Event Report – March 2013

Overview:

End-of-life care has recently been a feature of the public conscious, but what does research have to contribute to our understanding and practice of this? CLAHRC-CP and University of Cambridge researchers addressed this with a free one day event held on March 5 2013. The end-of-life care theme team and invited speakers lead discussion about current research in end-of-life care and gave delegates the opportunity to be involved in developing ideas for future research and knowledge implementation. The event, held at The Cambridge Professional Development Centre, Trumpington (Cambridge), was popular and well received. Over 80 delegates from around the country attended and shared their experiences from a broad variety of organisations, with representatives from local and national charities, health and social care practitioners (including hospital, hospice, ambulance and community professionals) and service users.

Objectives of the Day:

The main purpose of the day was to highlight on a local level the research being done by the end-of-life care team based at the University of Cambridge. It was recognised that many of the researchers frequently present their work at regional, national and international conferences but there had not been, as of yet, a single event that highlighted the collected body of work to one of the primary target audiences – the local services and population. Invited speakers were asked to directly reflect on how the research being done locally sheds light on important regional and national concerns, including informing policy and practice developments. Such an event would not only raise the profile of the research team but also of CLAHRC-CP more generally.

In addition to this, it was hoped that bringing together interested persons would enhance our research collaborations, generate new ideas, and further the work done in translating research knowledge into practice. A considerable amount of time was allotted to informal networking to encourage these processes. Overall all the aims were met throughout the day, with specific aspects being emphasised in the various presentations and break-out sessions.

Knowing that such events can be quickly over-subscribed, a targeted invitation approach was adopted to maximise the mix of participants as well as honouring already established collaborations. People from the healthcare sector, social care, end-of-life care policy making, and interested members of the public were invited. In some instances the invite ‘travelled’, particularly in the latter group, indicating that there was a wider interest in the event than initially anticipated. Feedback from delegates indicated that they choose to attend because they wanted to: find out about the latest research and initiatives, learn about end-of-life research, and network with colleagues. This indicates that that the target, and present, audience was well matched to the overall objectives of the day.

Overview of Sessions:

The one-day event was organised in such a manner that the keynote speakers (Dr. Stephen Barclay, Professor Bee Wee, Katy Harrison, Tony Bonser and Claire Henry) were held in the main conference hall where all delegates could hear the presentations. All other sessions were held in parallel as break-out sessions allowing for a greater diversity and choice. Below is an overview of each of the sessions/talks:

Dr Stephen Barclay (CLAHRC End-of-life care theme lead) opened the day with an overview of the research done by CLAHRC-CP and the wider end-of-life care research team. Download Dr Barclay’s presentation here.

Professor Bee Wee (Academic Director of Oxford International Centre for Palliative Care) gave an engaging overview of current end-of-life care policy highlighting both the advancements that have been made in recent years and the dilemmas still to be addressed. Her talk generated a brilliant buzz with delegate discussion of her talk continuing throughout the day.

The presentations by Katerina Lagoudaki (CLAHRC-CP PPI Lead) and Bella Madden (service user) considered the reality of being involved in end-of-life care research as a service user and the benefits to the individual and the researcher. This talk encouraged public engagement in research and several presentations during the day actively involved the audience in the research process.

Sarah Hoare (CLAHRC-CP End-of-life care theme) explored with delegates the issues surrounding end-of-life care that result in dying patients being admitted to hospital.  Using case studies informed by the Admissions Close to End of Life (ACE) Study, groups discussed appropriate action for end-of-life patients and how this may differ to current practice.

Dr Gemma Clarke (CLAHRC-CP End-of-life care theme) led a workshop on eating and drinking issues at the end of life for individuals lacking decision-making capacity. The participants discussed scenarios based on real life cases and debated the clinical, practical and ethical issues surrounding these cases.

Dr Morag Farquhar (University of Cambridge) presented information on a complex intervention for breathlessness. Her talk demonstrated the use of mixed-methods research and how research is currently information a particular service within Cambridge. (Dr Farquhar’s talk replaced Dr Fleming’s talk on the ‘Oldest Old’ who was unable to attend).

Erica Borgstrom (CLAHRC-CP End-of-life care theme) presented data from her PhD work on choice in end-of-life care. She used several examples to illustrate how an emphasis on patient choice that focuses on place of death may miss other aspects of care, such as continuity and concerns for the carer. This talk generated much discussion in the room about the role of choice in end-of-life care.

Katy Harrison (End-of-Life Care Facilitator for Peterborough and CLAHRC Fellow 2010) spoke of her research as a CLAHRC  fellow and how this has changed health care practice and education in her area. Her talk was an excellent illustration of the knowledge translation process that CLAHRC is about as well as evidencing the mobility of people and ideas influenced by supported research.

Delegates welcomed the opportunity to network during lunch and after Dr Stephen Barclay (CLAHRC End-of-life care theme lead) opened the afternoon session with an informative talk on the importance of end-of-life care education. Particular highlights from Stephen’s talk included findings on the surprising prevalence of bereavement amongst medical students and a discussion on whether choice should be at the forefront of good patient care.

