Symptom assessment in paediatric palliative care

Publicado 19 diciembre, 2023

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Clinical Practice Guideline on Palliative Care in Paediatrics

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Introduction Pharmacological treatment of moderate to severe pain in paediatric palliative care Palliative chemotherapy and radiotherapy Child participation in decision-making and end-of-life care Communication with the patient and family The preferred location for end-of-life care Symptom assessment in paediatric palliative care

Question

How can we assess which physical and/or emotional symptoms cause the most distress to the PPC patient? Which are perceived as the most distressing by the patient and their family or carers?

Recommendations

The assessment of both physical and psychological symptoms of the PPC patient must be multidisciplinary, individualised, adapted to the child or adolescent and their family, and ongoing over time.
The identification and management of both the physical and psychological symptoms of the PPC patient should preferably be carried out by professionals specialised in paediatric palliative care, especially in patients in the last days of life.
Professionals should be aware of the physical and psychological symptoms experienced by the PPC patient and their families. A deliberate and continuous search for all symptoms is suggested, through targeted questions about what worries or bothers the patient, in addition to the physical examination, in order to facilitate a comprehensive assessment.
The identification of symptoms experienced by patients with communication difficulties should be carried out by trained personnel, using adapted rating scales and taking into account the changes perceived by the primary carer concerning the patient’s baseline situation.
Healthcare professionals should inform the PPC patient and family in advance about the physical and psychological symptoms that may appear at the end of life, in particular the signs and symptoms associated with dying.
Parents should be instructed in the use of effective comfort measures to alleviate or mitigate the child’s distress at the end of life, such as using a sponge to moisten the mouth, anatomical positions, blankets for warmth, or having favourite toys or objects nearby.

Rationale

The CDG has decided to formulate a set of general practical considerations because it has not found scientific evidence that directly answers the research question. It has also considered scientific evidence from studies of how patients and their relatives perceive symptoms at the end of life.

Complete clinical question

Full information on this question (available in Spanish), see:
http://portal.guiasalud.es/guia-en-capas/cuidados-paliativos-pediatria/#question-6

References

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