End-of-life care in paediatrics
This article aims to provide information on end-of-life care in paediatrics, including the signs that death is imminent, how to manage the care of a dying child or young person and support their family, and how to care for the patient after death.
Article by Leah Rosengarten and Elizabeth Carr
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Purpose
Caring for a child or young person at the end of their life is one of the most emotionally challenging and traumatic experiences in practice (Maunder, 2006). This role can instil ‘tremendous anxiety’ in health professionals caring for a child or young person in these circumstances (Together for Short Lives, 2022). A lack of education and knowledge on end-of-life care, including symptom management and identifying when death was imminent can be one of the key barriers in managing the end of life (McCourt et al, 2013). This article aims to provide a point of reference for nurses, to help increase confidence when providing end-of-life care for a child or young person.
National Institute for Health and Care Excellence (NICE, 2019) guidance defines the end of life as the period of time when a child or young person is expected or likely to die—this may be within the next few hours
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Assessment
Signs that the end of life is approaching
It is impossible to know exactly when a child will die and this is often a source of great upset for those around them. However, there are some signs and changes that nurses can observe.
| Table 1. Signs, symptoms and treatment options at the end of life | ||
| Sign | Symptoms | Treatment |
|
Change of breathing pattern |
Difficulty breathing Coughing or coughing up blood Retaining secretions Noisy breathing, ‘rattling’ Increased anxiety |
Repositioning Medication such as hyoscine hydrobromide, subcutaneous diamorphine or midazolam, buccal midazolam Oxygen Reassurance |
|
Impaired peripheral perfusion |
Hands, feet and limbs may get cold Changes in skin colour/pallor Increased sweating |
Keep the child or young person warm and comfortable |
|
Reduced oral intake |
Reduced interest in, or inability to tolerate, food or drink Signs of dehydration such as dizziness |
Sips of water, moist mouth swabs Anti-sickness medication Intravenous fluids/nutrition (in certain situations) Pain relief |
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Procedure
Support throughout end-of-life care
It is important that health professionals providing end-of-life care for children or young people are aware that discussing the advance care plan can be distressing for children and young people and they may be reluctant to think about end of life, have difficulties discussing it or have differences of opinion about the care plan (NICE, 2019).
Research into parents’ priorities for end-of-life care has highlighted that they wish to have their faith respected, receive honest and complete information, have access to health professionals when needed, have well-planned care that is communicated clearly, have the integrity of the parent-child relationship preserved and witness emotional expression and support by staff (Meyer et al, 2006).
Lastly, it is widely identified that providing end-of-life care for children and young people is an emotionally difficulty process for health professionals. All staff involved need support to reflect on this process and organisations should
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NMC proficiencies
Nursing and Midwifery Council: standards of proficiency for registered nurses
Part 2: Procedures for the planning, provision and management of person-centred nursing care
10. Use evidence-based, best practice approaches for meeting needs for care and support at the end of life, accurately assessing the person’s capacity for independence and selfcare and initiating appropriate interventions
10.1 observe, and assess the need for intervention for people, families and carers, identify, assess and respond appropriately to uncontrolled symptoms and signs of distress including pain, nausea, thirst, constipation, restlessness, agitation, anxiety and depression
10.6 provide care for the deceased person and the bereaved respecting cultural requirements and protocols.
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Resources
Further reading
National Institute for Health and Care Excellence. End of life care for infants, children and young people with life-limiting conditions: planning and management. 2019. https://www.nice.org.uk/guidance/NG61/ (accessed 11 January 2024)
Royal College of Nursing. RCN competencies: caring for infants, children and young people requiring palliative care. 2021. https://www.rcn.org.uk/professional-development/publications/pub-007033 (accessed 11 January 2024)
Together for Short Lives. We support seriously ill children and their families. 2024. https://www.togetherforshortlives.org.uk/ (accessed 11 January 2024)
Child and Young Person's Advance Care Plan Collaborative. Child and young person's advance care plan. 2018. http://cypacp.uk/wp-content/uploads/2020/03/CYPACP-Respect-form-v4.pdf (accessed 11 January 2024)
Support for families
- Child Bereavement UK. Family bereavement support: https://www.childbereavementuk.org
- Cancer-related bereavement support resources: https://www.younglivesvscancer.org.uk/life-with-cancer/my-child-has-cancer/when-your-child-wont-get-better/grief-and-bereavement/bereavement-resources-and-organisations/
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