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End of life care for people with life-limiting conditions

About

What is covered

This interactive flowchart covers organising and delivering end of life care services for adults approaching the end of their life, the clinical care of adults who are dying during the last 2 to 3 days of life, as well as the planning and management of end of life care for children and young people.
End of life care includes the care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this.
The guidance in this flowchart aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers. It aims to improve end of life care for adults in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. It includes recommendations on how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.
The guidance also addresses the physical, emotional, social and spiritual elements of end of life care for a child or young person, focusing on improving their quality of life and supporting their family. There are, for instance, recommendations on managing distressing symptoms and providing care and bereavement support after death as well as on how services should be delivered.

Updates

Updates to this interactive flowchart

2 September 2021 End of life care for adults (NICE quality standard 13) updated.
15 October 2019 Recommendations on end of life care for adults: service delivery (NICE guideline NG142) added.
25 July 2019 Updated footnote in pain in managing physical distress and discomfort for a child or young person at the end of life to reflect a change in the law relating to gabapentin.
11 September 2017 End of life care for infants, children and young people (NICE quality standard 160) added.
13 March 2017 End of life care for adults (NICE quality standard 13) updated.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said about the care of people with a progressive life-limiting condition who are at the end of their life in an interactive flowchart

What is covered

This interactive flowchart covers organising and delivering end of life care services for adults approaching the end of their life, the clinical care of adults who are dying during the last 2 to 3 days of life, as well as the planning and management of end of life care for children and young people.
End of life care includes the care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this.
The guidance in this flowchart aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers. It aims to improve end of life care for adults in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. It includes recommendations on how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.
The guidance also addresses the physical, emotional, social and spiritual elements of end of life care for a child or young person, focusing on improving their quality of life and supporting their family. There are, for instance, recommendations on managing distressing symptoms and providing care and bereavement support after death as well as on how services should be delivered.

Updates

Updates to this interactive flowchart

2 September 2021 End of life care for adults (NICE quality standard 13) updated.
15 October 2019 Recommendations on end of life care for adults: service delivery (NICE guideline NG142) added.
25 July 2019 Updated footnote in pain in managing physical distress and discomfort for a child or young person at the end of life to reflect a change in the law relating to gabapentin.
11 September 2017 End of life care for infants, children and young people (NICE quality standard 160) added.
13 March 2017 End of life care for adults (NICE quality standard 13) updated.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Care of dying adults in the last days of life (2017) NICE quality standard 144
End of life care for adults (2011, updated 2021) NICE quality standard 13

Quality standards

Care of dying adults in the last days of life

These quality statements are taken from the care of dying adults in the last days of life quality standard. The quality standard defines clinical best practice for care of dying adults in the last days of life and should be read in full.

End of life care for adults

These quality statements are taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

End of life care for infants, children and young people

These quality statements are taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statements

Assessing signs and symptoms

This quality statement is taken from the care of dying adults in the last days of life quality standard. The quality standard defines clinical best practice in the care of dying adults in the last days of life and should be read in full.

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

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: Local data collection.
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: Local data collection.
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: Local data collection. National and trust level data on people who died in hospital for whom it was recognised that they would probably die in the coming hours or days are reported in the Royal College of Physicians’ End of life care audit – Dying in hospital report for England.
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: Local data collection based on audits of patient care records.
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: Local data collection based on 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 (such as clinical commissioning groups) 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 (2015) NICE guideline NG31, 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]

Individualised care

This quality statement is taken from the care of dying adults in the last days of life quality standard. The quality standard defines clinical best practice in the care of dying adults in the last days of life and should be read in full.

Quality statement

Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan.

Rationale

Care at the end of life should be responsive to the personal needs and preferences of the person who is dying. Discussions with the person can identify any existing expressed preferences for care, such as advance care plans, and explore their goals and wishes, preferred care setting, current and anticipated care needs and any cultural, religious or social preferences. This information will be captured in an individualised care plan. Opportunities for discussion should continue to be given so the plan can reflect any changes in the person’s wishes or needs in the last days of their life.

Quality measures

Structure
a) Evidence of local arrangements to ensure that adults in the last days of life, and the people important to them, are given opportunities to discuss and develop individualised care plans.
Data source: Local data collection.
b) Evidence of local arrangements to ensure that adults in the last days of life have their individualised care plans reviewed.
Data source: Local data collection.
Process
a) Proportion of adults recognised as being in the last days of life, and the people important to them, who are given opportunities to discuss and develop an individualised care plan.
Numerator – the number in the denominator with care records that show the person who was in the last days of life, and the people important to them, were given opportunities to discuss and develop an individualised care plan.
Denominator – the number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records.
b) Proportion of adults recognised as being in the last days of life who have an individualised care plan.
Numerator – the number in the denominator with an individualised care plan.
Denominator – number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records.
c) Proportion of adults recognised as being in the last days of life whose individualised care plan was followed.
Numerator – the number in the denominator whose individualised care plan was followed.
Denominator – the number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records. National data on people who died in hospital whose individual care plan was followed are reported in the Royal College of Physicians’ End of life care audit – Dying in hospital report for England.
Outcome
Proportion of adults who feel they have choice and control over their care in the last days of life.
Data source: Local data collection based on feedback from adults in the last days of life and people important to them.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices, district nursing services, nursing homes and social care providers) ensure that individualised care plans are created for adults in the last days of life, and that staff providing care to people who are dying give them opportunities to discuss their preferences and needs and document these in the care plan.
Healthcare professionals (such as doctors, nurses, GPs, hospice doctors and district nurses) give adults in the last days of life, and the people important to them, opportunities to discuss, develop and review an individualised care plan. They ask and explore if they have any advance care plans or other existing preferences for their care, and check if they have any new or changed preferences throughout their care. They document the discussions in an individualised care plan.
Commissioners (such as clinical commissioning groups) use contractual and service specification arrangements to ensure that providers use individualised care plans to deliver and coordinate care for adults in the last days of life, and also give opportunities for the person who is dying and the people important to them to discuss, develop and review their care plans.
Adults who are in the last days of life are given chances to discuss the care and support they would like with a member of their care team. This includes their current needs, preferences, any decisions they have already made, and who else should be involved in discussing and making decisions about their care. Offers of discussions continue throughout the last days of life as people may change their minds about the type of care they want, or their needs may change. Discussions, preferences and decisions on care are recorded in an individual care plan.

