Advantages, Realities, and Barriers of Paediatric Advanced Care Planning; Lessons Learnt from Malta, the UK, and Saudi Arabia

Background: The death of children with life-limiting conditions can often be anticipated, yet end of life decisions often occur in the last few hours of life. Decisions in such challenging circumstances can lead to unnecessary suffering all round.

Aims: We aimed to review the advantages, realities and barriers of paediatric advanced care planning (pACP), finding solutions to the obstacles identified. We compared diverse approaches to pACP in Saudi Arabia, Malta and the UK, learning lessons from each. We discuss four different perspectives in each country: societal attitudes, family and child perspectives, the HCP’s role, and the legal frameworks.

Methodology: A literature review was conducted of Pubmed using the terms: ‘paediatric’ & ‘advanced care plan’ & ‘end of life’ & (i) ‘advantages’, (ii) ‘perspectives’, & “ ‘Malta’ OR ‘Saudi Arabia’ OR ‘United Kingdom’ ” (iii) ‘barriers’. In absence of published evidence, local online libraries or anecdotal evidence from local personal experience was used.

Results: Misconceptions about pACP were common amongst the public and HCPs While families are generally involved in decision-making, some societies are more open to involving the child than others. Doctors may be guided in their decision-making by religious beliefs. pACP policies vary amongst countries. Legal frameworks for pACP exist to varying degrees, though they are absent in Malta. Barriers to pACP include the unpredictability of illness, conflict, sociocultural differences, poor communication, heightened emotions, medico-legal fears and lack of time. These hurdles can be overcome by ensuring open and honest conversation, beginning early and proceeding gradually, focusing on goals, ensuring continuity, nominating a facilitator, and focusing on the child and family.

Conclusion: Various lessons were learnt from comparing three diverse approaches to pACP. Thinking ahead and starting early in the course of illness is critical to good quality pACP.