Study paves the way for improved management of delirium in hospices

In the heart-wrenching final moments of a loved one's life, the absence of comforting last words can leave an indelible void. Such was the case for this anonymous member of a study’s Patient and Public Involvement group, who watched her husband slip away, robbed of his ability to communicate. 

This devastating experience echoes the plight faced by many patients in hospices, where delirium frequently manifests, plunging individuals into a state of confusion, disorientation, and altered mental states. The distress caused by delirium extends its reach beyond patients themselves, affecting their families and the dedicated healthcare staff entrusted with their care. 

The study by researchers in the Wolfson Palliative Care Research Centre has made significant strides in addressing the challenges surrounding delirium management in hospices. 

The study, known as Dampen-D and funded by Yorkshire Cancer Research, aimed to assess whether an improved strategy to detect and manage delirium is feasible, while also involving patients, families and healthcare staff in the design and evaluation process. 

Despite existing evidence-based guidelines around the care of patients with delirium, adherence to these guidelines has been inconsistent in hospice settings. The Dampen-D study sought to address this issue and help healthcare professionals to provide optimal delirium care. 

Dr Mark Pearson, Reader in Implementation Science and Co-Chief Investigator of the study said, “The impact of delirium on staff, as well as patients, is huge. It can cause staff moral distress if they are not equipped to detect or manage delirium. They may not have the skills, or the setting doesn’t facilitate management of delirium, yet staff want to do their best and help the patients in their care.” 

Professor Miriam Johnson, Professor of Palliative Care and Co-Chief Investigator of the study said, “We have found that our new strategy, developed in collaboration with patients, families and hospice staff, seems to improve delirium care in the four hospice sites which we have tested this in. We are now well placed to run this as a national trial and see the benefits of improved care across the UK.” 

Testing the strategy in hospice settings 

The researchers worked closely with patients and caregivers to modify an existing implementation strategy called Creating Learning Environments for Compassionate Care (CLECC), with the aim of adapting the CLECC to effectively implement delirium guidelines in hospices. 

Over a 24-month period, the researchers conducted a series of workshops, engaging hospice staff and individuals with first-hand experience of caring for someone with delirium. Their valuable insights refined the adapted implementation strategy, known as CLECC-Pal, ensuring its relevance and flexibility within the hospice environment. 

The researchers worked with four hospices, which were a combination of independent and chain hospices and in different socioeconomic areas, to implement the adapted strategy. 

The researchers also wanted to explore whether it was possible to collect data on delirium outcomes from patient records for evaluation, laying the groundwork for future large-scale studies to evaluate the impact of the implementation strategy.  

Dr Gillian Jackson, Research Fellow on this feasibility study, said “To streamline the process and reduce burden for patients and staff, we obtained a special ethical approval known as the Confidentiality Advisory Group. This enabled us to access anonymised patient records using an opt-out system, ensuring patient privacy while facilitating data collection.” 

The researchers explored the ability to gather demographic, diagnostic, and delirium management information from clinical records. Additionally, they examined measures of staff engagement and collected process data to understand the staff's use of the CLECC-Pal implementation strategy. 

Professor Johnson said, “We found it was absolutely possible to collect the data needed for evaluation. There were different ways of looking at the clinical records, ranging from paper only, to part paper and part electronic, through to electronic only. We really tested out if we can collect data in these different settings and different types of hospices; can we get through different regulatory permissions for the different hospices. It was this rigorous testing of the methods that we want to translate up into a bigger study.”  

Although the study was not designed to detect significant changes, analysis of the collected data revealed promising results; among patients affected by delirium episodes, there was a remarkable 13% reduction in delirium days following implementation of the strategy.

Collaborative input: Insights from carers, family members, and hospice staff 

The study's success can be attributed in part to its emphasis on patient and public involvement (PPI). Carers, family members and hospice staff actively participated in the core design of the study, providing valuable insights and ensuring the strategy's feasibility and effectiveness. 

Dr Jackson said, “We had regular meetings with a Patient & Public Involvement (PPI) group, facilitating feedback and suggestions for improvement. We also had a member of PPI that was part of our study team, as well as another member who chaired our steering committee, taking a position of responsibility.” 

This meaningful involvement of patients and staff helped ensure that the strategy was well-suited to address the complex nature of delirium care. 

Margaret, who is the study’s PPI team member, was also supported to attend the annual Hospice UK conference in 2022. Speaking of her experience in the study, Margaret said, “There have been several important components to it – the access to patients' records via the opt out; this was the first time I'd seen this operationally. Contribution to the conference poster for the Hospice UK conference was fun. The experience of facilitating at the online workshop - a challenge I won't forget.” 

She continued, “What a great team – I could ask for clarification on anything I didn't fully understand, and the PPI group were supportive throughout. Most importantly, the work has added to my knowledge of delirium, and I will be keen to develop that further in new projects which I am planning for the future.” 

Paving the way for better end-of-life care 

The successful completion of the feasibility study on delirium management in hospices marks a significant milestone in improving end-of-life care for patients. 

Dr Pearson said, “The feasibility study gives us the raw information that we need to really make a strong case for a national trial of the strategy that we developed. This is our next step; it will likely involve between 20 and 30 hospices to enable sufficient data about outcomes to be collected to definitively state you know the extent of the impact that the strategy is having.” 

Dr Jackson expressed her appreciation for the hospice staff’s engagement with the study, even during the Covid pandemic. 

Dr Jackson said, “Even in challenging times, hospice staff were actively engaged and understood the importance of testing out this new approach. This commitment from the staff further highlights their dedication to improving patient care and outcomes, and it was truly valuable in shaping and enhancing the study." 

The study's findings have paved the way for improved delirium management in hospices, giving hope for better care and outcomes for patients at the end-of-life. Through collaborative efforts between researchers, patients, families, and healthcare staff, this study marks a significant step forward in addressing the challenges of delirium in hospice settings. 

Dr Kathryn Scott, Chief Executive at Yorkshire Cancer Research said: “All people with cancer coming to the end of their lives should receive the very best delirium care. This is an important study that will help improve the experience of those with cancer and their loved ones.” 

For more information about the study, contact Professor Miriam Johnson or visit the Wolfson Palliative Care Research Centre.