Source guidance

Care of dying adults in the last days of life (2015) NICE guideline NG31, recommendations 1.2.5, 1.3.1, 1.3.2, 1.3.5 and 1.3.7

Definitions of terms used in this quality statement

Individualised care plan
A plan prepared in discussion with the dying person, the people important to them and the multiprofessional team caring for them which includes the dying person's:
  • personal goals and wishes
  • preferred care setting
  • current and anticipated care needs including:
    • preferences for symptom management and maintaining hydration
    • needs for care after death, if any are specified
  • resource needs.
[Adapted from NICE’s guideline on care of dying adults in the last days of life recommendation 1.3.5]

Equality and diversity considerations

Adults in the last days of life with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating their preferences for care. Healthcare professionals caring for adults in the last days of life should establish the person’s cognitive status, and if they have any speech, language or other communication needs; their current level of understanding; and if they would like a person important to them to be present when discussing preferences about their care. All information provided should be accessible, as far as possible, to people with cognitive problems; and people receiving information should have access to an interpreter or advocate if needed. 

Anticipatory prescribing

This quality statement is taken from the care of dying adults in the last days of life quality standard. The quality standard defines clinical best practice in the care of dying adults in the last days of life and should be read in full.

Quality statement

Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration.

Rationale

As a person approaches the last few days of their life, changes in their condition may lead to changes in existing symptoms, the emergence of new symptoms or changes in the person’s ability to take medicines to manage their symptoms (such as swallowing oral medicines). Prescribing medicines in anticipation can avoid a lapse in symptom control, which could otherwise cause distress for the person who is dying and those close to them. The drugs prescribed must be appropriate to the individualised anticipated needs of the dying person and include written clinical indications (current or anticipated), dosage and routes of administration (some drugs may be prescribed for more than one indication at different doses).

Quality measures

Structure
Evidence of local arrangements to ensure that adults in the last days of life are assessed for likely symptoms and are prescribed anticipatory medicines.
Data source: Local data collection.
Process
a) Proportion of adults recognised as being in the last days of life who have their prescribing needs assessed for symptoms likely to occur in their last days of life.
Numerator – the number in the denominator whose prescribing needs have been assessed for symptoms likely to occur in the last days of life.
Denominator – number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records.
b) Proportion of adults recognised as being in the last days of life prescribed anticipatory medicines with individualised indications for use, dosage and route of administration.
Numerator – the number in the denominator with care records that show anticipatory medicines have been prescribed with individualised indications for use, dosage and route of administration.
Denominator – number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records.
Outcome
Proportion of adults who had their key symptoms controlled in the last days of life.
Data source: Local data collection based on audits of patient care records. National data on the proportion of people who died in hospital who had key symptoms that could be present around the time of death controlled are reported in the Royal College of Physicians’ End of life care audit – Dying in hospital report for England.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices and GP practices) ensure that systems are in place to assess adults in the last days of life for likely symptoms, to prescribe anticipatory medicines for the likely symptoms using an individualised approach, and to ensure access to medicines.
Healthcare professionals (such as secondary care doctors, specialist palliative care doctors, GPs, non-medical prescribers) assess what symptoms are likely to occur for a person in the last days of life and discuss what medicines might be needed with the dying person, those important to them, and other members of the team caring for them. They prescribe anticipatory medicines appropriate to the individual anticipated needs of the dying person, including indications for use, dosage and route of administration.
Commissioners (such as clinical commissioning groups) use contractual and service specification arrangements to ensure that providers prescribe anticipatory medicines using an individualised approach for adults in the last days of life and ensure access to medicines.
Adults who are in the last days of life are prescribed medicines in advance for symptoms that might happen in the future. This avoids a delay in getting medicines that might be needed quickly when symptoms develop. These medicines are prescribed based on the individual needs of the person.

Source guidance

Care of dying adults in the last days of life (2015) NICE guideline NG31, recommendation 1.6.1

Definitions of terms used in this quality statement

Anticipatory medicines
Medication prescribed in anticipation of symptoms, designed to enable rapid relief at whatever time the patient develops distressing symptoms. Drugs prescribed in anticipation may include previous or current prescriptions, sometimes with a change in the route of administration, and newly prescribed drugs for anticipated new symptoms.
[NICE’s guideline on care of dying adults in the last days of life, full guideline and expert opinion]

Hydration

This quality statement is taken from the care of dying adults in the last days of life quality standard. The quality standard defines clinical best practice in the care of dying adults in the last days of life and should be read in full.

Quality statement

Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options.

Rationale

Drinking is a basic human need, but as death approaches the desire to take in fluid can diminish. Daily assessment enables changes in hydration status and associated symptoms to be identified, along with problems with oral hydration and any need for clinically assisted hydration. Discussing the risks and benefits of options for hydration with the person who is dying, and those important to them, allows their wishes and preferences to be taken into account. The normal route of hydration is oral, but some people who want to drink may not be able to do so, and may need support to drink or may benefit from clinically assisted hydration. Inadequate hydration can result in distressing symptoms, such as thirst and delirium, and can sometimes lead to death. However, drinking and clinically assisted hydration are not without risks; there can be swallowing problems and the risk of aspiration with drinking, and excessive assisted hydration can cause swelling and breathing difficulties.

Quality measures

Structure
a) Evidence of local arrangements to ensure that adults in the last days of life have their hydration status assessed daily.
Data source: Local data collection.
b) Evidence of local arrangements to ensure that adults in the last days of life, and the people important to them, have discussions about the risks and benefits of hydration options.
Data source: Local data collection.
Process
a) Proportion of adults recognised as being in the last days of life who have their hydration status assessed daily.
Numerator – the number in the denominator who have their hydration status assessed daily.
Denominator – the number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records.
b) Proportion of adults recognised as being in the last days of life who have a discussion about the risks and benefits of hydration options.
Numerator – the number in the denominator whose individual care plan shows that there has been a discussion about the risks and benefits of hydration options.
Denominator – the number of adults recognised as being in the last days of life.
Data source: Local data collection based on audits of patient care records and individual care plans. National data on the proportion of people who died in hospital who had a discussion regarding drinking and need for assisted forms of hydration are reported in the Royal College of Physicians’ End of life care audit – Dying in hospital report for England.
Outcome
a) Proportion of adults who felt comfortable in the last days of life.
Data source: Local data collection based on feedback from adults in the last days of life and the people important to them.
b) Proportion of bereaved people who feel satisfied that the person who has died was supported to drink or receive fluids if they wished.
Data source: Local data collection. National data on bereaved people who agreed that the person who died had support to drink or receive fluid if they wished in the last 2 days of life are reported in the Office for National Statistics’ National survey of bereaved people (VOICES).

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and district nursing services) ensure that systems are in place to ensure that adults in the last days of life have their hydration status assessed daily. They ensure that staff are aware of the risks and benefits of hydration options and discuss these with the dying person and those important to them, and capture their wishes and preferences.
Healthcare professionals (such as secondary care doctors, nurses, GPs, hospice doctors and district nurses) assess the hydration status of adults in the last days of life daily, including observations for signs and symptoms of overhydration and dehydration. They also discuss options for hydration, explaining the risks and benefits with the person who is dying and those important to them, and identify their wishes and preferences.
Commissioners (such as clinical commissioning groups) use contractual and service specification arrangements to ensure that providers assess the hydration needs of adults in the last days of life daily, discuss the risks and benefits of hydration options with the dying person and those important to them, and facilitate the provision of clinically assisted hydration in hospital and community settings.
Adults who are in the last days of life are checked every day to see if they are having problems with hydration. The different choices for hydration, such as having help to keep drinking or having fluids provided through a drip or tube, are explained, along with their risks and benefits. The person is asked which option they would prefer if they have problems staying hydrated.

