New resources launched to support early identification of patients at end of life

To enable GPs and primary care colleagues to more easily identify patients who are potentially in the last year of their life and support improved care planning, a new clinical search tool has been tested out by the Lancashire and South Cumbria Palliative and End of Life Clinical Network, in collaboration with colleagues across the North West and North East London.

The EARLY clinical search tool was first developed in Lancashire and South Cumbria by Dr Andrew Fletcher with the support of Midlands and Lancashire CSU. It uses clinical codes within EMIS and SYSTM1 to identify patients who could potentially benefit from individualised care planning to support improved end of life care.

EARLY is an acronym for:

• E - Early identification
• A - Advance care planning
• R - Record
• L - Look again (review and update preferences)
• Y - You can continually improve (mortality reviews, reflection and change in practice).

A total of 77 GP practices across the North West took part in the pilot. With input from colleagues in North East London, the refined EARLY clinical search tool is now available for General Practice to use.

GP colleagues who took part in the pilot and found the tool helpful have provided the following testimonies:

“(Following the EARLY project)... there has been a fundamental change to how our (palliative care) meeting is conducted. We have added the additional 69 new patients...we all agree that the only patients that need to be discussed are in the amber and red categories. Consequently, our meetings are more focused, and we have more time to discuss the individual patient’s needs. We have also changed our practice to include a discussion at the GSF meeting of all of those patients that have died in the time period between meetings including the deaths of patients not on the GSF to see if there are lessons to be learned and whether the opportunities for ACP meeting with the patients were missed. As individual clinicians, we are also individually becoming more experienced with using EpaCC.”

“As an individual clinician, I found the presentation about advance care planning (ACP) helpful in prompting me to discuss this opportunistically with patients, and it has given me more confidence to do so, particularly with patients without a cancer diagnosis.”

“The EARLY project... has made me much more aware that although as a practice we are good at palliative care and care planning for patients with cancer, it is the frail elderly patients and non-cancer patients who are slowly declining that I am less likely to discuss advanced care planning with, and therefore I aim to address this over time by being more proactive in discussions around advanced care planning with this group of patients.”

“Following review of the list of patients generated, I have added patients to the GSF who were appropriately flagged as possibilities. I have emailed GPs within the practice for their input for those I did not know clinically. Overall, it has reminded us that we need to consider more non-cancer diagnoses and aim to arrange more care plans.”

“As a result of the EARLY project, I have created pop up alerts which are activated at the start of a consultation for patients that have an outstanding CPR status/PPC/PPD. These act as a reminder for the clinician. I plan to create a similar alert for those patients identified by the EARLY tool who may be appropriate for ACP – this enables the clinician who knows the patient best/has recent contact with the patient to begin this process.”

“I feel we have had benefit from the EARLY project... in particular; expanding our GSF to include non-cancer patients, taking more ownership around ACP, a useful discussion around why we don’t do more ACPs and different ways to look to mitigate these factors.”

“As the lead GP for a care home, I decided that a good place to start would be there. I worked with... a 23 bedded unit for dementia patients. I engaged the staff in starting to advance care plan for all their residents… they engaged with families of residents to start (care planning) ... and I would then arrange a discussion with the family subsequently to look at things from a medical perspective. I think not only has this changed my practice, but it has started to change the homes outlook on inappropriate hospital admissions too. We had a case last week where the ACP prevented an unnecessary hospital admission for one of the residents, which we were all thrilled about.”

Dr Andrew Fletcher, Consultant in Palliative Medicine at Lancashire Teaching Hospitals NHS Foundation Trust, Medical Director at St. Catherine’s Hospice, Preston and Clinical Lead for the Lancashire and South Cumbria Early Identification Project, said:

“We know that early identification is difficult – trying to predict when someone may be in the last 12 months of their life is not an exact science. Building on the existing guidance and indicators available, the EARLY tool links with electronic patient records to provide a list of patients who may benefit from individualised care planning, for GPs and primary care colleagues to review and work collaboratively with patients, their families and health and social care colleagues to develop plans.

We know that if we can identify patients early enough, we can engage in advanced care planning discussions and start to explore their wishes and preferences for their care now, and also when they are approaching the end of life. By also engaging patients’ families and loved ones in these conversations and sharing information, we stand the best chance of being able to achieve patients’ wishes when they are dying.

As well as the search tool we have produced a toolkit with colleagues from North East London which contains a range of supportive resources and guidance on how to embed the tool and early identification into practice.”

Dr Peter Nightingale, GP Lead for Lancashire and South Cumbria Palliative and End of Life Clinical Network, said:

“The COVID-19 pandemic has not only transformed the way in which Primary Care has had to operate, but also highlighted the challenges in identifying those patients who may be approaching the end of their lives. The EARLY tool helps to identify more patients where the offer of personalised and advance care planning maybe appropriate.

In relatively recent times many GP Supportive and Palliative Care Registers tended to include mostly patients with advanced cancer, and the total number of patients on the register was well below the approx. 80% of deaths which could probably be anticipated. The pandemic has highlighted the need to include more patients with multimorbidity, frailty and dementia on our registers so that they have the opportunity for more proactive care delivered in line with their preferences. The EARLY tool can help with this process.”

Talib Yaseen OBE, Executive Director of Transformation for Lancashire and South Cumbria Integrated Care System, said:

“The development of the EARLY tool is an excellent example of innovative and collaborative working.

The EARLY tool is not only important to help GPs to identify patients – it will also help health and care organisations to ensure that people are involved in the planning of their end of life care and that it has a personalised approach.

Whether you are receiving end of life care at home, in a care home, hospice or hospital – everyone has a right to express their wishes about where they would like to die. We want everyone to be able to live well before they die, in the place of their choice, in peace and dignity.”

If you are interested in receiving the EARLY toolkit and resources, please contact the Lancashire and South Cumbria Palliative and end of Life Care Clinical Network by emailing: lucy.lavelle2@nhs.net.