Communicating with families of a child with a life-limiting illness
Building rapport with a family in the early stages of care is crucial for effective ongoing support; part of this process is to understand and acknowledge the unique needs of each familyFeudtner, 2007.
Early involvement of a specialist palliative care team can be helpful to assist with communication; they can provide guidance to parents on how to talk to their child about death and dying, help the family understand what to expect in the last days of the child’s life, and facilitate sibling support.
Guidance for communicating with families in paediatric palliative care is provided in Guidance for communication in a paediatric palliative care family meeting or consultation. For more information about family meetings, see Family meetings in palliative care. For information about breaking bad news and discussing prognosis, see Breaking bad news in palliative care and Discussing prognosis in palliative care. For information about providing culturally responsive care for families, see Cultural considerations in palliative care.
Preparation
- Obtain permission from the parents (or adolescent) to have the meeting and to share their personal information in the meeting.
- If possible, have more than one healthcare professional present, preferably from different disciplines (eg doctor, nurse, social worker). One healthcare professional usually communicates information, while the other can observe nonverbal cues and emotions. If possible, ensure they are trusted by and well known to the family.
- Ensure that family members are not outnumbered by healthcare professionals, and that they have a support person if they would like one.
- Ensure the setting is private and comfortable for everyone.
- Discuss in advance which children will be present at the family meeting. Adolescent patients may choose to be part of family meetings, but younger children are generally not involved. Ensure children and siblings who are not participating can be cared for away from the discussion. Offer the opportunity for older siblings to be involved in discussions if appropriate.
Discussion
- Give the family time to raise their concerns and questions, preferably as early as possible in the meeting. If possible, allow silence to occur, so family members can ask their own questions.
- Obtain permission from the family before broaching a difficult subject.
- Acknowledge and validate strong emotional reactions that family members may have (eg ‘I can see this is really upsetting you’, ‘Any family receiving this news would be devastated’).
- If the child is not in the meeting, discuss with the parents how best to communicate information about prognosis and treatment to their child.
- Formulate a plan for next steps at the end of the meeting.
After the consultation or meeting
- Keep in contact with the family so they can clarify issues and do not feel abandoned.
- Debrief with a colleague.
A family centred approach means that healthcare professionals should empower each family to provide the best care and support for their child, including facilitating communication between parents and their children.
Acknowledge that parents are the experts on how best to communicate with their children. They should be encouraged to give honest, age-appropriate information to their child, but ultimately, it is the parents’ choice to decide what to discuss with their children, and when to have these discussions. This can become more difficult as the child develops increasing understanding and independence from their parents.
If parents do not want their child to have access to information, several options are available. Explain to parents that children nearly always have an understanding of their illness, and are sensitive to nonverbal cues that suggest healthcare professionals and parents are distressed or concealing information. A child may feel anxious and lonely if the truth is withheld from them. It may also be helpful to explain that families who have adopted a truthful, compassionate and age-appropriate way of communicating with their child about illness and dying often have fewer regrets about this after their child has died.
For parents who find open communication too difficult, or when the opportunity for a conversation with the child has not arisen, another helpful approach is to focus on how parents might respond if the child asks a question about their illness. Reassure parents that they will often intuitively know the right thing to say. Strategies parents can use to respond to questions include:
- validating the question (eg ‘That is a very important question to ask.’)
- finding out what the child already knows or understands (eg ‘What do you think?’ or ‘Why did you ask that question?’).
For some families, it can be helpful to identify a trusted relative or carer who can talk openly about difficult issues with the child, while allowing the family to maintain patterns of communication they are able to cope with. Some children, especially adolescents, choose to discuss these issues with a friend or healthcare provider as they do not want to cause distress to their parents.
Regardless of how parents decide to communicate with their children, it is important that this issue does not become a source of disagreement and conflict between the family and the healthcare team. With time and support, many parents will communicate honestly and sensitively with their child as the child’s condition progresses.