This information is a general introduction to symptom management in paediatric palliative care. It is intended to improve knowledge by developing an awareness of symptoms that children may experience with palliative care needs. If you require additional information or advice about symptom management please contact the Specialist NSW Paediatric Palliative Care Service providing support for your area.
Children with a life limiting illness may experience distressing symptoms not just at the end of life but throughout the course of their illness (Shaw, 2012). Appropriate, proficient and timely management of symptoms is critical for the child and their family. Due to the multidimensional nature of many symptoms an interdisciplinary approach is essential and children and their families will need access to 24 hour medical advice.
Some of the common symptoms experienced include; pain, dyspnoea, fatigue, constipation, nausea and vomiting, excess airway secretions, dysphagia, anorexia, agitation and irritability, psychological distress, skin changes and seizures. Despite the wide variety and rarity of paediatric conditions there are common symptom pathways and it is often possible to anticipate changes that may occur (Himelstein, 2005). For example it may be anticipated that children with a neurodegenerative disorder may suffer from sleep disturbance, seizures, pain (related to spasticity, contractures and reflux), irritability, anxiety, dyspnea and constipation. Being proactive in addressing these complex symptom issues is part of effective paediatric palliative medicine (Himelstein, 2005). Children and their families will benefit from being prepared and educated about potential symptoms before they occur.
It is important to understand that each child and their family needs an individual approach tailored to their unique needs and circumstances. When partnering with a child and their family it is essential to establish clear goals of care. Partnering with a child and their family allows them to retain some control and therapy should focus on improving function and decreasing suffering where possible. To provide prompt and effective symptom management plan ahead to ensure access to medications and that caregivers will be able to administer appropriately. Support and advice will need to be provided regardless of the location of care. Families may benefit from having a written plan.
Emotional, spiritual and social suffering can also be significant confounders in the experience of symptoms. Children do not separate the physical and emotional nature of suffering so it is important to remember this when assessing and developing a plan for symptom management. Assessment and communication needs to be developmentally appropriate for the child.
The perception of suffering as a result of symptoms is individual to each child and family. However, the need for effective symptom management is clear. Good pain and symptom management especially at the end of life can improve the quality of their remaining life and have a lasting positive effect on the family; failure to achieve this is associated with complicated grief and bereavement (Shaw, 2012).
- EAPC Taskforce steering group (2007). IMPaCCT: standards for paediatric palliative care in Europe. European Journal of Palliative Care 14(3), p.p109-114.
- Himelstein, B.P (2005). Palliative Care in Pediatrics. Anesthesiology Clinics of North America 23, p.p 837-856.
- Shaw, T.M (2012). Pediatric Palliative Pain and Symptom Management. Pediatric Annals 41(8), p.p329-334.