Date reviewed: 22-Oct-2009
1. Around half a million people die in England each year, of whom almost two thirds are aged over 75. The large majority of deaths at the start of the 21st century follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia. Most deaths (58%) occur in NHS hospitals, with around 18% occurring at home, 17% in care homes, 4% in hospices and 3% elsewhere.
[...]
4. Although every individual may have a different idea about what would, for them, constitute a ‘good death’, for many this would involve:
Being treated as an individual, with dignity and respect;
Being without pain and other symptoms;
Being in familiar surroundings; and
Being in the company of close family and/or friends.
[...]
7. In the past, the profile of end of life care within the NHS and social care services has been relatively low. Reflecting this, the quality of care delivered has been very variable. Implementation of this strategy will make a step change in access to high quality care for all people approaching the end of life. This should be irrespective of age, gender, ethnicity, religious belief, disability, sexual orientation, diagnosis or socioeconomic deprivation. High quality care should be available wherever the person may be: at home, in a care home, in hospital, in a hospice or elsewhere.' (1)
'4.101 In the Your health, your care, your say consultation people told us that they wanted the choice to die at home, although they also recognised that this might be difficult for the dying person's family, who would also need support. [...] 4.103 To allow this choice, we will establish end-of-life care networks, building on the co-operative approach suggested by the new urgent care strategy ... The networks will bring together primary care services, social services, hospices and third-sector providers, community-based palliative care services, as well as hospital services. This approach will build on pilots being undertaken with Marie Curie Cancer Care through the Delivering Choice Programme sites.' (2)
End of Life Care Programme (Department of Health)
End of life care initiative and End of life care policy pages (Department of Health)
NHS End of Life Care Programme
Common core competences and principles for health and social care workers working with adults at the end of life. (June 2009)
Commissioning end of life care. (December 2008)
Advance care planning: a guide for health and social care staff. (August 2008)
Promoting innovative end of life care practice within ambulance trusts. (October 2007)
Improving end of life care for adults: making change happen: case studies. (October 2007)
Building on firm foundations : improving end of life care in care homes : examples of innovative practice. (National Council for Palliative Care and NHS End of Life Care Programme, June 2007)
Introductory guide to end of life care in care homes. (National Council for Palliative Care and NHS End of Life Care Programme) [April 2006]
Palliative care pathways project: Brent and Harrow 2001-2006. (April 2006)
Department of Health
End of life care strategy: quality markers and measures for end of life care. (30 June 2009)
Transforming end of life care. (24 June 2009)
End of life care strategy: promoting high quality care for all adults at the end of life. (16 July 2008)
Survey of expenditure by Primary Care Trusts on Hospice/Specialist Palliative Care Services for the year 2006/07. (7 February 2008)
Operating framework 2007/08: PCT baseline review of services for end of life care. [24 April 2007]
End of Life Care strategy. (Dear Colleague letter) [8 February 2007]
Building on the best: end of life care initiative. (Dear Colleague letter) [1 July 2004]
Marie Curie Palliative Care Institute
10 step continuous quality improvement programme for care of the dying using the LCP framework. (April 2009)
Liverpool Care Pathway for the Dying Patient (LCP): goal definitions/data dictionary. (July 2008)
National care of the dying audit - hospitals: generic report 2006/2007.
Examples of best practice.
National Council for Palliative Care
Publications - subscription required
Free downloads
British Geriatrics Society
Palliative and end of life care of older people (guidelines) [September 2006]
Marie Curie Cancer Care: Delivering Choice Programme (describing its palliative care service improvement plan, via three flagship projects in Lincolnshire, Tayside and Leeds)
NHS Networks
Managing end of life care for people living in care homes in Croydon (pilot project)
| Reports and Consultation Documents |
Delivering better care at end of life. (The King's Fund, January 2010)
End of life care manifesto 2010. (National Council for Palliative Care, January 2010)
End of life care strategy: first annual report (Department of Health, 1 October 2009)
Response to the consultation on Quality Markers and measures for end of life care (Department of Health, 30 June 2009)
End of life care podcast, consultation and conference speeches (General Medical Council, 3 June 2009)
End of life care (National Audit Office, 26 November 2008)
Renal supportive and end of life care: a one day workshop organised by the Department of Health on Monday 14 April 2008. (Department of Health, 6 August 2008)
Impact assessment of the end of life care strategy. (Department of Health, 17 July 2008)
Improving choice at end of life: a descriptive analysis of the Marie Curie Delivering Choice Programme in Lincolnshire. (King's Fund, April 2008)
Improving environments for care at end of life: lessons from eight uk pilot sites. (King's Fund, April 2008)
Care provided by generalists at the end of life: scoping exercise on research priorities. (National Institute for Health Research, October 2007)
