Quality Standards
Issued: August 2011 (last modified: October 2013)
QS13

Quality standard for end of life care for adults

Introduction and overview

October 2013. Update following the review of the Liverpool Care Pathway

Following the independent review of the use of the Liverpool Care Pathway (LCP) for the dying patient and the subsequent announcement of the phasing out of the LCP, interim amendments have been made to this quality standard. Direct and indirect references to the LCP have been removed to reflect the gradual phasing out of the LCP and ensure that this quality standard remains current. This quality standard will be reviewed following the outcome of the work of the Leadership Alliance for the Care of Dying People.

This quality standard covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life. This includes adults who die suddenly or after a very brief illness. The quality standard does not cover condition-specific management and care, clinical management of specific physical symptoms or emergency planning and mass casualty incidents.

It sets out markers of high-quality care for adults aged 18 years and older with advanced, progressive, incurable conditions; adults who may die within 12 months; and those with life-threatening acute conditions. It also covers support for the families and carers of people in these groups.

It is not expected that each quality statement will apply to all groups. Similarly, some quality statements may need special consideration when applied to certain groups. For example, people with dementia may need to participate in advance care planning significantly earlier in the pathway than people with cancer.

Introduction

Approximately 500,000 people die in England each year. People with advanced life threatening illnesses and their families should expect good end of life care, whatever the cause of their condition.

In addition to physical symptoms such as pain, breathlessness, nausea and increasing fatigue, people who are approaching the end of life may also experience anxiety, depression, social and spiritual difficulties. The proper management of these issues requires effective and collaborative, multidisciplinary working within and between generalist and specialist teams, whether the person is at home, in hospital or elsewhere. Information about people approaching the end of life, and about their needs and preferences, is not always captured or shared effectively between different services involved in their care, including out of hours and ambulance services.

Families, including children, close friends and informal carers, also experience a range of problems at this time. They play a crucial role and have needs of their own before, during and after the person's death: these too must be addressed.

Many people receive high-quality care in hospitals, hospices, care homes and in their own homes but a considerable number do not. Up to 74% of people say they would prefer to die at home[1], but currently 58% of people die in hospital[2]. There is considerable geographical variation. On average, people have 3.5 admissions to hospital in their last year of life, spending almost 30 days in bed in hospital[3].

This quality standard provides health and social care workers, managers, service users and commissioners with a description of what high-quality end of life care looks like, regardless of the underlying condition or setting. Delivered collectively, these quality statements should contribute to improving the effectiveness, safety and experience of people approaching the end of life, and their families.

This quality standard describes high-quality care that, when delivered collectively, should contribute to improving the effectiveness, safety and experience of care for adults approaching the end of life and the experience of their families and carers. This will be done in the following ways, regardless of condition or setting:

  • Enhancing quality of life for people with long-term conditions.

  • Ensuring that people have a positive experience of (health) care.

  • Treating and caring for people in a safe environment and protecting them from avoidable (healthcare-related) harm.

The NHS Outcomes Framework 2011/12 is available from www.dh.gov.uk

The quality standard is also expected to contribute to the following overarching outcome(s) for people approaching the end of life:

  • The care that people approaching the end of life receive is aligned to their needs and preferences.

  • Increased length of time spent in preferred place of care during the last year of life.

  • Reduction in unscheduled care hospital admissions leading to death in hospital (where death in hospital is against their stated preference).

  • Reduction in deaths in inappropriate places such as on a trolley in hospital or in transit in an ambulance.

In addition, this quality standard should contribute to:

  • Enhancing quality of life for people with care and support needs.

  • Delaying and reducing the need for care and support.

  • Ensuring that people have a positive experience of (social) care and support.

  • Safeguarding adults whose circumstances make them vulnerable and protecting them from avoidable harm.

Transparency in outcomes: a framework for quality in adult social care – The 2011/12 Adult Social Care Outcomes Framework is available from www.dh.gov.uk

It is important that the quality standard is considered by commissioners, health and social care professionals and patients alongside current policy and guidance documents listed in the evidence sources section, including: End of life care strategy: promoting high quality care for all adults at the end of life (Department of Health 2008) and End of life care strategy: quality markers and measures for end of life care (Department of Health 2009).

Overview

The quality standard for end of life care for adults requires that services are commissioned from and coordinated across all relevant agencies, including specialist palliative care, and encompass the whole end-of-life care pathway. An integrated approach to provision of services is fundamental to the delivery of high-quality care to people approaching the end of life and their families and carers.

This quality standard uses the following General Medical Council definition of people approaching the end of life from Treatment and care towards the end of life: good practice in decision making: People are 'approaching the end of life' when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

  • advanced, progressive, incurable conditions

  • general frailty and coexisting conditions that mean they are expected to die within 12 months

  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition

  • life-threatening acute conditions caused by sudden catastrophic events.

Given this, any palliative care within the last 12 months of life is regarded as end of life care. It is recognised that some people will benefit from palliative care before this time. Palliative care before the last 12 months of life is not included in this definition of end of life care and is therefore outside the scope of this quality standard.

Providing end of life care should be an integral part of every health and social care worker's role. However for many, such care is likely to form only a small part of their workload. Many of these professionals are 'generalists' (GPs, community nurses and hospital medical and surgical staff, for example), recognising that some generalists will have a greater role in providing end of life care than others (such as care home workers). Palliative medicine is a recognised medical specialty, requiring the equivalent of 4 years' specialist training. Other specialists will have received specific training and qualifications relating to end of life care, or acquired substantial practical experience. These specialists, who frequently dedicate all or most of their time to the care of people approaching the end of life, include:

  • palliative medicine physicians

  • palliative care specialist nurses

  • specialist allied health professionals

  • specialist social workers

  • counsellors and therapists[4].

NICE quality standards are for use by the NHS in England and do not have formal status in the social care sector. However, the NHS will not be able to provide a comprehensive service for all without working with social care communities. In this quality standard, care has been taken to make sure that any quality statements that refer to the social care sector are relevant and evidence-based. Social care commissioners and providers may therefore wish to use them, both to improve the quality of their services and support their colleagues in the NHS.

Subject to legislation currently before Parliament, NICE will be given a brief to produce quality standards for social care. These standards will link with corresponding topics published for the NHS. They will be developed in full consultation with the social care sector and will be presented and disseminated in ways that meet the needs of the social care community. As we develop this library of social care standards, we will review and adapt any published NICE quality standards for the NHS that make reference to social care.



[1] National Audit Office (2008) End of Life Care.

[2] National End of Life Intelligence Network (2010) Variations in place of death in England.

[3] National Institute for Health and Clinical Excellence (2011) End of life care quality standard: rationale for developing this quality standard.

[4] Definitions adapted from NICE cancer service guidance.