1 Commissioning services for end of life care for adults

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1.1 Aims and scope

This guide aims to support commissioners of end of life care by:

  • providing support for the local implementation of the Department of Health End of Life Care Strategy and the NICE Quality Standard for end of life care for adults

  • supporting commissioners with Quality, Innovation, Productivity and Prevention (QIPP) priorities and signposting to case examples

  • supporting commissioning decisions on potential service reconfiguration for end of life care

  • supporting the commissioning of high quality, evidence-based care for people and their families

  • providing an interactive commissioning and benchmarking tool to help calculate and cost local service provision and identify cost savings

  • assisting with the preparation of a business case

  • highlighting relevant national priorities.

This guide includes the mapped areas of care for the NICE quality standard for end of life care for adults and covers settings in which care is provided by health and social care staff to adults (aged 18 years and older) approaching the end of life, and adults who die suddenly or after a very brief illness. It also includes support for the families and carers of people in these groups. This guidance does not include commissioning of condition-specific end of life care services and commissioners may wish to refer the NICE guides for commissioners on dementia, chronic obstructive pulmonary disease and heart failure, which provide condition-specific end of life care information.

This guide may be useful for various groups of commissioners, including:

  • integrated health and social care commissioning teams

  • health commissioners including those based within primary care clusters or emerging clinical commissioning groups

  • local authority commissioners with responsibility for social care

  • lead providers who sub-contract on behalf of commissioning organisations.

Lead commissioning arrangements may be appropriate if the commissioning population is small, or if an organisation provides services to more than one commissioner. These agreements need robust governance arrangements, and if they exist, they should link with existing networks[1]. End of life care involves a large number of third sector providers, notably hospices, and some are small organisations that could be unintentionally destabilised by changes in commissioning arrangements, including the impact of potentially having to work with multiple commissioning organisations. Consequently host commissioning may be particularly important in future years with the implementation of clinical commissioning groups.

1.2 Defining end of life

This commissioning guide uses General Medical Council's definition of end of life: 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.

Defining when a person needs end of life care is individual and dependent on the person's perspective and that of their health and social care professional[2]. It could be marked by diagnosis of a condition that has a poor prognosis, or by exacerbation of a long-term condition that has resulted in a sudden and marked deterioration in the person's physical health and independence. For others death is an unforeseen event, and in this situation coroner involvement can be important. End of life care needs coexist with other health and social care needs and are influenced by a person's religious, cultural and social circumstances. Consequently, end of life care services should be commissioned and delivered in an integrated and person-centred manner.

The complexities of defining when a person has entered the end-of-life phase means that, in practice, a group of people will need access to end of life services for a longer period than the final 12 months of life. Two notable groups are young adults and people with dementia. Advances in medical treatments means that many children, who would have died in childhood, now live into adulthood and consequently may need palliative care services for much longer than 12 months. In 2010 approximately 2,500[3] children and young people aged 15–24 years died. Adult services might not meet the specific needs of young adults therefore commissioners may also wish to consider the needs of this specific group when planning services for adults. Also, in the NICE guide for commissioners End of life care for people with dementia, the benchmark highlights that 66,000 people who die each year with dementia are likely to need end of life care before death and many of these people will need palliative and end of life services for much longer than 12 months.

1.3 Commissioning person-centred end of life care

The achievement of person-centered care can be hindered by the funding and commissioning levers that currently exist. For example, the indicator 'Proportion of deaths in usual place of residence' focuses on enabling more people to die in their usual place of residence and consequently a reduction in the proportion of deaths occurring unnecessarily in hospital. This indicator is based on consistent survey data showing that most people would choose to be cared for and to die at home. However, person-centered care is vital and needs services to find out about and act on individual preferences and changing circumstances rather than rigidly imposing any single model of care. If an acute hospital is the most appropriate place of death, then this should be supported, although it may appear to conflict with the target set. As the vignette in box 1 demonstrates, end of life care experiences are not linear and commissioners should guard against perverse incentives.

Box 1 Vignette

An 80 year old woman who has been living in a care home for the past year and has advanced chronic obstructive pulmonary disease (COPD) and diabetes. In the past 9 months she has had two hospital admissions for treatment of COPD exacerbations. Each time she has been discharged less well, and it has been agreed that she should probably not be readmitted next time she has an exacerbation. She is still mobile and enjoys using her walking frame to get around her room and the communal areas of the care home. She falls and fractures her hip and requires corrective surgery and pain relief. If she were not admitted to hospital to have her hip operated on, she would remain bedbound and adequate pain control would be difficult. With the woman's consent she is taken to hospital where the surgical team operate and provide pain-control. Two days after her surgery the woman starts to deteriorate and has a comfortable pain-free death in hospital.