Source guidance

Care of dying adults in the last days of life (2015) NICE guideline NG31, recommendations 1.4.1, 1.4.4 and 1.4.5

Definitions of terms used in this quality statement

Hydration status assessed
A clinical review to check for signs of dehydration (such as dry mouth, thirst, confusion and agitation) or overhydration (such as swelling and fluid overload), which could be carried out by a nurse or doctor. This would include objective and subjective measures (for example, hydration of oral mucosa, skin turgor, evidence of peripheral oedema or pulmonary congestion). Blood tests would not routinely form part of the assessment. However, if laboratory test results are present then they may form part of the assessment. Assessment occurs at least daily, but more frequent assessment may be needed because a person’s condition can change quickly.
[Adapted from NICE’s guideline on care of dying adults in the last days of life, full guideline and expert opinion]

Equality and diversity considerations

Adults in the last days of life with dementia, cognitive impairments, learning disabilities or language barriers may have difficulties communicating. Healthcare professionals caring for adults in the last days of life should establish the person’s cognitive status, and if they have any speech, language or other communication needs; their current level of understanding; and if they would like a person important to them to be present when discussing hydration. All information provided should be accessible, as far as possible, to people with cognitive problems; and people receiving information should have access to an interpreter or advocate if needed.

Identification

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults who are likely to be approaching the end of their life are identified using a systematic approach.

Rationale

Using a systematic approach enables healthcare professionals to identify adults who are likely to be approaching the end of their life in a timely manner. Once recognised as approaching the end of their life, people can have their needs assessed and managed, and their carers and the people important to them can also be offered support. Timely recognition gives people the opportunity to make informed decisions about their care, make plans for their future and establish their preferences for how and where they would like to be cared for and die.

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.
No routinely collected national data for these measures has been identified, therefore some examples of potential data sources have been suggested.
Structure
Evidence of local systems established to systematically identify adults who are likely to be approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on identification of adults approaching the end of their life, including the use of tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Outcome
The proportion of adults who have died with progressive life-limiting conditions who were on the palliative care register or had evidence of end of life care planning.
Numerator – the number in the denominator who were on the palliative care register or had evidence of end of life care planning.
Denominator – the number of adults who have died with progressive life-limiting conditions.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. Quality Outcomes Framework indicator PC001 requires the contractor to establish and maintain a register of all patients in need of palliative care or support irrespective of age.

What the quality statement means for different audiences

Service providers (such as care homes, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place and staff are trained to identify adults who are likely to be approaching the end of their life. Staff can access and use tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, pharmacists, GPs, specialists and nurses) are aware of, and use, local systems to identify adults who are likely to be approaching the end of their life. They use their clinical judgement and tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that use a systematic approach to identify adults who are likely to be approaching the end of their life and ensure their staff are trained to do so.
Adults who are likely to be approaching the end of their life are identified by the health and social care practitioners caring for them. This means that they can have their care and support needs assessed and start to have discussions about the care and treatment they might want in the future.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 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.
Systematic approach to identifying adults who are likely to be approaching the end of their life
Adults who are approaching the end of their life can be identified using tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool. There are other ways healthcare professionals may recognise when adults are likely to be approaching the end of their life, for example, if they are moving from disease-modifying treatment to palliative care for a life-limiting health condition or through reviews for frailty with coexisting conditions. [Adapted from NICE’s guideline on end of life care for adults, recommendation 1.1.1, and expert opinion]

Advance care planning

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life have opportunities to discuss advance care planning.

Rationale

Advance care planning gives people the opportunity to have meaningful, person-led discussions that allow them to make specific decisions and plans for their future care within a structured framework and while they have the capacity to do so. This should happen after a holistic needs assessment to ensure that it fully takes into account all of the things that are important to the person.
Advance care planning is an ongoing process, so the advance care plan may change over time, based on the person’s circumstances and wishes. It is important that the advance care plan is documented and updated during each discussion to ensure the person’s current plans are in place. Early planning for care at the end of life helps to ensure that carers, families and professionals are aware of a person's wishes while they are still fully able to communicate them.

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.
Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.
Structure
a) Evidence of local arrangements to ensure that adults approaching the end of their life have opportunities to discuss advance care planning.
Data source: Data can be collected from information recorded locally by health and social care practitioners and provider organisations, for example, from service specifications or local protocols on advance care planning.
b) Evidence of local arrangements to ensure that advance care planning for adults approaching the end of their life takes into account their holistic needs assessment.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on advance care planning.
Process
a) Proportion of adults approaching the end of their life who have documented discussions about advance care planning.
Numerator – the number in the denominator who have documented discussions about advance care planning.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. The National Audit of Care at the End of Life measures the number of people with an advance care plan on arrival at their final admission to hospital.
b) Proportion of adults approaching the end of their life whose documented advance care plan takes into account their holistic needs assessment.
Numerator – the number in the denominator whose documented advance care plan takes into account their holistic needs assessment.
Denominator – the number of adults approaching the end of their life who have a documented advance care plan.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audit of patient records.
Outcome
Satisfaction of adults approaching the end of their life with the support they receive to plan their future care.
Numerator – the number in the denominator who are satisfied with the support they receive to plan their future care.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through face-to-face discussions with adults approaching the end of their life and their carers, from local patient and carer experience surveys, and from bereavement surveys.

What the quality statement means for different audiences

Service providers (such as care homes, hospices, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place to give adults approaching the end of their life opportunities to have discussions about advance care planning. The staff carrying this out are trained to recognise when adults are approaching the end of their life and to have these person-led discussions.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, GPs, specialists and nurses) give adults approaching the end of their life opportunities to discuss advance care planning that takes into account their holistic needs assessment. They ensure that advance care planning is an ongoing process, and that advance care plans are reviewed as the person’s condition, circumstances or wishes change. They ensure that if the person does not wish to have this discussion at all, this is recorded and their wishes respected.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that that they commission services in which adults approaching the end of their life are offered advance care planning, taking into account the holistic needs assessment, on an ongoing basis as their condition, circumstances or wishes change. The services they commission ensure that their staff are trained to discuss and record advance care planning, including if the person does not wish to have the discussion at all.
Adults approaching the end of their life are given opportunities to talk to health or social care staff about the things that are important to them and use this to help plan for the care and treatment they want in the future. As their wishes may change over time, adults approaching the end of their life will be able to have these conversations on a number of occasions, if they want to, to ensure their plans reflect their current wishes. If they do not feel ready to have this discussion, the person can have this discussion at a later date. If they do not wish to have this discussion at all, this is recorded and their wishes respected.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 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.
Advance care planning
Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.
An advance care planning discussion might include:
  • the individual's concerns and wishes
  • their important values or personal goals for care
  • their understanding about their illness and prognosis
  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.
Advance care planning is one part of the process of personalised care and support planning.
Holistic needs assessment
An assessment that considers all aspects of a person's wellbeing, their spiritual and health and social care needs. Undertaking a holistic needs assessment ensures that the person's goals and wishes, concerns and problems are identified so that support can be provided to address them. There are validated tools that can be used to support the assessment process. [NICE’s guideline on end of life care for adults, terms used in this guideline and expert opinion]

