Research with ARC East of England is highlighting the urgent need to make palliative and end of life care research more inclusive, particularly for people who may have impaired ability capacity to consent.
Image above: Caroline Barry, ARC East of England researcher and Principal Investigator
Palliative care consultant Dr Caroline Barry led the project to explore this area and help address the lack of evidence-based practice in palliative care. This work highlights the importance of ensuring that people with cognitive or communication challenges are not excluded from beneficial research when their condition deteriorates.
Initial work explored the barriers to equitable research participation for adults with impaired capacity who are approaching the end of life. Early findings showed that only a small minority of palliative care studies include this group, largely due to uncertainty about consent processes, lack of trusted relationships to support participation, ethical approval processes and the absence of clear guidance. Further research needed to investigate how to stop people being excluded so their voices can be heard to help improve palliative care.
A programme of work has been funded by NHS England and the Department of Health and Social Care (DHSC) Research Engagement Network and supported by the NIHR Applied Research Collaboration (ARC) to investigate further. This research emphasises the critical role of families, carers and other proxies in enabling participation and findings have now been published in the Palliative Medicine journal.
In the review, the researchers call for clearer guidance, better communication and earlier engagement with patients and their support networks, ensuring that those most affected by serious illness are not excluded from shaping the evidence that informs their care.
Dr Caroline Barry, lead researcher and author, said: “Too often, people approaching the end of life, especially those with impaired decision-making capacity, are excluded from research that could directly improve their care."
"Our findings show that proxy decision-making is complex and emotionally demanding, but with the right support, it can be a powerful way to ensure people’s voices and preferences are still represented. We need systems that make it easier, clearer and more compassionate for families and carers to be involved in these decisions."
Dr Caroline Barry, lead researcher and author
Evidence from the programme highlights how understanding of research, trust in clinical teams, and timing of conversations all shape whether people designated as proxies feel able to support participation in research. The paper includes data from 42 studies, conducted across 10 different countries, and a range of clinical settings, providing guidance with international relevance.
Caroline added: “We identified an urgent need for updated, specific guidance and training for both researchers and proxies, especially in palliative care contexts. In palliative care, people are often encouraged to plan for who should speak for them if their condition changes."
"Future policy and practice should explore models of early and structured advance research planning alongside discussions about care preferences. This approach would both support unpaid carers and family members in decision making, and also ensure that people’s preferences around research participation are respected, even as their condition progresses.”
Dr Caroline Barry, lead researcher and author
Next steps include finalising national guidance and working with partners (HRA, NIHR, NHSE) to apply and embed the guidance points in research governance and workforce development.
- Read more about the project here: Consultees, Advocates and Proxies in End of Life Research | ARC East of England.
- Find more information on Palliative Care - Capacity consent research.
- Watch a recent webinar on the project here: Developing Inclusive Practices around Consent and Mental Capacity in Palliative Care Research
