Sometimes a conversation feels awful. We may upset or even anger patients and their families. A healthcare professional may leave the room feeling sad, uncomfortable or uncertain and replaying every word they said.

That does not necessarily mean they have done a bad job.

When the subject is a child's deterioration or possible death, distress is entirely normal, and often reflects that the message has in fact been understood.

The purpose is not to remove every difficult emotion, but to communicate honestly and compassionately, helping families feel heard and prepared.

Yet many healthcare professionals worry about these conversations. What if I say the wrong thing? What if I do not know the answer? Am I the right person to be having this discussion?

The cost of avoiding the conversation

Professionals may hesitate, or even avoid these discussions entirely, because they fear upsetting a family or taking away hope. But evidence, including NICE guidance, shows children, young people and their carers want to be fully informed and do not want professionals to avoid conversations about the future.

They want professionals to understand their child, their thoughts, hopes and fears, the day-to-day demands of family life and the importance of their values, culture and beliefs.

Some families will not want to explore these issues in as much detail as others, and some may not feel ready to have the conversation at that time. That should always be respected, but it is not a reason to avoid raising the subject altogether.

We must remember the benefits of these discussions far outweigh the professional discomfort involved in having them. Talking allows families and professionals to understand what everyone most hopes for and most fears, and to consider realistic, meaningful and achievable choices. The alternative may be making decisions for the first time during an emergency, when emotions are high and the professionals involved may not know the child.

The choice is rarely between having a difficult conversation and avoiding difficulty altogether. It is often between talking carefully now and making far harder decisions later.

An invitation to talk

Advance care planning is a good example. An advance care plan is sometimes misunderstood as a form about resuscitation or a single decision made at the end of a child's life.

In reality, it is a collaborative, dynamic process rather than a single event. It involves a series of honest conversations about the priorities and goals of care for a baby, child or young person with a life-threatening or life-shortening condition.

Advance care plans are invitations to talk.

The plan is primarily for the family's benefit, although it is extremely helpful for professionals too. It can act like having the clinician who knows the child best at the bedside, wherever that child happens to be.

These discussions should not be left until a crisis. They may begin after diagnosis, following a change in the child's condition or when a palliative care team becomes involved.

Communication is a clinical skill

There is no perfect script for these conversations, but there are skills we can teach and practice.

We need to prepare properly, find an appropriate space and consider who should be present. We should check what the family already understands and, depending on the situation, whether there are particular issues they would like to discuss.

Both our verbal and non-verbal skills matter. Clear, short sentences and non-medical language are usually more helpful than jargon. It's also important to recognise the impact of tone, pace, posture and eye contact.

Communication is not only about imparting information. Listening and observing matter just as much as speaking - often more so.

We should not be afraid of silence. Families may need time to gather their thoughts, process information and form the questions they want to ask.

Finally, we should summarise what we have heard, check our understanding and ask whether we have missed anything. These are not optional interpersonal extras - they are central clinical skills.

Confidence, not perfection

Training cannot make these conversations easy, nor should that be its aim. It can, however, help professionals feel confident enough to begin them, to listen and to admit when they do not know.

Simulation provides a safe environment in which people can practice introducing difficult subjects, respond to emotion and explore how an advance care plan applies in different situations. The debrief is often even more valuable than the scenario itself, creating space for shared learning and questions professionals may never previously have had the chance to ask.

Confidence does not come from memorising the perfect phrase or hoping the first conversation goes well. It grows through practice, reflection and honest discussion.

We cannot train the sadness out of these conversations, but we can prepare healthcare professionals to enter them with honesty, humility and compassion.

Families should not be left without important conversations because we were too afraid to begin them.

On Tuesday 15 September, Martin House is hosting its inaugural conference dedicated to paediatric palliative care, including practical simulation training workshops. For more information and ticket details, visit: https://www.eventbrite.co.uk/e/martin-house-childrens-hospice-conference-2026-inspiring-excellence-tickets-1994228719784?aff=oddtdtcreator&keep_tld=true 

For further information about Martin House Children's Hospice and how to support it, visit: https://www.martinhouse.org.uk/