Equality and diversity considerations

A person’s culture and religious beliefs may have a significant influence on whether they wish to discuss end of life and advance care planning. Practitioners need to approach these discussions in a sensitive way. If people do not want to speak about their future needs and care arrangements, this should be respected and clearly recorded.
Adults approaching the end of their life should be supported to discuss advance care planning in a meaningful way. They should be provided with information in a format that they can easily understand themselves, or with support, so they can communicate effectively with health and social care practitioners. The information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and it should be culturally and age appropriate, taking into account the person’s level of health literacy. People should have access to an interpreter or advocate if needed.
For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.

Coordinated care

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life receive care that is coordinated between health and social care practitioners within and across different services and organisations.

Rationale

Adults approaching the end of their life are likely to receive planned and emergency care from a range of services and in a number of settings. Coordination of these services is necessary to ensure that there is a shared understanding of the person’s holistic needs and that the person receives end of life care that meets their specific needs and personal preferences. Coordination also leads to care being provided more quickly, as it is needed.
Information sharing across organisations will help to ensure that adults approaching the end of their life do not have to repeatedly provide information that can be shared between services. Coordination will help to ensure that people are not over-burdened with appointments and home visits. Appointments can be reviewed and optimised if possible, for example, coordinating appointments to avoid multiple visits.

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.
Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.
Structure
a) Evidence of local processes to coordinate end of life care.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from service specifications and joint working agreements between health and social care. This could include processes to ensure appointments with different specialities are on the same day to avoid the person making repeated visits.
b) Evidence of local arrangements for relevant information about adults approaching the end of their life to be shared with the members of the multipractitioner team involved in their care.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local information-sharing protocols and electronic information-sharing systems.
Process
a) Proportion of adults approaching the end of their life whose advance care plan is shared with the practitioners involved in their care.
Numerator – the number in the denominator whose advance care plan is shared with the practitioners involved in their care.
Denominator – the number of adults approaching the end of their life who have an advance care plan.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records.
b) Proportion of adults approaching the end of their life whose care is coordinated through the multipractitioner team.
Numerator – the number in the denominator whose care is coordinated through the multipractitioner team.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records and of multipractitioner team and multidisciplinary team meetings.
Outcome
a) Proportion of adults approaching the end of their life who are cared for in their preferred place.
Numerator: the number in the denominator who are cared for in their preferred place.
Denominator: the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through face-to-face discussions with adults approaching the end of their life and their carers, local patient and carer experience surveys and bereavement surveys.
b) Proportion of adults who were identified as approaching the end of their life who had an unplanned admission to hospital.
Numerator: the number in the denominator who had an unplanned admission to hospital.
Denominator: the number of adults identified as approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through local audit of hospital admissions data and patient records, local patient and carer experience surveys and bereavement surveys.
c) Proportion of adults who were identified as approaching the end of their life who died in their preferred place.
Numerator: the number in the denominator who died in their preferred place.
Denominator: the number of adults identified as approaching the end of their life who have died.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records, local carer experience surveys and bereavement surveys. The National Audit of Care at the End of Life measures the number of people who have a documented preferred place of death on their final admission.

What the quality statement means for different audiences

Service providers (such as care homes, hospices, ambulance services, mental health care, social care, community care, primary care, secondary care and tertiary care) ensure that electronic information-sharing systems are in place so that all practitioners providing care can access up-to-date records and advance care plans. They also ensure that systems are in place so that the multipractitioner team can coordinate care, including coordinating appointments, for people who are approaching the end of their life.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, occupational therapists, pharmacists, paramedics, GPs, specialists and nurses) work with other members of the multipractitioner team to coordinate the care of adults who are approaching the end of their life. They ensure that all relevant information is added to the person’s record and advance care plan so that it can be accessed by other practitioners involved in the person’s care when needed.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that the services they commission have electronic information-sharing systems in place to allow all practitioners providing care to access the records of adults approaching the end of their life. This can be done, for example, by enabling existing IT systems or by introducing a specific system such as the electronic palliative care coordination system (EPaCCS). They also ensure that the services provide multipractitioner team care and care coordination for adults approaching the end of their life.
Adults approaching the end of their life are cared for by a team of health and social care practitioners who work together to coordinate their care and make sure that important information is passed on. This means that the person does not need to keep providing the same information to different people caring for them or attend several appointments on different days that could take place in one visit.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 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.
Carer
A carer is someone who helps another person, usually a relative, partner or friend, in their day-to-day life. This term does not refer to someone who provides care professionally or through a voluntary organisation. A young carer is aged under 18. [NICE’s guideline on end of life care for adults]
Multipractitioner team
A multipractitioner team is a group of practitioners from different clinical professions, disciplines, organisations and agencies who together make decisions on the recommended treatment for individual patients. [NICE’s guideline on end of life care for adults, terms used in this guideline]

Out-of-hours care

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life and their carers have access to support 24 hours a day, 7 days a week.

Rationale

Adults approaching the end of their life may need support from healthcare services at any time. Being able to access support, including specialist palliative care, as soon as the need arises can help to prevent unnecessary distress to the person approaching the end of their life and their carers by preventing unnecessary visits to accident and emergency departments and hospital admissions. It is also beneficial and supportive for carers to know that they can obtain advice at any time of day or night, and this can help to reduce their concerns and anxieties.

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.
Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.
Structure
a) Evidence of local arrangements to ensure that adults approaching the end of their life have access to support 24 hours a day, 7 days a week.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local service specifications for end of life care and staff rotas.
Process
a) Proportion of adults approaching the end of their life who have access to a healthcare professional 24 hours a day, 7 days a week.
Numerator – the number in the denominator who have access to a healthcare professional 24 hours a day, 7 days a week.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
b) Proportion of adults approaching the end of their life who have access to an out-of-hours end of life care advice line.
Numerator – the number in the denominator who have access to an out-of-hours end of life care advice line.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
c) Proportion of adults approaching the end of their life who have access to an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
Numerator – the number in the denominator who have access to an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
Outcome
a) Emergency hospital admissions in the 3 months before death.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records and Public Health England’s Palliative and end of life care data.
b) Satisfaction of the person approaching the end of their life, and their carers if appropriate, with the support available.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local patient and carer experience surveys, bereavement surveys and NHS Digital’s Personal social services survey of adult carers.

