Midtveisevaluering- Nina Elisabeth Hjorth
Midtveisevaluering for ph.d.-graden ved Universitetet i Bergen for kandidat Nina Elisabeth Hjorth
Nina Elisabeth Hjorth er tilknyttet Klinisk institutt 1. Veiledere er Fredrik Kragerud Goplen, Morten Lund-Johansen og Stein Helge Glad Nordahl
End-of-Life care: Patients’ preferences and relatives’ experiences, with focus on communication and advance care planning
Background and aim: Advance care planning (ACP) is a process of conversations enabling individuals to define goals and preferences for future medical treatment and care, discuss these with family and health-care providers, and to record and review these preferences if appropriate. The aim of this PhD project is to contribute to a Norwegian ACP approach.
Methods: During 2014 – 2015, we performed focus group interviews to explore the views on ACP in patients with advanced pulmonary disease. Based on these results and international literature, a guide for ACP conversations was developed. In 2015 – 2017, 51 ACP conversations were performed and summarized in the patients’ medical records. Ward staff’s experiences were explored in focus group interviews. Analysis of summaries and interviews was by systematic text condensation.
In the last paper, data on ACP from an international survey of bereaved relatives (the EU-funded ERANet-LAC CODE project) will be analysed by quantitative methods.
Results: Participating patients' primary need facing end of life communication was “the comforting safety”, implying support, information and transparency. Performing conversations in a patient-centred manner gave new and important information. The participants talked about: (i) Troublesome symptoms, (ii) existential themes, (iii) planning of future treatment and care, and (iv) important relations. Healthcare professionals acted as gate-keepers during recruitment, but saw a need for such conversations and requested education, time and management support.
Conclusions: Patients need a comforting safety, and ACP may contribute to this. ACP conversations performed in a patient-centred manner can help patients to talk about important issues concerning future care. Overcoming patients’ and healthcare professionals’ barriers for the uptake of ACP requires both resources for education and allocated time.