Providing 'professionalism with compassion'; how the time for caring communication can improve experiences at the end-of-life at home, findings from a realist evaluation

Background: For many patients and caregivers, attending to dying and death at home will be a new and fearful experience. This research brings new evidence on the central support of the Rapid Response Service (RRS), provided to those who chose to die at home. RRS's are variable, although all seek to avoid unwanted hospital admissions and to respond flexibly to suit individual preferences for support. Staffed by specialist palliative and end-of-life care nurses, the RRS works alongside primary and acute care, but little is known on their impact.

Methods: Realist evaluation is a theory driven approach which identifies patterns of generative causation; this approach ascertains what works, for who, why, and in what circumstances. In this study, initial theories were developed by the research team and subsequently tested through semi-structured realist interviews with patients, caregivers, RRS staff, and other health practitioners. Iterative rounds of data analysis were undertaken to tease out contexts, mechanisms and outcomes, testing and revising the theories, including the application of substantive theory. Finally, we produced refined programme theories (PTs) which provide the basis for wider application of findings.

Results: Overall, 36 participants contributed, and six areas of inquiry were developed. This paper sets out the data from one area, PT Skilled Communication. Several benefits arose from RRS staff having the time to talk to and with patients and caregivers: specifically, that this communication improved knowledge in a tailored and compassionate manner. These exchanges allayed fears and reduced uncertainty, improving confidence to care. This was particularly embedded in one RRS because of their holistic approach.

Conclusions: Supporting death and dying at home is a novel and difficult experience for many; skilled communication, provided by specialist palliative care staff, can make a positive difference. Through their provision of compassionate support, RRS staff can help caregivers to recognise and respond to different symptoms and situations, reducing fear. By responding rapidly, only on request, they also meet individual preferences for contact. Together, this improves the opportunity for the last days and hours of life to be experienced, at home, in as affirmative a manner as possible.