Providing end of life care for children with life limiting conditions

NICE have recently published their guidance for end of life care for infants, children and young people with life-limiting conditions (see footnote 1). The guidance aims to involve children, young people and their families (in so far as appropriate) in decisions about their care, and improve the support that is available to them throughout their lives.

The underlying principle of the guidance is that families with dying children must be central to the care provided, particularly ensuring that they receive the emotional, social and practical support required to care for a child or young person who is reaching the end of their life.

The guidance is aimed at all providers of paediatric palliative and end of life care, as well as children and young people with life-limiting conditions and their parents and carers.

Developing Advance Care Plans

An Advance Care Plan should be developed for all children and young people with life-limiting conditions, as a core element of their palliative care. This is a formal care plan which includes details about the child or young person's condition. It should also record decisions which are made with them and their parents or carers, and their wishes and ambitions. All children and young people with life-limiting conditions should have an Advance Care Plan in their medical records.

The Advance Care Plan should be developed at an appropriate time for the current and future care of each child or young person. It should take account of the beliefs or values or the child or young person and should include (amongst others):

• A statement about who has responsibility for giving consent;
• A summary of the life-limiting condition;
• An agreed approach to communicating with and providing information to the child or young person and their parents or carers;
• An outline of the child or young person's life ambitions and wishes;
• A record of significant discussions with the child or young person and their parents or carers;
• Agreed treatment plans and objectives;
• A record of any discussions and decisions that have taken place on:
  • Preferred place of care and place of death;
  • Management of life-threatening events, including plans for resuscitation or life support.

Advance Care Plans should be regularly reviewed and developed with the relevant members of the multidisciplinary team, and in discussion with the child or young person and their parents or carers.  It should be updated if, for example, new professionals become involved, or if the child or young person moves home.

The Advance Care Plan should be shared with the child or young person (if appropriate to do so) and their parents or carers, as well as other professionals and services involved in their care (for example, GPs, hospices, schools etc.). Every time the Advance Care Plan is updated it should be shared with the relevant individuals.

Discussions about the Advance Care Plan should be held with the parents during pregnancy if there is an antenatal diagnosis of a life limiting condition.

Providing Support

Children and young people and their parents or carers may need support, and sometimes expert psychological intervention. There should be awareness that the child or young person may experience rapid changes in their condition which may require emergency interventions and urgent access to psychological services. Information should be provided about the emotional and psychological support available and how to access it.

Services should also be aware of the specific emotional and psychological difficulties which may affect children and young people who have learning difficulties or problems with communication.

The religious, spiritual and cultural beliefs and values of children and young people and their parents and carers should be taken account of in all discussions with them, and when making decisions about their care. Children and young people may feel differently to their parents, carers, or healthcare professionals about how their beliefs and values should influence their care.

Providing end of life care

Resuscitation should be attempted for children and young people with life limiting conditions unless there is a do not attempt resuscitation document in place. If there is a possibility of treatment withdrawal the beliefs, values and wishes of the child or young person and their parents or carers should be taken in to account.

The Advance Care Plan should be reviewed when the child or young person approaches the end of their life. Discussions should be held regarding specific support needs for the child or young person and for the parents or carers after their child has passed away.

The child or young person should be asked where they would prefer to be cared for, and where they would prefer to die if it is appropriate to do so. If possible, services should ensure that children and young people can be cared for at their preferred place of care and die at their preferred place of death. If it is suspected that a child or young person may die soon and they are not in their preferred place of death, services should consider whether rapid transfer is possible and in the child's best interests. This should be discussed with them and their parents and carers. Relevant changes should be made to the Advance Care Plan and implemented.

Service delivery

Children and young people with life limiting conditions should be cared for by a defined multidisciplinary team, which should be adjusted accordingly as the child or young person's circumstances change. Children and young people and their parents or carers should be involved in multidisciplinary team meetings where appropriate. Consideration should be given to having a named individual from the multidisciplinary team as a first point of contact for the children or young person and their family.

The specialist paediatric palliative care team should include as a minimum:

• A paediatric palliative care consultant;
• A nurse with expertise in paediatric palliative care;
• A pharmacist with expertise in specialist paediatric palliative care;
• Experts in child and family support who have experience in end of life care.

Ultimately, services will need to communicate well with one another to ensure that there is robust care co-ordination and effective networking, which is essential given the broad range of healthcare and other services which are involved in end of life care for children and young people. As different services will be utilised at different stages of the child or young person's illness, the best care will be received when services communicate with and support each other, as well as the child or young person and their parents or carers.

We have a dedicated children's team at Bevan Brittan LLP who can provide you with specialist and expert advice suited to your individual needs or requirements.

For further information on this article, or any other children's matter, please contact Sumayyah Malna, Solicitor or Deborah Jeremiah, Associate.

Footnote:

A copy of the NICE Guidance in this article can be found at: https://www.nice.org.uk/guidance/ng61