Prescribing and medication use for symptom control in palliative care: stakeholder engagement within an activity theory study

Abstract

Introduction People with palliative care needs often use prescription medication to achieve symptom control. Prescribing and medication use are complex, multi-step processes influenced by prescribers, patients, carers, and contexts. They are shaped by historically established divisions of labour and normative rules. However, in the care of palliative patients, approximately 20% of NHS serious incident reports involve prescription medications with causes and contributing factors poorly understood (1). Understanding the mismatches between what is intended to happen and what is experienced in practice is key to improving safety and confidence in palliative care. Phase one of this study focuses on how the processes of prescribing and medication use are intended to happen, and comprises stakeholder engagement (presented here) and a scoping review. Aim To develop a model of intended processes of prescribing and medication use for symptom control in palliative care across the contexts of home, hospital, and hospice. Methods Stakeholder engagement was undertaken with a purposive sample of participants who had an interest in, or direct experience of, palliative medications. Invitations to participate were sent to professional networks and a patient and public involvement group. Informal conversations with a topic guide including known steps in the processes of prescribing and medication use were held either via video-call (recorded with permission) or by email. Conversations were examined for content relating to steps in the processes, and for themes that ran across multiple steps. An iterative cycle of listening, identifying steps, theme attribution and development of an intended processes model was undertaken with each recording. Results Twenty video and one email conversations were conducted with 7 family carers, 4 pharmacists/pharmacy researchers, 4 specialist palliative care professionals, 3 non-clinical researchers and 3 general practitioners. Different steps in the intended processes of prescribing and medication use at home and in hospital were identified. Themes of decision-making, prescribing, monitoring/supply, use/administration, and stopping/disposal were all represented. Further themes of deprescribing, anticipatory medicines, and contexts of practice - including out-of-hours care - were all raised. The processes model that resulted was not linear and incorporated complex feedback loops that facilitated ‘tinkering’, safe-to-fail experiments, and negotiations balancing ‘gut feeling’ with protocols and patients’ wishes. Conclusion Engaging with carer and professional stakeholders as a preliminary step in our study provided opportunity for clarification of key concepts, exploration of the nature and diversity of experiences, and identification of knowledge gaps. Whilst our engagement work may have been limited with the inclusion of only one nursing representative and little discussion of the hospice context, these aspects together with the content and themes identified will inform the design of our scoping review using the Joanna Briggs Institute framework. Data from the stakeholder engagement and the scoping review will be combined to finalise a model of intended processes in prescribing and medication use in symptom control in palliative care. Phase two of this study is a focussed ethnography to develop an experienced processes model. Synthesising the intended (phase one) and experienced (phase two) processes models using activity theory (2) will lead to when, how, and why processes in prescribing and medication use are misaligned and to ways in which systems can be improved to support patients and their families. References (1) Yardley I, Yardley S, Williams H, Carson-Stevens A, Donaldson LJ. Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents. Palliat Med. 2018;32(8):1353–62. (2) Engeström Y, Davydov V, Toulmin S, Lektorsky V, Tolman C, Cole M, et al. Theoretical Issues. In: Engeström Y, Miettinen R, Punämaki R-L, editors. Perspectives on Activity Theory. Cambridge: Cambridge University Press; 1999. p. 1–146.