Commissioning guides
Published 01 October 2011

Services for people with chronic obstructive pulmonary disease

This is an extract from the commissioning guide. The complete commissioning guide is available at www.nice.org.uk/guidance/cmg43

4.3 Specifying supportive and palliative care for people with COPD

Commissioning supportive and palliative care for people with COPD, underpinned by NICE guidance, the NICE quality standard for COPD and NICE quality standard for end-of-life care, is likely to contribute to achieving outcomes under domain 4 of the NHS Outcomes framework 2011/12 by:

  • improving the experience of care for people at the end of their lives

  • enabling people to die in the place of their choice

  • developing a skilled workforce in supportive and palliative care.

The needs of people with advanced COPD are very different from those of people who are dying from cancer, including the difficulty of predicting prognosis[22]. COPD follows a progressive course causing death from respiratory failure or complications from associated diseases, which include coronary artery disease, lung cancer and stroke[23]. The pattern of decline is usually gradual but interspersed with episodes of acute ill health or severe breathlessness for months or years before death. Breathlessness is the main symptom of advanced COPD.

Deaths from respiratory disease: Implications for end of life care in England indicates that chronic lung diseases, which include COPD, account for 5% of all deaths in England. It states that COPD accounts for the majority of chronic lung disease deaths (85%; 67,253 deaths over the 3-year period 2007–9) and that COPD accounts for 48% of all deaths in England between 2007 and 2009. The report recommends that this highlights the need to focus particular attention on the needs of patients with COPD and the need to raise awareness of COPD as a life limiting condition.

The expert opinion of the Topic Advisory Group suggests that many people with COPD do not receive good end-of-life care. This is because it is often difficult to identify the stage at which a person with COPD is likely to die, and therefore difficult to predict when to begin to offer supportive and palliative care.

The End of Life Care strategy recommends a whole system approach to commissioning integrated services across the care pathway (see figure 1).

The NHS outcomes framework 2011/12 includes actions for end-of-life care as follows:

  • 4.33 The NHS should continue to ensure implementation of the 'End of life care strategy – promoting high quality care for all adults at the end of life', working to offer individuals the choice of where to be cared for as they approach the end of life, and where to die, regardless of their condition. It should ensure that staff are trained for this, including using the e-learning modules available as part of blended learning.

  • 4.34 The QIPP End of Life Care workstream is driving the first two steps on the strategy's end-of-life care pathway – identifying people as they approach the end of life and planning for their care, including asking about their preferences for care. Making that choice a real option requires implementation of the other strands of the strategy – commissioning the care people want, coordinating care across sectors and training the workforce to provide it. In particular, commissioners need to ensure that adequate 24/7 community services are available in their locality.

Commissioners should ensure that they are working towards the NICE quality standard on end-of-life care.

The key components of a care pathway for supportive and palliative care for people with advanced COPD are:

  • early recognition, assessment and care planning (see section 4.3.1)

  • advance care planning (see section 4.3.2)

  • continued intervention (see section 4.3.3)

  • coordination of care and access to a full range of services (see section 4.3.4)

  • care in the last days of life (4.3.5)

  • care and support after death (4.3.6).

4.3.1 Early recognition and assessment

NICE clinical guideline 101 recommends:

  • Patients with end-stage COPD and their family and carers should have access to the full range of services offered by multidisciplinary palliative care teams, including admissions to hospices. (Recommendation 1.2.12.10.)

Statement 13 from the NICE quality standard for COPD states:

Quality statement 13: Palliative care

People with advanced COPD, and their carers, are identified and offered palliative care that addresses physical, social and emotional needs.

To enable early recognition and assessment of the supportive and palliative care needs of people with COPD, commissioners should:

  • Work with clinicians to agree the indicators or triggers for advanced COPD, which can be used to identify when a person's supportive and palliative care needs should be assessed (see definitions under statement 13 of the NICE quality standard for COPD for examples).

  • Ensure end-of-life care is an integral component of the care plan of people with advanced COPD.

  • Be satisfied that primary care teams ensure that the palliative care needs of people with advanced COPD are regularly assessed, and that information is communicated within the primary care team. This includes out-of-hours services and other health and social care staff.

  • Be satisfied that a key worker is identified for people with advanced COPD and that the person, their family and carers know who their key worker is and how to contact them.

  • Ensure that information regarding long term oxygen therapy (see section 4.4.5), non-invasive ventilation and end-of-life care is made available for people with COPD, their families and carers while they are in a stable state. This is so that decisions regarding future care can be made in advance (for examples see Planning your future care: a guide and the End of Life Care Strategy).

