Quality statement 5: Palliative care

Quality statement

People with idiopathic pulmonary fibrosis and their families and carers have access to services that meet their palliative care needs.

Rationale

Symptoms of idiopathic pulmonary fibrosis, such as debilitating cough, can be difficult to manage and have a negative effect on a person's quality of life. There is no cure for idiopathic pulmonary fibrosis except lung transplantation, which may not be possible. Medication to treat the symptoms of idiopathic pulmonary fibrosis may be ineffective. People with idiopathic pulmonary fibrosis at any stage (not just at the end of life), and their families and carers, can benefit from palliative care services for symptom management and control, psychological care and the provision of information. Access to services to meet palliative care needs will depend on people with idiopathic pulmonary fibrosis and their families and carers having an effective assessment of their needs.

Quality measures

Structure

Evidence of local arrangements to ensure that people with idiopathic pulmonary fibrosis and their families and carers have access to services that meet their palliative care needs.

Data source: Local data collection.

Process

a) Proportion of follow‑up appointments for people with idiopathic pulmonary fibrosis with a recorded assessment of their current palliative care needs (including the needs of families and carers, if appropriate).

Numerator – the number in the denominator at which the current palliative care needs (including the needs of families and carers, if appropriate) have been assessed.

Denominator – the number of follow‑up appointments for people with idiopathic pulmonary fibrosis.

Data source: Local data collection.

b) Proportion of people with idiopathic pulmonary fibrosis whose current recorded palliative care needs (including the needs of families and carers, if appropriate) are met.

Numerator – the number in the denominator whose current palliative care needs (including the needs of families and carers, if appropriate) are met.

Denominator – the number of people with idiopathic pulmonary fibrosis whose palliative care needs have been assessed.

Data source: Local data collection.

Outcome

Satisfaction of people with idiopathic pulmonary fibrosis, and their families and carers, with the support they receive to manage their condition.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (GPs, community nursing teams, hospitals and regional specialist centres) ensure the availability of services that meet the palliative care needs of people with idiopathic pulmonary fibrosis and, if appropriate, their families and carers.

Health and social care practitioners ensure that the palliative care needs of people with idiopathic pulmonary fibrosis (and their families and carers, if appropriate) are identified and are met by referral to the appropriate services. If specialist input is needed to ensure that these needs are met, the palliative care team can be involved.

Commissioners (NHS England through specialised services area teams and clinical commissioning groups) use collaborative commissioning to ensure that services offer people with idiopathic pulmonary fibrosis (and their families and carers, if appropriate) palliative care needs assessment and access to services that meet their palliative care needs.

What the quality statement means for patients, service users and carers

People who have idiopathic pulmonary fibrosis, and if they wish their families and carers, are offered services that help them manage and control the symptoms of idiopathic pulmonary fibrosis and provide psychological support and information about the condition.

Source guidance

Definitions of terms used in this quality statement

Palliative care needs

Palliative care is not only end of life care. It is an approach that improves the quality of life of patients and their families facing problems associated with serious illness. It is given as it is needed, including during the early stage of an illness, to identify, assess and treat pain and other problems. Palliative care services include (but are not limited to) self‑help and support, patient and carer involvement, information giving, psychological support, symptom management and control, social support, rehabilitation and spiritual support.

Palliative care may be needed at all stages of idiopathic pulmonary fibrosis from diagnosis. Palliation of symptoms relies on a multidisciplinary approach that includes input from primary care, the interstitial lung disease specialist nurse and, if needed, specialists in palliative care. People with idiopathic pulmonary fibrosis do not need to be referred to specialists in palliative care unless their needs cannot be managed by other healthcare professionals.

[Adapted from full guideline on idiopathic pulmonary fibrosis and expert opinion]