In this situation, the woman needed surgical intervention independently of the plans for treating her COPD and hospital was the appropriate environment in which to ensure the woman had adequate pain control. Hence, although death in the usual place of residence may be the agreed goal, and may be achievable for many people who presently die in hospital, it is important to ensure that person-centered decisions are made.

1.4 The case for change

Just over 1% of people die each year. Around 455,000 people died in England in 2010, two-thirds of whom were 75 years of age or older[3]. Deaths in England and Wales are expected to rise by 17% from 2012 to 2030[4]. A large proportion of deaths are foreseeable, and a recent estimate suggests that approximately 355,000 people need good palliative care services every year but around 92,000 people are not being reached[5]. Despite some small improvements, there is still an enormous amount of progress needed to close the gap between preferred and actual place of death. Although 63% of people surveyed stated that home is their preferred place of death, in 2010 most deaths occurred in hospitals (53%) and only 21% occurred in the home with an additional 18% in care homes[6].

Traditionally, end of life care services have been orientated towards cancer care, however people with a whole range of other conditions including cardiovascular, respiratory, and neurological disorders and dementias should also be accommodated. In 2010 non-cancer related deaths accounted for over 70% of deaths[3]. Although the percentage and number of people with non-cancer diagnoses accessing specialist palliative care services has increased overall in the past 12 years, the proportions of people with conditions other than cancer who access these services still remains very low[7]. The proportions ranged from 10% for inpatient and home care specialist palliative care services to 25% for outpatient specialist palliative care services.

It is difficult to put an exact cost on end of life care because of different funding mechanisms and multiple providers.

Figure 1 Provision and funding of end of life care services

Figure 1 Provision and funding of end of life care services

Source: Hughes-Hallet T, Craft A and Davies C. (2011) Palliative Care Funding Review; Funding the Right Care and Support for Everyone figure 4, page 21

DH = Department of Health
DfE = Department for Education
DWP = Department for Work and Pensions
CLG = Department for Communities and Local Government
NHS = National Health Service
PCTs = Primary Care Trusts
LAs = Local Authorities

Analysis of payment by results funding demonstrates the costs of admissions ending in death are large. The commissioning and benchmarking tool highlights that in England in 2010–11 approximately 215,000 hospital admissions ended in death, the estimated average cost of an admission was £2,506 and the estimated total cost of acute admissions ending in death was over £520 million. The commissioning and benchmarking tool demonstrates that for all-cause admissions that result in death approximately 40% of people have a stay that is greater than 7 days.

Figure 2 Length of stay for hospital admissions ending in death in England and estimated average cost per admission for year ending March 2011

Figure 2 Length of stay for hospital admissions ending in death in England and estimated average cost per admission for year ending March 2011

Source: Analysis of data presented within the commissioning and benchmarking tool

Approximately 15% of admissions ending in death have a stay of more than 21 days and these admissions are very costly to the commissioner and are likely to be poor care experiences for the person, and their relatives and carers. Expert opinion suggests that such long stays are often the result of gaps in services and an inability to discharge. The National Audit Office found that in one primary care trust, 40% of people who died in hospital did not need to be treated in hospital, and nearly a quarter of these people had been in hospital for over a month[8].

The commissioning and benchmarking tool demonstrates that a 10% reduction in the number of admissions ending in death could potentially result in a saving of £52million. These savings can be invested in alternative, community-based end of life care services.

1.5 Measuring care quality

Emerging evidence suggests that redesigning local end of life care pathways to enable provision of high quality end of life care resulting in more people being able to die in their usual place of residence, rather than in hospital, is at worst cost neutral and has the potential to be a more efficient and effective use of resources[9],[10]. Commissioners and providers should note that emerging evidence is currently localised and although no single service model exists that all commissioners can simply apply, a range of models can guide service redesign according to local needs and circumstances.

End of life care is one of 12 national workstreams of the Quality, Innovation, Productivity and Prevention (QIPP) programme. The national end of life care QIPP worksteam concentrates on:

  • identifying people who are approaching the end of life

  • planning for their care.