Commissioners should consider the skills and competencies needed by health and social care staff to identify and address the supportive and palliative care needs of people with advanced COPD, for example:

  • communication skills

  • assessment and care planning

  • advance care planning

  • symptom management.

For further information commissioners may wish to refer to:

4.3.2 Advance care planning

It is important to offer discussions about advance care planning, which can result in a range of outcomes, such as preferred priorities for care, an advance decision to refuse treatment, and/or appointment of a legal power of attorney.

Advance care planning should be high quality and in line with legislation and best practice, therefore commissioners should:

  • expect providers to record the number of patients with COPD who have a care plan in place for supportive and palliative care

  • expect providers to demonstrate that care planning addresses the holistic needs of people with advanced COPD, including psychological and social needs and financial help, for example access to benefits and entitlements

  • expect providers to demonstrate that a carer's assessment is offered to carers of people with advanced COPD

  • specify that providers involved in the care of people with advanced COPD are aware of legislation regarding end-of-life care and follow, in particular, the provisions of the Mental Capacity Act 2005

  • ensure that advance care planning includes 'preferred priorities for care' to enable people with COPD to plan their preferred place of death if they choose (see Advance care planning: a guide for health and social care staff)

  • be aware that although it is important that people with advanced COPD are supported to make informed decisions and offered the opportunity to discuss their future care, some may chose not to do so and this should be respected

  • be satisfied that a key worker is identified for people with advanced COPD and that the person, their family and carers know who their key worker is and how to contact them

  • ensure people with advanced COPD are able to discuss and agree decisions regarding future care should they wish – for example, Advanced Decisions to Refuse Treatment (ADRT) and Decisions relating to cardiopulmonary resuscitation – and that the infrastructure is in place to make this information available to relevant services – for example, the ambulance service and out-of-hours services.

4.3.3 Continued intervention

People with advanced COPD should continue to have access to appropriate interventions when nearing the end of life. Pharmacological management (see section 4.4.4), long term oxygen therapy (see section 4.4.5) and non-invasive ventilation should continue in line with the recommendations in NICE clinical guideline 101.

In addition to pharmacological management, commissioners should ensure that people with COPD have access to ongoing non-pharmacological intervention and support, according to individual need, such as:

  • psychological support

  • physiotherapy, including strategies for coping with breathlessness and maintaining functional abilities

  • occupational therapy, for example energy-conservation techniques, equipment and adaptations

  • dietitian, including nutritional support

  • access to specialist teams when appropriate.

4.3.4 Coordination of care and access to a full range of services

Once assessment and care planning has taken place, services should provide coordinated care for people with advanced COPD. People with advanced COPD may require care from a range of services in a variety of settings, as described in chapter 4 of the 'End of life care strategy'. Therefore commissioners should:

  • Ensure that care pathways and services for end-of-life care for people with advanced COPD include access to palliative care teams, respite services, hospices, nursing homes and support to die at home (as appropriate).

  • Ensure that health and social care managers integrate working across all agencies involved in the treatment and care of people with advanced COPD. This includes jointly agreeing written policies and procedures (see 'Supporting people to live and die well: a framework for social care at the end of life' for information on integrated health and social care at the end of life).

  • Ensure that palliative care is well integrated with the chronic disease management provided by primary and community care teams.

  • Ensure that palliative care services work jointly with respiratory specialist teams, have access to specialist respiratory clinicians and agree clear local guidance on the role of specialist palliative care for people with advanced COPD.

  • Ensure that all staff working with people with COPD at the end of life, including in hospices, are competent in the provision of palliative care for people with COPD, including symptom control and disease-specific needs.

  • Expect providers to demonstrate that management of breathlessness for patients with end-stage COPD is in line with NICE clinical guideline 101.

Commissioners should ensure that integrated care coordination and delivery of care is available 24 hours a day, linking all agencies across geographic boundaries. This may include housing associations, care homes, the voluntary sector, and health and social care organisations, ensuring a high standard of care out-of-hours and rapid access to a person's preferred place of death.

Commissioners should assess unmet needs and the impact of supportive and palliative care services on local out-of-hours services, such as community nursing teams.

Commissioners should ensure a high standard of care out of hours. Commissioners should assess unmet needs and assess the impact of the supportive and palliative care services on out-of-hours services locally, such as community nursing.

More information on out-of-hours care is available from the Gold Standards Framework and the Macmillan out-of-hours toolkit available through the Macmillan learn zone (please note, you will need to register to use this toolkit).

End-of-life care for people with COPD is one pathway within a wider commissioning strategy for COPD or long term conditions. Therefore, to improve the quality of end-of-life care for people with COPD, commissioners should ensure that services:

  • provide access to earlier diagnosis and better information

  • create greater capacity and capability in the workforce

  • make care available closer to home.