What the quality statement means for different audiences

Service providers (such as hospices, community care, primary care, secondary care and tertiary care) ensure that services are in place to support adults approaching the end of their life and their carers 24 hours a day, 7 days a week. This includes ensuring that a healthcare professional who can access the person’s records and advance care plan is available, and that they have access to equipment out of hours, for example, specialist beds and oxygen. It also includes providing an advice line and an out-of-hours pharmacy service with access to end of life care medications.
Health and social care practitioners (such as social workers, mental health clinicians, pharmacists, GPs, specialists and nurses) ensure that adults approaching the end of their life and their carers know about the services that are available to them 24 hours a day, 7 days a week and know how to contact them. They ensure that adults approaching the end of their life and their carers understand how these services can support them. Practitioners can also access the support services to assist adults approaching the end of their life and their carers.
Commissioners (such as clinical commissioning groups and NHS England) ensure that they commission services that are available 24 hours a day, 7 days a week for adults approaching the end of their life and their carers, including an advice line and access to healthcare professionals and pharmacy services.
Adults approaching the end of their life and their carers can access support when they need it. They have access to an advice line, healthcare professionals and a pharmacy service that has medicines to manage their symptoms at any time of the day or night.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 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.
Access to out-of-hours support
This includes:
  • a healthcare professional available 24 hours a day, 7 days a week, who can access the person's records and advance care plan, and make informed decisions about changes to care
  • an out-of-hours end of life care advice line
  • an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
[Adapted from NICE’s guideline on end of life care for adults, recommendation 1.12.1]

Equality and diversity considerations

Adults approaching the end of their life and their carers should be provided with information about the services available to them in a format that they can easily understand themselves, or with support, so they can communicate effectively with health and social care practitioners. The information should be in a format that suits their needs and preferences. The information and the services should be accessible to people who do not speak or read English, and it should be culturally appropriate and age appropriate, taking into account the person’s level of health literacy. People should have access to an interpreter or advocate if needed.
For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.

Support for carers

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Carers providing end of life care to people at home are supported to access local services that can provide assistance.

Rationale

Practical and emotional support for carers is crucial to help them continue caring for the person approaching the end of their life at home. It is important for their own wellbeing, helping to reduce their levels of stress and illness. It can also help to prepare carers for the death of the person they are caring for and help to ensure they receive bereavement support.

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.
Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.
Structure
a) Evidence that local services are in place to support carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from commissioning agreements and local contracts.
b) Evidence that carers can access support services.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service level agreements and pathways of carer support.
Process
Proportion of carers providing end of life care to people at home who are supported to access local services that can provide assistance.
Numerator – the number in the denominator who are supported to access local services that can provide assistance.
Denominator – the number of carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local carer experience surveys and audits of referrals to social prescribing and community support.
Outcome
a) Proportion of carers providing end of life care to people at home who are satisfied with the support they receive.
Numerator: the number in the denominator who are satisfied with the support they receive.
Denominator: the number of carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local carer experience surveys. The NHS Digital’s Personal social services survey of adult carers collects data on the satisfaction of all carers with the support they receive.
b) Carers’ quality of life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from NHS Digital’s Personal social services survey of adult carers and local carer experience surveys. A carer-reported quality-of-life score based on this survey data is included in NHS Digital’s Measures from the Adult Social Care Outcomes Framework.

What the quality statement means for different audiences

Service providers (community care, mental health care, primary care, secondary care and tertiary care services, hospices, social care and voluntary services) ensure that systems and services are in place to provide practical and emotional support for the carers of adults approaching the end of their life. This includes providing end of life care at home, help to use equipment and adaptations, emotional support, respite care and any additional help they may need at home. They can also offer support when the person being cared for is in hospital.
Health, social care and voluntary sector practitioners (such as social workers, mental health clinicians, pharmacists, occupational therapists, GPs, specialists, nurses and voluntary services workers) are aware of local services that can support carers of adults approaching the end of their life and refer or help carers access services that they may need. Practitioners within these services provide carers with emotional and practical support to care for the adult approaching the end of their life, for example, providing end of life care at home and help to use equipment and adaptations. They can also offer support when the person being cared for is in hospital.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that provide emotional and practical support to carers of adults approaching the end of their life being cared for at home.
Carers supporting people at home at the end of their life can access practical and emotional support locally. This can include support from hospices, palliative home care, respite care and practical support to use equipment or adapt the home to help with the person’s care. They may also be able to access support when the person being cared for is in hospital.

Source guidance

Supporting adult carers. NICE guideline NG150 (2020), recommendation 1.9.12

Definitions of terms used in this quality statement

Carer
A carer is someone who helps another person, usually a relative, partner or friend, in their day-to-day life. This term does not refer to someone who provides care professionally or through a voluntary organisation. A young carer is aged under 18. [NICE’s guideline on end of life care for adults]
Local services that can provide assistance
These are services provided locally, including from local hospices, to support carers when providing end of life care at home. They can include:
  • replacement care (care that replaces the care normally given by a regular carer)
  • palliative home care
  • practical support, for example, to use equipment and adaptations
  • additional help in the home
  • support if the person they care for is admitted to hospital
  • emotional support.
[Adapted from NICE’s guideline on supporting adult carers, recommendation 1.9.12]

Equality and diversity considerations

In some cases, the carer may be a younger or older person or have a disability or a significant health condition themselves, and this needs to be taken into account when support is being considered and provided.
If the adult approaching the end of their life also has a learning disability their carer may also need additional specialist support which should be considered by the practitioner providing care.
The carer’s culture and religious beliefs may have a significant influence on whether they wish to be involved in some of the discussions about end of life care and advance care planning for the person they care for. The practitioners need to approach these discussions in a sensitive way. If carers do not want to speak about the future needs and care arrangements for the person they care for, this should be respected and clearly recorded.
Carers should be provided with information on support services in a format that they can easily read and understand themselves, or with support, so they can communicate effectively with health, social care and community practitioners. The information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and be culturally and age appropriate, taking into account the person’s level of health literacy. People should have access to an interpreter or advocate if needed.
For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.

Advance care plan

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Infants, children and young people with a life-limiting condition and their parents or carers are involved in developing an advance care plan.

Rationale

Advance care plans can help people with a life-limiting condition plan for and receive care at the end of their life that is in line with their wishes. Talking with the child or young person, and their parents or carers, at appropriate stages allows them to influence the care that they receive and improves their experience of care. This includes involving parents and carers when a potentially life-limiting condition is diagnosed in a baby during pregnancy. Advance care plans should be appropriate to the circumstances and continuously updated throughout the delivery of care and support.

