Quality standard

Quality statement 1: Assessing signs and symptoms

Quality statement 1: Assessing signs and symptoms

Quality statement

Adults who have signs and symptoms that suggest they may be in the last days of life are monitored for further changes to help determine if they are nearing death, stabilising or recovering.

Rationale

By continuing to assess signs and symptoms that suggest someone is in the last days of their life, responsive and compassionate care can be provided to ensure that the person is as comfortable as possible if their condition continues to deteriorate. Recognising and assessing indications that someone is in the last days of life can be complex, and sometimes people have ambiguous and conflicting signs and symptoms. People can show signs of recovery, which may continue or which may be temporary. Uncertainty can be reduced by seeking advice from those experienced in providing end of life care, such as specialist palliative care teams.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

a) Evidence of local arrangements and systems to ensure that it is recognised when an adult may be entering the last days of life.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on recognising adults may be entering the last days of life.

b) Evidence of local arrangements and systems to monitor signs and symptoms of adults thought to be in the last days of life, and to review changes in a person's condition to help determine if they are nearing death, stabilising or recovering.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.

Process

a) Proportion of adult deaths with documented evidence that it was recognised that the person was in the last days of life.

Numerator – the number in the denominator in which the care records show it was recognised that the adult was in the last days of life.

Denominator – the number of adult deaths.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from GP and community nurse patient records for people cared for outside of hospital. The National Audit of Care at the End of Life: dying in hospital collects hospital level information on when recognition that a patient might die is first documented and the date of death.

b) Proportion of adults recognised as being in the last days of life with documented evidence that their signs and symptoms were monitored at least daily.

Numerator – the number in the denominator in which the care records show evidence of monitoring of signs and symptoms at least daily.

Denominator – the number of adults recognised as being in the last days of life.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from audits of patient records. The National Audit of Care at the End of Life: dying in hospital collects information on whether there is documented evidence that a hospital patient's symptoms were reviewed daily.

Outcome

Proportion of adults thought to be in the last days of life given care appropriate to whether they were nearing death, stabilising or recovering.

Data source: Data can be collected locally by healthcare professionals and provider organisations, for example, from audits of patient care records and individualised care plans.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and district nursing services) ensure that systems and procedures are in place to identify adults who may be in the last days of life and to monitor for changes in their signs and symptoms. They also ensure that staff experienced in end of life care are available to offer advice to less experienced colleagues.

Healthcare professionals (such as secondary care doctors, nurses, GPs, hospice doctors and district nurses) assess adults for signs and symptoms that may suggest a person is in the last days of life, and use the assessments and other information gathered from the person, those important to them and those providing care to them to help determine whether the person is nearing death, deteriorating, stable or improving. They continue to monitor for changes in signs and symptoms, including the possibility of stabilising or recovering, and review the recognition that a person may be dying. If there is uncertainty, they seek advice from colleagues with more experience of providing end of life care.

Commissioners use contractual and service specification arrangements to ensure that providers identify adults who may be in the last days of life and monitor them for further changes.

Adults who are thought to be dying are checked at least once a day for symptoms and changes that might show that they are nearing death, and also for signs that their condition is stable or might be improving, so that they can be given the right care.

Source guidance

Care of dying adults in the last days of life. NICE guideline NG31 (2015), recommendations 1.1.2, 1.1.3 and 1.1.6

Definitions of terms used in this quality statement

Signs and symptoms

Signs and symptoms that suggest a person may be in the last days of life include:

  • signs such as agitation, Cheyne–Stokes breathing, deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss

  • symptoms such as increasing fatigue, reduced desire for food and fluid, and deterioration in swallowing function

  • functional observations such as changes in communication, deteriorating mobility or performance status, or social withdrawal.

[Adapted from NICE's guideline on care of dying adults in the last days of life, recommendation 1.1.2]

Monitored for further changes

Assessment of changes in the person, including their signs and symptoms, with specialist advice sought when there is a high level of uncertainty because of conflicting results. Assessment occurs at least every 24 hours, but more frequent assessment may be needed because symptoms can change quickly. The use of the word 'monitored' does not necessarily imply use of equipment or invasive tests; changes in signs and symptoms can be gathered from talking with, observing and examining the person. [Adapted from NICE's guideline on care of dying adults in the last days of life, recommendation 1.1.6]