COPD is a disease which claims the lives of 25 000 people per year. For those who are within the last six to 12 months of life access to quality end of life services is essential to ensure that a patient’s specific care needs are addressed and their wishes around where and how they would like to be cared for are met.
Why?
In 2008, the Department of Health published the End of Life Care Strategy in response to the significant variation in service provision across the country.
Since then care pathways have been successfully developed for a number of potentially terminal illnesses, such as dementia, heart disease and stroke, however, COPD is rarely acknowledged as a leading cause of mortality Currently, less than fifty per cent of clinical services for COPD in the NHS have formal arrangement for users of these services to gain access to specialist end of life care.
What we’re doing
The end of life care workstream is exploring how patients with COPD within the last six to 12 months can be identified and subsequently managed appropriately through primary care. It is also looking at the education and training of respiratory staff to equip them to meet the needs of patients at this stage in the pathway of care.
What we’ve found so far
- Prognostic indicators such as GSF need to be studied more to determine whether they are of use in predicting whether a COPD patient is within the last six to 12 months of life. The ‘surprise’ question may be just as effective for clinicians
- Patients should have access to Advance Care Planning delivered by suitably trained respiratory staff
- Primary care registers need to increase the proportion of patients on end of life registers who have COPD to make sure these patients are put on end of life care pathways and have access to the right care at the right time
Next steps
We now want to understand how the end of life phase for COPD patients fits as part of the management of COPD as a long-term condition and how patients can be better managed through transitional stages.
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