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ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children’s hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a ‘place of acceptance’.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

BackgroundWith increasing numbers of people living with complex life-limiting multimorbidity in the community, consideration must be given to improving the organisation and delivery of highquality palliative and end-of-life care (EOLC). AimTo provide insight into the experience of GPs providing EOLC in the community, particularly the facilitators and barriers to good-quality care. Design and settingA web-based national UK questionnaire survey circulated via the Royal College of General Practitioners, NHS, Marie Curie, and Macmillan networks to GPs. MethodResponses were analysed using descriptive statistics and an inductive thematic analysis. ResultsResponses were received from 516 GPs, who were widely distributed in terms of practice location. Of these, 97% felt that general practice plays a key role in the delivery of care to people approaching the end of life and their families. Four interdependent themes emerged from the data: continuity of care -which can be difficult to achieve because of resource concerns including time, staff numbers, increasing primary care workload, and lack of funding; patient and family factors -with challenges including early identification of palliative care needs and recognition of the end of life, opportunity for care planning discussions, and provision of support for families; medical management -including effective symptomcontrol and access to specialist palliative care services; and expertise and training -the need for training and professional development was recognised to enhance knowledge, skills, and attitudes towards EOLC. ConclusionThe findings reveal enduring priorities for policy, commissioning, practice development, and research in future primary palliative care.

Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.