Commissioners should also ensure that there is an informed and effective workforce in specialist as well as mainstream services. The level of skill and expertise should be proportionate to the level of contact that staff have with people with COPD. Commissioners should ensure that:

  • respiratory and primary care clinicians are competent in assessing palliative care needs

  • palliative care clinicians are competent in identifying a person's respiratory care needs.

Commissioners should ensure that people with COPD have access to good quality palliative care whether the cause of death is COPD, comorbidity or multiple comorbidities. Health and social care staff in hospitals, nursing homes and hospices should be able to identify when a person needs additional expert care for a comorbidity. A person receiving care and support for COPD should also have access to expert dementia care, cancer and/or cardiac care and pain control if needed.

Commissioners may also wish to refer to:

4.3.5 Care in the last days of life

Commissioners should ensure high-quality care is available during the last days of life, and ask providers to demonstrate that they are working towards achieving the NICE quality standard on end-of-life care (expected publication date late 2011) and the End-of-Life Care Strategy.

Commissioners should ensure that care in the last days of life is available 24 hours a day, including rapid access services, integrated delivery of care and care coordination across geographic boundaries. This may include:

  • access to medication

  • hospices

  • care homes

  • the voluntary sector

  • domiciliary home care

  • health and social care organisations, including domiciliary palliative care services

  • transport services.

People with advanced COPD should have access to a full range of services that enables them to die in their preferred place of death, if stated. Commissioners should ensure there is a choice of settings available locally as a place of death for people with advanced COPD, including home, hospice and hospital. Care pathways should be in place to enable this to happen, in accordance with the End-of-Life Care Strategy and the Operating Framework for the NHS in England 2011/12. See also the Liverpool Rapid Discharge Pathway.

4.3.6 Care and support after death

Expert opinion suggests that care after death, step 6 of the national end-of-life care pathway, is under-resourced in all clinical areas including COPD.

Commissioners may wish to consider the following:

  • ensure services are available to provide support to family and carers after death, for example bereavement support.

  • ensure there is access to spiritual care and chaplaincy services.

For further information see the End-of-Life Care Strategy. A number of resources on care after death are also available from the National End of Life Care Programme.

4.3.7 Service models

Quality, innovation, productivity and prevention

The End of Life Care workstream of the QIPP programme focuses on improving systems and practice for identifying people as they approach the end of life and planning their care. The aims of the workstream include helping clinicians know when and how to start the conversation about end-of-life care and supporting systematic care planning, including advance care planning, for people approaching the end of life.

Commissioners may wish to work with their local Quality, Innovation, Productivity and Prevention (QIPP) lead and develop service models for the supportive and palliative care for people with advanced COPD. Example models are included in table 2.

Table 2 Delivering QIPP through supportive and palliative care in COPD

QIPP model

Example output

Advance care planning

Increased number of people with COPD with an advanced care plan

Reduced number of inappropriate interventions – for example, cardiopulmonary resuscitation where an Advanced Decisions to Refuse Treatment (ADRT) or Decision relating to cardiopulmonary resuscitation is in place

Place of death

Increased proportion of people dying within their preferred place of death

Reduction in the number of inappropriate deaths within a hospital setting

Access to palliative care services 24 hours a day

Reduction in the number of hospital admissions where alternative care is in place

Increased proportion of people dying within their preferred place of death

Timely access to symptom control and medication

Use of recognised tools already developed, such as the Liverpool care pathway for the dying patient

Individualised care

Timely access to medication

Development of a skilled workforce across all services providing end-of-life care

Improved patient, family and carer satisfaction

Increased competency

See NHS evidence: QIPP for further examples.

Commissioning for quality and innovation

Commissioners may wish to consider working with clinicians when using the Commissioning for Quality and Innovation (CQUIN) payment framework as a lever for service change. For example:

Case studies

Commissioners may wish to consider delivering end-of-life care for people with COPD in a number of different ways. Examples of service models are provided in table 3 below.

Table 3 Examples of service models for the supportive and palliative care of people with COPD

A number of examples can also be found at National End of Life Care Programme and NHS Improvement lung.

(Please note – these examples are offered to share good practice and NICE makes no judgment on the compliance of this service with its guidance. Examples from NHS evidence QIPP collection have all been assessed against a set of criteria and then subject to an external peer review process. The best of these are highlighted on the NHS evidence website as 'highly recommended' examples.)



[22] Pinnock H, Kendall M, Murray S et al. (2011) Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. British Medical Journal 342: 142

[23] Heffer JE (2011) Advance care planning in chronic obstructive pulmonary disease; barriers and opportunities. Current Opinion in Pulmonary Medicine 17: 103–9