Learning from national projects
A final improvement guide on the learning from the national improvement projects on end of life in COPD will shortly be published in full. Three sites have been working on projects that have ranged from prognostic indicators to staff training in Advance Care Planning. At the mid point of their work, the project teams identified issues, challenges, some solutions and some additional questions.
While there may not be answers to all the issues at this point, there are some common themes that identify priorities for further work or can guide other teams in determining how to progress their own work. These include:
Prognostic indicators
Two types of prognostic indicator have been tested: the Gold Standard Framework PIs and the BOD (Body Mass Index, Obstruction and Dyspnoea combined score) which is an adaptation of the BODE index (Celli et al: 2004) minus the Exercise test score. The GSF indicators appear to need at least 3 or more to be present to predict possible end of stage of life. With BOD, the threshold score for patients suggests a transitory phase between active management of COPD as a long-term condition and the end of life.
The ‘surprise’ question ie Would you be surprised if this patient dies within the next six months? has been found to be accurate in the majority of cases where it was posed.
Advance care planning
Use of Advance Care Planning documentation helps a patient understand more about what to expect from their condition as time continues as well as giving them the opportunity to express wishes about care, such as Do Not Attempt Resuscitation, and Preferred Priorities for Care around place of care.
There are numerous professionally produced written documents available for staff to use with patients – see the links below:
National End of Life Care Programme
National Council for Palliative Care
Use of primary care registers
In order for patients to access the care they need at end of life COPD patients in GP practices need to be identified and transferred onto the practice end of life register when this becomes appropriate. Currently the national average of COPD patients on end of life registers is approx 14%.
Staff awareness and training
Death and dying is an incredibly sensitive topic and is a difficult area for many COPD patients and respiratory staff to talk about. The awareness of COPD as a potentially terminal illness amongst the public and the need for respiratory staff to feel competent and trained to manage the issues of COPD patients at end of life is essential.
Using data to make a difference
Coding consistently is essential. Identifying patients with COPD at end of life means you can pick up patients who are beginning to deteriorate.
If you have access to and use appropriate information you can target and record:
- Patients with COPD who need to be added to the primary care end of life register and subsequently put on an appropriate end of life care pathway to allow access to palliative care
- Patients who have been given the opportunity to complete Advance Care Planning and how many achieved their Preferred Priorities for Care eg place of death
See our guide to data for lung improvement projects for more information on where to find the data you need and how to use it in a meaningful way.
More information:
For more information on this workstream contact:
Hannah Wall
National Improvement Lead
Lung Improvement Programme
NHS Improvement
Mobile: 07920845437
Email: hannah.wall@improvement.nhs.uk