Background There are increasing numbers of children with palliative care needs in the community. The death of a child is a rare but tragic event. Currently a considerable number of children who do die, do so on PICU. End-of-life care and ACP in paediatric patients presents one of the most complex, emotional and ethically challenging scenarios that exists in clinical medicine. Currently there is a lack of uniformity in approach.
Aim The overall aim of the project was to investigate the research question: “What is current practise related to ACP in relation to children with life-limiting illness on PICU, and how might this be improved?”
Methods Qualitative semi-structured interviews were conducted with senior medical and nursing staff in a tertiary referral centre PICU. Interviews were transcribed, field notes were documented and a thematic content analysis was carried out, using an inductive approach.
Results The sample comprised eight consultants and six senior nurses. Themes were revealed around “the significance of the death of a child”. ACP is a dynamic, MDT process that is considered essential in order to improve care for children with life-limiting conditions to increase the likelihood of “a good death”. Every case is different, but PICU clinicians feel that ACP can be associated with the delivery of appropriate care that is in the best interests of the patient. Multiple barriers exist, including the difficulty in raising the issue, unpredictable illness trajectories making it difficult to identify when to commence discussions, multicultural issues, and lack of training in and time to deliver ACP.
Conclusion “How people die remains in the memory of those who live on.” Dame Cicely Saunders.
The motivations for improvement of ACP for paediatric patients with palliative care needs are numerous, nationally to standardise care and ensure appropriate use of pressurised NHS resources, locally within regions to provide care appropriate for the population and close to home, and most of all on an individual level to ensure the best possible care, with respect for autonomy and choice, for each child with a life-limiting illness and their family.