Background: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers.
Aim: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur.
Design: Qualitative grounded theory study using individual interviews.
Setting/participants: Hematologists ( n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence.
Results: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death.
Conclusion: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.
Keywords: Advance care planning; hematology; hope; palliative care; recurrence.