Understanding complexity in palliative care


Sophie Pask, PhD Student at Hull York Medical School, UK and Cathryn Pinto, Research Assistant at Cicely Saunders Institute, King’s College London, UK, explain the background to a longer article selected as ‘Editor’s Choice’ in the June 2018 issue of Palliative Medicine.

Sophie Pask

Cathryn Pinto

We are delighted that our recent paper ‘A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals’ has been selected as the ‘Editor’s Choice’ for the June issue of Palliative Medicine.

This qualitative research forms an important component of a larger programme of research called C-CHANGE, which aims to better understand how we can allocate resources in specialist palliative care based on patient and carer needs.

We often describe specialist palliative care patients as complex. But what does this mean? How can we adapt our care and services to better address complexity? We also need a better understanding of complexity to consider case-mix (classes of people with similar complexity or healthcare needs) and resource use in detail.

This research identifies sources of complexity and provides a framework that represents a comprehensive understanding of complexity for palliative care providers. We sought perspectives from patients, family members and professionals in the UK to develop a conceptual framework for complexity in specialist palliative care. We reached a total of 65 interviews to ensure that covered a variety of perspectives and incorporated suggestions from our patient and public involvement group. This was not an easy feat and we went through several reiterations to capture the perspectives from all stakeholders in a meaningful way. Our analysis used an existing theory (Bronfenbrenner’s Ecological Systems Theory) and we began to build up a picture of complexity that drew on Bronfenbrenner’s approach but adapted it for palliative care.

It was evident that complexity existed not only at a patient-level but also beyond the individual (for instance, in interactions between patients, carers and health professionals, because of service and systems, and more broadly because of societal perspectives and attitudes). Our framework also highlights the importance of time and the complexity of uncertainty and changing needs in a palliative care context.

We have learned a great deal about complexity in palliative care through undertaking this research and hope that others will also find this framework useful and applicable to their work. With a comprehensive understanding of complexity, we can capture patient-level complexity and better target the resources of specialist palliative care.

We would like to thank all the co-authors and our patient and public involvement group who helped to shape this paper.

This is independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12015). The views and opinions are those of the authors and do not necessarily reflect those of the National Health Service, the NIHR, the Central Commissioning Facility, NIHR Evaluation, Trials and Studies Coordinating Centre, NIHR Programme Grants for Applied Research, or the Department of Health.

Read the full article in Palliative Medicine

This post relates to the longer article, ‘A  framework for complexity in palliative care: A qualitative study with patients, family carers and professionals’, by  Sophie Pask, Cathryn Pinto, Katherine Bristowe, Liesbeth van Vliet, Caroline Nicholson, Catherine J Evans, Rob George, Katharine Bailey, Joanna M Davies, Ping Guo, Barbara A Daveson, Irene J Higginson and Fliss EM Murtagh published in Palliative Medicine 2018, Vol. 32 (6) 1078–1090. First published online February 2018.

Click here to download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers (and other EAPC-related papers) free of charge from the EAPC website at www.eapcnet.eu Choose Resources and from the left-hand side-bar choose Clinical & Care, Publications & Documents. Now LOGIN or REGISTER and scroll down to download articles. (Remember that it’s free of charge to become an EAPC registered user).


Read earlier Editor’s Choice posts on the EAPC Blog.

This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH and tagged , . Bookmark the permalink.

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