Key performance indicators support the end of life care QIPP workstream and these are detailed in the End of Life Care Quality Assessment Tool (ELCQuA). ELCQuA is a free online tool for keeping track of progress in delivering end of life care services. It is aimed at commissioners and providers and includes the end of life care strategy, quality markers and measures for end of life care, the QIPP key performance indicators, Care Quality Commission prompts for end of life care and include the statements and measures of the NICE quality standard for end of life care for adults.

1.6 NHS outcomes framework and adult social care outcomes framework

Refer to the NICE quality standard 'End of life care for adults' when commissioning services that contribute to delivering the following outcomes:

NHS outcomes framework 2012/13:

  • Domain 2: enhancing the quality of life for people with long-term conditions.

  • Domain 4: ensuring that people have a positive experience of care. This includes indicator 4.6[11] which will be derived from the survey of bereaved relatives (see section 4.5.1 for further details)

  • Domain 5: treating and caring for people in a safe environment and protecting them from avoidable harm.

Adult social care outcomes framework

  • Domain 1: enhancing quality of life for people with care and support needs.

  • Domain 2: delaying and reducing the need for care and support.

  • Domain 3: ensuring that people have a positive experience of care and support.

  • Domain 4: safeguarding adults whose circumstances make them vulnerable and protecting from avoidable harm.

1.7 Key clinical and quality issues

Key clinical and quality issues in providing effective services for end of life care in adults are:

  • Reducing inequalities and improving identification through de-stigmatising death and dying and encouraging healthcare professionals and people with end of life care needs and their families and carers to engage in open conversations.

  • Improving the quality of care including care after death, through holistic assessments and timely interventions in the right place by a knowledgeable, caring and competent workforce.

  • Increasing choice and personalisation through care planning and advance care planning, including advance statements and advance decisions to refuse treatment and provision of resources that enable these choices to be achieved.

  • Ensuring care is coordinated and integrated across all sectors involved in delivering end of life care.

  • Improving the psychological, physical and spiritual well being of people with end of life care needs and their carers through access to an appropriately trained and resourced workforce

  • Timely access to information and support to enable people with end of life care needs and their families and carers to make informed decisions.

  • Timely provision of continuing NHS healthcare funding to support people to die in their place of choice.

  • Supporting carers and ensuring access to an assessment of need as set out in the Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act 2004.

  • Timely access to generalist and specialist palliative care services on the basis of need and not diagnosis. This includes the provision of community based support and access to specialist advice (which may be via telephone) 24 hours a day, 7 days a week.

  • Reducing unnecessary hospital admissions and length of stay by developing capacity to deliver expertise to the person's usual place of residence through pathway redesign and workforce development. This includes supporting staff in social care settings such as care homes and domiciliary workers; supporting relatives and friends who are caring for a person with end of life care needs; and providing the necessary clinical expertise, medicines and equipment.

  • Improving cross-boundary and partnership working, through close working between health and social care services to ensure flexible and integrated services that have the infrastructure to enable this (for example shared IT networks). This should improve care coordination, minimise unnecessary duplication and reduce costs.

  • Improving knowledge and skills in generalist and specialist palliative care settings, and in social care settings including independent residential and nursing homes and domiciliary workers.

[1] Further information about lead commissioner arrangements in end of life care is available in National End of Life Care Programme (2008) Information for commissioning end of life care

[3] Death registrations in England and Wales, selected data tables 2010, Office for National Statistics (ONS), 2011, London

[4] Gomes B and Higginson I (2008) Where people die (1974–2030): past trends, future projections and implications for care. Palliative Medicine 22: p33–41

[6] Gomes B, Calanzani N and Higginson I (2011) Local preferences and place of death within regions within England 2010

[7] The National Council for Palliative Care and the National End of Life Care Intelligence Network (2009-10) National Survey of Patient Activity Data for Specialist Palliative Care Services

[8] National Audit Office (2008) End of life care

[11] Department of Health (2011) NHS Outcomes Framework 2012/13

  • NICE has accredited the process used by NICE to produce guides for commissioners. Accreditation is valid for 5 years from November 2011 and applies to guides produced since November 2008 using the processes described in 'Process manual for developing guides from NICE for commissioners: Information for internal NICE teams' (2011). More information on accreditation can be viewed at www.nice.org.uk/accreditation