In the United Kingdom in 2012, over 5000 children under the age of 19 died. This is illustrated per age group in the figure opposite, demonstrating that children under 1 year make up over half of the deaths in the UK for those under 19. Late adolescence (15–19 years old) makes up the second biggest group. There are varying reasons why children die in childhood and while some deaths can be planned with the child and family, other deaths can be very sudden. The nurse plays a key role in caring for the dying child and there are many elements that can contribute to effective support for a child and family.

Communication is an essential component of end-of-life care and the literature frequently highlights the skills required for effective communication. Breaking bad news or having difficult conversations can be hard for all medical professionals but the aim of good communication is to ensure the family and child are continuously involved and understand what is being said to them. Sensitivity and compassion are key to achieving good communication but nurses must be aware of barriers that may arise when delivering end-of-life care. The United Kingdom has a diverse range of religions and cultures. Therefore, an appreciation and understanding of a child and family’s beliefs must be acknowledged early on when planning for end of life. Health care professionals should uphold the wishes and beliefs of the family at all times and open communication will help to achieve this. It is also important to note that there are variations of faith and thus conversations to explore a family’s individual cultural and spiritual needs should take place.

Article 12 of the United Nations Convention on the Rights of the Child requires involvement of the dying child in the decision-making process. Some children may be too young to understand exactly what is happening, however, they will still be able to have a say in their care and literature has demonstrated that children as young as 4 can provide insights into health experiences. With effective communication, nurses can work with parents to establish the best way to involve children in the decision-making process and can be a key advocate for the child and family. Involving children at the end of life can ensure that holistic care takes place and physical, emotional and spiritual needs are met. Some children at the end of life may want to discuss things without their parents present and, where possible, this should be facilitated. Some hospices have programmes to enable this to happen, as well as sibling support services which are also an important part in caring for the whole family.

Symptom management is a large part of end-of-life care, with the main aim being to maintain a quality of life for the child and ensure their comfort. Some of the most commonly reported symptoms at the end of life are highlighted in the figure opposite. An individual symptom management care plan should be written in conjunction with the child and family and this should be regularly evaluated and updated. Depending on the child’s condition, evaluation may take place weekly, daily or even hourly. For example, a child who is still tolerating oral medication may become unconscious and therefore another route of medication may be required. Parents should be given details of who to contact if they are worried/anxious/have any questions or if they feel their child needs further symptom management. In the hospital and hospice setting, a nurse is readily available for parents to consult, in the community setting it is important for parents to have up-to-date contact numbers, including numbers for out of hours service provision. Non-pharmacological methods of symptom management should always be discussed and professionals such as health play specialists or psychologists may be a good resource to support this.

Increasingly children are able to die at home with their family around them. Just because this may be a viable option, however, it should not be assumed that this is what the family wants or would choose. When caring for a dying child, it may be that a child is moved from one setting to another. This can mean that there are many professionals involved in the child’s care, just how many people may be involved in the figure opposite. Communication and joined-up working must therefore be a priority for all professionals and it may be wise to appoint a key professional or service to facilitate a child’s care. It is important to ensure that families have all the information available to them and understand the benefits and disadvantages of each setting. Professionals should also be aware of local policies and procedures to be followed following a child’s death in different settings.