Quality measures

Structure
a) Evidence of local arrangements to ensure that parents of babies diagnosed with a life-limiting condition during pregnancy are involved in developing an advance care plan before the birth.
Data source: Local data collection, for example, service protocol.
b) Evidence of local arrangements to ensure that the parents or carers of infants with a life-limiting condition are involved in developing an advance care plan.
Data source: Local data collection, for example, service protocol.
c) Evidence of local arrangements to ensure that children and young people with life-limiting conditions and their parents or carers are involved in developing an advance care plan.
Data source: Local data collection, for example, service protocol.
Process
a) Proportion of pregnancies with a diagnosis of a life-limiting condition in the baby in which the parents are involved in developing an advance care plan before birth.
Numerator – the number in the denominator in which parents are involved in developing an advance care plan before birth.
Denominator – the number of pregnancies with a diagnosis of a life-limiting condition in the baby.
Data source: Local data collection based on audits of patient care records.
b) Proportion of parents or carers of infants with a life-limiting condition who are involved in developing an advance care plan.
Numerator – the number in the denominator who are involved in developing an advance care plan.
Denominator – the number of parents or carers of infants with a life-limiting condition.
Data source: Local data collection based on audits of patient care records.
c) Proportion of children and young people with a life-limiting condition who are involved in developing their advance care plan.
Numerator – the number in the denominator who are involved in developing their advance care plan.
Denominator – the number of children and young people with a life-limiting condition.
Data source: Local data collection based on audits of patient care records.
Outcome
Level of satisfaction with care in infants, children and young people with a life-limiting condition and their parents and carers.
Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and carers, and parents or carers of infants with a life-limiting condition.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices and GP practices) ensure that systems are in place for children and young people with a life-limiting condition and their parents or carers to be involved in developing an advance care plan (for example, using the Child and young person’s advance care plan collaborative resource). Parents and carers of infants with life-limiting conditions should be involved in developing a plan and parents of babies diagnosed with a life-limiting condition during pregnancy should be involved in developing a plan before the birth.
Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) involve children and young people with a life-limiting condition and their parents or carers in developing an advance care plan. They involve parents and carers of infants in developing an advance care plan and ensure that parents of babies with a life-limiting condition diagnosed during pregnancy are involved in developing a plan before the birth.
Commissioners (clinical commissioning groups) ensure they commission services that support children and young people with life-limiting conditions and their parents or carers to be involved in developing advance care plans. Services should also support parents or carers of infants with life-limiting conditions to be involved. They should support parents of babies diagnosed with a life-limiting condition during pregnancy to be involved in developing care plans before the birth.
Babies, children and young people with a condition that may shorten their life have an advance care plan that they and their parents or carers have helped develop. This involves talking about how they wish to be cared for at the end of their life. This may sometimes be done before a baby is born if the condition is diagnosed during pregnancy.

Source guidance

Definitions of terms used in this quality statement

Advance care plan
A formal care plan that includes details about the child or young person's condition, decisions made with them and their parents or carers (for example, about managing symptoms), and their wishes and ambitions. This plan is a core element of their palliative care.
Parents or carers
Parents or carers refers to the people with parental responsibility for a child or young person.

Equality and diversity considerations

Children and young people with life-limiting conditions who have a learning disability may have difficulties understanding information provided to them. Healthcare practitioners caring for children and young people with a life-limiting condition should establish if the person has a learning disability and tailor any information accordingly. All support provided should be accessible, as far as possible, to people with learning disabilities.

Named medical specialist

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Rationale

Assigning a named medical specialist to an infant, child or young person with a life-limiting condition can improve care. A named medical specialist can coordinate care and provide information and support, be a consistent contact to ensure that the infant’s, child’s or young person’s needs are taken into account. The named medical specialist may change if the care that is needed or the care setting changes.

Quality measures

Structure
Evidence of local arrangements to ensure that named medical specialists are assigned to infants, children and young people with a life-limiting condition to lead and coordinate their care.
Data source: Local data collection.
Process
Proportion of infants, children and young people with a life-limiting condition who have a named medical specialist.
Numerator – the number in the denominator who have a named medical specialist.
Denominator – the number of infants, children and young people with a life-limiting condition.
Data source: Local data collection based on audits of patient care records.
Outcome
Level of satisfaction with end of life care in children and young people with a life-limiting condition.
Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and carers and other people important to them.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that a named medical specialist is available to lead and coordinate the care of infants, children and young people with a life-limiting condition.
Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) are aware of care pathways to ensure that infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.
Commissioners (NHS England and clinical commissioning groups) ensure that they commission services in which infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.
Babies, children and young people with a condition that may shorten their life have a healthcare professional who is their main contact. This person leads and coordinates their care as well as providing ongoing information and support.

Source guidance

Definitions of terms used in this quality statement

Named medical specialist
Named medical specialists may include:
  • specialists in the child’s underlying condition
  • consultants and community paediatricians
  • palliative care consultants
  • hospice medical leads.
[Expert opinion]

Emotional and psychological support

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Infants, children and young people with a life-limiting condition and their parents or carers are given information about emotional and psychological support, including how to access it.

Rationale

Infants, children and young people with life-limiting conditions can face a wide range of stressful and distressing circumstances, particularly when they become aware that their life will be shortened. Emotional support for children and young people can help them cope with their distress and build resilience. This can help reduce the risk of developing psychological problems and enhance quality of life. Information should also be provided to parents and carers, especially those with infants and children who are too young to understand the information.

Quality measures

Structure
Evidence of local arrangements to ensure that information about emotional and psychological support for infants, children and young people, including how to access it, is available for infants, children and young people with a life-limiting condition and their parents or carers.
Data source: Local data collection.
Process
Proportion of children and young people with a life-limiting condition and their parents or carers who are given information about emotional and psychological support, including how to access it.
Numerator – the number in the denominator who are given information about emotional and psychological support, including how to access it.
Denominator – the number of children and young people with a life-limiting condition and their parents or carers.
Data source: Local data collection based on audits of patient care records. Receipt of information can be measured at key points, for example, at diagnosis, during regular reviews, and at discharge from hospital.
Outcome
Level of satisfaction of infants, children and young people with a life-limiting condition, and their parents or carers, with information they are given about emotional and psychological support.
Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and carers.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that information about emotional and psychological support for children and young people, including how to access it, is available for infants, children and young people with a life-limiting condition and their parents or carers. They also consider how support can be provided to siblings.
Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) give children and young people with a life-limiting condition, and their parents or carers, information about emotional and psychological support for children and young people, including how to access it. They also consider how support can be provided to siblings.
Commissioners (clinical commissioning groups) ensure that the services they commission include psychological support for children and young people with life-limiting conditions. They also consider how the services they commission can support siblings.
Babies, children and young people with a condition that may shorten their life are given information that they and their parents can use to let them know what emotional and psychological support is available and how to get it. Brothers and sisters are also considered for support.

