Published 1 October 2008, doi:10.1136/bmj.a1720
Cite this as: BMJ 2008;337:a1720

Research

Making a difference

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Cathy Shipman, senior research fellow1,2, Marjolein Gysels, senior research fellow1, Patrick White, clinical senior lecturer2, Allison Worth, research fellow3, Scott A Murray, professor of primary palliative care3, Stephen Barclay, Macmillan clinical fellow4, Sarah Forrest, academic GP registrar4, Jonathan Shepherd, research associate5, Jeremy Dale, professor of primary health care5, Steve Dewar, director of funding and development6, Marilyn Peters, research coordinator2, Suzanne White, research associate2, Alison Richardson, professor of cancer and palliative nursing care7, Karl Lorenz, assistant professor8, Jonathan Koffman, lecturer1, Irene J Higginson, professor of palliative care and policy1

1 King’s College London, Department of Palliative Care, Policy and Rehabilitation, Weston Education Centre, London SE5 9RJ, 2 King’s College London, Department of General Practice and Primary Care, London SE11 6SP, 3 Primary Palliative Care Research Group, University of Edinburgh, Edinburgh EH8 9DX, 4 General Practice and Primary Care Research Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge CB2 2SR, 5 Centre for Primary Health Care Studies, Warwick Medical School, University of Warwick, Coventry CV4 7AL, 6 King’s Fund, London W1G 0AN, 7 King’s College London, Florence Nightingale School of Nursing and Midwifery, London SE1 8WA, 8 VA Greater Los Angeles Healthcare System, School of Medicine, University of California, Los Angeles, CA 90073, USA

Correspondence to: Catherine.shipman{at}kcl.ac.uk

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care.

Design A national consultation and prioritising exercise using a modified form of the nominal group technique.

Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups.

Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland.

Results 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer.

Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.


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