The End of Life Care Strategy for England : how the government could change the way we die. (Help the Hospices, September 2007)
Consultation on improving the process of death certification. (Department of Health, 24 July 2007; consultation closed on 24 October 2007)
End of life care strategy (National Council for Palliative Care) (1 August 2006)
NHS End of Life Care Programme: progress report March 2006 (Department of Health, March 2006)
Department of Health funded three year programme to train and support district and community nurses in the principles and practice of palliative care [outcomes of the training programme and brief DH summary of the findings of the King's College evaluation] [2006]
Listening to older people: opening the door for older people to explore end-of-life issues (Help the Aged) [2006]
Palliative care: perspectives for dying people (King's Fund) [March 2005]
Tackling cancer: improving the patient journey [part 3 concentrates on hospice provision and end of life choices] (National Audit Office) [25 February 2005]
Press releases:
Give patients guaranteed 24/7 care at the end of life. (The King's Fund, 27 January 2010)
Decisive action essential to prevent future crisis in care for dying people. (National Council for Palliative Care, 11 January 2010)
Doctors are no better than patients at facing up to personal end-of-life care. (The King's Fund, 19 November 2009)
New research projects on end of life care projects funded. (NIHR Service Delivery and Organisation programme, 15 June 2009)
£1m new funding for world's first end of life care research institute. (Department of Health, 22 August 2008)
£286m to improve end of life care for all. (Department of Health, 16 July 2008)
Dying patients and the bereaved to benefit from Department of Health investment in hospital environments. (Department of Health, 15 May 2008)
Patients wanting to die at home fear they won't get the care they need. (Marie Curie Cancer Care, 26 February 2008)
People at the end of life and the bereaved to benefit from investment in hospital environments. (King's Fund, 29 November 2007)
People should be helped to die at home, say experts. (Royal Society of Medicine, 2 May 2007)
News coverage:
GPs improve end-of-life care. (Pulse, 8 February 2010)
'Guarantee 24/7 care at end of life'. (Public Service, 27 January 2010)
GPs 'need support on end of life care'. (Pulse, 19 November 2009)
RCGP lobbies to create GPSI role in end-of-life care (Pulse, 26 October 2009)
£286m to help terminally ill to die at home 'lost in system' (The Times, 15 July 2009)
Changing NHS end of life care for the better (Health Service Journal, 19 June 2009)
Primary care trusts warned over misuse of end of life care cash (Health Service Journal, 14 May 2009)
Terminally ill denied death at home by failings in care system (The Times, 14 May 2009)
Care of terminally ill attacked (BBC, 13 May 2009)
Patient involvement: advance care planning gives peace of mind (Health Service Journal, 5 May 2009)
Cuts to enhanced services to fund end-of-life medicines (Healthcare Republic, 12 March 2009)
Doctors told to give more respect to wishes of dying patients (The Guardian, 6 March 2009)
Medics to get end of life advice (BBC, 6 March 2009)
Promise to improve care for dying. (BBC, 16 July 2008)
| Websites and other resources |
All Party Parliamentary Group on Dying Well
Dignity in care (Department of Health)
Gold Standards Framework Programme: a programme for community palliative care (NHS End of Life Care Programme)
Help the Hospices
Hospice information service (Help the Hospices)
International Observatory on End of Life Care
Liverpool Care Pathway for the Dying Patient (LCP) (Marie Curie Palliative Care Institute)
Map Foundation
National Council for Palliative Care
Omega, the National Association for End of Life Care
The Supporting the Choice to Die at Home campaign (Marie Curie Cancer Care)
| Articles and Parliamentary Reports |
Parliamentary Reports:
End of life care - nineteenth report of session 2008/09 (House of Commons Public Accounts Committee, 14 May 2009)
Health: palliative care [covering the assessment of the effectiveness of palliative care and on what basis decisions to fund additional services are taken] [31 January 2007] (House of Lords debate)
Provision of palliative care bill (Session 2006-07). (House of Commons private members' bill; progress of bill available)
Palliative care bill 2006-07. (House of Lords private members' bill; progress of bill available)
Articles:
Munday, David et al. Choice and place of death: individual preferences, uncertainty, and the availability of care. Journal of the Royal Society of Medicine, 2007; 100: 211-215 (May 2007)
Davison S, Simpson C, 2006, Hope and advance care planning in patients with end stage renal disease: qualitative interview study, BMJ, doi:10.1136/bmj.38965.626250.55 (published 21 September 2006)
Gunaratnam, Yasmin. End of life care for people from ethnic minorities. Community Care 2006; (1642): 36-37 (28 September 2006)
Gomes B, Higginson I, 2006, Factors influencing death at home in terminally ill patients with cancer: systematic review, BMJ, vol. 332, pp. 515-521 (4 March 2006)
End of life decisions (BMJ topics section, listing content, with links, from the journal)
Related resources:
Palliative care: key topic. (NHS Evidence - health management)
1. End of life care strategy: promoting high quality care for all adults at the end of life. (Department of Health, 16 July 2008)
2. Our health, our care, our say: a new direction for community services. (Department of Health, 30 January 2006)
