I began reading Faulkner’s “As I Lay Dying” as I lay feverish, soon after having started my job as a researcher on the Cambridgeshire and Peterborough Project for Data Sharing in End of Life Care. I hoped it would be a darkly poetic way of reconnecting with a research area I had left for 4 years. I hoped it would also make me feel better by way of comparison. It didn’t. I only finished this thin book, consistently ranked as one of the best in the 20th century, half a year later. By that time the fact that there was no hope, no redemption in the story felt a fact of fiction, not a law of life.
At its simplest, this is the story of Addie Bundren dying and the coffin with her body being transported to Jefferson as per “her own wish to lie among her own people”. After 9 days and two near-losses of the coffin, first in water, then in fire, the stinking body is buried in the land of her folk. Along the way, one of her sons breaks his leg, another is burnt in a fire, a third is taken to a lunatic asylum, and her husband finds a new wife while borrowing a shovel to bury his first one.
We wish to think that this is a past long gone. But just as in Faulkner’s time there were better ways to die, all those types of experiences happen in our times too. The physical roads may be solid, but the informational infrastructure in healthcare may be limited or vulnerable under pressure. Bodies will not be left to rot, but pain may be ruefully uncontrolled. A patient’s wishes may be felt as sacred (“I know her. I promised her”) but unrealistic relative to services and support available.
The Project for Data Sharing in End of Life Care, funded by the Health Innovation and Education Cluster (HIEC), is about improving the informational infrastructure in end of life care across Cambridgeshire and Peterborough. It is an “EPaCCS-project”, with Electronic Palliative Care Coordination Systems extending the idea of Locality Registers as put forward in the National End of Life Care Strategy. It includes an End of Life Care Template, an End of Life Care View, clinical and service review Dashboards (work in progress) and a set of underpinning systems, processes and roles.
The vision is that GPs, District Nurses and specialist palliative care staff will be filling in the Template with key clinical information about the patient and their care preferences. Staff on the receiving end, as in 111, Out of Hours, Accident and Emergency departments and the Ambulance Service, will be consulting the View. Finally, practices and commissioning groups will be reviewing care though information on their respective Dashboards. The expectation is that if such structures and processes are in place, local end of life care will be better coordinated, more effective and more consistent with patients’ wishes.
The research project, “Prepared to Share?”, funded by HIEC and CLAHRC, aims to evaluate the extent to which this happens and support ongoing and subsequent improvements to the service.
Some of the news is good.
69.6% of GPs in Cambridgeshire have used the EoLC Template, with 35.5% of them using it on most weeks (340 GPs respondents). GPs update the Template in 3 to 5 minutes. Many comment on “loving” how brief it is, how useful the prescribing tab and linked documents such as the bereavement directory are, how effectively it reminds them of what they need to do. Out of 107 local GP practices, 77 can access it in their own system. Specialist palliative nurses tell of being thanked by Out of Hours doctors for the information they have provided.
But it is not easy and far from perfect.
The project is based on the clinical information system dominant in GP practices and community settings. It is, however, 1 of at least 9 main local systems which are not interoperable. There are at least 42 local settings and teams, other than the 107 GP practices and 177 care homes, where the tools need to be made available and their use supported. While theoretical access is available in 88% of those 42 settings, practical realities are quite different. For instance, District Nurses do not have mobile devices and thus access to their electronic system in the patients’ homes. Hospital staff reacting to unrelenting demands rarely feel able to look up patients on an external system.
Patients often misunderstand data sharing. Doctors cannot afford the time to explain the complexities of it. Many perceive “form filling” as an antithesis to patient-centred care. They worry about information governance. While 1% of the population is expected to die any one year, the remaining 99% have different healthcare needs.
The project is ongoing. Its outcomes will not be seen quickly, but its logic appears robust and substantial progress has been made. Most importantly, patients and carers are exceptionally supportive of it. On seeing the latest (18th) version of the End of Life Care Template, a member of our research User Group commented, with much emotion, that this is what she has been working for the last 15 years, as a volunteer and campaigner after the death of her daughter.
I do have faith in this project – both the service development project and the research-evaluation one. But in hours of darkness I fear we may be focusing on form(s) and inadvertently jeopardising substance. In the way in which Addie talks of words:
He had a word, too. Love, he called it. But I had been used to words for a long time. I knew that that word was like the others: just a shape to fill a lack.
Words, of course, do not need to be empty. Just as good record keeping and data sharing need not be formal, ‘tick-boxical’. We hope this project will live up to its word and enable better coordinated, higher quality and more equitable care at the end of life, more congruent with patients’ wishes. We are open to hear of more ways how.
If you are interested in the Cambridgeshire & Peterborough Project for Data Sharing in End of Life Care, please contact its Clinical Lead, Dr Stephen Barclay at firstname.lastname@example.org, or its Project Manager, Ian Merrick at email@example.com.
If you are interested in the research study or want to comment on this blog, please contact Mila Petrova at firstname.lastname@example.org.
We are also organising a conference on Electronic Palliative Care Coordination Systems on 2nd July 2015 at the Cambridge Institute of Public Health. If you are interested in learning more about it, please contact Angela Harper at email@example.com.