Catastrophic bleeds during end-of-life care in haematology : controversies from Australian research

Goals of work: This article seeks to address the lack of information in the literature, by providing preliminary findings on the experience of managing catastrophic bleeds for haematology patients, from the perspective of health professionals involved in the care of such patients and their families. Materials and methods: Insights from qualitative interviews with seventeen (n=17) haematological nurses, four (n=4) palliative care nurses and fifteen (n=15) haematologists, conducted as part of a 2-year major national study on haematology and palliative care funded by the National Health and Medical Research Council, Australia. The interviews were audio-recorded and transcribed verbatim. The language texts were coded and analysed thematically. Main results: The findings indicate that there is considerable controversy about the provision of clinical and supportive care to haematology patients who are vulnerable to catastrophic bleeds, including such issues as whether it is possible to identify individuals likely to be affected, the role of blood products, and whether it is wise to warn family or carers. The insights from the health professionals also highlight a number of practical suggestions including: the use of dark towels to reduce the distress of the visibility of the bleed; the importance of advance planning for care; accepting the limits of the situation; reassuring family that the patient is likely to lapse into lack of consciousness and will not be suffering, and the administration of sedation. Conclusions: The important recommendation from this research is the resounding need for further work on this topic in order to provide clear guideline for best practice in clinical and supportive care