The drama of end of life care at home

BACKGROUND: Many terminally ill patients want to die at home. Family carers are fundamental to achieving this, but often feel anxious and unprepared for the role. Supporting them is vital in palliative care.

AIM: To explore the experiences of carers of patients dying at home, in particular their expectations and preparedness for the dying process.

METHOD: The study followed a qualitative approach. In-depth, semi-structured interviews with 15 carers were carried out.

RESULTS: Carers experienced uncertainty and felt unrehearsed for their role. They were reluctant to seek information to give them a script for their performance because it was too painful to contemplate the patient's death. The carers needed the direction of health and social care professionals, and the help of paid carers, but experiences of these services varied.

CONCLUSION: The study highlighted the drama of the situation for carers, and the anxiety of being the leading player on stage with minimal preparation. Nurses play a crucial role in supporting carers and can use a "dramaturgical" perspective to guide them in giving carers the direction they need.