When a child isn’t expected to live, families often rely on medical professionals not just for treatment, but for guidance through unfamiliar and frightening territory.

In these moments, how information is shared, how decisions are supported and how care is delivered can shape a family’s experience in ways that last far beyond the child’s death.

Families consistently tell us that they want honest information as early as possible. While uncertainty is common in paediatric care, delaying or avoiding conversations about prognosis can leave parents unprepared and damage trust later on.

When a child isn’t expected to live, it’s important to be clear about what is known, what is uncertain and what that means in practical terms. Avoid euphemisms that may soften the message but create confusion. Use plain language, explain medical terms as you go and be explicit about what you mean.

The setting and your availability also matter. Wherever possible, choose a quiet, private space. Ensure you aren’t rushed, and give families your full attention. Simple actions such as silencing your phone or sitting at eye level can help parents feel that this conversation matters.

Non-verbal communication is also important. Parents may notice tone, body language or exchanges between staff even more acutely at this time. Being mindful of how you appear as well as what you say can help avoid unnecessary distress.

Even when information is shared clearly, families may struggle to absorb it. Shock can affect concentration and memory, and some parents may appear disengaged or stop asking questions partway through a conversation.

It can help to slow conversations down and break information into smaller parts. Pausing regularly, allowing silence and checking whether parents want you to continue can make discussions feel more manageable. Simple prompts such as – “Would you like me to go over that again?” or “What feels most important to understand right now?” can support understanding without pressure.

Families often need information repeated, sometimes over several conversations. This is a normal response to distress, not a sign that communication has failed. Written summaries or follow-up information can help parents revisit details when they are better able to take them in.

Having another professional present, such as a nurse known to the family or a bereavement support professional, can also provide continuity and support once the conversation ends.

Parents often process information differently, and these differences can exist side by side. One parent may want clear detail straight away, while the other may need information more slowly or in smaller amounts. These differences are normal and may change over time.

Avoid assumptions based on gender, role or outward behaviour. Both parents need clear information and emotional support, even if they express those needs differently. And where possible, ensure that key information is shared directly with both parents. Relying on one parent to pass information on can lead to misunderstanding and additional strain.

Likewise, parents may respond to the news that their child isn’t expected to live in very different ways. Some parents may appear calm or focused, while others are visibly distressed. Anger, disbelief, guilt, fear, numbness and withdrawal are all common.

Rather than trying to resolve emotions, focus on acknowledging them. Remaining calm, listening without interruption and avoiding defensiveness can help contain these moments.

When a child isn’t expected to live, families may face several decisions at once, often while in shock. These decisions may relate to treatment options, palliative care, symptom management and where their child will be cared for or die.

Parents often fear making the ‘wrong’ decision, but clear, realistic guidance from medical professionals can reduce this burden. Explain options using plain language, be honest about what is and isn’t possible, and talk through the practical implications of each choice.

Where possible, allow parents time to think and revisit decisions. Many families need to hear information more than once before they feel able to decide. Reassure parents that decisions can often be reviewed as circumstances change, and that they aren’t expected to have everything resolved immediately.

Families may need information about what will happen after their child’s death, including verification of death, post-mortem discussions, registration of the death and how these processes may affect funeral arrangements or timings. For many parents, this is unfamiliar territory and can add anxiety at an already overwhelming time.

The timing of these conversations matters. Some parents want to understand what will happen as early as possible, while others may not want to hear it at all. It can help to be clear about what needs to be discussed now, what decisions are not urgent and what can be returned to at a later point.

When talking through these processes, use clear, everyday language and avoid medical or legal jargon where possible. Check parents’ understanding as you go, and be prepared to revisit information more than once. Providing a written follow-up or a summary of what’s been discussed can also help families return to the information when they are more able to absorb it.

Cultural, religious and personal beliefs can strongly influence how families understand death, make decisions and approach what happens afterwards. Some families may have specific practices or expectations around end-of-life care, post-mortem examinations, care of the child’s body or funeral arrangements. And others may not wish to discuss these matters in detail at all.

It’s important not to make assumptions, but to ask open, respectful questions and give families the opportunity to share what matters to them. Being curious, flexible and willing to seek guidance when needed can help ensure care is sensitive and appropriate for each family.

You can learn more about culturally sensitive bereavement support here.

Parents remain parents, even when their child is dying. Many want to continue caring for their child, being involved in decisions and spending meaningful time together. Where possible, encourage parental involvement and avoid shielding parents from opportunities they may later value. Some parents may feel unsure about what they are allowed to do or worry about doing the wrong thing, but gentle reassurance can help.

Some families will want to create memories with their child, such as taking photographs or creating keepsakes. Others may not feel able to engage in this at all. What feels right is deeply personal and may change from day to day. The key is to make families aware of the options available to them without pressure or expectation, and to respect their choices either way.

Where siblings are involved, parents may need guidance on how to include them in ways that feel appropriate for the family, and how to talk to them about what is happening. Signposting to age-appropriate information and specialist support can help parents feel more confident supporting their other children during this time.

We’ve shared our guidance for talking to children about sibling death here.

As a child’s condition changes, families’ support needs often change too. What feels manageable one week may feel overwhelming the next, and many parents are unsure what help is available or when it’s appropriate to ask for it.

Medical professionals can support families by clearly explaining what services are available, what they offer and how to access them. This may include bereavement services like The Laura Centre, chaplaincy, community support or follow-up care after the child’s death. Families often benefit from knowing who will remain involved and who they can contact once active care ends.

Clear signposting, written information and agreed follow-up can help reduce the sense of sudden loss of support that some families experience when a child isn’t expected to live.

Caring for children who aren’t expected to live, and supporting their families, can take a cumulative emotional toll. Even when individual cases are managed well, repeated exposure to distress, grief and death can affect wellbeing and decision-making.

Recognising this impact early is important. Accessing peer support, supervision and opportunities to reflect allows professionals to process difficult experiences rather than carry them alone.

Looking after yourself isn’t separate from good care. It’s part of maintaining safe, compassionate practice over time.

The Laura Centre offers bespoke training programmes for professionals working with children and families when a child isn’t expected to live. Training is led by qualified counsellors and tailored to the needs of teams and organisations, supporting confident, compassionate practice in complex situations.

Alongside this, we also provide specialist bereavement counselling and support for parents, children and young people affected by the death of a child, parent or sibling.

To learn more about our training or to signpost support for a family under your care, visit www.thelauracentre.org.uk or call 0116 254 4341.