End-of-life conversations – experiences of doctors and families

During the 2000s, the concept of a transition point during care (“brytpunkt” in Swedish), and, in particular, a transition point during palliative care at the end of life, has become increasingly common in Swedish healthcare. This concept is used in education, in healthcare routines, quality registers, government reports and in national guidelines. Identification of a transition point during palliative care at the end of life and communicating with patients and family members through end-of-life conversations is considered to be of great importance for deciding how a person’s healthcare will be delivered at the end of their life.

End-of-life conversations are also important for the participation of both patients and family members in the care and for addressing the priorities that they have in life. The literature describes the importance of the seriously ill person receiving information about their illness and treatment in order to be able to give active consideration to and plan the last period of life. How then is the transition point during palliative care at the end of life defined? What does an end-of-life conversation include and what experiences do healthcare staff, patients and family members have regarding end-of-life conversations? How do patients and family members experience these conversations; do they impact their decisions and well-being during the end of life?

There is currently no consensus definition in Sweden and the international equivalent is ambiguous, which is why it is important to gain increased knowledge around this subject. The aim of this project is, therefore, to investigate how doctors and families experience end-of-life conversations and communicating that a cure is no longer possible. So far, focus groups have been conducted with doctors in palliative care (of adults) and paediatric oncologists in Sweden to investigate their experiences of end-of-life conversations. Data collection has been completed for that part of the project. Further studies based on the families’ experiences are planned in paediatric oncology, with a special focus on siblings.