Triggers in advanced neurological conditions: prediction and management of the terminal phase
- 1Department of Palliative Care, St. Catherine's Hospice, Scarborough, UK
- 2Palliative Neurology Service, St. Catherine's Hospice, Scarborough, UK
- 3Department of Health Sciences, Hull York Medical School, York, UK
- Correspondence to Dr Jamilla Hussain, Palliative Care Team, Robert Ogden Centre, Leeds Teaching Hospitals’ NHS Trust, St. James’ University Hospital, Beckett Street, Leeds, West Yorkshire LS9 7TF, UK;
Context The challenge to provide a palliative care service for individuals with advanced neurological conditions is compounded by variability in disease trajectories and symptom profiles. The National End of Life Care Programme (2010) recommended seven ‘triggers’ for a palliative approach to care for patients with advanced neurological conditions.
Objectives To establish the frequency of triggers in the palliative phase, and if they could be reduced to fewer components. Management of the terminal phase also was evaluated.
Method Retrospective study of 62 consecutive patients under the care of a specialist palliative neurology service, who had died. Principle component analysis (PCA) was performed to establish the interrelationship between triggers.
Results Frequency of triggers increased as each patient approached death. PCA found that four symptom components explained 76.8% of the variance. These represented: rapid physical decline; significant complex symptoms, including pain; infection in combination with cognitive impairment; and risk of aspiration. Median follow-up under the palliative care service was 336 days. In 56.5% of patients, the cause of death was pneumonia. The terminal phase was recognised in 72.6%. The duration of the terminal phase was 8.8 days on average, and the Liverpool Care of the dying Pathway was commenced in 33.9%. All carers were offered bereavement support.
Conclusions Referral criteria based on the triggers can facilitate appropriate and timely patient access to palliative care. The components deduced through PCA have face validity; however larger studies prospectively validating the triggers are required. Closer scrutiny of the terminal phase is necessary to optimise management.
- Received 21 October 2012.
- Revision received 24 January 2013.
- Accepted 28 January 2013.
- Published Online First 19 February 2013
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions