Managing End-of-Life Services

Experience from England

Candy Cooley, Manager, National Genetics Education and Development Centre, England

For years, charities, hospices and small teams of specialist nurses and doctors held the monopoly of responsibility for end-of-life care. Recently, Primary Care (Community) services across England began to realise the importance of a coordination point for the development and management of services.

Around half a million people in England die each year from many differing conditions, the majority of whom are over 75. The personal and social care given to these patients and families forms a major part of the day-to-day work for many health, social and voluntary staff. However, it has been identified that too often care for this vulnerable group, is not coordinated effectively across the different service providers and is not designed around people’s wishes and preferences about the place of care and care delivery.

A recent review of healthcare by English National Health Service has clearly identified a number of areas where the lack of coordination and management of end-of-life care services led to a poor service for the patient and their families. It was observed that the current channels of communication within and among health, social and voluntary organisations are not swift enough to respond to the situation and ensure best care to the patients during the emergency situations which demand quick response.

Identifying the need
From the early part of the 21st century there have been a number of projects looking to improve the current provision of end-of-life services. These included education programmes on health and social care to increase the percentage of patients who received healthcare at home (DH 2001). The patients who are in their final stages of life are often placed in acute hospital setting, which is not only very expensive but also not conducive to the situation they are in. This is due to the lack of confidence in community teams to keep patients home, lack of support in an emergency in terms of primary medication, lack of ambulance services which help them in resuscitation and moving them to treatment centres and failure to provide rapid response service to deal with the needs of a dying patient.

The NHS in England: The operating framework for 2007/08 published in December 2006, set out local plan of action for Primary Care (Community) Trusts (PCTs) for future improvements in the provision of care for all. This included undertaking a local end-of-life care service baseline review in preparation for the development of an End-of-life Care Strategy. The strategy was part of its commitment to help all the end-of-life patients, whatever clinical condition they are in, to have their personal choice regarding the place of care and death.

The purpose of the review was to provide PCTs and local authorities with information that would enable them to:
• Assess the population need for end-of-life care services
• Identify current provision including an evaluation of quality
• Contrast the current provision with the identified population need
• Decide where service improvements are needed
• Be ready to respond to the end-of-life care strategy when published (DH2006)

Lord Darzi was asked by the Prime Minister and Secretary of State for Health to lead the NHS Next Stage Review (2008). Seventy-four clinical working groups including over 2000 clinicians were set up within individual SHA localities. The aim of each group was to consider both clinical evidence and the needs of the local community. The groups identified models of care for their areas to ensure that the NHS is up-to-date both clinically and to meet changing needs and expectations.

The review looked at primary areas within the health service to identify if new ways of working might improve patient outcomes and service provision. The End-of-life Care was considered as one of its key pathways, and the End of life Care strategy was to follow on from the review ensuring that the commitment became a reality.

End-of-life Care Strategy
Health Secretary Alan Johnson launched the End of Life Care Strategy with an allocation of funds worth £ 286 million in July 2008. The strategy aims to ensure that all adults with advanced, progressive illness receive care at a place of their own choice.The strategy was developed by an advisory board chaired by Professor Mike Richards, National Cancer Director, with stakeholders from health, social care, voluntary organisations and professional and academic organisations.

The stated goal of the strategy is for better quality care for patients by making it easier for individuals to voice their choice with regards to the place of care; promoting dignity and respect, ensuring well coordinated services and supporting carers.The new ten-year strategy, the first of its kind, continues and develops the progress made in end-of-life care services since 2000. Areas it focusses on include:

Improved community services - Asking PCTs working with Local Authorities to ensure that rapid response community nursing services are available in all areas 24/7. This will enable more people to be cared for and die at home if they wish

Workforce training and development - To train health and social care professionals in assessing the needs of patients and carers and providing the best possible quality care

Development of specialist palliative care outreach services - To encourage PCTs and hospices to work together to develop specialist services in the community, which will support all adults regardless of their condition

Setting up a national End-of-life Research initiative - To further understand how best to care for those at the end of their lives.

Quality Standards - To work with SHA Next Stage Review End-of-life Care to develop quality standards against which PCTs and providers can assess themselves and be assessed by regulators.

Care Pathways - Ensuring that there is documented evidence of the choices patients and their families make and the care that is given. (DH 2008)

Care pathways
Integrated care pathways have been utilised within care settings from the 1990s as a way of ensuring locally agreed, multi-professional care based on guidelines and the clinical evidence (Overill 1998). The completed pathway forms all or part of the clinical record and documents the care given. It also supports the evaluation of outcomes for continuous service improvements.
There are key common elements that constitute a care pathway:
• Organising the process
• Tracing the timeline
• Gathering supportive evidence of practice
• Ensuring multidisciplinary collaboration
• Care identified usually within an agreed time frame
• Continuous review of practice
• Assessment of variance
• Ensuring definite outcome
• Constituting all or part of the clinical record
• Providing complete information regarding risks and benefits (Overill 1998).

The Liverpool Care Pathway for the Dying Patient (LCP) (Ellershaw, Murphy 2005) was developed by staff working at Marie Curie services within an acute hospital and provides a research-based framework for the delivery of best practice care. The LCP encourages a multidisciplinary (MDT) approach to care delivery which focusses on the physical, psychological and spiritual comfort as this has been shown to empower generic staff in the delivery of care.

The LCP ensures that patient choices and care are documented and that the information is shared within the MDT. It also allows good evidenced / researched-based care to be identified if completed correctly. Research with patients at the end of their lives has been fraught with moral issues making it difficult to ensure not only best-evidenced practice but also a cost-effective management of resources to improve services.

The Gold Standards Framework (GSF 2001) is a systematic approach to improve the care for the end-of-life patients in the community. Originally developed for primary care by Keri Thomas (a General Practitioner with a Special Interest in Palliative Care and NHS National Clinical lead for Generalist Palliative Care), and supported by a multidisciplinary reference group of specialists and generalists, it aims to improve the care provided in the community by the patient’s usual community care team.

One of the key aims of the GSF is to develop community teams and service provision so that more patients are able to choose where they die, and avoid being admitted to hospital. This includes provision of other services such as equipment provision and ambulance response. GSF can evaluate the requirements and help them in better commissioning of local services.

• It is aimed at care for patients living at home and in Care Homes where they are supported by primary care teams
• It aims to educate and support community generalists (GPs, District/Community nurses, Care Home and other staff), to improve the interface with specialists and hospices
• GSF is for patients in the final stages of their lives and is applicable to patients with any advanced disease (heart failure, COPD, neurological disorders, renal failure etc.).

Once GSF is in place across a community, it enables developments in end-of-life services including specialised palliative care services which lead to improved outcomes for patients and cost-efficient advice for health commissioners.

The End-of-life Care Strategy for England has the potential to ensure equitable services for people dying from all conditions, including old age. However, to ensure the recommendations are implemented there needs to be a clear management strategy within the individual NHS Hospital and Community Trusts and Voluntary sector services that enables quick and effective communication to take place. It is imperative to ensure that a pathway of care is implemented properly and choices are documented. Each service needs to acknowledge that patient forms key to the care pathway and information regarding patient and family preferences and treatment decisions should be documented, shared and used accordingly.
According to this Strategy, the days are gone when decisions were made by health professionals or based on the availability of services. This will mean some radical changes to both the culture and provision of services for the dying and their families which need to be both well managed and receive adequate financing. These changing expectations by individuals, their families and health and social care practitioners are being seen as key aspect of healthcare in many ‘western’ countries where ‘care’ is emerging as an important indicator of clinical excellence along with ‘cure’.


Candy Cooley worked for over 14 years in an academic capacity teaching cancer and palliative care at undergraduate and post graduate level. She was the Consultant Editor of the International Journal of Palliative Care from 2004 until 2008. She also has a wide publication and conference presentation profile.

Department of Health (2001) NHS cancer plan: education and support for district and community nurses in the principles and practice of palliative care education initiatives funded under this programme, July 2001.

Department of Health (2006) The NHS in England: operating framework for 2007-08. December. London.

Department of Health (2007) Promoting Inovative End of Life Care Practice within Ambulance Trusts. NHS End of Life Care Programme

Department of Health (2008) Advanced Care Planning a guide for health and social care staff. 2nd Edition. NHS End of Life Care Programme/University of Nottingham.

Department of Health (2008) End of Life Care Strategy - promoting high quality care for all adults at the end of life. Crown Copywrite, London.

Ellershaw, J, Murphy D (2005) Liverpool Care Pathway, Infliencing the UK national agenda on the care of the dying. International Journal of Palliative Nursing, Vol. 11, Iss. 3, 25 Mar, pp 132 – 134

Gold Standard Framework (2001). website: last accessed September 17th 2008.

Overill S (1998) A practical guide to care pathways. J. Integrated Care 2,93-8

Author Bio

Candy Cooley