Looking beyond the PSP interventions: a thematic analysis of the perceptions and experiences of people in palliative and end of life care

By Dr Annmarie Nelson, Marie Curie Palliative Care Research Centre, Cardiff.

Marie Curie published the results of its Palliative and end of life care Priority Setting Partnership (PeolcPSP) in 2015, achieving its aim to identify the interventional research questions in palliative and end of life care. But beyond these questions was a broader and important set of issues and concerns that patients, families and health professionals wanted research to answer, that could not be ignored. In our new report ‘Beyond the questions’ (.PDF) – a thematic analysis of this data - we share the experiences and insights of patients, carers and clinicians in palliative and end of life care and call for more social science research in this area.

How this analysis came about

I was involved in the Palliative and end of life care Priority Setting Partnership as a steering group member and it was a sheer pleasure to witness such professionalism and clear guidance from our JLA Adviser Katherine Cowan, I don’t think I’ve ever seen a teleconference chaired as skilfully either before or since. In this less than ideal, but often necessary, meetings format, she somehow encouraged essential contributions from all of the steering group members who represented other charities, patients, funders and commissioners.

I also had the privilege of coordinating the data analysis, which as the new JLA Guidebook highlights is often in the form of personal stories rather than research questions. For the Palliative and end of life care Priority Setting Partnership, the questions we asked were very broad, covering all aspects of palliative and supportive care. So, the extraction of respondents’ questions for the JLA process took a certain amount of interpretation. Even so, we found that even after the top ten uncertainties had been clarified, much of the personal storytelling remained unreported within the dataset.

We were extremely fortunate to be offered further funding from the Economic and Social Research Council to enable us to explore the patient stories as a supplementary analysis of the data. Our JLA Adviser, Katherine, also stayed with us through this process.

We used a qualitative methodology to look at the full dataset, which is often described as understanding the ‘how’ and ‘why’ of situations - words rather than numbers - in order to understand the opinions and attitudes of the respondents. We were able to look more closely at what the respondents said about how we talk about death and dying, what we (don’t) understand about death and dying and the way people die, and respondents frustrations with access to services and how care across different settings could be better coordinated.

Perhaps the most interesting outcome of this extra analysis was the introduction of a new theme, which had not been apparent in the original exercise. This is because it is overwhelmingly concerned with peoples’ attitudes and understandings rather than anything that could be measured as care or treatment. This theme is concentrated on our understandings of death and dying in society and the purpose and scope of palliative care. We were able to report the thoughts of the survey respondents (patients, carers, clinicians) on difficult topics such as assisted dying, euthanasia, and the ethical issues surrounding the transition from aggressive treatments aimed at prolonging life to those focused on purely the management of symptoms. Echoing the increasing concerns about overtreatment of disease, these included concerns about the use of futile treatments that are aimed at prolonging life where palliative care may be more appropriate.

We have since had enquiries from other PSPs who are interested in this type of analysis as a supplementary exercise, which is discussed in our report (.PDF). From a personal perspective, with a research portfolio focused on integrating patient experience into clinical research and practice, I am delighted to present the respondents’ personal experiences, and to show the benefits of a social science approach in uncovering the attitudes and perceptions of our respondents to further inform the JLA process.

To read the report, visit: https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf (.PDF).

For any questions about the report, contact Dr Annmarie Nelson at NelsonA9@cardiff.ac.uk

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