Project Duration
April 2012 - July 2014
Funder
NIHR Health Services and Delivery Research Programme
This project is supported by The University of Nottingham Dementia, Frail Older People and Palliative Care Patient and Public Advisory Group Panel.
Project Staff
- Kristian Pollock (PI) 1
- Eleanor Wilson 1
- Jane Seymour 1
- Karen Cox 1
- Tony Avery 1
- Vincent Crosby 2
- Greg Finn 3
- Helen Scott 4
Staff Institutions
- The University of Nottingham
- University Hospital NHS Trust, QMC, Nottingham
- John Eastwood Hospice, Sutton in Ashfield
- NHS Nottinghamshire County
Aims
To investigate how patients, informal carers and health professionals negotiate the initiation of Advance Care Planning (ACP) and the outcomes of discussion and planning for end of life care (EOLC) in terms of how closely expressed preferences for EOLC are realised.
ACP is a process whereby a patient, in consultation with health care providers, family members and important others, makes (and periodically reviews) decisions about future health care, should he or she subsequently become incapable of participating in treatment decisions. However, evidence suggests that ACP remains uncommon and very little is known about the timing, nature or quality of the EOLC discussions that occur between patients, carers and professionals.
Methods
The study was based in GP practices and community health services throughout Nottingham, Nottinghamshire and Bassetlaw and has two parallel workstreams.
- Professional Perspective Interviews: semi-structured interviews with health care professionals to explore their experience and perspectives of ACP and the EOLC Pathway
- Longitudinal patient-centred case studies: to investigate the experiences of initiation and implementation of ACP from the perspectives of patients, family carers and health professionals. The case studies were followed for approximately six months involving a series of interviews with patients, family carers and key health professionals as well as an analysis of relevant parts of patients' medical records.
Outcomes and Findings
Workstream one – interviews were conducted with 37 health professionals (GPs n=12, Specialist nurses n=9, Community Matrons n=6, Community nurses n=5, Palliative care nurses n=3 and Allied health professionals n=2).
Workstream two – a total of 21 patients was recruited to take part in the case studies (male n=12, female n=9, ranging between 38-92 years of age). In addition, 13 family carers and 14 health professionals contributed to the case studies. Patient cases were followed for a period of approximately six months resulting in a total of 97 interviews.
The project is now complete.