Clare Crang, Sue Boase and Emily Moran (all University of Cambridge) led a workshop on the challenges and importance of end-of-life care research. This included discussing the practicalities of conducting research, drawing on two case examples from the researchers’ own work.

Dr Morag Farquhar (University of Cambridge) presented on preferences for end-of-life care in the oldest old. Reporting on data collected with Dr Jane Fleming (CLAHRC CP End-of-life care and Old Age theme) for the Cambridge City over-75s Cohort Study Morag highlighted that discussing end-of-life care with the oldest old may not be the taboo society and health professionals sometimes assume it to be.

Erica Borgstrom and Dr Aileen Walsh (both CLAHRC-CP End-of-life care theme) led a popular research methodologies workshop which used a ‘speed dating’ method for developing new research ideas and producing new research collaborations. The audience were encouraged to think of how they kinds of questions and the types of answers you want affect the methods used. This provided some research training for health professionals and members of the public. Several people remarked on possibility developing their ideas further.

Tony Bonser (volunteer and activist) gave a personal and moving account of end of life care as he spoke about his experiences as Macmillan volunteer and his son Neil who died from cancer in 2009. He highlighted that the two key issues for patients when it comes to new research and initiatives in end of life care are: How can this improve my life? And how soon will it make a difference?

Claire Henry, NHS National End of Life Care Programme Director gave an overview of developments in end of life care and directions for the future. She spoke about tackling the taboo surrounding end of life conversations by setting up the Dying Matters Coalition and highlighted the achievements in developing disease specific strategies for end of life care.

Overall the presentations encouraged the audience to think about the practice of end-of-life care, from what underlies it to how it could be made better. Updates on the latest research findings and current policy agendas helped form a part of professional education.

Engaging with a diverse audience:

A diverse audience was purposely invited in order to bring together the public, professionals, policy-makers and researchers. As such presenters were posed with the difficult task of speaking to many levels at the same time. In order to make the information more accessible, visual aids were used and ample time was left for questions after presentations. In addition to the set sessions, 10 research posters were hung in the venue to continue engaging with the audience during the coffee breaks. For CLAHRC-CP projects, approved BITEs and briefings were supplied; other projects also supplied short reports that delegates could take with them. Selected peer-reviewed papers were also available and many of these additional resources were utilised by the delegates.

Public Engagement:

A key element of the day was to encourage public engagement in research. Whilst there was no direct PPI involvement in the design of the day, besides the input from the CLAHRC-CP PPI Lead, the advert for the day proved popular among members of the public. Over 20% of registrations came from non-professionals, many of whom attended the PPI information presentations. Over 15% of delegates, including health and social care professionals, expressed an interest in being involved in future research projects by providing their details in the ‘Get Involved’ forms that were provided. Material from these forms can be used to inform future research projects and PPI and advice panels.

Feedback from the Day:

On the official feedback from (devised by CLAHRC-CP), participants rated the day as ‘Excellent’ overall, awarding it an average of 5/5 for the whole day. Approximately 30% of participants responded to formal feedback. Professor Bee Wee’s talk was particularly well-received, as was Tony Bonser’s personal account of end-of-life care. The workshops were popular with participants who enjoyed the chance to network and engage with colleagues from different backgrounds, although it was recognised that these could have been longer. Both the formal feedback and the comments received on the day show that people overall enjoyed the event and found the presentations interesting. Several have commented since the event that they are already using information provided in their daily practice and education.

Organisation and Funding:

The event was generously supported by the CLAHRC-CP, which supplied funding for the day and administrative support. Primary organisation for the day, including conception, content, and identifying the key audience was led by Erica Borgstrom along with other team members including Sue Boase, Gemma Clarke, Sarah Hoare, and Emily Moran. Angela Harper, Katerina Lagoudaki, Fiona Longstaff and Lea Wood provided additional input and support.

The event came under the budget provided by CLAHRC-CP in spite of the free admission. Main costs included venue hire and catering. Due to the number of no-shows (registration was full at 100 participants; no show rate of almost 20%) there was more food than necessary. People may have been more likely to fail to attend due to not losing any registration fees. We decided to make the event free to enable wider participation from both the public and professionals who may otherwise be restricted by budgets to attend such events. Managing registration payments between CLAHRC and the University was also cited as complicated, as was the possibility of charging no-shows after the event. For future events we may wish to reconsider the benefits and risks of free registration, particularly if located within a higher-cost venue.

Looking Ahead:

Whilst the event was primarily a showcase event, this does not mean the process is done yet. Through the many discussions, networking and feedback, it is clear that the task of end-of-life care research is not done. Many news ideas were generated by the day and future research collaborators were identified. It is hoped that the legacy of the day will be in how it has helped changed people’s thinking, creating and sustaining connections, and generating new ways forward.

Report written by Erica Borgstrom, Gemma Clarke and Sarah Hoare.

23 March 2013