End of life care for infants, children and young people with life-limiting conditions NG61 NICE Guidance - a summary

Currently, there are estimated to be 50,000 children and young people aged 18 or younger living in the UK with a life-limiting condition that may require palliative care.

Each year, 5,000 children die in England and Wales. A half of these are as the result of a life-limiting or life-threatening condition.

​A life-limiting condition is expected to result in an early death, either for everyone with the same condition or for a specific person, for example, if treatment with a curative intention has not succeeded.

Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer.

​Paediatric palliative care
Focuses on the improvement of quality of life for the infant, child or young person. It includes the support of family members or carers, as well as the management of symptoms and respite care. A vital component is the end of life journey, which includes death of the child and bereavement of family members in the aftermath.
Palliative care in some life-limited children can potentially last many years and even into adulthood, however, in children with cancer that cannot be cured, this journey may well be far shorter.
According to NICE, end of life care includes ‘The care and support given in the final days, weeks and months of life, and the planning and preparation for this’.

NICE guidance
These are the first clinical guidelines that NICE has written on palliative care in children. They aim to involve professionals, the children or young people and their families in decisions made about their care, where appropriate. All life-limited children, infants and neonates of 17 years of age and younger are included in this guideline.
All children with a life-limiting condition (including cancer) should have a named medical specialist or palliative care consultant who leads and coordinates their care.
The role the GP plays for life-limited children in terms of palliative and end of life care may vary greatly dependent on region, other services involved and the prior relationship of the GP with the family.

Advance care plans
All children and young people with life-limiting conditions should have an advance care plan in their medical record – not to be confused with a do not attempt resuscitation order.
Ideally, these should be drawn up as part of a multidisciplinary team including a paediatric palliative care consultant, a palliative care paediatric nurse, a pharmacist and experts in child and family support who have experience in end of life care (often hospice support staff), and the child’s GP may be involved as well.
In addition, not all regions have easy access to this degree of care, and some may need GP assistance.

​Resuscitation for children and young people with life-limiting conditions should be attempted unless there is a do not attempt resuscitation order in place.

What should an advanced care plan include?

  • Up-to-date contact, demographic information​
  • List of professionals involved in care, and the responsible person for giving consent

  • Life-limiting condition short summary

  • Social factors, religious beliefs and wishes of the child or young person and their carers

  • A record of significant discussions

  • Agreed treatment plans, management of life-threatening events

  • Plans for resuscitation or life support

  • End of life care (this needs to be discussed at an appropriate stage for the child)

    • Preferred place of care and death and specific wishes

    • Organ or tissue donation wishes

  • Distribution list for advanced care plan

​The advance care plan needs to be reviewed regularly and kept up to date, in a similar way to the adult palliative care register in General Practice.

Who should see a care plan?
Care plans should be accessible to all who may need them including the GP, hospital consultant, hospice, respite, nursing services, educational and care services, and out of hours and emergency care services if necessary. In addition, care plans should be accessible to the family and child as appropriate. 
When suitable, end of life care should be discussed in more detail often before the child transitions to end of life care. In children with cancer, at times this transition may happen quite quickly, so people need to be aware.
In an end of life care plan, the preferred place of care and death of the child or young person should be discussed, along with the practicalities of how this can be done.

​End of life care
NICE guidance suggests the involvement of the specialist paediatric palliative care team if a child or young person has unresolved or distressing symptoms as they approach the end of life. For children with cancer, this team may include their oncologist rather than a palliative care consultant. Often, their oncology team may be their main provider of specialist care even towards the end of life.
Symptom management in children is approached in a similar way to adults, in a stepwise manner, being aware that the child or young person may not be able to communicate their needs effectively and clinicians and carers need to assess whether they think the child is in pain.
Medication doses need to be calculated using the body weight of the child instead of age-weight estimates, which may differ markedly from age - weight averages.

Pain needs to be managed in a simple stepwise approach making sure to rule out conditions such as constipation or infection that may be aggravating pain. In addition, environmental stressors or anxiety that may be compounding the pain as well need to be addressed. Use the minimal effective dose that relieves and prevents pain, and titrate with breakthrough pain relief as well as background coverage.

Stepwise approach to managing pain:

  • ​Paracetamol and/or ibuprofen​​​
  • Low-dose oral opioids such as morphine
  • Transmucosal opioids
  • Subcutaneous opioids
  • Intravenous opioids if a child has a central venous catheter already in situ
  • If neuropathic pain is suspected, consider trials of gabapentin or low-dose tricyclic antidepressants and seek specialist advice if not already sought as ketamine or methadone may be required.

Rule out a correctable cause first such as urinary retention or pain. Manage agitation through correcting the cause if possible, environmental changes (such as a calming environment) and pharmacological methods including benzodiazepines such as midazolam and diazepam or neuroleptics such as haloperidol or levomepromazine.

Respiratory distress
Pay attention to discussing worries and concerns and provide anxiolytic agents if needed. Treat physical discomfort and excess airway secretions if causing distress. Use oxygen if this makes the child or young person more comfortable.

Managing hydration and nutrition
Encourage oral intake if the child wants to and is still able to eat/drink. Provide lip and mouth care in all cases. Discuss how to manage fluid and nutritional intake with parents and carers and the child or young person if possible as to whether IV or enteral fluids are in their best interests.

Care and support for parents, family and carers
A GP may be more involved after the death of the child if it occurs at home.
​They may certify the death or discuss with parents or carers the practical arrangements after the death of their child. This needs to be provided in writing, and should include involvement of the coroner if needed, care of the child after death, registration of the death and funeral arrangements as needed.​
In the immediate aftermath, there may be a lot of support for bereaved parents from friends and family. However, after the funeral, this tends to dissipate and may be when a GP can be very valuable.

The bereavement support available varies by region, so make sure to check what is available in your area.

Resources for end of life care and bereavement                         Download a printable version