Project Duration
October 2011 - October 2013
Funder
Marie Curie Cancer Care
Project Staff
- Jane Seymour (PI) 1
- Eleanor Wilson 1
- Jayne Brown 2
- Hazel Morbey 3
- Sheila Payne 3
- Clive Seale 4
Staff Institutions
- The University of Nottingham
- De Montfort University, Leicester
- University of Lancaster
- Brunel University, London
Aims
To determine the roles and experiences of community nurses in end of life medication decisions, using sedation in end of life care as an exemplar.
Study Overview
This study examined community nurses' work with 'just in case' or 'anticipatory prescriptions' (APs). It had three phases:
- A literature review
- A qualitative study in four community teams and four care homes
- A survey of 1558 community nurses and care home nurses.
The study took place in the Midlands, Lancaster and South Cumbria.
Methods
Phase 1 - Literature Review
We reviewed published research, finding 26 studies from 10 countries. A key finding was that many nurses feel they have great responsibility for end of life care but not enough power to influence care. Please see the link to this publication.
Phase 2 - Qualitative Ethnographic Study
We completed 72 interviews (district nurses (n=27), specialist palliative care nurses (n=18), nursing home nurses (n=16), doctors (n=8), pharmacists (n=3), and 83 periods of observation. A key finding was that nurses identified that four ‘conditions’ must be met before administering an AP: a) patients’ symptoms due to the dying phase; b) patient unable to take oral medication; c) where the patient was able, they should consent; d) decision to be independent of requests from patient’s relatives. Nurses sometimes find the responsibility of deciding when and how to use APs difficult, needing support from those with specialist knowledge.
Phase 3 - Survey
The overall response rate was 37% (n=574), with categories of response: community (n=192/25%), care home (n=231/50%), specialist palliative care (n=151/48%). 84% (481/575) reported providing care to at least one person who had died in the past year, with 98% reporting that an AP was in place for at least one patient. Nurses believe APs improve the care they provide. A small proportion report difficulties: prescriptions incorrectly written up, obtaining drugs, reluctance in some doctors to provide such prescriptions.
Outcomes and Findings
A national initiative to build on areas of good practice and address difficulties will fulfil the potential of APs to improve end of life care.
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Publications
Wilson, E., Morbey, H., Brown, J., Payne, S., Seale, C., and Seymour, J. (2014) Administering anticipatory medications in end-of-life care: A qualitative study of nursing practice in the community and in nursing homes. Palliative Medicine, July 28th, Epub before print http://www.ncbi.nlm.nih.gov/pubmed/25070861
The literature review for the study has been published as a book chapter:
Wilson, E and Seymour, J (2013) Understanding the role of nurses in the management of symptoms and distress in the last days of life in Streckx, S; Raus, K and Mortier, F (eds) Continuous Sedation at the End of Life: Ethical, clinical and legal perspectives, Cambridge University Press, New York pp100-115