a delicate balance, shaped by age, emotional maturity, and family dynamics. A toddler might need gentle reassurance, while a teenager may ask existential questions about death and the future.

“The way we talk about death changes depending on the child’s developmental stage,” Dr. Herbert explains. “A toddler might not understand death but feels when people are sad. A teenager may grapple with big questions about life and meaning.”

Children, he adds, are often more aware than we realise. “They sense when something is wrong, even if no one’s said it. Avoiding the conversation can leave them more anxious.”

Parents often feel unsure of how much to share. “Guilt is something we see a lot,” he says. “They worry if they did enough, or if they have made the right choices.” This is where thoughtful planning can make a difference. “There’s no perfect way. Just the best way for that family, in that moment,” he adds.

By having open conversations and making decisions with love and clarity, parents can find some comfort, knowing they’ve created a plan that aligns with their child’s needs and family values.

By contrast, shielding children from the truth can create mutual pretence. “Parents may avoid talking about it to protect their child, but that can lead to isolation when both stay quiet.”

Holding space

Conversations about end-of-life care are rarely a one-time event. “It’s an ongoing dialogue,” says Dr. Herbert. “Building rapport helps create a safe space for families to speak openly, in their own time.”

Pacing is crucial. Dr. Herbert’s team gently invites families to talk when they’re ready: “Would it help to discuss what might happen if your child becomes more unwell?” These invitations allow families to engage at their own pace.

“If a child is old enough to express their wishes, we listen,” he says. “One young person simply wanted to see their dog one last time.”

“Many children also want to leave something behind,” Dr. Herbert adds. “One young person wrote letters for their future nieces and nephews, knowing they wouldn’t be there to meet them. It was their way of staying connected with their family’s future.”

The whole family

Siblings, too, need support. “They might be asking themselves, ‘Will this happen to me too?’ or ‘Will Mum and Dad still have time for me?’” says Anthony. “We use storytelling, drawing, and play to help siblings process what’s going on and find a way to be part of their sibling’s journey.”

Grandparents and extended family members are often grieving too. “They want to help, but they’re also processing their own fears and sorrow. We try to support them so they can, in turn, support the parents and siblings.”

The right support

When it comes to care, there’s no one-size-fits-all approach. Some families feel safest in hospital. Others want their child to be at home, surrounded by familiar faces and places. “Our role is to support them in whatever decision feels right,” Anthony says. “And we remind them—there is no ‘right’ or ‘wrong’ choice.”

Beyond medical care, paediatric palliative care includes emotional, psychological, and spiritual support. Therapies like music, art, and play can give children space to explore their feelings in a way that feels safe.

“A song or a painting can express things that words sometimes can’t,” Anthony says. “It gives them—and their families—a way to connect, remember, and make meaning out of a really painful time.”

For families beginning this journey, Anthony offers gentle reassurance: “It’s okay to feel overwhelmed. No one expects you to have all the answers. Take things one step at a time. Lean on your care team. You are not alone.”

The true meaning of palliative care

Above all, Dr. Herbert wants families to know that paediatric palliative care is about living, not just dying.

“It’s about making sure your child is comfortable, supported, and surrounded by love, for however much time they have,” he says.

“One of the misconceptions about paediatric palliative care is that it’s about giving up. In reality, it’s about giving children the best quality of life for as long as possible.”

Planning for an unknown path

In the face of a life-limiting diagnosis, families are often left grappling with a multitude of questions: What happens next? What should we plan for? How can we make the most of the time we have?

While the answers may not always be clear, paediatric palliative care offers guidance. A space for plans to evolve, focusing on not just medical care but quality of life and emotional wellbeing.

There is no one right way, says Dr. Herbert. The important thing is to begin, however imperfectly, to plan with the child and their needs at the centre.

Planning doesn’t mean having all the answers. “It’s about acknowledging the unknowns, prioritising what truly matters in each moment, and adapting as the journey unfolds,” he adds. The power of these conversations isn’t in certainty, but in making decisions that align with the values, wishes, and emotions of the child and their family.