This project received grant funding from the Australian Department of health, Disability and Ageing.

Date last published: July 2025

This clinical guideline is written for health care professionals who provide care to children with life-limiting diagnoses. It is intended to inform clinical practice through concise best practice advice. Please contact your Paediatric Palliative Care Service for further advice.

This guideline has been adapted with approval from the PSNZ New Zealand Paediatric Palliative Care Clinical Network Clinical Guidelines.

Definition

Significant news about end of life is information which seriously impacts the family/child’s understanding of their future. It is shared with the family and, where appropriate, the child, to support them to explore care options and make decisions with the care team.

In this clinical guideline the word “child” is used for brevity but refers to neonate, baby, child and/or adolescent. There are developmentally appropriate considerations for each. The word “parent” is used interchangeably to represent the legal guardian of the child.

Be SURE you practice these key actions;

	Seek the voice of the child
	Understand the family’s current goals of care and expectations
	Recognise parent/carer role and expertise about their child
	Explore shared decision making and care partnership

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Goals (Including where appropriate for the child)

• Families understand the significant news.
• Significant news is shared with compassion, in alignment with the family.
• Health Care Professionals are prepared and supported.

Practice Principles ^1-11

• Parents are encouraged to express values and beliefs in the decision-making process.
• Children are involved in discussions at their level of capacity and within family beliefs.
• Families have a right to respectful, accurate, honest and compassionate information about their child’s condition.
• Ensure understanding and tailored support of cultural and social diversity.
• Sensitive conversations hold a sacred value requiring respect for their significance and memory for each family.
• Good communication requires a sensitive interdisciplinary approach with two-way openness between the family and team.
• Health Care Professionals need to be prepared for their role in these important conversations, and to be supported in what can be a stressful undertaking.

Who should be involved in the discussion? ^{1, 2, 3, 5, 10}

The meeting at which significant news is shared should include:

• Parents, and where it is appropriate, the child (ensure conscious decision to involve child or not, and respect rights of the consenting adolescent)
• Members of the family and support people as identified by the family
• Interpreter as required.
• Interdisciplinary members of the primary clinical teams, determine carefully for minimal numbers.

Preparing the setting ^1-12

• Plan to hold the meeting in a quiet and private space (at home or in the hospital), without interruptions.
• Plan what you are going to say and which roles team members present hold in a pre-meeting (“Huddle”), including who is going to provide follow-up.
• Warn the family that a serious discussion is proposed.
• Assess cultural and language needs- book and prepare interpreter as needed.
• If using virtual technology; ensure technology and setting at each end is tested and optimised and a back-up device is available. Centre camera for the best eye contact.

Delivering significant news ^1-12

• Introduce all participants in the meeting and their roles.
• Explore with family their understanding of the child’s clinical course.
• Use the child’s name. If children are present, use developmentally appropriate language and involvement.
• Warn that the news you have is difficult.
• Pause, giving family a moment to prepare.
• Simply and clearly, give the information, use sensitive terminology.
• Pause and await response, pace conversation to family responses and needs.
• Acknowledge and clarify the observed responses (Ask-Tell-Ask technique, N.U.R.S.E)
• Check-in; ensure that everyone present understands what has been said.
• Provide multiple opportunities for questions and respond honestly.
• Prepare for the unknown and sit with this, acknowledge uncertainties.
• Restate information as required.
• Focus on the views and feelings of the family, listen carefully.
• If using virtual technology take time to ask more about responses to information.

After the conversation ^1-12

• Allocate team member to continue support for family as required.
• Ensure that a follow-up plan is known to the family.
• Ensure the clinician initiates a follow up contact with the family to assess understanding, providing ongoing support and address any emerging questions or concerns.
• Support/ debrief interpreter.
• Debrief with health care professionals; what is understood, what went well, what could improve, follow-up, collegial support.
• Ensure that the discussion is well documented and shared appropriately across care teams.
• Plan and follow through with the information from the conversation.

An example of a Communication Tool ¹²

SPIKES Protocol

	Setting; prepare ahead for privacy and comfort, ensure significant others are involved, prepare clinical team to understand news and their roles, assess cultural and language requirements.
	Perception: use open ended questions to work out what the patient/family understand.
	Invitation; find out how much detailed information the family want to know, invite knowledge sharing.
	Knowledge; give information in ways which help the family to process, use warning sentences, be direct in a kind way with short sentences and checking periodically for understanding.
	Emotion: respect the family’s emotions with empathic responses, express and check-in with what you think you are observing.
	Summary; present options and check these with the conversation and the family’s knowledge, expectations and hopes. Provide a clear plan.

The SPIKES Protocol has been reproduced from Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. The oncologist. 2000 Aug 1;5(4):302-11.

The Perinatal environment ^{6, 11}

• Information in this context may be about an unborn child- ensure that the mother is well supported and that options are well prepared for by the team.
• With permission, call unborn child by name or “baby”.

Considerations for Children ^{1, 2, 3}

• The starting point with children is to listen to them, build trust and understanding.
• Children can often understand and are more aware than they express.
• Children may need to communicate through a range of tools such as play or story telling.
• Some children (and adolescents) may be users of Augmentative and Alternative Communication (AAC) such as-body movement, communication book, sign and gesture, computer or device- these need to be understood and supported in discussions.

Considerations for Adolescents ^1,2

• Adolescents are likely to want to contribute to these discussions and should be offered choices about their involvement.
• Consider who on the health care team has the best rapport with the young person and support them to be present.
• Actively support the adolescent to express their responses and preferences.