Children are living longer – is healthcare education keeping up?
Medical advances mean more babies, children and young people with life-shortening conditions are surviving infancy, living through childhood and reaching adolescence or…
Difficult conversations are part of healthcare, but that does not make them easy.
Healthcare professionals may leave a conversation feeling sad, uncomfortable or uncertain, replaying every word they said.
Dr Ross Smith, Consultant in Paediatric Palliative Medicine at Martin House Children’s Hospice and Leeds Teaching Hospitals NHS Trust, explains why distress does not necessarily mean a conversation has gone badly, and why professionals need opportunities to prepare for these moments before they happen in real life.
Ross says healthcare professionals may worry that upsetting a family means they have handled a conversation badly.
“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, held and prepared.”
Many professionals will have learnt about ‘breaking bad news’ during their initial training, but it may be years before they need to draw on it. Others learn by observing more experienced colleagues.
Even specialists can find these conversations difficult.
“That is precisely why we need to prepare people for them.”
Professionals may hesitate to begin conversations about the future because they are worried about upsetting a family or taking away hope.
However, evidence including NICE guidance shows that children, young people and their carers want to be fully informed and do not want professionals to avoid these conversations. Families may want to talk about treatment choices, end-of-life care, care after death, funeral planning or bereavement support.
Others may not feel ready to explore these issues in as much detail. Ross says that readiness should always be respected, but professionals should not assume in advance that a family does not want to talk.
“Families often report feeling anxious beforehand but are relieved once the conversation has taken place. Otherwise, we risk denying them the opportunity to explore their feelings and concerns.”
Having these conversations earlier can also help families and professionals understand what everyone most hopes for and most fears, and consider realistic and meaningful choices before an emergency occurs.
“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.”
Advance care planning is one example of how difficult conversations can help families prepare for the future. An advance care plan can sometimes be misunderstood as simply a form about resuscitation or a 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 conversations about the priorities and goals of care for a baby, child or young person with a life-threatening or life-shortening condition. These may include treatment and emergencies, but can also explore the child and family’s values, beliefs, hopes and goals, as well as the social, educational and spiritual aspects of care.
“Advance care plans are invitations to talk.”
Ross says the plan is primarily for the family’s benefit, while also helping professionals understand what matters if they meet the child during an emergency.
“It can act like having the clinician who knows the child best at the bedside, wherever that child happens to be.”
Advance care planning should not necessarily be left until a crisis. Conversations may begin after diagnosis, following a change in a child’s condition or when a palliative care team becomes involved, and may take place over several meetings.
Preparation cannot remove the distress of difficult situations, but Ross says it can make them more bearable.
There is no perfect script for difficult conversations, but there are skills healthcare professionals can learn and practise.
That starts with preparing properly – finding an appropriate space, considering who should be present and checking what the family already understands.
Clear, short sentences and non-medical language can be more helpful than jargon, while tone, pace, posture and eye contact also matter.
“Communication is not only about imparting information. Listening and observing matter just as much as speaking, often more so.”
Silence is important too. Families may need time to gather their thoughts, process what they have heard and form the questions they want to ask. Ross says professionals should resist the temptation to fill that silence too quickly. Reflection and acknowledgement can also show families that they have been heard.
“Saying, ‘I can see that was difficult to hear,’ or, ‘I can see that was hard to say,’ can create space for families to explain what they need.”
Professionals should also summarise what they have heard, check their understanding and ask whether anything has been missed.
“These are not optional interpersonal extras; they are central clinical skills.”
Training cannot make these conversations easy, but it can help professionals feel confident enough to begin them, listen carefully and admit when they do not know the answer.
Simulation provides a safe environment in which professionals can practice introducing difficult subjects, responding to emotion and exploring how an advance care plan might apply in different situations.
Ross says the discussion afterwards can be just as important as the scenario itself.
“The debrief is often even more valuable than the scenario itself, creating space for shared learning and questions that professionals may never previously have had the chance to ask.”
Confidence does not come from memorising a perfect phrase. “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.”
Martin House is hosting its inaugural conference dedicated to paediatric palliative care on Tuesday 15 September. Find out more and book tickets for the Martin House Children’s Hospice Conference 2026.
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