Self-management support at the end of life: Patients’, carers’ and professionals’ perspectives on managing medicines

Background: Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care. Aim: To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context. Methodology & Methods: Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge. Setting: Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices. Participants: 38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses). Findings: The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically self-management was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and side-effects, led to a complex web of roles and behaviours, varying day by day, if not hour by hour. Data confirmed previously proposed professional roles were enacted to support self-management. Furthermore, as patients, carers and clinical nurse specialists worked together to achieve effective pain management, they enacted and inter-acted in the roles of advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter. Conclusions: The study has demonstrated what self-management support at end of life entails and how it is enacted in practice