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Paediatric end-of-life care - symptoms and problems: parent assessment
Camilla Lykke1,2, Ola Ekholm3, Marianne Olsen4
1Department of Oncology, Rigshospitalet, Copenhagen, Denmark camilla.charlotte.lykke@regionh.dk.
Insights
Parents reported significant symptoms and problems in children with life-limiting diagnoses during end-of-life care. Systematic screening for symptoms and problems is recommended for pediatric palliative care.
Area of Science:
- Pediatric Palliative Care
- Childhood Life-Limiting Illness
- Symptom Management in Children
Background:
- Symptoms and problems (S&P) are frequently under-reported in children receiving end-of-life care.
- Understanding these S&P is crucial for developing targeted interventions.
Purpose of the Study:
- To examine the symptoms and problems experienced by children with life-limiting diagnoses during end-of-life care, as reported by their parents.
Main Methods:
- A questionnaire was administered to parents who lost a child under 18 years due to a life-limiting diagnosis in Denmark (2012-2014).
- Parental assessments focused on S&P in the last month of life for children aged 3-18 years.
- Descriptive statistics were used to analyze the data.
Main Results:
- Physical fatigue, sleepiness, poor appetite, pain, and nausea were the most frequent symptoms reported.
- While many parents felt pain was adequately managed and healthcare services were responsive, a significant portion reported service "mess-ups" and children experiencing fear of death.
Conclusions:
- Children with life-limiting diagnoses experience a high burden of symptoms and problems during end-of-life care.
- Systematic screening for symptoms and problems in this population should be considered to improve care.
Objective:
Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care.
Methods:
All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics.
Results:
Children ≥3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death.
Conclusion:
According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered.
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