Our theoretical framework developed in workstream 2 provides a structured and comprehensive way of considering complexity in palliative care. This understanding of complexity can help move both clinicians and policy-makers towards a more meaningful response to complexity, highlighting as it does the need for services to move away from ‘standard’ and ‘one size fits all’ care, and towards more individualised and tailored delivery.
Stakeholders – including decision-makers – highlighted the importance of having a shared understanding of complexity across different specialist palliative care providers and settings. Frameworks that accurately capture patient-level complexity can allow us to communicate the specialist palliative care provider role more clearly to other specialists and generalists providing palliative care to patients and families.
An important consideration is that these criteria should not be used to inform a ‘baseline’ level of specialist palliative care service; by the very nature of this study, we have identified criteria which differentiate between existing models. It follows therefore, that – inevitably – some specialist palliative care services will provide some elements and not others; this is to be expected, given the purpose and methodology of our work. Other characteristics, such as holistic care, training in specialist palliative care and the use of multidisciplinary teams in delivery of care, are considered to be ‘core’ to the definition of specialist palliative care11 and so are not included in these differentiating criteria.
The casemix classes enable providers of specialist palliative care to determine the likely resources needed for care, at the individual patient level. If the specified criteria are measured and combined into these classes at the start of an episode of care, they provide systematic insight into the level of complexity of needs and the probable resources required to meet those needs. The Pricing Team at NHS England and Improvement are currently working on a Community Currency Development Project, work somewhat delayed by the COVID-19 pandemic, and propose introducing a currency for last year of life (www.england.nhs.uk/pay-syst/development/palliative-care-development-currency/; accessed 21 August 2023). This work will help inform this project.
Managers and senior leads should reconsider communication and information-giving in relation to transitions, in particular what information and preparation is provided when and in how much detail. Continuity of care and emotional and practical support for patients and families as they make necessary transitions between settings needs to be well resourced to prevent future distress and difficulties.