Source guidance

Definitions of terms used in this quality statement

Emotional and psychological support
The provision of psychological and psychotherapeutic interventions and therapies delivered or directly supervised by qualified psychological practitioners or psychotherapists with professional accreditation and registration. Practitioners providing interventions for families affected by childhood life-limiting conditions need to be skilled in both the evidence-based therapeutic approach and in adapting therapies to themes of medical decision-making, loss, death, dying, bereavement and early intervention to develop resilience and supportive family relationships.

Equality and diversity considerations

Children and young people with life-limiting conditions who have a learning disability may have difficulties understanding information provided to them. Healthcare practitioners caring for children and young people with a life-limiting condition should establish if the person has a learning disability and tailor any information accordingly. All support provided should be accessible, as far as possible, to people with learning disabilities.

Specialist paediatric palliative care team

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Infants, children and young people with a life-limiting condition are cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team.

Rationale

It is important to manage distressing symptoms, in particular pain and agitation, to ensure that infants, children and young people approaching the end of life have the best quality of life possible. Being cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team ensures necessary assessments are carried out and treatment can be provided to resolve any distressing symptoms as quickly as possible.

Quality measures

Structure
Evidence of local arrangements to ensure multidisciplinary teams involved in the care of infants, children and young people with life-limiting conditions include input from the specialist paediatric palliative care team.
Data source: Local data collection.
Process
Proportion of infants, children and young people with life-limiting conditions cared for by a multidisciplinary team that includes input from a specialist paediatric palliative care team.
Numerator – the number in the denominator cared for by a multidisciplinary team that includes input from a specialist paediatric palliative care team.
Denominator – the number of infants, children and young people with life-limiting conditions.
Data source: Local data collection.
Outcome
Level of satisfaction with end of life care in infants, children and young people with life-limiting conditions, and their parents or carers.
Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents or carers and other people important to them.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that protocols are in place for multidisciplinary teams caring for infants, children and young people with life-limiting conditions to include members of the specialist paediatric palliative care team.
Health and social care practitioners (members of the multidisciplinary team such as secondary care doctors, nurses, GPs and care workers) involve the specialist paediatric palliative care team when infants, children and young people are approaching the end of life and have unresolved distressing symptoms.
Commissioners (clinical commissioning groups) ensure that the services they commission have arrangements in place for infants, children and young people with life-limiting conditions to be cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team.
Babies, children and young people with a condition that may shorten their life are cared for by a team that includes specialists in caring for children and young people at the end of life. The team can provide treatment quickly to help with the symptoms and make sure the infant, child or young person is as comfortable as possible.

Source guidance

Definitions of terms used in this quality statement

Specialist paediatric palliative care team
The specialist paediatric palliative care team should include as a minimum:
  • a paediatric palliative care consultant
  • a nurse with expertise in paediatric palliative care
  • a pharmacist with expertise in specialist paediatric palliative care
  • experts in child and family support who have experience in end of life care (for example, in providing social, practical, emotional, psychological and spiritual support).

Support for grief and loss for parents or carers

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Parents or carers of infants, children and young people approaching the end of life are offered support for grief and loss when their child is nearing the end of their life and after their death.

Rationale

Support for grief and loss can help parents or carers as well as siblings to cope before and after the death of their child. It can help with emotional and anxiety and depression, and relationship issues, and provide information on how to talk to other family members and tell them what has happened. Support for grief and loss can also provide advice on care following death, including information about post-mortems.

Quality measures

Structure
Evidence of local arrangements to provide support for grief and loss to parents or carers when infants, children and young people are approaching the end of life and after their death.
Data source: Local data collection.
Process
a) Proportion of parents or carers of infants, children and young people with a life-limiting condition, who had a plan for support with grief and loss before the death of the infant, child or young person.
Numerator – the number in the denominator whose parents and carers had a plan for support with grief and loss before the death of the infant, child or young person.
Denominator – the number of infants, children and young people with a life-limiting condition who have died.
Data source: Local data collection based on audits of patient care records.
b) Proportion of parents or carers of infants, children and young people with a life-limiting condition who have a plan for support with grief and loss after the death of the infant, child or young person.
Numerator – the number in the denominator who have a plan for support with grief and loss after the death of the infant, child or young person.
Denominator – the number of parents or carers of infants, children and young people with a life-limiting condition who have died.
Data source: Local data collection based on audits of patient care records.
Outcome
Level of satisfaction with grief and loss support in parents or carers of infants, children and young people receiving end of life care.
Data source: Local data collection based on feedback from the parents and carers of children and young people who have died following care for a life-limiting condition.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that systems are in place to offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how support can be provided to siblings.
Health and social care practitioners (such as secondary care doctors, nurses, GPs and community nurses) are aware of referral pathways to services that offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider the support needs of siblings.
Commissioners (clinical commissioning groups) ensure that they commission services that include grief and loss support for parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how the services they commission can support siblings.
Parents or carers of babies, children and young people are offered grief and loss support when their child is nearing the end of their life and after their death. The brothers and sisters of children nearing the end of life may also benefit from support for grief and loss.

Source guidance

Definitions of terms used in this quality statement

Grief and loss support
Therapies aimed at supporting a person anticipating or experiencing the loss of a loved one.
[Expert opinion]

Equality and diversity considerations

Parents and carers of infants, children and young people with a life-limiting condition may have a learning disability that means they have difficulties understanding information given to them about grief and loss support. Healthcare practitioners caring for infants, children and young people with a life-limiting condition should establish if the child’s parents or carers have any learning disabilities. All support provided should be accessible, as far as possible, to people with learning disabilities.

Care at home

This quality statement is taken from the end of life care for infants, children and young people quality standard. The quality standard defines clinical best practice for end of life care for infants, children and young people and should be read in full.

Quality statement

Infants, children and young people approaching the end of life and being cared for at home have 24-hour access to both children’s nursing care and advice from a consultant in paediatric palliative care.

Rationale

Home-based care for infants, children and young people approaching the end of life can be preferable to hospital care and has been linked with improved patient experience. However, to ensure they receive the right care and have the highest quality of life possible, children’s nursing care and advice from a consultant in paediatric palliative care should be available at all times, if needed. The advice from the consultant in paediatric palliative care could be provided in person or by phone.

