How to talk about death and dying

It can help to consider: 

• Are you up to date with the child’s medical and emotional situation?
• What has already been explained to the child and family?
• How does the family prefer to communicate with their child?
• Are there recent or upcoming decisions from the clinical team or family?

Supportive practice includes:

• Having a named nurse
• Clear, detailed handovers
• Checking in with the child’s nurse before your visit

The multi-disciplinary team (MDT) supports families through conversations, home or hospital visits, and written information. Every family approaches this differently.

A Health Play Specialist may help the child express feelings through play or activities, where natural conversations often emerge.

Families vary in how openly they talk about illness and dying. Some discuss wishes and worries clearly. Others avoid the subject. Evidence suggests many children with a terminal prognosis are aware of their situation even if they do not express it.

Children and young people should be given the chance—if they want it—to speak with staff privately. They can also choose whether to attend consultations. Open discussion can give them space to share fears and ask questions.

Some may avoid talking to protect their parents. The MDT works individually with each family to support them in the way they can manage.

Children and families sometimes hint at worries rather than asking directly. Examples include:

“Do you think they will get better?”

“Will he/she be in pain when it happens?”

“Why am I not having chemo anymore?"

Exploring further

You do not need to answer immediately. Gentle questions can clarify what they mean: 

“Is this something you’d like to talk more about?” 

“It sounds like you’re worried about that—is that right?” 

“Tell me a bit more about that.” 

“What are you feeling that made you ask about that?” 

“What would you find helpful?” (This may lead to signposting, e.g. to the Health Play Specialist or Paediatric Oncology Outreach Nurse Specialist.)

Answering questions 

Keep answers clear, simple and honest. 

Examples:

Patient: “Why am I not having chemo anymore?” 
Clinician: “Why do you think that might be?” 
Patient: “The chemo wasn’t working and was making me sick.” 

Patient: “Am I going to get better?” 
Clinician: “We hope so, but we can’t be sure. How have you been feeling about it?” 

Children rarely ask directly, “Am I going to die?” They might instead: 

• Make indirect comments
• Change the subject quickly
• Ask about future events (“Do you think I’ll be well enough to go to…?”)

Examples of real interactions 

Example 1 

Patient: “I hate the view out of my window.” 
Nurse: “Why?” 
Patient: “Because you can see a cemetery… with dead people.” 
Nurse: “Yes, there are.” 
Patient: “Could you get me a drink?” 

Example 2 

Patient: “So the scan isn’t good.” 
Doctor: “The scan isn’t good.” 
Patient: “And the chemo’s not working.” 
Doctor: “No, it’s not.” 
Patient: “And radiotherapy won’t work?” 
Doctor: “I’m afraid not.” 
Doctor: “Would you like to ask anything else?” 
Patient: “No.” 

If death is mentioned, check what the child understands. Reflect back their words and explore gently. If they have asked, they have already been thinking about it. 

Talking about dying can be emotionally challenging. Being honest, when appropriate, is often appreciated by families. 

Some children and young people may never talk about dying. This should be respected. What matters is that they have opportunities to talk if they choose.

Ask simple, open questions, e.g. “How are you feeling today?” 

• Allow silence—this can give space for them to share
• Visit regularly
• Meet with them alone (with parental consent if under 16)
• Use relaxed activities (drawing, games) to encourage natural conversation
• Offer gentle physical reassurance if appropriate (hand or shoulder)
• Avoid dismissive phrases such as “Don’t say that” or “Think positive”
• Know which professionals or services you can refer to
• Encourage memory-making with support from a Health Play Specialist

Open and age-appropriate communication helps siblings feel included and reduces fear. Sharing small pieces of information over time can be more manageable. Letting them know the name of the illness, how serious it is, and what may happen helps them make sense of what they see and feel. It also allows them to contribute and ask their own questions.

During the end-of-life phase, the Hospital MDT, Palliative Care team or local hospice will continue supporting the family and community professionals involved. The Paediatric Oncology Outreach Nurse Specialist or Consultant will explain what to expect at the time of death.

Parents are reassured that there is no need to rush. If their child dies at home or in a hospice, a GP will need to visit to complete the death certificate. Funeral directors can be contacted whenever the family feels ready.