Navigating existential conversations about life and death with families in paediatric palliative care: a qualitative interview study with healthcare professionals

BACKGROUND: When a child has a life-threatening illness, guidelines emphasise the importance of providing holistic support to the whole family. Conversations about existential issues are essential in this support, yet staff often lack formal training in communication, particularly when addressing such issues as life and death. This qualitative study explored how paediatric healthcare professionals in Sweden experience and approachconversations about existential issues with children and their families facing life-threatening illness. METHODS: Eight professionals representing different disciplines and paediatric palliative care settings took part in individual interviews, analysed using an interpretative description approach. RESULTS: The results show that healthcare professionals experienced the existential conversations with families as emotionally intense, ethically complex, yet meaningful. A balance between courage, presence, sensitivity, and professional boundaries was crucial, as well as the need for collegial support. The importance of honest communication and age-appropriate ways of talking about illness and death was emphasized. They stressed that communication should be empathetic and culturally sensitive, without ready-made solutions, and based on the unique needs of the family. They also described organizational factors that influenced their ability to engage in existential conversations with the families. CONCLUSIONS: Maintaining an open approach to existential conversations is essential to how these dialogues are carried out. Such an approach includes creating workplaces with an organizational culture that encourages existential conversations with patients and families. The importance of both personal and professional development is also emphasized, where collegial support and structures that promote professional growth, such as supervision and debriefing, strengthen the ability to address existential issues.