Clinical Genetics in a Palliative Care Setting: A Qualitative Exploration of the Barriers and Levers Staff Report when Discussing Family Risk of BRCA 1 and BRCA 2 mutations

Palliative care is a term which refers to the services provided to those with incurable, life-limiting illnesses. In addition, the specialism of clinical genetics is increasingly able to identify individuals who are genetically predisposed to illness, particularly Breast Cancer (BRCA) 1 and 2 mutations which increase the chance of developing breast or ovarian cancer. A range of preventative and screening interventions are available. These issues have the potential for psychological consequences for patients at the end of life, their families and for the clinicians raising these issues with them. The review of the literature examined the qualitative evidence-base regarding the impact of caring for the dying on hospice nurses. A qualitative metasynthesis of 11 articles was carried out and identified two main themes and eight subthemes. These reflected what nurses’ considered to be core elements of their work with patients and a primary driver to facilitate a ‘good death’. Further to this, factors which either facilitated or impeded achieving this aim were identified to act to either replenish or drain nurses’ resources. Recommendations for how to best meet these identified needs were made with potential benefit for both nurses and patients. The research consisted of interviews with 13 palliative care staff to explore issues pertaining to the discussion of genetic risk in a palliative care setting. Thematic Analysis (TA) was used to develop four main themes and seven subthemes identifying the main considerations for participants regarding the inclusion of conversations about potential genetic risk of BRCA 1 and 2 mutations within their general practice. These formed the basis of recommendations which may be useful to services as they adapt to novel clinical interventions within their care for dying patients. The critical appraisal provides a reflective account of the experience of undertaking research and limitations of the research are discussed.