Title: Communication of palliative needs in discharge letters from specialist to primary palliative care: A multisite sequential explanatory mixed methods study
Funder: Marie Curie

Abstract: Policy problem: There are inequities in access to specialist palliative care (SPC) that can be improved through better communication between services. SPC encourages early referral for a broad range of issues, although not all patients will need SPC. However, very little is known about what palliative needs are associated with patients who are referred back or discharged, how these palliative needs are communicated, or why certain palliative needs are considered by specialist palliative care to be better managed by primary care. Aim: This study will address the what, how or why gaps in our knowledge of discharge from specialist palliative care so we can contribute to improvements in the coordination of care from specialist to primary palliative care services. Objectives 1. Identify what patterns, if any, there are in the palliative needs of those discharged from Marie Curie specialist palliative care services. 2. Describe how palliative needs are communicated to primary care clinicians in discharge letters from Marie Curie specialist palliative care. 3. Develop insights into why we might be seeing these patterns and ways of communicating and why some patients are thought to be better managed by primary care? 4. Translate findings and contribute to policy and guidance on discharge letters to improve communication between specialist and primary palliative care services. Methods: We will conduct an explanatory sequential mixed methods study consisting of a retrospective review of discharge communications for 250 patients across five hospices, followed by focus groups with specialist palliative clinicians at each hospice. Outcomes and dissemination: We will work with stakeholders and Marie Curie national policy teams to report recommendations of core and optional elements for local specialist palliative care discharge templates. These will be disseminated through clinical and policy networks. We will also present our findings in a peerreviewed article and at conferences.

Lay abstract: Specialist palliative care, like that provided by Marie Curie hospices, seeks to provide care and support for those with the most complex palliative needs. But we know that not everyone who could receive specialist palliative care receives the support they need. One issue is that what ‘complex palliative needs’ are can be difficult to define, recognise, and communicate. Much research and policy development has gone into encouraging early referral to specialist palliative care for a wide range of palliative issues, so that specialist clinicians can assess and support those with complex needs. Of course, not all patients will need specialist palliative services. But we know very little about those discharged from specialist palliative care. In particular, we do not know what palliative needs are associated with discharge (e.g. physical, personal, social and spiritual), how these palliative needs are communicated to GPs and patients (e.g. models, scores, indicators etc), or why certain palliative needs are considered by specialist palliative care to be better managed by primary care (e.g. clinical expertise, patient choice, availability of resources etc). To address this we will look at the discharge communication of 250 patients from five hospices. We will also speak with specialist palliative clinicians to get their insight into why people are discharged. By working with clinicians, PPI, and Marie Curie we will produce a report to help improve discharge communication. We believe that by developing an evidence base of what needs are associated with discharge from specialist palliative care, how those needs are understood, and the reasons for discharge we will contribute to policy development that will help: specialist palliative care to better understand what complex needs are; primary care make more appropriate referrals; and, support service providers identify trends of potentially inequitable provision of specialist palliative care.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE