Background Parents often have to make difficult medical decisions during crises for their children with life limiting conditions. An advance care plan (ACP) allows parents to discuss their children’s preferences and treatment options early. Since September 2015, an ACP programme was launched in KK Women’s and Children’s Hospital. We describe our experience with introducing paediatric ACP in our institution.
Methods From July 2015 to December 2022, 371 children were identified by their primary care team and ACP conversations were conducted by in-house trained facilitators who are healthcare practitioners (HCP) like medical social workers, nurses and doctors.
Results A total of 471 records with 21% of the children being reviewed on their completed documents or re-attempting to engage parents who had previously discontinued/rejected the ACP conversation. of the 471 records, 227 were completed, 5 ongoing, 150 discontinued and 89 rejected discussion. 79% of the completed records are children from neurology, neonatology, haemato-oncology and cardiology. Less than 20% of the children, who are either too young or lack mental capacity, participated in the ACP conversation. for the others, parents do not want their children be involved as they may not be aware of their condition or the severity.
Discussion/Conclusions To increase outreach and awareness on ACP, strategies like holding roadshows for hospital staff; developing collaterals such as brochures to facilitate the communication with parents; incorporating initial ACP exploration as part of MSW’s standard of care and embedding facilitators in high-risk clinics to identify patients suitable for ACP introduction.
With an ACP discussion, parents are engaged early and have the opportunity to act as their child’s proxy by articulating preferences, thus allowing the medical team to clarify their wishes before any medical crises. Nevertheless, ACP is a complex and sensitive conversation, particularly in the child-parent-HCP triad.
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