Quality measures

Structure
a) Evidence of local arrangements to ensure that children’s nursing care is available 24 hours a day for infants, children and young people approaching the end of life who are being cared for at home.
Data source: Local data collection.
b) Evidence of local arrangements to ensure that advice from a consultant in paediatric palliative care is available 24 hours a day for infants, children and young people approaching the end of life who are being cared for at home.
Data source: Local data collection.
Process
a) Proportion of infants, children and young people approaching the end of life and being cared for at home who have 24-hour access to children’s nursing care.
Numerator – the number in the denominator who have 24-hour access to children’s nursing care before their death.
Denominator – the number of infants, children and young people approaching the end of life and being cared for at home.
Data source: Local data collection based on audits of patient care records.
b) Proportion of infants, children and young people approaching the end of life and being cared for at home who have 24-hour access to advice from a consultant in paediatric palliative care.
Numerator – the number in the denominator who have 24-hour access to advice from a consultant in paediatric palliative care before their death.
Denominator – the number of infants, children and young people approaching the end of life and being cared for at home.
Data source: Local data collection based on audits of patient care records.
Outcome
Proportion of infants, children and young people who had the option of being cared for at home when approaching the end of life.
Data source: Local data collection based on feedback from children and young people, and from the parents or carers of infants, in the last days of life.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that systems are in place for infants, children and young people approaching the end of life and being cared for at home to have 24-hour access to children’s nursing care and advice from a consultant in paediatric palliative care.
Health and social care practitioners (such as secondary care doctors, nurses, GPs and community nurses) ensure that infants, children and young people approaching the end of life and being cared for at home are given contact details for children’s nursing care and advice from a consultant in paediatric palliative care, available 24 hours a day.
Commissioners (clinical commissioning groups) ensure that they commission services that provide 24-hour paediatric palliative care services at home for children and young people approaching the end of life, which include 24-hour access to children’s nursing care and advice from a consultant in paediatric palliative care.
Babies, children and young people who are nearing the end of their life and being cared for at home can have nursing care or advice from a specialist at any time of day or night, if they need it.

Source guidance

Definitions of terms used in this quality statement

Children’s nursing care
The children’s nurse should be a nurse who holds a recognised qualification in caring for children and who has the right knowledge, skill and competency across the child/young person's care pathway.

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Use the knowledge gained from the assessments and other information gathered from the multiprofessional team, the person and those important to them, to help determine whether the person is nearing death, deteriorating, stable or improving.
Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.
An advance care planning discussion might include:
  • the individual's concerns and wishes
  • their important values or personal goals for care
  • their understanding about their illness and prognosis
  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.
Advance care planning is one part of the process of personalised care and support planning.
Personalised care and support planning is a series of facilitated conversations in which the person, or those who know them well, actively participates to explore the management of their health and wellbeing within the context of their whole life and family situation.
Personalised care and support planning is key for people receiving health and social care services. It is an essential tool to integrate the person's experience of all the services they access so they have one joined-up plan that covers their health and wellbeing needs.
Personalised care and support planning is not to be confused with personalised medicine. The latter is the approach to tailor treatments to people's individual health needs based on their biological risk factors and predictors of response to treatments.
People in the final weeks and months of life, although for people with some conditions, this could be months or years. It includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 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.
These may include family members and anyone else who the person regards as significant, such as a partner or close friend. It may be someone who the person wants involved in discussions about their care. It is important that health and social care practitioners understand that assumptions should not be made when asking about the people important to the person, for example, assuming everyone is in a heterosexual relationship.
These may include family members and anyone else who the person regards as significant, such as a partner or close friend. It may be someone who the person wants involved in discussions about their care. It is important that health and social care practitioners understand that assumptions should not be made when asking about the people important to the person, for example, assuming everyone is in a heterosexual relationship.
These may include family members and anyone else who the person regards as significant, such as a partner or close friend. It may be someone who the person wants involved in discussions about their care. It is important that health and social care practitioners understand that assumptions should not be made when asking about the people important to the person, for example, assuming everyone is in a heterosexual relationship.
These may include family members and anyone else who the person regards as significant, such as a partner or close friend. It may be someone who the person wants involved in discussions about their care. It is important that health and social care practitioners understand that assumptions should not be made when asking about the people important to the person, for example, assuming everyone is in a heterosexual relationship.
Shared decision making is when health and social care professionals and patients work together. This puts people at the centre of decisions about their own treatment and care. During shared decision making, it's important that:
  • care or treatment options are fully explored, along with their risks and benefits
  • different choices available to the patient are discussed
  • a decision is reached together with a health and social care professional.

Glossary

(a formal care plan that includes details about the child or young person's condition, decisions made with them and their parents or carers [for example about managing symptoms], and their wishes and ambitions; this plan is a core element of their palliative care)
(someone who helps another person, usually a relative, partner or friend, in their day-to-day life [this term does not refer to someone who provides care professionally or through a voluntary organisation])
(considers all aspects of a person's wellbeing, their spiritual and health and social care needs; undertaking a holistic needs assessment ensures that the person's concerns and problems are identified so that support can be provided to address them [there are validated tools that can be used to support the assessment process])
(the phase of illness after a change in the person's condition that means they are likely to die within weeks)
(the phase of illness after a change in the person's condition that means they are likely to die within weeks)
(consider all aspects of a person's wellbeing, their spiritual and health and social care needs; undertaking holistic needs assessments ensure that the person's concerns and problems are identified so that support can be provided to address them [there are validated tools that can be used to support the assessment process])
(an expert [with any or no religious beliefs] in religious, spiritual and or pastoral care for patients, families and staff, a chaplain also provides education and advice to organisations or trusts; chaplains work to a nationally recognised code of conduct and a set of standards and competencies)
(a member of the multidisciplinary team who assumes overall clinical responsibility for the delivery of care to a patient; they usually are a senior doctor or senior nurse)
(experts [with any or no religious beliefs] in religious, spiritual and or pastoral care for patients, families and staff, chaplains also provide education and advice to organisations or trusts; they work to a nationally recognised code of conduct and a set of standards and competencies)
(members of the multidisciplinary team who assume overall clinical responsibility for the delivery of care to a patient; they usually are senior doctors or senior nurses)
(aged 0–12 years, this includes neonates and infants)
(a group of practitioners from different clinical professions, disciplines, organisations and agencies who together make decisions on the recommended treatment for individual patients)
(aged 0–12 years, this includes neonates and infants)
(when the child or young person is likely to die in hours or days)
(commissioners, planners and service providers responsible for overseeing local health and social care provision and accountable for public service outcomes)
(in this interactive flowchart, end of life care for a child or young person includes the care and support given in the final days, weeks and months of life, and the planning and preparation for this)
(all organisations [including primary, secondary, tertiary, ambulance and hospice services] that provide NHS services for people approaching the end of their life)
(a condition that is expected to result in an early death, either for everyone with the condition or for a specific person)
(conditions that are expected to result in an early death, either for everyone with the condition or for a specific person)
(someone aged under 18 who helps another person, usually a relative, partner or friend, in their day-to-day life [this term does not refer to someone who provides care professionally or through a voluntary organisation])
(babies aged up to 28 days)
(baby aged up to 28 days)
(an approach to care covering physical, emotional, social and spiritual support, which focuses on improving the quality of life for the child or young person and supporting their family members or carers, and includes managing distressing symptoms, providing respite care, and support with death and bereavement)
(planning for end of life care while taking account of the often unpredictable course of life limiting conditions; it involves making multiple plans for care, and using the one that best fits the child or young person's circumstances at the time)
(aged 13–17 years)
(aged 13–17 years)

Paths in this pathway

Pathway created: March 2017 Last updated: October 2021

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